.... Mattie's Blog and His Fight Against Osteosarcoma (April 4, 2002 - September 8, 2009)

Monday, January 30, 2012

2012-01-30T18:00:00.001-05:00

Monday, January 20, 2012

Tonight's picture was taken in February of 2009. This photo I realize may need explanation because at first glance you are most likely confused by what you are seeing. Dressed in a yellow gown, blue mask, and pink basin on her head was Linda, Mattie's Childlife Specialist. Looking at Linda were Mattie and Anna (Mattie's physical therapist). What was happening was a show down with water guns. Linda was dressed up in this get-up to inspire Mattie to shoot her with water. She was very successful. Certainly Anna could have just assigned Mattie exercises to do with his arms to try to strengthen them after his limb salvaging surgeries. But both she and Linda knew this would never have worked for Mattie. Mattie needed to be stimulated and engaged, and through these interactions he landed up exercising and getting rehabilitated. Physical therapy was painful and hard for Mattie, most likely not only because he had surgeries and was undergoing chemotherapy, but because unbeknownst to us, his cancer was aggressively spreading all over his body. When I think back on what we asked Mattie to do, he amazes me. Since most of us wouldn't have even gotten out of bed if we felt the way he did.

Quote of the day: The door of opportunity won't open unless you do some pushing. ~ Anonymous

Christine (my friend) has been trying to introduce me to her friend for months. Today, thanks to some "pushing" as the quote implies, I had the opportunity to have breakfast with Christine and meet her friend. Her friend is a parent at Mattie's school, who read my blog while Mattie was battling cancer. We had never met before today since her son is a year younger than Mattie. However, like me this woman has an only child, who is a son. In addition, she is a mental health professional as well, and these two commonalities just really caught my attention. Christine's son, Campbell, and Mattie were very close friends in kindergarten and in some respects I am happy to hear that Campbell was able to make another special connection with this lady's son.

We talked about all sorts of things at breakfast and I had the opportunity to reflect on what life was like living in the hospital for 14 months. Rarely do people reflect on this aspect of my life anymore, nor do they talk to me about it and ask me questions. I am not sure why? Perhaps those days are viewed to be in the past, or maybe because they were so horrible then, that people do not want to resurrect the pain. Nonetheless, talking about that time in the hospital is real. It is a part of who I am, and when I see the reactions on the faces I am telling my stories to, I then realize and understand that.... yes this indeed was a nightmare and it gives me insights to why I feel the way I do on certain days. I had the opportunity to retell some of my experiences with doctors, radiology techs, and pre-surgery meetings. For me no matter how much time lapses, I can recall the stories and the scenes like they happened yesterday.

I was telling these ladies today about one of the techs at Georgetown University Hospital. This particular tech I found out disliked Mattie. She found him to be spoiled and difficult, and really disliked coming to his room to give him mobile x-rays (at 2am no less!). She felt he was spoiled because he got a lot of attention from other hospital personnel and she felt it was not merited. As Mattie's status turned terminal, this same tech happened to see Mattie toward the end stages of his life, and she was mortified by what she saw. By that point Mattie was ravaged by cancer and was having trouble breathing. Mattie died a horrific death, death by suffocation in a way. Make a long story short, after seeing what Mattie endured, she reflected on his time at the hospital, and felt deep remorse. I was told that she felt horrible guilt for being so judgmental. Though I was saddened to hear all of this, it is my hope that she gained some perspective from Mattie, and will never be harboring these feelings toward another sick child again.

Christine's friend and I talked about the benefits of therapy and therapy for dealing with grief in particular. I suppose one of the downfalls about being a mental health professional, is I am quite aware of what therapy can and can't do. I know in my particular case NOTHING and NO ONE can possibly repair the reason for my loss, therefore I believe I have to process this and handle this in my own way and time. As Christine's friend said to me today... "you know too much." She had my laughing, but in a way she is right, knowledge in a particular field can sometimes provide greater challenges than benefits.

I spent the rest of the day immersed in Foundation items, jumping from Walk related items to Symposium related items, and then to conference calls. I had the pleasure of talking to my friend and colleague, Denise, today about the symposium. She brainstormed some symposium ideas with me, and I appreciated hearing her insights and strategies for marketing the symposium to the community. It is my hope within the next week or so to finalize aspects of the symposium so we can begin advertising it and getting the word out.

Sunday, January 29, 2012

2012-01-29T21:25:00.002-05:00

Sunday, January 29, 2012

Tonight's picture was taken in February of 2009 in the Lombardi Clinic. As you can see Mattie was sitting in his wheelchair and getting his left foot painted red. Why? Because Jenny and Jessie (his amazing art therapists) were creating a Pediatrics welcome sign on the fifth floor of the hospital, and they wanted to place hand prints of children treated at the hospital on this sign. Mattie listened to that request and was not interested at ALL. Until I said what about a foot print? Particularly a footprint of "Curious George." The name associated with Mattie's left leg. The ONLY appendage of Mattie's not ravaged by cancer. Mattie LOVED the idea and sat still for the painting process. I typically do not show two pictures a night, but I wanted you to see the finished product.

This sign can be found on the fifth floor of Georgetown University Hospital. It greets everyone to the pediatric units. Notice the red footprint on the upper right hand corner. This is Mattie's left foot. Though Mattie is no longer with us, I can't pass this sign without thinking of that day in February of 2009 or naturally of Mattie!

Quote of the day: Live as if you were to die tomorrow. Learn as if you were to live forever. ~ Mahatma Gandhi

Though the goal was to rest this weekend, I have done everything BUT that! I spent a great deal of time yesterday and today working on Foundation items. As the afternoon rolled around, I had signed up to attend a "Zumba Explosion" fundraiser in Alexandria, VA. This fundraiser was organized by Brooke Curran, who Peter and I got connected with through our friend Tina. Brooke loves to run and is committed to running a marathon in each of the 50 states, the District of Columbia, and all SEVEN continents. Brooke runs now to raise money for five local charities in Alexandria, VA. All charities that support a local children's cause!

Tina connected us to Brooke on Facebook and Brooke learned about our Whole Foods event on January 25. We had the pleasure of meeting Brooke in person at Whole Foods and we appreciated her support and enthusiasm for our cause. So when I learned about her mission to support children and that she was doing a zumba fundraiser today, it seemed like a great match for me. In fact my zumba instructor encouraged us to go, and there was a group of four of us from my zumba class in attendance tonight. The four of us danced together and chatted throughout the evening. On an aside, I have really learned that NOT all zumba classes and instructors are created equal. I have done zumba now on Princess Cruises, in my weekly class with Jenny, and now tonight at the Caryle Club with Zumba Fitness instructors. There is a lot of truth to the fact that you need to find the right class for you. The beauty of Jenny's class is she is a trained dancer and therefore her class gets you dancing, not only jumping around. I love the way Jenny's class makes me feel. Nonetheless, tonight got me to forget about some of my own pains for a while, and of course gave me the opportunity to spend time with my friend Heidi and to support a good cause.

I invite my readers to check out Brooke's website and the charities she supports. Brooke is an excellent example of someone who has taken something she loves and channels it to help and give back to others. Please visit: www.runningbrooke.com

Saturday, January 28, 2012

2012-01-28T20:46:00.005-05:00

Saturday, January 28, 2012

Tonight's picture was taken in February of 2009. Yes it is blurry, but because it captures SO many wonderful things, I thought it was worth posting. Notice that Anna (Mattie's physical therapist) and Linda (Mattie's Childlife Specialist) were both wearing yellow gowns. That was because Mattie was isolated to his room because it was thought that he had a contagious infection like rotavirus or even worse MRSA. Isolating Mattie to his room was BEYOND painful. It meant that we couldn't really interact with others and Mattie couldn't go to the childlife playroom (this was done to protect the other children in the units from being exposed and catching this virus). Mattie was suspected of having such contagions at least five times during his treatment. These times were sheer torture for us, it was truly like being imprisoned (since the hospital rooms are VERY TINY). However, on this particular day, Anna and Linda brought in all sorts of games for Mattie to do, to get his body moving. Here Anna was demonstrating a rocket that Mattie could shoot up into the air by stomping his foot on this orange pedal. For you or I, this would be VERY simple to do. But for Mattie this was very painful. Mattie's right leg had a prosthetic, and he was cautious using it. However, even if he were to use his left leg to stomp on the pedal, he still had to balance on his right leg, and that too was cumbersome for him. In the midst of all this action, Mattie's big buddy came by to visit. You can see Brandon in the door jam, he couldn't come in because of Mattie's suspected infection. Brandon by this point was in remission from lymphoma but was rushed to the hospital for an appendicitis. So Brandon was in the room next door to Mattie recovering from a lot of pain. What this picture clearly illustrated was physical therapy with Mattie was NEVER boring and he was surrounded by people who really cared about him and his recovery.

Quote of the day (Actually a POEM): Annabel Lee by Edgar Allan Poe

It was many and many a year ago,
In a kingdom by the sea,
That a maiden there lived whom you may know
By the name of ANNABEL LEE;
And this maiden she lived with no other thought
Than to love and be loved by me.

I was a child and she was a child,
In this kingdom by the sea;
But we loved with a love that was more than love-
I and my Annabel Lee;
With a love that the winged seraphs of heaven
Coveted her and me.

And this was the reason that, long ago,
In this kingdom by the sea,
A wind blew out of a cloud, chilling
My beautiful Annabel Lee;
So that her highborn kinsman came
And bore her away from me,
To shut her up in a sepulchre
In this kingdom by the sea.

The angels, not half so happy in heaven,
Went envying her and me-
Yes!- that was the reason (as all men know,
In this kingdom by the sea)
That the wind came out of the cloud by night,
Chilling and killing my Annabel Lee.

But our love it was stronger by far than the love
Of those who were older than we-
Of many far wiser than we-
And neither the angels in heaven above,
Nor the demons down under the sea,
Can ever dissever my soul from the soul
Of the beautiful Annabel Lee.

For the moon never beams without bringing me dreams
Of the beautiful Annabel Lee;
And the stars never rise but I feel the bright eyes
Of the beautiful Annabel Lee;
And so, all the night-tide, I lie down by the side
Of my darling- my darling- my life and my bride,
In the sepulchre there by the sea,
In her tomb by the sounding sea.

My 11 year old friend, Katharina, emailed the poem, Annabel Lee, to me this morning. She is studying this poem in school and I imagine when she read this poem it made her think of my connection to Mattie. Annabel Lee is the last complete poemcomposed by American author Edgar Allan Poe. Like many of Poe's poems, it explores the theme of the death of a beautiful woman. The narrator, who fell in love with Annabel Lee when they were young, has a love for her so strong that even angels are jealous. He retains his love for her even after her death.

The portion of the poem that captured my attention was.... "That the wind came out of the cloud by night, Chilling and killing my Annabel Lee." Though I can't relate to a wind, my figurative wind was Mattie's cancer that blew into his life, consumed him, and took him away from me. Yet despite Mattie's death, we remain connected to each other. Maybe not in the same way Poe describes at the end, but our connection is more spiritual in a way, and as with Poe, the moon beams do have great significance to both of us. I was deeply touched by re-reading this poem, and impressed that an 11 year old would read this in school, and connect such a very loving and heart wrenching poem to me.

After the poem, I received another gift today. This one came in the mail from the founder of Bows for Hope, Lauren. As my faithful readers know, Lauren is 13 years old and an Osteosarcoma survivor. We met through Mattie's blog, because Lauren and Mattie were battling the same cancer at the same time. In Mattie's honor, Lauren developed her own non-profit, which creates beautiful duct tape bows. Her mission is to raise funds for Mattie Miracle and I welcome you to visit her website to hear her own inspiring story: www.bowsforhope.com

Lauren mailed me a check from her December bow sales! However, in addition to this wonderful gift, she made me 17 bows of hope! They are beautiful! What amused me though was also her creativity on the outside of her packing box. I took some pictures of this adorable box! I loved the marketing!

Here is a side view of the box!

This is what it is says on the bottom of the box!!!

This is another side of the box. It says.... "Let's Go BFH!" Which of course stands for Bows For Hope!

Lauren created these bows for me because she knows this coming Friday I will be meeting with the Girl Scouts and introducing them to Mattie and the Foundation through a formal presentation. When I learned about this opportunity through Heidi, I decided to reach out to Lauren. Since Lauren is a teen who uses her passion, creativity, and experiences to help others, I thought it would be meaningful for the Girl Scouts to see a live example of how teenagers can and do make a difference. So on Friday, I will also introduce these 12 girls to Lauren, her non-profit, and give each girl their own Bow for Hope! To me these bows are beautiful, and when you understand the story behind them, they are sheer miracles. Lauren is a courageous survivor, who knows first hand about the ravages of Osteosarcoma. Yet she lives with that knowledge daily and channels it to make a difference and help other children and their families. If this isn't the definition of a hero, I don't know what is.

Peter and I had a working lunch. One of the business school groups sent us 14 questions and a social values survey to complete on behalf of our Foundation. You should note however, that this group is using Mattie Miracle as a case example for a second business school class. So for this group, we are their center of focus for TWO classes. We will meet with this group on campus this coming week, but we wanted to give some thought to their strategic questions ahead of time!

After lunch, we walked Roosevelt Island together. It was a beautiful sunny day in the 50s, and while walking I heard a hammering sound. I knew immediately we had a Pilated Woodpecker in our presence. Peter saw it in the distance, and snapped a picture! Despite not feeling well, I needed to get outside and get fresh air. Roosevelt Island is always an oasis for us in the heart of the city!

Friday, January 27, 2012

2012-01-27T20:51:00.000-05:00

Friday, January 27, 2012

Tonight's picture was taken in January of 2009 at Charlotte's birthday party. For my faithful readers, Charlotte is a very known and understood presence on Mattie's blog. Mattie met Charlotte in kindergarten and they became instant friends. Well that was until Mattie let me know one day in his dentist's office that the ring he got for a good cleaning was going to Charlotte. Not as a gift, but this was an engagement ring. I made a mental note of that, and figured that Mattie would forget and move on. However, one afternoon I was transporting Mattie and Charlotte together in my car to a birthday party. It was at that point Mattie popped out the ring and gave it to Charlotte and told her it was her engagement ring for when they get married. Mattie's feelings for Charlotte were real and he was very loyal to her and the beauty of it all was his feelings were reciprocated by Charlotte. Through Mattie's cancer battle, Charlotte was there. She visited in the hospital often and ALL the nurses, art therapists, and Linda knew exactly who Charlotte was and understood the importance of her in Mattie's life. There was just an aura around them. I have to imagine that there are certain children who were touched by Mattie's presence, a presence they will carry with them their entire life.

Quote of the day: A man's friendships are one of the best measures of his worth. ~ Charles Darwin

Today we learned our five percent earnings from the Whole Foods day on Wednesday was $6935. Before leaving the store on Wednesday night, I learned that the last non-profit who had a five percent day at Whole Foods in Alexandria earned around $6400. I told my mom about these numbers, and instantaneously in her head she calculated that we raised an additional $10,000 in sales for Whole Foods that day. The beauty of her mathematical mind! Some things are NOT genetic!!!!

Therefore our grand total we raised from the Whole Foods event is $8540. The Super Bowl raffle basket was a great idea and really brought several shoppers to our table and got them interacting with us. So from donations, selling 209 raffle tickets, and sales at Whole Foods, the day was a great success! The raffle basket was won by a man who we met toward the end of the evening. This fellow and I spoke for a while, and he actually got involved with helping adults with cancer, after cancer touched his friend's life. When I called this man to tell him he won the raffle item, he was stunned! He told me he never won anything and was very humbled by this.

Before heading to the mall today, I ran to the post office. We finally finished completing our Combined Federal Campaign (like United Way) application! This was no easy feat to do especially since it was our first time applying. Hopefully we should know if we qualify by the summer! For all our local federal government employee supporters, I will keep you posted!

I met my friend Heidi and her daughter's girl scout troop at the mall today. I was surrounded by 12 energetic and lively girls who were committed to assemble 100 teddy bears for sick children at Georgetown University Hospital. The girls are earning 50 service hours this year to qualify for a silver award from the Girl Scouts! Working with Mattie Miracle is part of these service hours. The girls raised $1000 by saving their babysitting money and from other part time opportunities to purchase the teddy bears. I had the opportunity to meet all 12 girls and their wonderful troop leaders. However, this is only part one of our interaction together. Next Friday, I am meeting the troop at Georgetown University Hospital. They will have lunch there and I will present to them information about Mattie and the Foundation. After the presentation, the girls will then go to each of the three pediatric units and the Lombardi Clinic to distribute teddy bears to sick children and their siblings.

For those of you who have never gone to a Build A Bear store, I assure you it is an experience. In the store is a stuffing machine. Each girl was given four or five bears today (the store premade 50 bears for us!). The bears come to them unstuffed. However, before they go to the machine which shoots fluffy stuffing into it, the girls pick a material made heart and rub it and give it wishes and then place it inside the bear. Almost in a way the bears are symbolically stuffed with HOPE and LOVE for its recipient. With the HOPE of feeling and getting better. I will share with you some of the pictures I took today for this special gathering.

The store leader had the girls do a bonding activity. The girls formed two circles. They then crossed arms and held hands. The goal was to unwind themselves without letting go of each others hands to form a circle in which they were holding hands normally by their sides.

I entitle this picture... Bear Happiness! As you can see Lexi loved the bears she made and Erin (on the floor on the right) also felt the same way!

Heidi's daughter Isabel was helping to organize the Teddy Bears as they were being made. As you can see the bears are adorable, and with their pretty bows, they will hopefully bring a smile to many children.

Ann and I represented Mattie Miracle today and Heidi took a picture of us with all the girls and their bears.

The store leader also took a picture of ALL of us, including the troop leaders. The adults in the upper left hand corner are: Ellen, Pam, and Trevor, and you can see Ann on the left hand side on the floor. On the right hand side on the floor is Heidi, and I am behind her.

I love Darwin's quote, because I do think friendships are a measure of one's worth. Based on how I have been feeling for the last couple of weeks and the intensity of this week, I was simply wiped out by noon. I had lunch with Ann and Alison today. I actually sat down while they purchased lunch for me because standing on a line was more than I could handle. I did not have to say that, they just understood that. As my faithful readers know, Ann and Alison were instrumental to Team Mattie, and these women saw me at my worst moments. However physically I am not at my finest hours and between how I am feeling and the emotional component of the week, I am on overload. Alison shared with me some feelings about Mattie and his connection with her son (who was in his kindergarten class) at lunch that were very touching and will remain with me always. I do have a mind like a steel trap. I remember what people say and especially how they make me feel.

Thursday, January 26, 2012

2012-01-26T21:53:00.002-05:00

Thursday, January 26, 2012

Tonight's picture was taken in February of 2009. Mattie was in-patient and having his daily physical therapy session with Anna. However, you should know that Mattie typically did not like doing therapy alone. So that day, I was his therapy buddy and we played a version of twister together. Mattie was very good at this game! However, do not think that Anna got away with coaching him and giving him directions! Quite on the contrary. At one point that day, Mattie sat on the bench behind us and had Anna and I on the floor doing twister. Anna was a great sport and really did play along with Mattie's requests. I have no doubt that at first Mattie caught Anna off guard when they first started working together, but over time, I think Mattie influenced Anna in profound ways. Anna was already a great therapist, but through their special connection, and I think Mattie brought out skills and abilities in Anna she probably didn't know she had!

Quote of the day: Only those who will risk going too far can possibly find out how far one can go. ~ T.S. Eliot

I must admit after yesterday we are both in a bit of a fog today. Despite how we felt, Peter went to work and I refocused back onto the next Foundation event. Which is our psychosocial symposium scheduled for March 20, 2012 on Capitol Hill.

Despite being in a mental fog, Ann suggested we meet up and walk since today was in the 50's. We walked close to four miles together and talked about all sorts of things. One of the things Ann and I spoke about was the turnout last night at Whole Foods of high school seniors from Mattie's school. I did not make mention of this last night in the blog, but there were several groups of seniors who stopped by at lunch time and then for dinner to support our cause. Most of them did not come up to talk with me directly, which is why I did not write about it last night. However, while Ann was talking to me about this today, I did reflect on one senior who did personally come up to me and introduced herself and wanted to know that she supported our cause. She is a delightful, well spoken young woman, and I was inspired by her sincerity.

I have received a lot of feedback about our Whole Foods event and I appreciate every email and comment. I would like to share four messages in particular with you.......................

The first message is from my friend and colleague, Nancy. Nancy wrote, "What a fabulous day! Your descriptions, pictures, and the love and support of everyone aptly describes the quote that was used in last night's blog. Everything was fantastic and I was with all of you in spirit. Wow, $1,600 in donations and the raffle! That is great. I pray that it will off set some of the revenue needed for all of your handouts, of which there was plenty. Awaiting the tally of the 5% figure too. I'm sure that it will be above any expectation that you might have had. The Girl Scout girls and Mattie's other friends are a tribute to your little boy and the penny, glad that Mattie could be with you yesterday too. Such a paradox to feel joy at seeing the penny and sadness at the same time that you had to plan all this because he endured so much. Can't wait till tomorrow to see the pictures of all the bears that the girls will contribute to the Foundation and how you will distribute them. The love and spirit of your Foundation is so personal, that all these sponsors and supporters are drawn to help. Again kudos to everyone, especially, Peter and you for your tireless effort on behalf of Mattie and anyone who has to experience any part of what the three of you went through."

The second message is from my friend and Mattie's first preschool teacher, Margaret. Margaret is now the assistant director of Mattie's preschool and she and Kim (the director) graciously advertised our event to their entire school community. The response from Resurrection Children's Center was remarkable, from both teachers and parents! Today Margaret sent out a message thanking her school's families. Margaret wrote, "I want to thank each and every one of you who stopped by to chat and shop at Whole Foods yesterday in support of The Mattie Miracle Foundation. Vicki and Peter, Mattie’s parents and founders of the Foundation, were overwhelmed with the outpouring of community support and were particularly impressed, as was I, with the participation of our RCC community, past and present. Amazing days like this remind me how proud and grateful I am to be a part of this community, a community that represents the best of humanity."

The third message is from my friend, Carolyn. Carolyn wrote, "You have MUCH to be proud of - and know how PROUD all of your friends are of you two! You are amazing individuals!"

The final message is from Katie (vice president of Philanthropy for Georgetown University Hospital). I have had the wonderful opportunity to get to know Katie over the last several months and we appreciate her support of our Foundation. Katie wrote, "Great to see you all last night -- and wonderful work at Whole Foods! We enjoyed seeing you all and helping the cause and I enjoyed seeing all the lovely photos and stories on the blog -- so beautifully written."

Wednesday, January 25, 2012

2012-01-26T01:27:00.001-05:00

Wednesday, January 25, 2012

Tonight's picture was taken in August of 2009. By this point, we knew that Mattie's condition was terminal. Linda, Mattie's childlife specialist, knew how much Mattie loved LEGOs. So she contacted the LEGO store in our local mall and arranged for Mattie to have a private visit to the store, when NO one else was shopping there. In addition, Mattie was allowed to bring one friend and together they would have the opportunity to build with two Lego Brick masters. Mattie wanted Abigail, Ann's youngest daughter, to join him and that evening they worked together to build a NYC taxi. Not unlike the ones Mattie rode in to go to Sloan Kettering for treatment. This taxi however, was NOT made from a LEGO kit. Mattie and Abbie, with the help of the Lego masters, designed the taxi from scratch. That taxi remains in my living room today. I will never forget that evening and I recall on the way home that evening Ann called me in the car to tell me Abbie had the best night of her life. Tonight, Abbie was with us during the 5% Whole Foods sale day, and seeing her triggered this event back in August of 2009.

Quote of the day: All human beings are part of the tapestry of the universe, part of a pattern which connects. Nothing exists in isolation, in separateness. When I realize this network of grand relationships, I lose the illusion of my separate self. ~ Satish Kumar

Today was the Mattie Miracle Cancer Foundation's 5% Day at Whole Foods in Alexandria, VA. Peter and I were at the store from 8am until 10pm. It was quite a memorable 14 hour day. We spent from 8am to 4pm in the front entrance of the store and greeted hundreds of customers. By 4pm, the store asked us to move inside because they needed the entrance way for their wine event. However, both locations worked out very well for us. We greeted customers with stickers we created that said "Shop for Hope" to help children with childhood cancer. The stickers were actually a great way to interact with everyone coming into the store. In a way it was a study of human nature today. Some customers wanted to talk with us and others avoided us at all cost. In fact, some thought we wanted to solicit them for money rather than passing along information that 5% of everything they bought in the store went to supporting childhood cancer. As the day wore on, we got a better feeling for how to read certain people, and the bottom line is today far exceeded my expectations.

After all, when people grocery shop, they are focused on their task. They aren't necessarily coming to a store for a human story and interaction. Yet cancer is the kind of disease that emotionally impacts people. Some people came up to us to tell us their story, to share a tear or two, and at the end of the day a retired military man was honest and said he was simply MAD that his best friend's son had cancer and he felt helpless and not sure how to support his friend. The realness of these conversations was refreshing and I do not find them depressing or sad. Instead, these expressions of feelings are my reality and I appreciate when I have someone I can deeply relate to and they feel the same way about me.

One thing is very clear, we have a VERY strong support base! In fact, the Whole Foods Director of Marketing told me she has never seen such a turn out for a 5% Sales day! The store was packed throughout the day, and she reflected to me how impressed she was with our community's spirit and their very clear connection to us. That was a beautiful gift to hear from someone who is VERY objective and doesn't know us. In so many ways, it was like a reunion for many of us at the store. The event brought our various communities together, and people were motivated to shop to support our cause. To me this is simply remarkable!

Though we were there for 14 hours, there is absolutely NO way we could have manned our tables alone. Typically I try to plan for volunteers to help us, but I really hadn't organized anything concrete for today. Despite that, we had Ann, Tina, Margaret, and Junko with us for practically the whole day. Ann and Tina opened the store with us and they closed the store with us. Somehow these women went above and beyond today and thanks to them and our concerted and unified effort, we expanded our support base and just in donations and our Super Bowl raffle item we generated over $1600. This naturally doesn't include the funds generated from Whole Foods. I would like to share some pictures we took today while in the midst of the event!

The store displayed our Mattie Miracle banner quite prominently at the entrance!

Here is the chalk board greeting customers into the store!

We were fortunate to have our friends Christine and James with us this morning helping us get the whole process started, greeting customers, and selling raffle tickets! We are appreciative of their time they took off from work to be with us.

A close up of Peter and James! You can get a feeling for what our set up looked like. We were giving away pens, brochures, beaded key chains, wristbands, and t-shirts. In addition, on the left of this picture was our raffle which was a big hit!

Our wonderful Georgetown University Hospital nurses, Ashley and Alice, ran a health screening at Whole Foods from 11am until 2pm. Both of these women knew Mattie and it was very special that they spent part of the day with us and we are happy that Georgetown received this visibility at Whole Foods.

A very busy trio! Peter took a picture of me with Ann and Tina. Peter and I couldn't have managed this day without these women! Both of whom promoted our event all over town.

Peter and I were beyond thrilled that Tricia (my faithful readers know that Tricia was one of the five Johnson and Johnson Nurse finalists, and an outstanding HEM/ONC nurse of Mattie's) and her mom came to the event! I have seen pictures of Tricia's mom but never met her in person. So it was wonderful to meet another family member of Tricia's and to share this day with her!

Linda, Mattie's Childlife Specialist, came to support us and as you can see bought groceries! In fact, the whole childlife department at Georgetown came out today to support us! Along with several doctors and hospital administrators!

I title this picture, "The girls!" The cutie all the way on the left is Isabel. She is my friend Heidi's daughter and Isabel and her friends are part of the Girl Scout troop raising money to build 100 teddy bears at Build a Bear this Friday (bears which they are donating to Mattie Miracle). Stay tuned for more on this! These girls volunteered their time today giving out stickers and brochures and shared their energy with all of us!

Peter snapped a picture of me with Heather Stouffer, the founder of Mom Made Foods (www.mommadefoods.com). Heather is super supportive of us and we truly appreciated her time and efforts to demonstrate her products to draw customers into the store! Her company is five years old and her products are sold in over 1000 stores nationwide!

Our friends Margaret and Junko stepped in today to help us without even being asked. They worked over six hours with us, standing the entire time. As Junko pointed out, no one really sits in a grocery store. I never thought about that, until she aptly pointed that out. In this picture from left to right is Margaret, Grace (one of the very first preschool moms I met at Resurrection Children's Center), John (a classmate in Mattie's first preschool class), Christopher (John's brother), and Junko. I spent a lot of time with John in preschool, since he was in both of Mattie's preschool classes. John considered me his friend and gravitated to me, and even today, we seem to just have a special connection!

We reconnected with many Resurrection teachers and families today and we are so appreciative to them for their support. Mattie's best buddy Zachary also came to the store tonight and did a great job shopping with both of his parents! Also Mattie's buddy Ellie and her brother were there in support. Ellie recently wrote a hand written letter to American Girl helping me solicit a doll for our Walk raffle. Rather impressive! At the end of the evening, Mattie's kindergarten teacher, Leslie, and his art teacher, Debbie came by to visit me, along with Donna (the wonderful kindergarten teacher I work with to deliver my Matisse and Picasso lectures).

As we were packing up for the night, Peter noticed out of the corner of his eye a penny. Not on the floor, or sitting on a shelf. But wedged into a shelf, sticking out at him. I concluded this was a sign from Mattie. He was with us at Whole Foods today and watching over the event and us.

It is 1:30am, and I am signing off because I am exhausted! But before saying goodnight, I want to thank each and every one of you who came to Whole Foods today. Your presence did not go unnoticed and your support means a lot to us, and to children and their families battling cancer. A BIG THANK YOU!

Tuesday, January 24, 2012

2012-01-24T20:04:00.001-05:00

Tuesday, January 24, 2012 -- Mattie died 124 weeks ago today.

Tonight's picture was taken in August of 2009. Mattie and I were riding in "Speedy Red." Speedy Red was a gift my parents gave Mattie. He always wanted a ride-on car when he was healthy and well and my response was.... NO! However, my opinion about the ride-on vehicle changed dramatically when we learned of Mattie's terminal status. Speedy Red gave Mattie great pleasure in his last few weeks and though you are unable to see it, behind Mattie (in Speedy's trunk) was his pain pump which was attached to his central line hanging from his chest and in addition we had an oxygen tank with us. You can clearly see though that I am TOO big for this car! But there was no way I was going to let Mattie drive this car without an adult in the car with him. Mattie took to driving like a duck to water. He just understood the mechanics of the whole thing and he also seemed to understand what you had to do on curves and turns. At age 7 he was a great driver and we spent time zooming around outside in the fresh air during very challenging times. Which maybe why I can't seem to part with Speedy Red. Speedy takes up a great deal of real estate on our deck, but I am fine with that. In fact, at the moment, my sparrows seem to like perching on Speedy and even sitting inside the trunk! Over time I may figure out what to do with Speedy, but for now, he guards the deck and is the symbol of Mattie's last wish.

Quote of the day: Wisdom is offtimes nearer when we stoop than when we soar. ~William Wordsworth

It is hard to believe that as of today, Mattie has been gone from our lives for 124 weeks! It just doesn't seem possible. Wordsworth in a way was correct, we do gain great knowledge, perspective, and maybe wisdom by being humbled and removed from a position of superiority. Cancer is most definitely that humbling force and add to that the death of a child and it shatters everything one seemed to hold dear and of value. In the midst of this harsh reality check, it is almost impossible not to learn something. I suppose in a way, my nightly writings or rants are my attempts at understanding my circumstances and the world around me. I AM IN SEARCH OF WISDOM..... it is my nightly quest to write and look for it, because no matter how much processing I do, it just doesn't make sense as to why Mattie was chosen to suffer and die.

I began my day by contacting my doctor. Or I should say one of my many doctors. After Mattie's death, I need a team of people to keep me well. But I have been struggling for the last two weeks and thought I was doing better, but I am back to where I started from, feeling awful again. Before seeing my doctor, I had an extensive visit with her resident. Typically I have no patience for residents, but this fellow caught my attention. Mainly because he wasn't only competent but he was an outstanding listener and great empathizer. I explained to him about Mattie's death and he immediately could put two and two together..... trauma and loss can equal great stress leading to illness. When my doctor finally came into the exam room and the resident stepped out so I could be examined, my doctor and I started talking about her resident. I basically gave her a mouth full about him and she quickly stopped what she was doing and took notes. She says she is putting my comments on his evaluation. When you find a doctor who listens, communicates, takes his time to connect with you, that needs to be acknowledged and rewarded.

I spent the rest of the day running around doing last minute chores for tomorrow's Whole Foods Day. We look forward to seeing many of our supporters and I am pleased to share with you Whole Foods' Ad that was circulated electronically today!

Monday, January 23, 2012

2012-01-23T21:59:00.000-05:00

Monday, January 23, 2012

Tonight's picture was taken in February of 2009 right in the middle of the pediatric unit hallway. Along side Mattie was Anna, his physical therapist pushing his IV pole, and behind Mattie was Jessie (Mattie's art therapist) and Linda (Mattie's childlife specialist). This was what a typical physical therapy session looked like when Mattie was in-patient. I am not sure I know of too many other hospitals that would have done this. But therapy at Georgetown became a family affair. These women understood what a feat it was for Mattie to exercise and move his body when he was in SO much pain, that they all joined forces and made therapy as fun and interesting as it could possibly be. As you can see, Mattie made himself a long tail of plastic cones attached to his walker that day and put Jessie in charge of carrying it. Everyone in Mattie's therapy scenario had a purpose and a job. As we moved through the hallways we weren't quiet either. Mattie was either singing something, chatting up a storm, giving out directions, or on really tough days, Linda would carry a boom box with her and blast out ABBA music. Needless to say, Mattie caught a lot of attention on ABBA days!

Quote of the day: The heart is the only broken instrument that works. ~ T.E. Kalem

I had to think about this quote for a while. As we know an instrument is not only for playing music, but an instrument can also refer to an electrical or mechanical device. The heart is such a device because it is an organ that is controlled by a precise electrical system that sends signals to contract the heart's walls. Thankfully though unlike other instruments, when the heart figuratively breaks, it doesn't STOP working. Or does it? We wouldn't be human if we did not experience what it feels like to have our heart strings pulled and occasionally broken by others. However, contrary to what the quote implies, I do believe that when our heart is emotionally broken, there are ramifications on how it works. In fact our heart may not function like it once did when broken by stress and trauma. After all, we know that stress is highly linked to heart disease and therefore over time our emotions may cause major changes to our heart. Changes that impact the blood supply to the rest of our body. We are constantly bombarded with information about heart health, through diet and exercise, but I would also add that keeping this electrical instrument healthy also requires a mental and emotional devotion. A devotion that requires the presence of others in our lives, people who appreciate us, people who make us feel needed, wanted, and special. That may sound trite, but human beings require this in order to keep our minds and bodies stable.

On Wednesday, January 25th, Mattie Miracle will be having a five percent sales day at Whole Foods in Alexandria, VA (5% of ALL sales that day will go to the Foundation!). The momentum in our community is growing in anticipation of this day and it is my hope that Whole Foods gets a Wednesday turnout like they never had before. Messages are all over town and even Georgetown University Hospital is sending out messages about the event through Twitter!

On the 25th there will be three vendors at the store doing food demonstrations on our behalf. We are very grateful to Pork Barrel BBQ (www.porkbarrel.com), Mom Made Foods (www.mommadefoods.com), and Perfect Foods Bar (www.perfectfoodsbar.com) who are supporting us with their service and wonderful food products! In addition from 11am to 2pm, the Georgetown University Hospital nurses will be at the store offering free health screenings! In the midst of planning these things, one of our avid supporters and friends donated money to the Foundation to have a Super Bowl raffle basket at the Whole Foods event. The goal being to raise additional funds for the Foundation. So over the course of the last two weeks, I have been purchasing items for this raffle item! Below if the finished product!

Here is the announcement I created today that will go on display at the store.

I assembled this raffle item in Mattie's room, and today we ran all over town searching for Patriots and Giants items. That was quite an ordeal for some reason! But we were successful!

Here is the final wrapped product. The irony is that I have learned to create, stage, and wrap baskets from working on our Foundation Raffle over the years. However, Peter has never watched me put a basket together since in the past I always assembled and completed them at Ann's house. So for him watching me in action was novel. However, Peter feels he has found another job for me if the foundation doesn't work out.... baskets by Vicki! NO THANK YOU!

The Washington Post is featuring charities this week who are sponsoring local events and Mattie Miracle was mentioned. Check it out! I hope to see you on Wednesday! Come by and say hi! We will be in the front entrance of the store. You can't miss us!

http://www.washingtonpost.com/business/capitalbusiness/charity-week-ahead-jan-23/2012/01/19/gIQANxo6IQ_story.html

Sunday, January 22, 2012

2012-01-22T20:31:00.000-05:00

Sunday, January 22, 2012

Tonight's picture was taken in January of 2009. After we took Mattie to see the Lion King in NYC, we exited the theatre and right in front of us was Times Square. Naturally this did not surprise Karen, but it certainly caught Mattie and I off guard. I hadn't been to Times Square in years and Mattie had never seen it. Mind you when we entered the theatre to see the show, it was still somewhat light outside. We were blown away by the lights and the incredible number of people all over the place. However, you can see a big smile on Mattie's face. He loved seeing the Lion King and in fact he was bouncing in his seat to the music. Mattie loved music and I suspect he liked dancing too! Peter captured a picture of Mattie, Karen, and I right in the midst of the excitement that can only be found in NYC!

Quote of the day: Consider the following. We humans are social beings. We come into the world as the result of others' actions. We survive here in dependence on others. Whether we like it or not, there is hardly a moment of our lives when we do not benefit from others' activities. For this reason it is hardly surprising that most of our happiness arises in the context of our relationships with others. ~ Dalai Lama

Last night, I was sitting upstairs by my desk working on the computer and I started to smell smoke and fire. I called downstairs to Peter who hadn't smelled it yet. However, within minutes of my pronouncement, we heard something that sounded like a gun shot. We looked out the window and saw that a pick-up truck was on fire and its engine had exploded. It was a frightening sight. I think what was most disturbing was it seemed like it took forever for a fire engine to respond.

As you can see this truck was basically consumed by the fire. The driver and the passenger had escaped but literally they were standing by the wall, way too close to the car in my opinion. Traffic was stopped for miles and for about an hour. It took quite some time to contain this fire and Peter and I were just watching in amazement.

Peter and I continued working today to prepare for Wednesday's Whole Foods event and as is typical with winter weather, it was a grey and cold day. Rather depressing to look at and sometimes without sun I feel I have no benchmark to the day. Morning, afternoon, and evening just seem to blend into one another.

I find I am simply tired this weekend and again not feeling well, so I am signing off for the evening in hopes that tomorrow is a better day. I did receive a lovely email today from my friend and colleague Nancy, and was very touched by my new name..... the heart whisperer!

Nancy wrote, "Your writing always teaches me something. I knew that Mattie's left leg was called George and I loved learning the names of his arms and right leg as well. Curious George is perfect for his left leg. It really did develop a mind of its own as it adapted to his needs and supported him in special ways. I try to imagine the depth of your pain and I realize that I can't. I know that you hope that I never have to, too! Heidi et al. at Zumba, another connection. You are a magnet of good deeds and feelings. I believe that is why the Foundation is being helped and supported by so many resources. Congrats on your newest sponsor, the Girl Scout Troop. What a great idea for the kids/people at the hospital! We all need something or someone to hug and while there isn't a substitute, fully, for a genuine hug, a bear will always do the trick. I loved the quote and realize how hard it is for some to hear the whispers of the heart. I wish you a better day today, my heart whisperer."

Saturday, January 21, 2012

2012-01-21T20:19:00.002-05:00

Saturday, January 21, 2012

Tonight's picture was taken in January of 2009. Mattie was invited to a friend's birthday party. Though all the other children were dropped off at the party, Peter and I had to stay with Mattie because he couldn't walk or move around on his own. He dealt with that pretty well and wasn't embarrassed. By that point in his treatment, he really wanted us around because we served interference and made sure all his needs were met. He understood and appreciated that. Nonetheless, the other children at the party who did not know about Mattie and his battle, observed us and were visibly curious and some just scared of the way Mattie looked and moved around. The party was a dress up dance party and as you can see, Mattie picked out a vest and a hat to wear. Mattie was always a beautiful and engaging child, and though cancer tried very hard to extinguish these qualities, it wasn't successful. The force within Mattie just couldn't be suppressed.

Quote of the day: For what you see and hear depends a good deal on where you are standing: It also depends on what sort of person you are. ~ C.S. Lewis

Yesterday I was in a bad mood, and unfortunately it carried over into today. Peter can attest to that as I began the day snapping at him. Naturally the anger and feelings I have are not meant to be directed at him, but over the course of the next couple of months I have taken on several big Foundation projects that make me feel like I am on overload. Overload now produces physical symptoms and a host of other reactions within me.

Today Peter and I had a meeting with the director of marketing at the Alexandria, VA Whole Foods store. This is the store hosting our 5% day on Wednesday. The store has had some changes in personnel and therefore the original person I was working with who accepted our application is no longer at the store. So in many ways, we are rebuilding our connections there. I will spare you some of the frustrations I have had with planning this event over the course of the last three weeks, but let me assure you that a great deal of thought and coordination has gone into this day. In fact more than one might anticipate! After meeting with Kristen today, she encouraged us to provide free giveaway items to the customers coming into the store (which can't be food, balloon, and flower related). Mind you in a given day the store has about 800 to 1000 customers. The ironic part is if we could afford to giveaway 1000s of items, then from my perspective we wouldn't need a 5% day. So later on this evening, I spent about two hours in Mattie's room combing through all our Foundation merchandise to pull from things we do not mind giving away. After all, we need to be some what conservative with our branded items because they cost us money to generate them. As of tonight, we are much better organized for Wednesday, but still have some last minute things to do!

However, when my friend Charlie sent me this quote today, my reaction to it was... BRILLIANT! It is brilliant because when I tell Mattie's story and battle to people, I can tell RIGHT away whether you are listening to me and whether you care about what I am saying. As my readers know I have shared this story with hundreds, NO maybe thousands of people, and it never ceases to amaze me that about 10% of the population has absolutely NO reaction to it. This is not because they are shocked and don't know what to say, it is because they are simply disinterested. Believe me I know and I am adept at feeling the difference. So C.S. Lewis' quote was profound because seeing and hearing something doesn't guarantee that the information will be absorbed and processed. So much depends on WHO you are, WHAT is important to you, and especially WHERE you are in your life and the kinds of experiences you have had.

Friday, January 20, 2012

2012-01-20T22:28:00.001-05:00

Friday, January 20, 2012

Tonight's picture was taken in January of 2009 on the 102nd observatory floor of the Empire State Building. We lucked out that day, because there were NO lines to get into the elevators, and we were able to take our time and explore all the floors. Everyone working in the building was very friendly and considerate of Mattie and Mattie was committed to go as high up in the building as the elevator would take him. The height did not bother him, but being in a skyscraper fascinated him. This was his first and last trip ever visiting a skyscraper! We always called Mattie our "little engineer," because of his enjoyment and fascination with putting things together and understanding how they worked. Which was why we knew he would love his visit to the incredible Empire State Building.

Quote of the day: There is no education like adversity. ~ Benjamin Disraeli

My dad sent me tonight's quote, and I found it very applicable for my mood today. We are all faced with different types of adversity in life, and I suppose the issue is what do we learn from it? Today marks the 18th anniversary of my maternal grandmother's death. That might not sound earth shattering, after all, older adults do die and it is what we have come to accept as the natural order of life. However, regardless of age, and whether one expects a person's death or not, the death of a loved one is simply hard to accept and understand. My maternal grandmother lived in my parent's house, and therefore being raised in a multiple generational household, I assumed that my experience was normal and that everyone had such an enriching family life. Depending upon the context, there were times my grandmother was like a second mother to me, and then at other times she was like a much older sibling.

When I was in college, my grandmother suffered a massive stroke. The stroke left her paralyzed, with slurred speech, swallowing issues, and an altered personality. My parents continued to care for my grandmother at home for a year before placing her in a nursing home. However, the nursing home placement was a necessity since my mother got so ill from caregiving that she was in the intensive care unit for weeks. She was so run down from the physical and emotional toll of caregiving that she developed sepsis, however her case was so aggressive the medical staff did not know if she would survive or not. My mom was an outstanding, loving, and compassionate caregiver to my grandmother. So the apple, being me, did not fall far from the tree. Seeing my grandmother's body and mental state being transformed by a stroke was devastating, but seeing the ramifications of such a profound illness on a family system was equally as deadly. Which is most likely why entering graduate school, I began studying the impact of stress on family caregivers. Every research paper I wrote typically focused on this issue and naturally when it came time to select a dissertation topic, I felt the topic had basically picked me and not the other way around. My family's adversity inspired me to learn and to try to help others. However, I had no idea that now 18 years later, I would not only have the trauma of my grandmother dying, but also that of my son. Somehow both of these deaths seem to feed off of each other, despite being decades apart.

I spent the day working on various Foundation related items and one of the important components of the psychosocial symposium we are hosting on Capitol Hill in March is a parent panel. I believe it is very important for attendees to understand the ramifications of childhood cancer directly from the mouths of parents. It is vital to hear from the researchers and clinicians, but it is crucial to hear the stories, the struggles, and frankly the emotions of those who lived the battle. The first parent I asked to serve on this panel is Toni, Brandon's mom. As many of my readers know, Brandon was Mattie's big buddy and partner in cancer. When Toni received her invitation to speak, she called me immediately today to let me know that she would be there to support us and wouldn't miss this for the world. Later in the day when I was telling Toni I was having a bad day, her response was...... it was understandable and yet I am one of the strongest people she knows and she admires me. Toni is one of my friends I made through great adversity, and whether we wanted it or not, we got quite an education together.

Thursday, January 19, 2012

2012-01-19T21:19:00.000-05:00

Thursday, January 19, 2012

Tonight's picture was taken in January of 2009. Mattie loved to sit on the floor of his hospital room and play. With Mattie was Liza. Liza is a gem! She was a childlife volunteer and Mattie gravitated to her as soon as he met her. You need to understand that Mattie was discerning. He didn't just play with anyone, nor did he allow whomever wanted to enter his room, admittance. I will always remember Liza for many reasons. Liza has the cutest voice, a bit like Glinda the good witch in the Wizard of Oz. I just loved hearing her talk. Liza loved reading and she introduced Mattie to some wonderful children's books. Liza was versatile though and she could play with just about anything and she really was motivated to give Peter and I a break when she was there. So in my mind she is a sensitive and perceptive young woman. In this picture, Mattie was working with one of his other favorite toys (when not creating with LEGOs), digging through clay to unearth mock dinosaur bones. Pay attention though to Mattie's left leg. This was the ONLY appendage Mattie did not have surgery on, and as such, that leg and foot developed the strength and the agility of an arm and a hand. It is amazing how the mind and the body do compensate. Mattie's left leg was named George, YES both arms and legs developed names while he was fighting cancer. Actually the names were generated by Mattie's orthopaedic surgeon, but Mattie related to and adopted them. Mattie's arms were Sam and Harold, and Mattie's right leg was Steve and his left leg was George, or as we later called it, Curious George. The left leg was always exploring and reaching out at people and even into their pockets, which is why "curious" was the perfect adjective to describe George.

Quote of the day: Let your heart guide you. It whispers, so listen closely. ~ The Land Before Time

My friend Heidi asked me on Tuesday if I was going to attend zumba class today. I typically do not go on Thursdays, but when she mentioned it to me and I knew I had nothing scheduled this morning, I decided to go. I am glad I did! Exercising forces me out of our home, away from working for a bit, and interacting with people. It is through this class that I got reconnected with Jenny. Jenny is the instructor but she was also the room parent in Mattie's kindergarten class. Jenny is supporting the Foundation's walk this year in two ways, she is hosting a free zumba class at our May 20th Walk and is also donating 10 classes toward our annual raffle. I am very grateful to both forms of support and I am happy that I took a leap and decided to go to zumba class. I would have missed a lot if I hadn't tried it.

The other wonderful part about class is my connection with Heidi. Heidi and I have a lot in common and we are now working together on a girl scout troop project. Heidi's daughter is a girl scout and Heidi brought Mattie Miracle to the attention of the troop leaders. Needless to say, this group of 12 girls is raising money and with that money they are going to our local Build a Bear store and creating 100 teddy bears. These bears will be donated to Mattie Miracle, and together we will go to Georgetown University Hospital in February to distribute the bears to children. Stay tuned for more details. I will keep you posted along the way, but I am deeply moved how these young women are coming together to learn more about the Foundation and to help children with cancer.

My friend Ann went to Boston today to assist a family member battling cancer. Because she was going to be there all day, she asked me to help her with her children. In many ways, when I interact with children now, it is almost like a foreign experience. After all, I am not performing motherly duties on a regular basis, my afternoons are not filled with school pick ups, play dates, and school related activities. However, I always try as tonight's quote points out, to listen to my heart. Some days it is harder to hear, but even when it whispers I do try to pay attention. Typically though, around children, what whispers I figuratively hear are Mattie's. I remember what it was like raising him and the skills I developed by being his mother. Today's journey home in the car with Ann's two children was an absolute riot. Ann's son Michael is learning the names of all the bones in the human body. So literally we had an anatomy game going on in the car! Ann's daughter, Abbie was getting a kick out of this, and as I was playing along, I realized my anatomy which I studied in college and graduate school was still in my head.

As I was helping Abbie get ready for her gymnastics lesson, the fun continued. Abbie's hair needs to be tied back and out of her face for class, but we have our own routine with this. It too is a game. At one point, I reached for a hair brush and pretended the brush was actually talking to me and giving me a strategy for how to get Abbie to sit still so I could brush her hair. The thing is Abbie will eventually sit still to have her hair brushed, but not until the game is played out. This might sound strange perhaps to my readers, but it makes perfect sense to me. After the game was over, while Abbie was sitting getting her hair brushed, she asked me two questions. Basically she wanted to know how I understood her need to play a game before getting her hair brushed? To which I answered, "because I raised one just like you!" Her second question which she was dying to ask me was, "what strategy did the brush share with you?" She had me laughing hysterically! To play along, I made up a strategy which she found equally as funny.

So though I may not be raising Mattie now and have no children in my life, Mattie's seven years taught me MANY skills. When I listen to Mattie's inner voice within me, it makes me reflect on the fact that I could handle today because I was and will forever be the mother of a seven year old little boy who taught me skills beyond my years.

Wednesday, January 18, 2012

2012-01-18T22:01:00.000-05:00

Wednesday, January 18, 2012

Tonight's picture was taken in January of 2009. It reflects one of my happy memories living in the PICU. Anna (Mattie's physical therapist) and I worked very hard by day at retraining Mattie to walk. Remember Mattie on November 12, 2008, had his right leg operated on, specifically he had his femur (the bone that extends from the hip to the knee) removed and replaced with a prosthetic. A leg operation would have been hard enough to recover from, but keep in mind that Mattie also had prosthetics in both his right and left arms and left wrist. That did not provide him with much upper body strength to use a walker. In fact, Anna tried a front moving walker, and Mattie hated it. He had a hard time moving the walker forward. So then Anna tried him on this reverse walker, and Mattie seemed to gravitate to it. In fact, Mattie began taking a few steps and as you can see, Anna raised her arms in victory. Though Mattie tried very hard and had a great support team helping him which was comprised of Anna, Linda (Mattie's Childlife Specialist), Meg (one of Mattie's Childlife Interns, who was his racing buddy), and Jenny and Jessie (Mattie's art therapists), Mattie never was able to walk independently after his surgery in November of 2008. So the victory you see in this picture was short lived and in many ways, it was devastating for us to not only have a child battling cancer, but also a child with significant disabilities. The combination was hard to manage at times, and naturally Mattie understood his limitations and this impacted his mental health in profound ways.

Quote of the day: Vision is the art of seeing the invisible. ~ Jonathan Swift

The Foundation has exciting news to announce! Today, our Mattie Miracle Face of Hope, Lauren Chelenza launched her new website: www.bowsforhope.com. Lauren was diagnosed with Osteosarcoma about a week after Mattie, in August of 2008. However, we did not meet Lauren and her family through Georgetown University Hospital. That is because Lauren lives in Pennsylvania and was treated at a hospital in her state. So the question is how did we connect with Lauren? Lauren's aunt found Mattie's blog on the Internet and told her sister Carey (Lauren's mom) to read it pretty soon after Lauren was diagnosed. Carey then emailed me and the rest is history. Carey and I immediately related to each other, we had similar stories, had similar feelings about the experience, and since the medical treatment for cancer is basically standardized across the country, Mattie and Lauren were undergoing treatments about a week or so apart from each other. Though Mattie and Lauren NEVER met each other, they in a way had a camaraderie because they were fighting the same devastating disease at the same time. I am sure in many ways it is hard for Lauren to accept that Mattie died, because at her tender age of 13, I imagine it causes her to reflect on her own mortality.

Peter and I met Lauren and her family for the first time in December of 2009, at a Candlelighter's Christmas tree ribbon event in Washington, DC. Lauren has a brother whose name is Matthew and happens to be my Mattie's age. In fact, Matthew sent my Mattie gifts while he was battling cancer. Matthew and Mattie had similar tastes and Matthew's gifts always made Mattie laugh! Though Peter and I were traumatized at that Candlelighter's event, Lauren left an impression on us. As you can see from her picture she is a beautiful girl with a captivating smile. So bright, you wouldn't imagine that this face has experienced the horror of Osteosarcoma.

Lauren has taken her experience and uses it to bring awareness to her community. She began designing duct tape bows for a class assignment, and the next thing she knew she wasn't only generating funds but she was promoting a cause and spreading awareness of childhood cancer. Lauren to this date has generated thousands of dollars for Mattie Miracle, and I encourage you to visit her website where you can read HER own story. Lauren created her non-profit whose sole mission is to raise money for Mattie Miracle. She is passionate about this cause, she is energetic about it, and from my perspective she is a fine role model for teenage girls. She shows us all that with determination, a vision, and creativity anything is possible. Please visit Lauren's website and tell others about her great work.

Now I am switching gears to a totally different topic. The topic is Bald Barbie. Yes you read this correctly. A mom by the name of Rebecca Sypin contacted Mattel and asked the toy company to consider designing a bald version of Barbie. Rebecca's daughter is battling leukemia and she started a Facebook campaign which is gaining TREMENDOUS support. She feels that children with cancer and those with other diseases that cause hair loss would identify with this doll, but also the doll would bring public awareness to the crisis. Just an aside which I want to share with you...... if you ask most parents who have a child with cancer about their thoughts on the advocacy and support for breast cancer or even mention Susan G. Komen, you may be surprised by the reaction you get. Many parents will outright tell you.... I hate pink! I am sure that may sound shocking to you, but I believe this feeling is completely grounded in the frustration that childhood cancer is NOT promoted and in many cases it is swept under the rug by pharmaceutical companies and even big advocacy groups. In particular, I am singling out the American Cancer Society (ACS) since they blogged about bald Barbie and absolutely INCENSED the childhood cancer community. Which I will share with you below.

If you want to read about Rebecca's campaign, please click on this link:

http://abclocal.go.com/kabc/story?section=news/local/los_angeles&id=8503355

Over the course of the last two days, a major debate has unfolded. Andrew Becker, a director of media relations for the American Cancer Society had this to say about bald Barbie, ... the Bald Barbie movement could “do more harm than good for kids and parents." In addition, though you can't read his initial posting since it has been SCRUBBED from the Internet, he was so bold to state that childhood cancer was rare and therefore calling attention to it with a doll will only breed fear. In fact, his comments were down right insensitive and misinformed especially to all of us who are in a battle or lost the battle to childhood cancer. Frankly if I were the American Cancer Society, I would be wondering if Mr. Becker was really cut out for his job. Several parents posted that they wanted him to be fired. You can read the controversy through this link:

http://abcnews.go.com/blogs/health/2012/01/18/american-cancer-society-blogger-apologizes-for-bald-barbie-flub/

Today, after being blasted out of the water for over a day from childhood cancer groups, Andrew Becker (from ACS) apologized. You can click on the link below to read his apology. The problem however is the damage is already done. In fact I would like to think Mr. Becker is an isolated case of cluelessness. But he is not and ironically he represents a major cancer group. However, those of us in the cancer world know that ACS raises a lot of money but most of it goes toward their administrative overhead instead of being allocated to meaningful treatments and outcomes.

http://acspressroom.wordpress.com/2012/01/13/bald-barbie-demand-is-an-over-reach/

However, after sifting through all of this for the last two days, a part of me sits and ponders what I think about the whole bald Barbie campaign and using social media in this way to get the word out. I definitely understand Rebecca's motivations and also what she is trying to do. I admire her ingenuity and creativity and yet at the same time it just makes me pause.

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "I was sad to read that you were still feeling so badly on Sunday. I was grateful that you advocated for YOURSELF by calling the doctor and bless Peter for going to the pharmacy. Of course, Peter would respond that way. He is such a warm and caring man. As I've mentioned before, there are many qualities of Peter that remind me of my Dad. His response to you is one of them. What I feel is that Peter gives of himself in the important ways. He is able to connect with those that he cares about with a "listening heart." I appreciate the quotes that Charlie sends as they give me much to think about. The Tillich quote and the Valett one, the day before, stress the importance of not listening to some one's words, listen to their heart. I read the story and was reminded that our greatest learnings are those that we discover on our own. Thank you for sharing it with all of us. The playing of Dancing Queen at Zumba was beautiful. I'm glad that you were able to get to the class yesterday and thanks for your note last night. I listened to my body and went to bed early. It isn't something that I've been able to do lately. Caring for others beyond ourselves is a gift to those that we reach out to. The danger is that we don't care for ourselves as completely. This isn't a subtle comment about your care of Mattie. Peter and you went to the limit with Mattie and for good cause, he is and was your child. I know that it was very difficult to subject Mattie to all of his surgeries and treatments, only to have him not survive in the end, however, your words tell it all; " that was where the great meaning lies." Your courage and resolve to give him all of the experiences that you did before and during the 14 months of his illness are a lesson plan for parents. It left you with this big hole! Each time that you speak of another organization wanting to support the Foundation, I know that others are listening with their heart. It confirms the goodness that does exist within our world. I pray that you are feeling stronger today and send my love to you in all ways."

Tuesday, January 17, 2012

2012-01-17T22:36:00.001-05:00

Tuesday, January 17, 2012 -- Mattie died 123 weeks ago today.

Tonight's picture was taken in January of 2009. After our trip to New York City, Mattie came home with this great Empire State Building erector set. Mattie loved his trip up to the 102nd observatory, and decided he wanted a replica of this fine building in our living room. This set may look cute, but it took Peter and Mattie HOURS to assemble it. By the way, this Empire State Building is still standing tall in Mattie's room today. Building and creating were our life savers while Mattie was battling cancer. Even on horrible days, and we had many of them, we all built together and created. I think it kept us sane, talking to each other, and helped us forget life for a while and enabled us to transfer our energies to something more manageable and pleasurable. This erector set will always remind me of our trip to New York City together.

Quote of the day: The first duty of love is to listen. ~ Paul Tillich

I went to zumba today, and thankfully felt up to doing that. I hadn't moved in days, and really needed to escape our home and clear my head. Zumba seems like the perfect solution to many of my stresses. When I walked into class today, the instructor, Jenny and I began chatting. There are several moms from Mattie's school in the class and when I explained to Jenny that I was surprised I never met this one mom in particular, this caused us to pause. Jenny explained last week that this particular mom has a fourth grader at Mattie's school. My automatic reaction last week was... that is why I do not know her because Mattie was in kindergarten. Jenny and I let that comment sit, but both of us have been reflecting on it since last week. Because this mom with the fourth grader is actually a mom in Mattie's grade. Mattie would have been in fourth grade this year, but in my world, Mattie will always be a kindergartner. For me life stopped there at age 6, and at times I assume this is true for all of Mattie's friends. Of course it isn't! I am the only one with arrested development here. Jenny began our class today with ABBA's Dancing Queen. She did not say anything out loud, but to me that was her tribute to Mattie. Since we both knew that was Mattie's favorite song used at the hospital for his physical therapy sessions.

My friend Charlie sent me this quote today along with an article on listening which I will share below with you. Charlie is a former student of mine and I have found over the years that my very talented and good students remain in contact with me. I am very lucky to have had such a wonderful group of students who educated me and taught me to be a solid professor, and I feel particularly honored that they reached out to me throughout Mattie's battle with cancer and now our grief. As many of my faithful readers know, Charlie wrote to me each and every day while Mattie was battling cancer. She continues to send me quotes and I store them in a database that I pull from when I need a quote to address my feelings or thoughts for the day.

Today was Ann's birthday. For those coming to this blog for the first time, Ann was our Team Mattie coordinator. For 14 months while Mattie battled cancer, and actually beyond as we were mourning intensely, she coordinated lunches and dinners for us. I did not see the kitchen throughout Mattie's battle, and without the food from Team Mattie, I most likely wouldn't have eaten. Stopping to get food did not seem possible or even desirable to me. Actually caring for my needs was VERY low on my list because Mattie was our sole focus. I know Peter felt the same way! However, Ann's support goes beyond coordination of meals, in a nutshell we were basically united by cancer and death and therefore it provides for a rather unusual and at times complicated bond. We are different people and have very different needs and yet we are there for each other.

In my opinion, birthdays should be celebrated and certainly Ann has done a great deal for us, so there would be no way such a day could pass without us acknowledging her. A group of six of us met up for lunch to celebrate the day. As I told Ann in jest, today is not about her. It is about the opportunity for those in her life to acknowledge her. The art of a good friendship, as tonight's quote eloquently points out, is to listen. Though a gathering may not have been Ann's choice, I am happy she listened to my feelings. In fact, one of the greatest gifts of love we can give another is time together and time to listen. Listening sounds easy, but it actually is a very challenging and difficult skill. In fact, if you are listening deeply to someone, you will find it exhausting.

My friend Charlie sent me the article below, and when I read it, it simply resonated with me. Which I imagine she knew it would. The article is written by a Native American woman, who reflects on how the art of listening was taught to her by her father. I actually found the life lessons her father taught her very moving because he did not sit down and chat with her about the art and skill of listening. Nor did he model the behavior. He simply asked her thought provoking questions and gave her the freedom to figure out the message on her own time. She made mistakes along the way, but she was persistent and continued to try to hear someone's heart and listen between the words. My wish for all of you is that you always have someone in your life like Paula (the author of the article) who just doesn't listen but listens to your heart and between your words. Because it is usually between our words, that great meaning lies.

If You Really Pay Attention

--by Paula Underwood (Sep 21, 2009)

When I was a little bitty kiddy, about five, my Dad began a process … anytime somebody came and said something to us, my dad would say, "You remember what he said, honey girl?” I would tell my father what the person said until I got so good at it that I could repeat verbatim even long presentations of what the person had said.

And he did this all the time.

Finally, one day there was this old gentleman, Richard Thompson. I still remember his name, he lived across the street. And every time my Dad started to mow the lawn, there came Mr. Thompson. And so I would stand out there.

Dad says, “You might come and listen to this man, honey girl. He’s pretty interesting.” And so I listened to him, and then my dad would say, “What did you hear him say?” And I would tell him.

Well, eventually I was repeating all the stories he liked to share with my dad verbatim. I knew them all by heart.

And my Dad says, “You’re getting pretty good at that. But did you hear his heart?" And I thought, what? So I went around for days with my ear to people's chest trying to hear their hearts.

Finally my Dad created another learning situation for me by asking my mother to read an article from the newspaper. He says “Well, I guess if you want to understand that article, you have to read between the lines."

I thought, "Oh, read between the lines. Hear between the words."

So the next time I listened to Mr. Thompson’s stories, I tried to listen between the words. My Dad said, “I know you know his story, but did you hear his heart?” And I said, "Yes. He is very lonely and comes and shares his memories with you again and again because he’s asking you to keep him company in his memories."

It just came out of me. In other words, my heart echoed his heart.

And when you can listen at that level, then you can hear not only the people. If you really pay attention, you can hear what the Universe is saying.

--Paula Underwood, clan mother of the Turtle clan, Iroquois nation




Anderson, Heidi S.	RE: February 3 and Bear Delivery	3:43 pm	18 k
Linda Kim	Re: February 3 and Bear Delivery	3:21 pm	7 k
Anderson, Heidi S.	Build a Bear and Presentation	3:11 pm	10 k
pbrown@mattiemiracle.com	5% Day Foggy Bottom	2:31 pm	122 k
MAILER-DAEMON@p3plsmtp05-03.prod.phx3.secureserver.net	failure notice	2:25 pm	3 k
Peter Brown	Fw: Whole Foods Old Town Contact	2:07 pm	6 k
Sherri McCormack \| TwinLinks	RE:mattiebear.blogspot.com rankings	1:50 pm	3 k
Linda Kim	Re: Feb. 3	1:20 pm	4 k
Victoria Sardi-Brown, Ph.D, LPC	Fw: Listening	8:38 am	10 k
Bob and Ann Henshaw	RE: a special 13 year old	Mon, 11:28 pm	10 k
Bob and Ann Henshaw	FW: Week 2 Mini BLG	Mon, 11:26 pm	15 k
Denise Tordella	Thinking of you	Mon, 8:31 pm	3 k
Susan Scharf	Re: Hmmm interesting	Mon, 2:46 pm	14 k
Anderson, Heidi S.	St. Mary's Girl Scout Troop 3989	Mon, 11:44 am	9 k
Anderson, Heidi S.	Washington Post	Mon, 11:00 am	3 k
StatCounter.com Reports	Mattie Blog - Weekly Stats Report 9 Jan - 15 Jan 2012	Mon, 8:00 am	4 k
Jenny Cavanaugh	Zumba 1/16/2012	Sun, 9:06 pm	6 k
nrenfrow@verizon.net	Re: Re: Re: Whole Foods Flyer	Sun, 6:16 pm	7 k
ella fertitta	Research Paper	Sun, 3:42 pm	3 k
Deborah Keefe	Re: Mattie Miracle Walk -- We have a wonderful juggler	Sat, 8:58 am	7 k
Linda Kim	Re: 100 bears	Sat, 12:57 am	3 k
Lauren Hoffmann	RE: A contact request	Fri, 5:28 pm	54 k
Bob and Ann Henshaw	Girl Scout Cookies	Fri, 2:11 pm	266 k
pbrown@mattiemiracle.com	St. Baldrick's New Initative	Fri, 12:39 pm	3 k
Peter Brown	FW: Maine House	Fri, 12:12 pm	8 k
laughlady55@aol.com	Re: Missing You	Fri, 7:20 am	15 k
pbrown@mattiemiracle.com	RE: Mattie Miracle and Georgetown	Thu, 8:56 pm	14 k
Junko Funahashi	Re: Jan 17	Thu, 1:35 pm	8 k
Mex Carey	RE: Mattie Miracle and Georgetown	Thu, 1:34 am	16 k
Bob and Ann Henshaw	RE: January 2009	Wed, 9:13 pm	8 k
CCCA_Communications	CCCA's The Next Step Online, Vol. 12, No. 1, January 2012	01/11/2012 10:30 am	32 k
Kristen Kinnetz (MA OTN)	Re: Mattie Miracle and 5% Day	01/11/2012 10:27 am	24 k
Kristen Kinnetz (MA OTN)	Re: Mattie Miracle and 5% Day	01/11/2012 10:26 am	14 k
Kristen Kinnetz (MA OTN)	Re: Mattie Miracle and 5% Day	01/11/2012 9:53 am	10 k
Peter Brown	Fw: Mattie Miracle	01/11/2012 9:44 am	15 k
Anderson, Heidi S.	RE: Whole Foods Event	01/11/2012 8:35 am	32 k
Anderson, Heidi S.	RE: Girl Scout Meeting	01/11/2012 8:21 am	16 k
Anderson, Heidi S.	Girl Scout Meeting	01/11/2012 7:34 am	3 k
Kristen Snyder	Tuesday	01/10/2012 10:51 pm	2 k
Mooney, Tim	FW: Mattie Miracle Flyer	01/10/2012 10:38 pm	109 k

Monday, January 16, 2012

2012-01-16T17:59:00.000-05:00

Monday, January 16, 2012

Tonight's picture was taken in January of 2009. We were center stage at the Minskoff Theatre in New York City. Jenny, Mattie's outstanding art therapist, helped us obtain 6 special tickets to the Lion King and when the show was over, we got a back stage tour by the actress who played Nala (Simba's girlfriend in the Lion King). This actress was a lovely person and she tried very hard to engage Mattie! She had us pose for a picture, and she asked us to roar like a lion! Karen captured us in motion and as you can see Mattie thought the whole thing was funny!

Quote of the day: You give but little when you give of your possessions. It is when you give of yourself that you truly give. ~ Kahlil Gibran

Last night, I could tell my symptoms were not getting any better and resting wasn't helping. So at 9:30pm, I called my doctor's office and spoke to the on-call physician. For me that is always tricky because my physician understands my case, but that isn't true for all her colleagues. Luckily however, my physician's fellow was on call, and we had met each other before during my office visits. Needless to say, she prescribed more antibiotics and at 10pm, Peter was driving to CVS. My pain was intense enough for me to mobilize forces at 9:30pm on a Sunday, and I knew without new medication, there was no way I could have made it through the night with the pain I was in.

Thankfully the antibiotics are starting to work and I was able to keep my schedule today. I had a fundraising meeting scheduled today between the salon I go to and a cultural group in DC. Specifically the group is called, Italians in DC. This group is interested in promoting Mattie Miracle's cause and they were initially attracted to us because I am an Italian American. We have already scheduled the event for March 31, starting at 8pm. So as the plans unfold, I will certainly keep my readers informed.

Today's meeting seems to illustrate Gibran's quote. After all, these individuals are not giving me their possessions. In fact, they are giving me MUCH more than that! They are sharing their time, expertise, skills, and giving me access to both of their communities! To me this is an enormous gift because they are all busy professionals, but they are people who feel compelled to help others and to make a personal difference in this world. This was a very touching philosophy to hear and a philosophy that in my perspective makes the world more meaningful and a better place. It would be nice if we all had a village supporting us. But life doesn't always work out that way. Instead, I do believe villages (or support networks) are created one person at a time!

2012-01-15T18:58:00.000-05:00

Sunday, January 15, 2012

Tonight's picture was taken in January of 2009. We took Mattie to New York City to start his experimental treatment of MTP at Memorial Sloan Kettering. Our experiences at Sloan Kettering were LESS than stellar. In fact, the majority of the staff we interacted with were surly and attitudinal and I am thankful we did not have to stay there for more than one week. I will explain more about this below. In this picture, Mattie was in the childlife playroom at Sloan. The playroom was HUGE, as big as a warehouse and just as noisy and chaotic. The blue plane behind Mattie, was made by him. Linda (Mattie's childlife specialist) contacted Sloan's childlife director and gave her a heads up that Mattie loved constructing with boxes. So she saved several for Mattie and gave them to him for his day in the hospital. As you can see, Mattie had a way with boxes and the Sloan staff seemed overwhelmed by Mattie's desire to create and be different. I do want you to know that we did take this blue plane in a taxi with us back to the hotel, and though we did not transport it back to DC, we took many pictures for Mattie to remember his creation!

Quote of the day: The human heart feels things the eyes cannot see, and knows what the mind cannot understand. ~ Robert Valett

Today was like living in the land of the lost. I never got out of bed today, that is how good I am feeling. I have spent the day watching Hallmark movies and thankfully having big windows in our bedroom, I can see the birds and see the traffic going by at the same time.

As I was selecting the picture for the blog tonight, I couldn't help but reflect upon our experiences at Sloan. Sloan Kettering was not a positive experience for us for so many reasons. It was at Sloan that the head of pediatric sarcomas let us know that there were NO known cases of children with multifocal osteosarcoma who survived treatment in the world! Therefore in his perspective he recommended palliative care and no aggressive treatment for Mattie. That was a monumental piece of information to receive, and I felt he was talking to me as if Mattie were a number and not a live human being. We then had the pleasure to meeting the head of orthopaedic surgery, who was equally as depressing and just as dysfunctional at communicating with families. This surgeon had an overinflated ego the size of a watermelon. He made us wait in an exam room with Mattie for over two hours. It was beyond insensitive. If that wasn't bad enough, when he graced us with his presence he started talking about very grave things in front of Mattie. At which point I literally stopped him and told him that I was going to bring Mattie outside to wait with my parents and Karen who were in the waiting room. When I got back into the room, the doctor literally looked at Peter and I for five minutes. Neither Peter nor I knew what to make out of this odd behavior. Mind you we were paying for this staring contest. Any case, after the ridiculously long silence, he then began shaking his head and said he did not know what to say other than he was sorry. He too recommended NO surgery and palliative care. By the time we finished with both of these doctors we felt mortally wounded and that we were given a death sentence. Interestingly enough neither doctor seemed concerned by this emotional bomb they laid upon us that day.

Naturally these two doctors were ultimately right, but here is the thing..... could we follow this advice and not try our hardest to give Mattie some quality of life? I recall after hearing this news, we contacted Georgetown Hospital and Mattie's oncologist. The difference between Sloan and Georgetown was like night and day. Georgetown believes in hope and treating every childhood cancer aggressively, and as I always say, Georgetown gave us 14 extra months with Mattie, time we may not have had otherwise. Was the battle worth it in the end? Some may disagree with our choices, but there is NO way I could have lived with myself if we did not try everything to save Mattie. All the decisions, each day of the cancer battle, all the ups and downs of the process, and Mattie's death remain within me. They are memories all trapped within my mind and body and this stress (though some would say this stress is no longer a real threat) simply builds up at times and makes me sick.

Saturday, January 14, 2012

2012-01-14T19:45:00.000-05:00

Saturday, January 14, 2012

Tonight's picture was taken in January of 2009. Mattie had a clinic visit at the hospital and while there Jenny and Jessie (his art therapists) saved him a box. Mattie LOVED constructing all sorts of objects from boxes. You would be amazed the boxes that the hospital staff saved for Mattie, and then even more amazed by how he transformed them! As you can see Mattie took an ordinary box and made his version of a bicycle helmet out of it! He was wearing it at home and I snapped a picture of him. But if you knew Mattie, then you can tell from his facial expression that he wasn't really happy or feeling well. He was looking at me with a very glassy smile, and yet despite how he was feeling on even the worst days, he always tried to connect with me in some way.

Quote of the day: There is something in humility that strangely exalts the heart. ~ St. Augustine

This morning I attended a local gymnastics meet. Ann's youngest daughter, Abigail, was competing and Ann invited me to go with her. Typically Abigail's meets are out of town and therefore I can't attend them. In fact the last one I remember going to with Abigail was in January of 2010. A lot has changed in two years both developmentally for Abbie and emotionally for me.

I never studied gymnastics nor do I watch it on TV. So I do not understand how the sport is scored and judged, but that is okay. Actually it may be even better that I don't have this knowledge, because I was able to sit back today and watch things for there sheer grace and beauty. What I found intriguing was that my eye focused upon those gymnasts who presented themselves more like a dancer. Some looked like dancers and moved with the same grace and beauty. Clearly there are two very different philosophies to gymnastics, you either train and reward skill and power, or you really train the kids on the grace and poise of the sport. It would be lovely to see these things go together and I imagine they do as the children mature. Nonetheless, grace and style capture my mind and heart. It is a treat to watch a child defy gravity with beauty and to see her facial expression to match.

It was evident to me that the girls performing really had humility and for the most part supported their team mates, which was lovely to see. It is through this humility that I think the hearts of those in the audience are captured. Nonetheless, I would have to say that the children managed the stress of the day better than most of the adults in the room. The level of tension and anxiety in the room were high and I came home and I asked Peter, what on earth is all of this for? This is when my cancer world collides with the real world, and things or priorities do not make sense.

I spent the rest of the day at home in bed. I haven't been feeling well all week, and the pain has culminated this weekend. So I just have to rest. I truly believe all my physical ailments are very tied to grief and stress and most likely a direct result of the 14 months of intense stress fighting Mattie's cancer. This is a stress that lies dormant within my body and seems to pop up at interesting times. Any case, I am signing off for tonight in hopes that tomorrow is a better day.

Friday, January 13, 2012

2012-01-13T20:46:00.000-05:00

Friday, January 13, 2012

Tonight's picture was taken in January of 2009 in a hotel in New York City. We took Mattie to New York to begin his experimental treatment of MTP at Sloan Kettering. I will never forget the hotel, The Affinia Gardens, we stayed at! When we checked into the hotel, they took one look at Mattie and us in the lobby, and immediately upgraded us to a suite with a kitchen, two bedrooms, and two balconies. Some how we really needed that touch of kindness. Thankfully we had Karen and our former neighbors from Washington, DC in the city, and it made the fear of having to be in a hotel and starting a new therapy less isolating. However, on the day of our arrival into the hotel, we were handed a package that came in the mail for us. The package was from Linda, Mattie's Childlife Specialist. I distinctly remember the card within the package, because she wanted us to know that our Georgetown Hospital family were thinking of us while we were away. I found that SO touching. Mattie loved all the great items Linda sent him. Linda knew exactly the kinds of things that interested Mattie, and the LEGOs and puzzles were a hit.

Quote of the day: We're never so vulnerable than when we trust someone -- but paradoxically, if we can not trust, neither can we find love or joy. ~ Walter Anderson

I have been reflecting on our dinner out with Jerry and Nancy this week. As I mentioned in Wednesday's blog, Jerry and Nancy were music volunteers at the hospital, who we instantly related to and appreciated because of their kindness, healthy diversion from our cancer battle, and their positive impact on Mattie. While at dinner we began talking about what our experiences were like living at Georgetown Hospital. After all, Jerry and Nancy met in the hospital while Nancy's son and Jerry's niece were in the PICU. So we all know quite well from a personal standpoint what it feels like to live in a PICU.

I sometimes make the assumption that we all have the same experiences, especially when living under the same conditions. But of course that is NOT true. I feel as if Peter and I have lived out Anderson's quote, because as soon as Mattie was hospitalized in August of 2008, we were very vulnerable. We did not have our friends and family around us and EVERYTHING and EVERYONE seemed foreign to us. Actually I would even beg to say that living in a hospital environment is like moving to another country, because there are customs, traditions, values, and a whole order to how the place operates. It is safe to say that we were hospital outsiders in August of 2008. However, Peter and I had a similar philosophy.... if nurses were going to come into our room and work with Mattie, then we were going to get to know them personally. Actually I am not sure if this is my philosophy in life because of my profession or because this is who I am at the core. Getting connected to people is important to me, and it was never more important than in the PICU. We got to know who our nurses were dating, we learned about their husbands, their children, their homes, their pets, their hobbies, their vacations, and so much more. Things you would most likely share with your family and friends. So while we were adjusting to their system and culture, they were also adjusting and getting accustomed to ours! I made the assumption that ALL pediatric families related to their nurses the same way we did. But as I was talking to Jerry and Nancy, they just looked at me in amazement. They were looking because they never forged this type of connection with their nurses and they went on further to say that they really don't see this happening with other patients they observe and work with.

I am not sure how I feel about learning this news. About our uniqueness! But I guess a part of me isn't surprised. I always felt that Mattie's nurses bonded with us and they were no longer just our healthcare workers, but they became part of our medical family fighting osteosarcoma with us. Mattie's nurses looked out for us, they advocated for us, and it wasn't unusual for me to receive hugs, a back rub, and hot tea from them! All extraordinary and compassionate women. In addition, my hypothesis is that Mattie's experience with some of them was so challenging that several of them either left the unit or even the hospital to work somewhere else. Naturally no one will ever confirm that for me, but there seemed to be a mass exodus of people after Mattie died.

So as Anderson's quote implies, by being vulnerable, honest, and sharing our feelings, fears, tears, and laughter, we developed a great deal of trust in one another. Through this trust.... love, hope, and joy were achieved. Who knew such things were even possible in a PICU. However, as we admitted to Jerry and Nancy, when Mattie died on September 8, 2009, we lost a huge part of our life that day, but when we had to leave our medical family behind and head home, it made the loss seem almost impossible. We entered the hospital as three people, and left with only two! In addition, the people we turned to for 14 months during Mattie's cancer battle, were no longer part of our daily community. Cancer is all about loss, and the loss does not only occur at the time of diagnosis and perhaps death. It happens at every stage of the treatment and even recovery process.

Today was another whirlwind day with a six hour long license board meeting and ethics violation trial. So I am wiped out tonight. However, I would like to share one more commentary from the undergraduate reflection papers. I found this one quite insightful.

"To be completely honest, over the course of my Georgetown career, there have been few classes that I have looked back and gone "that was highly impactful to who I am as a person." This class has been able to have this effect on me mainly because of our involvement in Mattie Miracle. It has been an unbelievable experience and one that I hope to stay involved with throughout the following years. Throughout my life, I have been fortunate enough to be able to experience working for my family's foundation that gives away money each year. This is an extremely rewarding experience but it is not the same as what we did with Mattie Miracle. This project has been hands on, and we have been able to see the actual contributions and suggestions we made come to fruition. The event throughout this process that really stuck out the most was helping push the snack cart throughout the pediatric units. This was an unbelievable experience and really opened up our eyes when we did it. The thing that stood out about it was the extremes. There were the really young kids, who were in a crib and had so many things hooked up to them, it was devastating. Then on the other extreme, were the older kids who looked like they were more towards our age. This was something that we could relate to. But what it really did was put everything in perspective. We go through our days complaining about little things like a homework assignment or paper, while in reality we have an amazing opportunity to go to this amazing school while we all have relatively good health. We worry about things that are so minuscule in comparison to what these kids are going through that when you see their lives it really gives you a deep appreciation for what you have in your own life. In addition, when we pushed the cart around, we got to see the faces of the parents as they were actually going through the process. Vicki and Peter have already gone through it, as they talked to us in class. That is not to take away from anything they have been through, but they are not in the process at the current moment like these people. Seeing their faces and the pain that was in these parents as they watched their children go through this extremely tough process was unbelievably hard to see."

Thursday, January 12, 2012

2012-01-12T22:08:00.000-05:00

Thursday, January 12, 2012

Tonight's picture was taken in January of 2009. Mattie was home between hospital treatments, and what you maybe able to see in the background of this picture was Mattie's hospital bed in our living room. Cancer transformed every aspect of our lives. Our home included. Every corner of it looked like a hospital with medical supplies, IV poles, commodes, a wheelchair, and as time evolved oxygen tanks and pain pumps. Memories that will always linger within me. I captured a tender moment between Peter and Mattie here and from Mattie's bright smile it was evident who was taking the picture. Mattie reserved a special smile and look for me. Though cancer ravaged his body, his smile and beautiful eyes remained unchanged.

Quote of the day: The greatest test of courage on earth is to bear defeat without losing heart. ~ Robert G. Ingersoll

Ingersoll's quote couldn't be more on target. How does one handle defeat without losing heart? It is some times hard not to lose heart especially when I reflect on the large defeat of losing Mattie to osteosarcoma. Yet we try to take it one day at a time and attempt to find courage in order to continue the journey without Mattie.

I spent a great deal of the morning balancing several different Foundation items and projects. Though I do not like multitasking, I can do this quite well. I had years of practice while pursuing an education, working, and then balancing Mattie. Yet post-cancer, I sometimes have a shorter fuse, and juggling different things only brings upon further stress and physical symptoms.

In the midst of this busy day, I had the wonderful opportunity to meet my friend Margaret for lunch. As my faithful readers know, Margaret was Mattie's first preschool teacher. We met Margaret in 2005, and now seven years later, we are still friends. In fact, I loved Margaret as a teacher and a person from the first day I met her. I sensed she would be the right teacher for Mattie and my mom instincts were correct. Mattie grew and developed exponentially in her classroom and at the same time she provided me with great support, insights, and feedback. Over time our friendship grew and we only became closer. When we are together time simply slips by. We have the art of conversation, connecting, and sharing with one another and today was no different. Though Mattie is not physically with me, the friendships he made and left me with are profound. Margaret and I often reflect on Mattie's first year at Resurrection Children's Center. Because it was within that year, or should I say during the first day of school, that Mattie found what we call his soul mate. Mattie and his friend Zachary were soul friends. They understood each other, appreciated each other, and were fiercely loyal! They had an unusual friendship, one that made even adults pause, because it was intense and yet so natural.

After my lunch with Margaret, I went to Mattie's school to meet up with Donna. Donna has become my friend and is one of the kindergarten teachers at Mattie's school. Some of you may recall that I did a Matisse and Picasso lecture series in her class last year. Donna has invited me back to her class this year, and I will give my three part lecture series in April to her students. However, what is very evident from seeing Margaret and Donna today is I fit in very well with teachers. We talk the same talk and we just get the challenges of teaching. As Donna and I walked our way to her classroom, along the way, we chatted with Bob (the head of Mattie's lower school, and also known to my faithful readers as the Magic Man), Leslie (Mattie's kindergarten teacher), several other teachers, and even a parent and her middle school child. Donna and I connected for several hours and we were not talking about the lecture series. We were simply talking about life, the Foundation, and Mattie. One of the topics we discussed was the art of storytelling. This is a form of education that I absolutely LOVE and I believe it can be incorporated into the classroom at all the developmental stages. I always used it at the college and graduate school levels, but I also know young children and children of all ages gravitate to it. I was expressing my concern to the teachers today about this new generation. We are so immersed into technology and SO focused upon grades that we are not teaching our children the core and fundamental values of life. Which are the life skills of listening, the art of conversation, and being able to emote and verbally express emotion! Sounds simple, but you would be surprised how challenging it is to have eye contact and conversation with children in today's day and age. We have become technology driven, which can be a beautiful tool, but also a curse. Storytelling captures one's attention and imagination. After all as you are process what you are hearing (which is also an important life skill), you are developing a picture that coincides with what you are hearing. In addition storytelling passes on cultural views and traditions and it also teaches children about non-verbal mannerisms and expressions. But at the heart of the matter, storytelling evokes feelings. Feelings that can be discussed and it is through these deeper conversations much more can be learned on ANY subject matter. Needless to say, we had another stimulating afternoon of conversation!

I would like to share another commentary for one of the undergraduate reflection papers. "The work we performed for Mattie Miracle and more importantly the way we impacted the children's lives was so special to me. We got thank you emails from parents telling us that their kids cannot stop talking about how much fun they had at one of our practices or at the Georgetown Basketball game. This made all of the work worth it because not only did we get to see the smiles we were putting on the kids' faces but the parents were so appreciative of our actions as well. Interacting with the kids and going up to the pediatric ward in the Lombardi Cancer Center made me realize how lucky I am and how much I have. I realized that I need to do more to help out people who are less fortunate than me more often. I am blessed with so much and I need to start giving more. Overall I enjoyed working with Mattie Miracle. It taught me a lot about who I am and how much a difference just a few college kids can actually make."

I would like to end tonight's posting with a snippet of a song I heard on the radio today. It is brand new, so the full song isn't on the Internet yet. Nonetheless, when I heard this song, it made me stop and want to hear ALL of it. I hope you listen to it, because it should give all of us PAUSE and re-evaluate our priorities. For me, cancer did that for me, I am happy I did not miss Mattie's seven years of his life, because I would never have had the chance to make up for that lost time. I introduce you to Phil Vassar's song entitled, Don't Miss Your Life!

http://www.wmad.com/pages/conway.html?article=9602489

Wednesday, January 11, 2012

2012-01-11T18:56:00.001-05:00

Wednesday, January 11, 2012

Tonight's picture was taken in January of 2009. We took Mattie to New York City for the second time, to begin an experimental treatment at Sloan Kettering. The treatment was started at Sloan and then through a compassionate release program, the remaining dosages were given through Georgetown Hospital. Before Mattie began treatment, we took him to some of the wonderful sights of NYC. Though it was cold out, Mattie enjoyed the boat ride and passing by the Statue of Liberty. Caring for a child with a major disability provides great challenges, however, trying to do this in NYC was double challenging for me. Getting Mattie in and out of taxis was a feat and just moving at the quick and lively pace of NYC made life with cancer much harder. However, Peter and I worked hard at sheltering Mattie from these stressors and we particularly were aggressive about protecting his feelings especially when people looked at him like either he was a physical misfit or worse with great pity.

Quote of the day: As human beings, our greatness lies not so much in being able to remake the world as in being able to remake ourselves. ~ Mahatma Gandhi

Gandhi's quote is quite profound. I think it takes great effort to remake one's self. First that alone requires one to develop introspection into one's life and how one is being with the world, but second it then requires energy, will power, courage, and commitment to achieve this make over. Self change is hard just in general. If you doubt this just ask anyone who is addicted to a substance or activity, or ask someone who is trying to lose weight, or even ask a mom or dad who is having trouble parenting a child. Yet through self change or by remaking ourselves, it is miraculous to see how others (or the world) around us also change.

I know for me, having to remake myself after Mattie's death has been challenging, stressful, and at times disheartening. Mainly I guess because I did not ask for this change. I spent a great deal of time getting my education and working in the mental health field, and yet how I saw using these experiences and credentials no longer interest me. I have been forced to re-evaluate myself professionally as well as personally, and I believe Mattie's death has sometimes made me pause and ask why bother?

It was another grey and rainy day in Washington, DC. I met up for lunch with my friend Tina and we had a very stimulating conversation about fundraising ideas for Mattie Miracle. Over the course of the last month or so, she has been generating a list of ideas for me to consider. I appreciate this brainstorming because unfortunately right now the Foundation does not have a staff. Peter and I are the staff and at times it becomes a juggling act to try to create and generate ideas, while at the same time running programs and maintaining the administrative side of running the Foundation. I am always open to new ideas and certainly new connections and possibilities. It is through new connections that the 5% Whole Foods day came to our attention. In the midst of talking ,Tina and I had the good fortune of being treated to homemade chicken soup at a local restaurant. It was the perfect meal for a damp and cold day. In a way, like other people talk about their children or work, my equivalent is talking about the Foundation. The Foundation is my job, but it is also requires nurturing. I appreciate Tina being able to see that.

Tonight, Peter and I had dinner with Jerry and Nancy. Our favorite music volunteers from the Hospital. We met them during our first week at Georgetown Hospital. Mattie's first week of chemotherapy was scary and stressful for all of us, yet when Jerry and Nancy came into our room one evening and started playing their keyboard and singing, we all forgot our problems! Mattie loved the music and as time passed, Jerry and Nancy created a Name that Tune game for Mattie which he loved. The cute part was that Jerry wanted Mattie to feel good about his singing and his participation, so Jerry would email me ahead of time to consult on the songs he would select for the game. He wanted to make sure whatever he played that Mattie actually knew the song and would be able to win Name that tune! So in essence we met this talented twosome in 2008, and we have been friends who periodically get together every other month or so for dinner. Another special connection in our lives thanks to Mattie. Several of my readers have asked me about Jerry and Nancy and I do want you to know that Jerry and Nancy are just friends, they are not married. They met and supported each other at the hospital when Nancy's son and Jerry's niece were undergoing cancer treatment. Cancer united them and once their family members went into remission, they wanted to give back to the hospital and therefore have been musical volunteers for several years. A rather touching story!

I would like to end tonight's posting with a passage from one of the undergraduate student reflection papers, "The Mattie Miracle Cancer Foundation project was the first time in my Georgetown career where I actually applied myself in a very positive way. At the start of the project, I was very excited and nervous at the same time. I didn't know how everything was going to turn out. When Vicki and Peter came to speak with us, I was very nervous when thinking of the semester long project. As they showed us the presentation the day they came to speak, things got very emotional and the entire room was just in complete silence. Actually going to the Lombardi Cancer Center and seeing the kids there made me grateful for the life I have. I didn't realize how good I had it. After complaining about this and that, it was a real humbling experience to go over to the hospital and see everything that was going on. This realization allowed me to really put my all into this project. Doing something for a greater cause really brings people together. Before this, I had never experienced anything like this at Georgetown before. I am grateful for this wonderful opportunity."

Tuesday, January 10, 2012

2012-01-10T21:54:00.000-05:00

Tuesday, January 10, 2012 -- Mattie died 122 weeks ago today.

Tonight's picture was taken in April of 2009. Mattie was in the Lombardi Clinic, and if you knew Mattie, then you know that when he was in clinic he was going to find Jenny and Jessie, his art therapists. Jenny and Jessie are very talented professionals who unfortunately no longer work at Georgetown. For us, they made the clinic special and they knew how to engage Mattie both artistically, mentally, and socially. A rare gift! This cutie sitting next to Mattie is Maya. Mattie and Maya are the same age and Maya was the ONLY friend Mattie's age that he made at the hospital. I can recall the day they met in fact. Mattie, Maya, and a few other kids were sitting around the art table creating independently. Maya started talking about how she hated to get pricked with a needle. She expressed herself very well and shared her feelings. To my surprise, Mattie out of no where piped up and told her that he could relate to her and her feelings. That was it, that conversation cemented their friendship. Maya is very bright, humorous, creative, and a live wire. She was an excellent match for Mattie. In front of them, you can see a painting of a rainbow they painted together. This painting still exists and it is a ceiling tile within the Lombardi Clinic. I am sure many people pass under this rainbow each day, but to me this rainbow is special. It signifies the time when Mattie was alive and it captures the boldness and beauty of a special friendship.

Quote of the day: A bit of fragrance always clings to the hand that gives you roses. ~ Chinese Proverb

My friend Charlie sent me this quote today, and I simply love it. I love it because the visualization it conjures up is beautiful. In essence when we give someone a gift, not just roses, a part of that gift remains on our hands. Our hands are responsible for sharing and spreading happiness and these emotions do stay with us. They get absorbed in our skin, not unlike lotion. I know I feel this way when I give someone I care about a gift, but this Chinese proverb captures that feeling in a very meaningful and visually pleasing manner.

Today was my first day back to zumba since I returned home from our trip. It is always hard to get motivated to start exercising again, but as always the class doesn't disappoint me. By the time the hour was up, I felt better physically and mentally.

As today is a Tuesday which marks the 122 week of Mattie's death, heading back to Georgetown Hospital was not an easy endeavor. But I attended the parent advisory board meeting tonight. Mind you I was just on campus yesterday too! To some extent I have to compartmentalize my emotions when I enter the hospital, otherwise I couldn't muster the energy to make it to the pediatric unit. The meetings are held in the childlife playroom, a playroom that was VERY significant to Mattie. To many of the parents sitting in the meeting, they never sat in this playroom. When their children were being treated at the hospital the playroom hadn't been built yet. But for me each corner of the playroom holds memories.

One of the items we discussed tonight was the annual medical grand rounds in which parents present to doctors and nurses about family centered care and their experiences at the hospital. Some of my faithful readers may recall that I testified at the medical grand rounds in May of 2011. I have been asked to speak again this year on April 20. However, I couldn't hold my tongue and asked what we were planning on doing to get physicians to actually attend this event. The chief of the PICU sits on our advisory board and I said it was "appalling" that parents should prepare and come to this event and then doctors do not show up. Certainly I am smart enough to know that one can't demand an attending physician to show up anywhere, but certainly medical school students can be mandated to do anything. To me medical students need to hear from parents directly and in many ways we are their paying customers and our feedback should be important to them. It was discussed that nurses were in attendance in 2011 and that nurses would be invited again this year. With that, again, I stopped the conversation and said I am not surprised the nurses attend, however, they are not the ones who need to be exposed to psychosocial content and the nature of parents' concerns, it is doctors. Parents all around me at the meeting were nodding their heads in agreement, and it is hard to challenge what I am saying, especially if you lived within a hospital setting. I lived in a hospital for 14 months and I can count on one hand the medical doctors who truly understood, embraced, and practiced family centered care. So it is my hope that the medical profession will not only talk the talk, but walk the walk. The walk has to start in MED SCHOOL! Whether physicians want to accept it or not, patients are taking a much more active role in their health care and the care of their family, and therefore instead of this being viewed as a hindrance or obstacle, it should be viewed as an added benefit.

After the meeting, I had the wonderful opportunity to talk to one of the hospital administrators who has become a friend. He let me know on stressful and challenging days, he stops and reads Mattie's blog. That the blog gives him perspective. I was deeply touched by his feelings and thoughts. On the drive home I looked up into the sky and there was a glowing and very full Mattie Moon guiding me home.

As promised, I would like to end tonight's posting with two of the commentaries I have received from the Fall undergraduate business class. As I continue to read these reflection papers, I realize introducing these students to childhood cancer was a profound experience for them.

From a female undergraduate, "There were many factors at play to consider when evaluating how the project has affected me as a student of creativity, as a group member, and as a human being. This project has been unlike any I have done in the business school or at Georgetown in general. It is a question of being human at our very core, suffering and accompanying each other as best we can. Vicki and Peter are incredible people and I think that there is no other foundation that we could have worked for that would have provided such an experience of mutual gratitude. I felt like they really opened their hearts towards us and as much as we helped their organization, they helped us back. Vicki was constantly available through email, and both of them actually took the time to come to our event at the hospital."

From a male undergraduate, "The project itself is very humbling. I'm known for being very vocal during everyday affairs with things that bother or annoy me. However, walking over to the hospital and seeing what the children go through is a very humbling experience. When you realize how sick some of them are and what they are going through, suddenly the problems in your life don't seem so bad. I won't pretend that it isn't human nature to find something to complain about during the day, but at least for those moments, you realize just how much easier your life is than any of the children's lives at the hospital."

Monday, January 9, 2012

2012-01-09T20:57:00.001-05:00

Monday, January 9, 2012

Tonight's picture was taken in February of 2009. Mattie was on his way to the Lombardi Clinic for treatment. Next to Mattie and I was Jenny, one of Mattie's incredible art therapists. What you may not be able to tell from this picture was Mattie was in a hallway that ramped down to the Lombardi Center atrium. When Mattie was feeling in the mood, he loved going down this ramp, as if he were on a roller coaster speeding down hill. Naturally Jenny nor I ever let his wheelchair completely go from our hands, but we definitely gave him the opportunity to feel like he was in a roller coaster seat speeding down the ramp. Notice a hospital employee in the background watching our antics. With Mattie, there were a lot of antics and those who knew him appreciated that side of him. In that respect Mattie made cancer easier for us because he had many interests, a good sense of humor, and knew how to captivate the attention of others.

Quote of the day: It is well to be prepared for life as it is, but it is better to be prepared to make life better than it is. ~ Sargent Shriver

I began my day with a beautiful text message from Toni, Brandon's mom. As my faithful readers know, Brandon was Mattie's big buddy. Mattie let VERY few people into his life while he was battling cancer. In fact, I can count on one hand the friends Mattie made at the hospital who were either ill or had cancer. The list was short, it was Brandon, Jocelyn, and Maya. Mattie related to Brandon, and I deeply believe he felt Brandon understood and appreciated him. Brandon and Mattie battled cancer together and in the process we came to love him and his family. Toni and I fortunately had each other for support and both of us express ourselves passionately, so we appreciated each other right away. Toni knew Peter and I were headed back to campus today and she understands how challenging returning to the scene of the crime is. Toni gets it because she survived days and nights within the hospital and saw the horror that cancer produces in your child and within yourself. To some extent I do not think others can possibly grasp the full extent of the trauma of returning to the hospital, if you haven't lived through the process yourself. Toni wished us well today and wanted me to know the impact Mattie has made on Brandon's life! Her text message brought an immediate smile to my day and in a way we felt less alone as we journeyed back to campus.

Peter's former business school professor Bob Bies (http://explore.georgetown.edu/people/biesr/?PageTemplateID=319) invited us back to Georgetown this semester to work with his MBA students. We are their community based learning project. Which means we are their business client and as such they need to learn and hear about the Foundation and then utilize their knowledge to help us develop strategies that will enable us to grow more productively and creatively.

Many of you many recall we worked with Bob's undergraduates in the Fall. What I love about Bob's teaching style is he operationalizes Shriver's quote. He challenges students "to make life better than it is." Throughout the Fall semester, Peter and I wondered whether we were making an impact on the young minds we interacted with in Bob's class. Today, Bob handed us copies of his undergraduate students' process papers. Each student in the class wrote a one to two page paper about their experience interacting with us and working for Mattie Miracle. I haven't read through them all, but what I am reading is amazing. If we had any doubt whether we impacted them or got our message across, these papers squelch any of these concerns. Over the course of this week, I will share with you some of the writings we received today. This is definitely one of the aspects of teaching I miss. I always learned deeply from my students.

As we were driving to the Georgetown campus today I had a bag of what I call "Mattie props" in the back seat of the car. These props are all meaningful toys or items of Mattie's that I bring because I feel it will help personalize the beauty of our son. We work very hard to make him real for the students and to let them understand that this Foundation is based on the memory of a once vibrant, healthy, dynamic, and creative little boy. All the props were secured nicely in the back seat, and yet while driving all of a sudden one of Mattie's toys started to make noise. Mattie's Thomas the Tank engine just seemed to miraculously turn itself on and its wheels were moving. Both Peter and I took that as a sign. A sign that I shared with the students at the end of class. I told them that Mattie was here with us today and approved of my selection to bring Thomas into the classroom and to share his life story with them. Before our presentation began, I took a picture of the props. On the desk was Sunshine (Mattie's yellow boa constrictor), Thomas the Tank engine, Scooby Doo, a Lego yellow grater (for road building), a picture of Mattie's Mr. Sun painting with a butterfly propped on top, and on the floor was an excavator, Mac from the movie Cars, Lightning McQueen, Wall-E, and naturally a rubber ROACH!

I snapped a picture of Peter today presenting to the Imagination and Creativity class. There were 46 students in the class, an ironic number, since 46 children a day are diagnosed with cancer. A message we closed our lecture with, because we wanted them to know they were lucky that they were healthy and able to learn, because while this was happening, children are being told they have cancer. It is profound to think that if we congregated all the children diagnosed with cancer today, this would fill their 46 seats in this classroom!

Perhaps I was just more observant or the dynamics in today's class were different. But what the undergraduates said to us in words, I could see on the faces and non-verbals of the MBA students before us. Like the undergraduate students, the MBA students also asked good questions and were engaged, but I sensed that our story was overwhelming for them to hear. I shall see if I am right when I read their reflection papers at the end of the semester, but I told Peter at dinner that I read the faces and some were just overwhelmed. I actually do not feel badly about that, mainly because when students are overwhelmed great progress can be made. To some extent cancer and the death of a child should make them feel uneasy and if it did not then I would have thought we did not do our jobs today. Childhood cancer needs to evoke emotion, because it is through this emotion that passion for change and the conviction to think differently and innovatively are inspired.

Just like last semester, we went through a PowerPoint slide presentation with the students and also showed them a "remember me" video of Mattie which is posted to this blog. The video instantly moved many of the students and some of them were crying and sniffling. In fact, it takes super human strength for Peter and I to be in the same room with this video and then be asked to speak as soon as the lights come back on. In our PowerPoint presentation there is a slide that addresses the psychosocial impact of cancer. However, before discussing the content of that slide, I had the students pause and reflect on how their lives would change if I told each and every one of them that they were diagnosed with osteosarcoma today. With the undergraduates I basically went through this visualization exercise with them and gave them the responses. Today I paused and asked the class to generate the responses for themselves. I got about four of five students who bravely stated their feelings and each one was very profound and right on target. For example, the first student to respond said to me if he were diagnosed he would be upset about how his life was going to change. That he wouldn't be able to come to class and better yet that getting an MBA may not even be a priority any more. Bravo! Indeed, they got it right away, because cancer demolishes plans and one's hope for the future. Instead, the only thing that matters during the battle are life and death decisions and factors.

As we finished class today, several students came up to talk with us. However, we all immediately noticed it was snowing. Bob took that as another sign from Mattie, and he maybe right. This was what things looked like as we were driving home!

I would like to end tonight's posting with two paragraphs from an undergraduate reflection paper. It is my hope that as I continue to share these comments, you will see the effect we had on these students. This male student wrote, "In high school, I volunteered at Ronald McDonald House charities. There, I frequently met families of pediatric cancer patients. Going into this consultant project with the Mattie Miracle Cancer Foundation, I expected Vicki and Peter's story to be similar to the ones I had heard in the past. I could not have been more wrong. I was completely blown away by their emotion as well as their can-do attitude. It must have been extremely tough for them to start a Foundation that remembers Mattie's life and also looks to raise money for the cause for Mattie's death. A big reason why I was so excited and passionate about working with my team on this project was because I felt an emotional connection. Knowing that my work was benefiting the lives of others in a very tangible way not only made me want to help out more, but also encouraged me to tell my friends and family about the Mattie Miracle cause."

Sunday, January 8, 2012

2012-01-08T18:27:00.001-05:00

Sunday, January 8, 2012

Tonight's picture was taken at Mattie's March in April of 2009. This was an event Team Mattie created to celebrate him and what we thought was going to be the end of his treatment regimen. Unfortunately for Mattie when his chemotherapy ended in May, he then had to have a sternotomy in June (to remove tumors in his lungs) and then we learned of his terminal status in August of 2009. However, I wanted to post this picture tonight because it captured my attention yesterday. Yesterday I was going through a ton of pictures to find just the right documentation for our Foundation's brochure. If I could entitle this photo, I would call it "friends." While the program of events was occurring on the left hand side, Mattie on the right hand side of this photo was surrounded by his buddies. With him were Brandon (his big buddy) and Robbie (one of Mattie's favorite hospital volunteers). However, look closely, there was someone behind Robbie! That little person happened to be Zachary, Mattie's very close friend and preschool buddy. Zachary stayed close to Mattie that entire day, but then again, what are best friends for? Zachary made this choice to be with Mattie, which meant that he was separated from his family during the ceremony and also that hundreds of people were watching him from the stands during that time. To me that was a remarkable choice for a seven year old to make!

Quote of the day: The more we develop the habit of noticing goodness, the more our own sense of well being rises. ~ Brahma Kumaris

Peter and I had another working day! However, mid-day, I did take a break and we went for a walk on Roosevelt Island. While we were parking our car by the Island, we observed a mother with three children. One child had fallen down and was crying hysterically and her other two she wasn't paying any attention to which was a problem since they were dangerously close to the parking lot. We made note of this woman and her children because we literally stopped traffic to avoid cars from coming close to her wandering children. She did not acknowledge us or thank us, which was fine. Keep this in mind as my story continues!

Peter bought another box of crackers for me to feed the ducks and he keeps the box in his car trunk for our walks. Before entering onto Roosevelt Island, I had Peter give me a sleeve of crackers to take along with me on our journey. Part of me does this in memory of Mattie, because this is something he loved doing on the island.

However what wasn't fine was what took place later on our journey with this mother from the parking lot. During one portion of our walk on the Island there is a bridge and ducks like to congregate there. So I opened up my sleeve of crackers and began to feed the ducks. It was at that point, we spotted this mother and her three children again. The children came running over to watch the ducks being fed and when the mother tapped me on the shoulder, I thought she was going to ask me for some crackers so her boys could feed the ducks. However, to my dismay she decided to tap me on the shoulder to give me a lecture. Her lecture was about the harm I am doing to the ducks and that I shouldn't be feeding them. I gave her a look and I told her that her lecture wasn't going to stop me from feeding the ducks. With that she grabbed her children and shuffled them along, as if I were dangerous and committing a crime. She is lucky I held my tongue because if I told her the significance of why I feed the ducks then perhaps this would have taken her off her soap box. Needless to say she ruined the whole walk for me and the enjoyment I always had from feeding the ducks. She is lucky she was with three children today, because she had me so mad, I literally wanted to throw her right into the Potomac with the ducks.

I did come home and googled information about duck feeding and learned why bread and crackers aren't good for ducks. If you want to read this information, I posted the link below. However, I grew up feeding ducks and I never remember hearing about the dangers of carbohydrates for ducks! So even armed with this information, I have mixed feelings.
http://birding.about.com/od/birdfeeders/a/feedingducksbread.htm

Peter and I finished the Foundation's brochure today which was hard to do. Not only content wise, but laying it out and formatting it on the computer was a royal challenge. In addition, we prepped for tomorrow's lecture. The Foundation has been selected to be a community based learning project for a MBA course at Georgetown University. Last semester's business class was very fruitful and successful and I am thrilled that Peter's professor invited us back this semester. So stay tuned for highlights from tomorrow's experience.

I would like to end tonight's posting with an article I read in the Washington Post yesterday. This article pressed a lot of hot buttons for all of us at dinner last night. The article is entitled, In sickness and in health. A common phrase one hears at weddings! However, what happens when your spouse has a massive stroke at a young age and the stroke leaves him cognitively impaired? So impaired that he functions more like a child than an adult. How do you continue on? Is this person always your husband even when he becomes so ill that he can't care for himself or his family? The article details the lives of a family devastated by a stroke, however, the wife of the stroke survivor eventually divorces her husband and marries someone else. Yet the difference is her first husband is instrumental in her life and her second husband committed in his wedding vows to helping his wife with the care of her first husband. The reason why this article pushes a lot of buttons for people is most likely because we personalize the situation to our own lives. If we had a stroke, would our spouse want to marry someone else? What would become of us? These are scary questions, but real life problems, problems that I do not think we should jump in and judge too quickly. I guess I feel that way because the role of a caregiver of anyone with an impairment or illness is tiring financially, emotionally, and physically. Caregivers need support and without this support, the caregiver dwindles and this directly impacts the caregivee. Do I condone the fact that this wife divorced her husband and married another man, I DON'T know! But I do know that she lovingly includes her first husband in her life and I have a feeling if it weren't for her, he wouldn't have made so much progress in his recovery and outlook on life. I invite you to read this story for yourself and come to your own conclusions.

In sickness and in health

http://www.washingtonpost.com/lifestyle/magazine/a-family-learns-the-true-meaning-of-the-vow-in-sickness-and-in-health/2011/11/04/gIQAahyAdP_story.html

Saturday, January 7, 2012

2012-01-07T23:21:00.001-05:00

Saturday, January 7, 2012

Tonight's picture was taken in March of 2008, four months before Mattie was diagnosed with cancer. That March, Mattie and I flew out to Los Angeles because I had a conference to attend in Hawaii. While I worked in Hawaii for four days, my parents took care of Mattie. During our stay together in Los Angeles we took Mattie to the arboretum and my mom snapped this picture of us together. I still can recall Mattie running around that day through each of the different gardens. Mattie had a profound influence on all of us because we knew he preferred being outdoors and being one with nature, so over time, we too not only planned these kinds of activities for him but we also enjoyed seeking them out.

Quote of the day: The quality of your life is the quality of your relationships. ~ Anthony Robbins

Peter kept telling me all day that the temperature was climbing and it was in the 60s. I did register what he was saying but I frankly never moved from the kitchen table for about six hours. I am sorry I missed this warm day! I was very focused today on designing a Foundation brochure that describes who we are, our mission, our activities, our accomplishments and how to contact us. For the past several months, I literally have been accumulating brochures from different organizations in order to give me some ideas for the development of the Mattie Miracle brochure. I do not believe in reinventing the wheel especially when good brochure samples are already out there. Having the samples gave me great ideas and helped us tailor our own brochure.

So between Peter and I, we developed the first draft of our brochure today, and I have to say I am pleased with its content and style. I joked with him and said, "when we work together, there is no telling what we can accomplish." Which is a good way of feeling after being quarantined for six hours straight.

The highlight of today was meeting our friends Heidi and Phil for dinner. As many of my faithful blog readers know, I met Heidi in zumba class. Heidi knew exactly who I was when I entered the classroom, because she is an avid blog reader and has been following Mattie's story for years. She knew me before I even had met her. Heidi and I have a lot in common and we both enjoy trying new restaurants and food. Though she lives in VA, she has no hesitation to come to DC to meet. I must admit I am not used to this, since I find the Washington, DC area very funny. Though we really are a tri-state area (VA, MD, DC), people tend to stick to their own neck of the woods. The ironic part about all of this is I live in DC, but am used to commuting to Alexandria. Heidi is giving me the chance to get reacquainted with the wonderful restaurants located in DC. In fact, after dinner we walked around and we were absolutely stunned to find the streets near the Verizon Center packed with people and all the lights and action reminded us of Times Square in NY.

I would like to end tonight's blog posting with an article I received today from my friend, Debbie. Debbie and I had an email exchange last week about several of my hot buttons. Two of which are over programming of children and exposing our children to all sorts of competitions rather than allowing them the opportunity to do things for the sheer fun, exercise, and socialization of the activity. In the midst of our conversation, I told her that we as a society really need to return to a simpler way of life. I love technology, but it is also the cause of great stress, anxiety, demands, and the lack of communication for us. When Debbie saw this article entitled, The Joy of Quiet, today she knew this was something I would want to read. She was absolutely correct! I see that my perspective is not far off track, after all if people are paying $2000 or more a night for PEACE and QUIET, that fact seems to speak for itself. See if you can relate...........................

http://www.nytimes.com/2012/01/01/opinion/sunday/the-joy-of-quiet.html?_r=3&pagewanted=all

Friday, January 6, 2012

2012-01-06T21:06:00.002-05:00

Friday, January 6, 2012

Tonight's picture was taken in December of 2002, Mattie was 8 months old. Can you guess who he was looking at here? My faithful readers probably know without me even having to ask the question. In many of Mattie's pictures as a baby, you could tell whether he was looking at me or at Peter. I didn't deduce this actually, it was Peter who pointed this fact out to me. However, I must admit Peter was correct! Mattie was transfixed on me and I have been told that Mattie smiled a special smile just for me.

Quote of the day: The heart is like a garden, it can grow compassion or fear, resentment or love. What seeds will you plant there? ~ Jack Kornfield

Tonight's quote intrigues me. It seems to fall in line with my quotes of compassion and starting anew, which I posted a few days ago! However, being a realist, sometimes we must accept that life plants the seeds for you. You can't always elect to grow compassion, fear, resentment or love. Instead, I would beg to say that life plants ALL of these things in our lives, and what we CAN control is what we wish to cultivate and nurture. I will give you an example.

Having your child diagnosed with cancer maybe one of the most horrific things you can tell a parent. As bad as that is, and that is BAD, hearing that there is nothing left that can be done and your child will die, it simply devastating. I am very aware of the fact that there are other forms of devastation that human beings face on a daily basis, and I have never claimed to have corned the market on pain. But from my own perspective (which is what this blog journals) this has and continues to be my form of devastation. So reflecting back on the quote, it was life NOT me that planted cancer, cancer treatment, and the death of Mattie upon me. But what am I going to do with these horrific "seeds?!" I could check out on life, make other people as miserable as I feel, or simply hold accountable the medical and pharmaceutical professions for being inadequate, limited, and ineffective. However, I don't! Instead, I live with these seeds of destruction and instead of growing bitterness, fear, hostility, anger, and disgust (which is what can sprout from cancer), I try to grow the opposite of what the seeds can produce. None of us can control the seeds planted in our garden, but I am QUITE sure we all have control and should be empowered to assess our seeds and determine which we want to weed out and which must be watered, fed, and maintained within our heart.

I had the wonderful opportunity today to have lunch with my friends Denise and Marisa. Denise and I are both graduates of the George Washington University and her daughter Marisa was instrumental in helping me with Mattie in the summer of 2009. Marisa never knew Mattie when he was well, so she was at a disadvantage, yet she never skipped a beat and was able to handle the challenges of playing with a seven year old with cancer. Marisa is also the young lady who has run our Walk bake sale three years in a row. This year will be her fourth year with us. Marisa just got back from a term abroad to Florence and we had a wonderful time at lunch reliving her adventures and experiences. She even brought me back my own bottle of olive oil from Italy! It is very clear that travel maybe one of life's greatest educators and I am so happy to have seen this growth in Marisa.

That was the highlight of my day. However, it was a busy day and I find that tonight I am not feeling well. Between Peter and my doctor, they are working on getting me back to feeling better soon.

I would like to end tonight's posting with a beautiful and meaningful message I received today from Liz. I have never met Liz, we have only traded emails with each other. However, we are connected by mutual friends. I was deeply honored to receive Liz' message because what she is telling me in essence is I am like Anna. Liz wrote, "I’m an avid blog reader, and at some point last year we exchanged a few emails. I never got to meet Mattie, but I know of your blog through mutual school acquaintances and teachers. I wanted to pass along a blog post I recently read. This paragraph below stood out to me. I don’t know the woman who writes this blog, but I was drawn in by this post. It really captured everything I have been feeling over the years as I have read your blog. Your openness and willingness to share has meant so much to me as I’m sure it has to so many of your readers. Your point of view is so very important and I’m hopeful that many others will be able to see it one day. Thanks again for keeping up the blog and continuing to communicate with your readers. I for one am incredibly appreciative."

“At the start of 2011, I definitely would have told you that family is everything.

But a few weeks ago I sat with my friend Anna, who lost her Jack this year. She is suffering through excruciating pain that I’m afraid might just morph and never ease. But listen- when I looked at Anna- I was not looking at a woman with nothing. And it wasn’t just because she has Tim and Margaret left on this side. What I mean is that I was in the presence of a woman who has the entire world in her hands.

Anna is a woman who has power to heal -herself and others. Because Anna has choices. She could curse God and die, and we would all understand. But she doesn’t. She’s alive. Anna’s decision to write, to stay open, to invite us in when she’s most vulnerable, to get out of bed each morning, to keep choosing hope and love and life and to face the horrifically painful truth instead of hiding – her determination that THERE WILL STILL BE JOY, DAMN IT – these choices are healing and awakening her family, friends and readers. A teeny, teeny bit at a time. And since the worst has already happened, Anna is a woman who, at the moment, is loving and living without fear. And that is something.”

Thursday, January 5, 2012

2012-01-05T20:54:00.001-05:00

Thursday, January 5, 2012

Tonight's picture was taken in April of 2007, at Mattie's fifth birthday party! Mattie's party was held at the National Zoo and it was a day to remember. Why? Because it was pouring, not just drizzling or slightly raining! It was like a deluge, with flooding everywhere. The zoo's policy however is that parties go on rain or shine. Needless to say the kids got a tour of the zoo (outside) and we all got soaked to the bone. Umbrellas weren't cutting it! What I thought was horrific, the kids thought was an adventure and special. Since it was pouring there were NO other visitors at the zoo, so in a way, it was like a private tour for Mattie's birthday. In addition we were all in amazement to see how many animals were out in the rain and on display. My standing joke about the National Zoo is you go to the zoo to see the animals, and many of them are usually hiding and you land up seeing nothing. But that day, the animals were all out and about and putting on a good show.

Quote of the day: With each sunrise, we start anew. ~ Anonymous

With each sunrise, we start anew! What a beautiful and deeply meaningful quote. I find this just as stirring as "one day at a time." Both sayings are very simple and yet in their simplicity they inspire great hope. Why? Because one day may be difficult, horrific, and challenging and yet that day can be put to bed, and when we rise the next day there is the possibility that we can feel differently or in essence start anew. Anyone who has ever battled depression or grief for example understands this philosophy quite well, and many days it is our mantra going through our heads. It is a mantra that keeps us intact and with some sort of direction and hope for a tomorrow.

I know when Mattie was battling cancer I went from being a future oriented person to a person who could only live in the present. In many ways, that aspect of my life hasn't changed even though Mattie has died. I no longer think about the future, make plans for the future, or at times look forward to it. When in mental pain and anguish it takes as much energy as one can muster to make it through a single day. When you feel this dejected and burdened it is impossible, if not inhumane, to think of living a lifetime feeling this way. Which is why I believe the brain adapts and helps us move from a future orientation to processing life one day at a time.

Today was my friend Alison's birthday. Alison was instrumental to Team Mattie and though our sons were in kindergarten together, it was in Mattie's illness that I really got to know her. Ann and I visited with Alison at her house and then went out to lunch together. Though we did not discuss this, when the three of us are together I can't help but remember our times together in the hospital brainstorming next steps or ways to support Mattie. It is a dynamic that I most likely will never forget, mainly because my son connected the three of us together. Together we talked about life and death issues and tried to navigate through one of life's most horrific moments. It is at times hard to move passed that connection and realize that the unifying force is gone from our lives. Mattie is gone, but in many ways, his spirit lives on through these connections. In the mood I was in yesterday, I probably wouldn't have deduced this or have been able to put any sort of positive spin on this, but each day is a new day, and with each new day sometimes I gain perspective.

Wednesday, January 4, 2012

2012-01-04T20:12:00.000-05:00

Wednesday, January 4, 2012

Tonight's picture was taken in December of 2006. We took Mattie to Boston to celebrate Christmas with Peter's parents. Behind their house are part of the Middlesex Fells Reservation. 'Fells' is the Saxon word for rocky, hilly tracts of land - an apt name for this scenic area which is rich in local history. Peter spent a good part of his childhood playing and navigating in these Fells and I know he enjoyed introducing them to Mattie. This picture captures two generations of Brown boys enjoying these woods!

Quote of the day: We can never judge the lives of others, because each person knows only their own pain and renunciation. It's one thing to feel that you are on the right path, but it's another to think that yours is the only path. ~ Paulo Coelho

My friend Tina sent me tonight's quote. To me this quote needs to go hand in hand with the quote I posted on Monday about compassion. When we live a compassionate life (which I KNOW is not always easy to do), then criticism, judgment of others, and the authority of knowing the "right path" seems to melt away. Because in reality there is NO right path. There may be the conventional path, or the path most popular and easily understood and accepted, but that doesn't necessarily make it right or the best. The challenge of life is finding the confidence and courage to navigate your own path. Life is ever changing and throws all sorts of curve balls your way, being fluid, flexible, and introspective are therefore a necessity. In all reality no one can carve out a path and follow it throughout one's life. You can't, because you do not live in a vacuum. Life isn't always organized, nice, or predictable despite our best attempts. Perhaps I learned this lesson the hard way through Mattie's cancer. Frankly I do not feel I needed to experience childhood cancer to develop compassion, to understand that we all suffer our own pains (both visible and invisible), and the importance of being open to alternative paths. But now that I have survived Mattie's battle and live with his death, I not only relate to this quote, but it is a part of me. It is how I try to live my life.

There are some days when writing for me is super easy and other days when I sit by the computer and feel stuck. I am dealing with the latter today, so therefore, I will be closing now and as always appreciate you visiting Mattie's blog and reading about our journey.

Tuesday, January 3, 2012

2012-01-03T22:59:00.001-05:00

Tuesday, January 3, 2012 -- Mattie died 121 weeks ago today.

Tonight's picture was taken in December of 2004. Mattie was two and a half years old and learning to interact with Patches. He certainly gave her a run for her money. Early on Mattie would try to pull on her tail as well as pull out her fur. Despite this treatment, Patches NEVER bit, scratched at, or hissed at Mattie. I can assure you if I or Peter did this to her, we would have experienced her wrath. But she somehow understood that Mattie was different and tolerated him. A smart cat, because the consequences wouldn't have been good for her if she hurt Mattie. Over time, Mattie learned how to pet and care for Patches and they were good buddies. In fact, when Mattie came home between his cancer treatments, she always stayed close to him (before she was permanently placed at the vet for over a year) and usually sat with him on his bed.

Quote of the day: When I really hear someone it puts me in touch with him. It enriches my life. It is through hearing people that I have learned all that I know about individuals, about personality, about psychotherapy, and about interpersonal relationships. ~ Carl Rogers

To me, Carl Rogers was a brilliant mind. Most likely if you asked me who was one of the people I wished I met in my lifetime, my response would be Carl Rogers. He was an American psychologist who transformed the art and science of therapy. When I was in graduate school, and learned about Rogers' theory and techniques, they simply resonated with me. Because I too believe that at the core we all have the capacity for self understanding and for change. The crucial component to Rogers' form of psychotherapy was the curative relationship. That sounds simple and yet it is NOT so simple, because creating the right therapeutic environment and building a nurturing, trusting, and supportive working relationship is a fine art. Yet through this working relationship (between a counselor and client) a great deal can be learned, modeled, felt, and incorporated into one's daily life.

I have stated this before on the blog, but listening, truly listening, to someone requires great skill, discipline, concentration, and an ability to connect the content being processed. But I agree with Rogers, I can't think of a more tangible, real, and in depth way to connect with another person than by listening to his or her thoughts and feelings. In a way when someone opens up and trusts you even as a friend, this is indeed a gift. A gift that has lasting value and which can be built upon for a lifetime.

I had the opportunity to see my friend Ann today. We hadn't seen each other in three weeks, which back in 2009 and 2010, this would have been an impossibility. Those of you who went through Mattie's battle with us, must realize that in this horrific process my friendship with Ann developed and grew. Ann not only became my friend but she served as a beacon of hope during my greatest moments of despair. She signed up to help us with Mattie, but her presence did not end when he died. For over a year after his death, Ann was the person I spent EVERY day with, and in the beginning it was also every night since Peter and I moved into her house. As time continues I am slowly learning to reconnect with the world around me and support myself and naturally in the process our friendship evolves.

Later today, I went to visit Ann's mom, Mary. Ann told me that Mary asked about me OFTEN while I was gone. I am sure it was hard to understand my absence for so long! When I walked into Mary's room she was sleeping. Her eyes were closed and she looked peaceful. But I bent over her and said her name. With that her eyes opened and at first she had to register that it was me. But once she put two and two together, I received a big smile and she told me how much she missed me. Posted in Mary's room is a marvelous article about the first Dunkin' Donuts store in Quincy, MA. This store opened in 1950 and has been in the same location all these years. In fact, the store was just restored to how it looked in its hay day. This retro Dunkin' Donuts has made the news and it has touched the nostalgic hearts of those who grew up eating at that store. But the beauty of all of this is Mary worked in this Dunkin' Donuts store when she lived in Massachusetts. As I said to Mary today, she was a part of history! You must remember that I only know Mary as a person who suffers from a neurological disease. I did not know Mary when she was well, and therefore I am missing a whole part of life and history. However, today's article provided us with a wonderful way to connect to the past. Oh and just in case you are interested, Mary did confirm with me, that if you work around donuts every day, the last thing you want to eat is a donut. Makes sense to me!

Monday, January 2, 2012

2012-01-02T20:02:00.001-05:00

Monday, January 2, 2012

Tonight's picture was taken in April of 2007. Mattie and I were standing in the boxwood gardens of the US National Arboretum. We tried to visit the Arboretum each April, around the time of Mattie's birthday. Because it was during that time of year that thousands of azaleas are in bloom. It is a breathtaking and memorable sight! However, the boxwood garden, which is right near the azaleas, is quite impressive as well. I decided to post this picture tonight, because this afternoon Peter and I went to the Arboretum, and I stood in this boxwood garden. However unlike in this picture, I was standing in the garden alone. Today's picture (posted below) seems quite symbolic of our life now without Mattie.

Quote of the day: Make no judgements where you have no compassion. ~ Anne McCaffrey

I pause tonight and reflect on this quote. My wish for all of us this year is the gift of compassion. May we be the recipients of it and may we also bestow it upon others. Compassion is a beautiful and yet challenging word. Because to develop, feel, and use compassion in one's decision making process is hard work. Yet, when you look through the lens of compassion, I have found that it changes my viewpoint and I find that I am far less judgmental with others.

After my experience of walking on Roosevelt Island yesterday, I realized I did not want to return there today. The holiday season has caused the Island to be heavily trafficked and neither Peter nor I enjoy visiting and experiencing the Island this way. So I suggested that we take a drive to the US National Arboretum instead. I must admit I have only visited the Arboretum in the spring and summer before, so I had no idea what winter was going to hold for us. But one thing I was certain of..... that there would be NO crowds.

We had a beautiful 3 mile walk today at the Arboretum and our walk brought back many memories of Mattie. We took him to the Arboretum on numerous occasions. The beauty of the Arboretum is that it is a spectacular wide open space, filled with gardens, trails, and plenty of things to see. It was perfect for Mattie!

In the huge wide open meadow of the Arboretum you are struck by the vision of 22 Corinthian columns. These sandstone columns were among 24 that were part of the east central portico of the United States Capitol. Architect Charles Bullfinch oversaw construction of the portico using a design handed down by his predecessors. Completed in 1826, these columns provided the backdrop for presidential inaugurations from 1829 (Andrew Jackson) to 1957 (Dwight Eisenhower), and were the site of many speeches, protests, and rallies. In 1958, the columns were dismantled to make way for the east front extension of the Capitol, which is adorned with marble reproductions. In 1990, these columns were restored and placed in their new home on the grounds of the US National Arboretum.

Behind me you can see the columns in the distance. We walked to the columns and then meandered through this lovely Ellipse Meadow to the other side. On this side you find a capital, or top portion, of one of the columns. You can see the incredible detail that the stone carver incorporated into the design of these columns. Specifically you can see the acanthus leaves which comprise the design on the top portion of the columns.

This is one of the trails of the azalea walk. This is a walk we did with Mattie each spring! In fact, while walking I could picture him on this trail with us. Admirers come to the U.S. National Arboretum’s Azalea Collection every spring to witness one of Washington’s premier spring attractions. Thousands of azaleas cover the flanks of Mount Hamilton in a blaze of color. The first warm days bring out the flowers, and the slopes take on a surreal, almost luminescent glow.

Above you saw the boxwood garden picture I posted from 2007. The garden looks quite different in the winter, but it is still vibrant. What I LOVE about boxwood is that it emits a peachy fragrance. It was a special treat in the midst of winter to smell something so sweet! The smell hit me as soon as I walked into the garden today and despite being surrounded by this springy peach smell, it started to snow! A reminder that it is indeed winter. To me this picture is a striking comparison to the one above. It captures a sense of isolation and bleakness that just wasn't present in the 2007 version.

The U.S. National Arboretum’s National Boxwood Collection is one of the most complete collections of boxwood in the world. There are around 150 different species planted in this corner of the Arboretum. Some have blue-green leaves, others have leaves variegated with splashes of cream or yellow. Some are dwarf and mature at a height of less than two feet. One variety, ‘Graham Blandy,’ grows upward in a narrow column like an exclamation point in the garden. The National Boxwood Collection is enchanting in any season, but winter is a special time when the bold green foliage defies the bleakest days.

We walked the entire azalea trail (as we did many times with Mattie), and when we got to the top, we could see the US Capitol through the trees!

Toward the end of our walk, I noticed these trees in the distance. They caught my attention! Why? Well I hate to admit it, but because the bark was the color of CHOCOLATE! To me they looked like chocolate trees! I snapped a picture of Peter with the trees and then came home and googled the scientific name of this tree. It turns out this is a Japanese Crape Myrtle. The trunk of this tree was SOLID, in fact it felt like you were knocking on metal rather than wood.

The Arboretum has a special outdoor exhibit entitled, Power Plants. The exhibit is featuring plants that can be used as alternative fuels (such as soybeans, corn, etc.).

One of the "power plants" featured was the sugar beet! Already an important sugar crop in 11 States, a sugar beet's stored sweetness could be fermented for ethanol. Which is why it is considered a cost effective fuel alternative.

It is hard to believe that Christmas and New Year's are now behind us. For me, time passed but I can't say it felt like a holiday at all. Peter returns to work tomorrow, which is always an adjustment for both of us. Especially since we have spent the past two weeks together. When we are together we both understand the sadness we live with. As we live our separate lives during the work week, we land up of course not having the camaraderie or the support we need on some emotionally difficult days. Nonetheless, ready or not, we must face 2012.

Sunday, January 1, 2012

2012-01-01T17:54:00.001-05:00

Sunday, January 1, 2012

Tonight's picture was taken in January of 2003. As was typical of our weekends together, we usually went walking and spent time outside. This was where Mattie was most happiest. That weekend we went to Roosevelt Island and as you can see Mattie was riding on Peter's back. This was Mattie's favorite form of transportation prior to independently walking. Mattie HATED his strollers and forget the baby bjorn or any type of front carrier. There was something appealing to Mattie with being on Peter's back. Perhaps it was the height and the fact that he could see us clearly. Because with a stroller or front carrier he couldn't see us!

Quote of the day: Joy is not in things, it is in us. ~ Richard Wagner

There is something very telling about tonight's quote. I agree with it wholeheartedly. I am guilty just as much as the next person in trying to find joy or happiness from not necessarily things but those around me. In fact it would be a lot easier to blame our lack of possessions or the insensitivities of others for our state of being. However, at the end of the day, in reality no one can provide us with joy or happiness if it does not exist within ourselves. That is a harsh realization because what it signifies is that change must start from within. Now with that said, I do firmly believe that those around us can inspire this internal change and they can also help us to experience joy and happiness when we are unable to do this for ourselves. We are social beings and do feed off of each other's thoughts, feelings, and moods. I know that my feelings are usually intense whether positive or negative, and I can QUICKLY transform someone's mood around me. However for me it goes the other way as well. I am good at absorbing other people's feelings and their concerns and worries have a way of sticking with me over time.

Peter and I had another slow day. We did get out and walked two miles around Roosevelt Island and like yesterday I did feed the ducks. The ducks always migrate my way as soon as they see a bag or even hear the rustling of a bag that I am holding. Unfortunately for us, Roosevelt Island was VERY crowded today. It seemed to be wall to wall people. I like walking on the Island when there are very few people there. For me, it is our escape within the city. There wasn't much escaping today.... there were people, children, and dogs everywhere. Ironically before having Mattie, crowds did not bother me in the least. However, once Mattie was born, and I observed and experienced his aversion to crowds, noise, and congestion, he conditioned me. In fact, when he was a baby, if I knew we were going to be in a crowd or confined somehow inside, my stress level would go up, and I would immediately start looking for alternatives to this setting, because I knew this would set Mattie off on a terrible tantrum. Though Mattie is no longer with me, somehow I am conditioned to feel stress and anxiety in these types of settings. So though I walked the Island and got fresh air, I did not enjoy it in the least.

I spent the rest of the day focused on Foundation items. Typically at this time of year I am ramping up plans for our annual May walk. However, this year, we are not only planning the Walk, but we have the Whole Foods day in January and a psychosocial symposium in March, so we shall see how well I can juggle all three events.

As today is the first day of our new year, I hope that our readers had a good day and know that we wish you a happy, healthy, and safe 2012.

Saturday, December 31, 2011

2011-12-31T17:41:00.001-05:00

Saturday, December 31, 2011

Tonight's picture was taken in January of 2003. Mattie was nine months old, and celebrating his first new year. Mattie was always a night owl and required VERY light sleep. Needless to say, as the ball in Times Square was going down that year, Mattie was wide awake and sitting with us. You can see the energy and happiness on Mattie's face!

A New Year's Poem (author unknown)

The day does offer promise
A change for something new
Time for new direction
To make a change or two

This burst of inspiration
Does come but once a year
A time for something different
And hopes that change is near

How will you use this moment
What will you choose to change
What aspect of your story
Are you poised to rearrange

In truth it's just illusion
It's not about the day
It's how you view the future
And challenge in your way

Frankly it did not even dawn on me that today was New Year's Eve until my friend Tina emailed me and told me she was going to be watching the fireworks tonight. Honestly I had to stop and ask myself, why? I had no idea why there would be fireworks going off tonight, until I put two and two together and looked at the date.

It seems to me that we can't get through a New Year's without hearing the word.... RESOLUTION! My friend Charlie sent me the link below about New Year's resolutions. I have never made a New Year's resolution in my life. Mainly because if I want to do something or change something about myself, I make that commitment and try to abide by it each day. I do not need December 31, to help or inspire me. However, what I like about the article Charlie sent me is that the author tries to encourage us to think outside of ourselves as we make a resolution for 2012. In fact the article presents a campaign that challenges people to make outwardly-focused resolutions to care for others, instead of inwardly-focused resolutions for self-improvement. This notion caught my attention because I do believe that simple acts of kindness do make the world a better place to live. In addition, I will go out on a limb and even say that helping others provides us with much more happiness and in the end enrichment of self than any form of self improvement or self change could ever produce.

New Year, New You: Making Resolutions Matter.............................
http://www.dailygood.org/view.php?sid=155

It was a slow start to the day for Patches, our calico cat, and myself. Patches illustrates how I felt all day. Despite feeling tired, feeling as if I was still swaying on a ship, and cold, I got it together and headed out on a walk with Peter.

I entitle this photo....Spring in December. Believe it or not, some cherry blossoms do bloom at this time of year. However, to me it is still a very unusual sight and when you take into account that it is cold out, these flowering trees seem down right miraculous.

Peter and I took a 3 mile walk today. We walked around Roosevelt Island and I came armed with a sleeve of crackers. I snapped a picture while we were feeding the ducks. The ducks devoured the crackers and I laughed when I recalled Mattie feeding ducks on Roosevelt Island. Mattie would feed the ducks, but he always popped some of the bread or the crackers in his mouth as well. It was like one piece for Mattie and one piece for the ducks!

A Duck close up! There is something so beautiful about the coloring of a male mallard duck!

For the most part, today was another grey day in Washington, DC. These are very common during the winter months, which is why to me summer is so glorious here. Sun almost every day! While walking, the sun did come out and was shining between the trees. So I snapped a picture of sunlight through the woods at Roosevelt Island.

As we were completing our walk on the trail, I heard a sound in the woods. I stopped and looked around me. Here is what I saw.... A New Year's Eve Deer!

To all our readers, we wish you a healthy and happy 2012! We are thankful to you and appreciate your support as we move into our third year without Mattie in our lives.

Friday, December 30, 2011

2011-12-30T17:16:00.002-05:00

Friday, December 30, 2011

Tonight's picture was taken in December of 2002. Mattie was eight months old and as you can see he desperately wanted to walk! I loved the particular onesie he was wearing because of the reindeer featured on the backside. Mattie was an active baby. He did not like sitting still and crawling was a joke to him. Forget tummy time! Mattie did not care for lying on his stomach even as he got older. With Mattie I learned to be creative with movement and even when he was a little bitty thing, I couldn't just hold him in my arms. He wanted to be bounced and really jiggled hard. To others what I was doing must have looked quite bizarre, but if this movement calmed him down, made him happy, and stopped the crying, I did it! Clinically, I would say Mattie conditioned me to do these activities because they generated positive feedback or results.

Quote of the day: Kind hearts are the gardens. Kind thoughts are the roots. Kind words are the blossoms. Kind deeds are the fruits. ~ Kirpal Singh

I am working in slow motion today. We both feel like we are still on the ship, despite being back on solid ground. It is a very funny feeling and hard to describe. Needless to say, I am still taking Dramamine because this is the prime time when I can develop motion sickness.

Patches is now home and she is thrilled to be back. For her this is a major adjustment, and I can tell that she is very anxious and uneasy from being away from home. Needless to say she is sticking close to her buddy, Peter. She is Peter's shadow. He can't do anything without her following him. She even sits in the bathroom while he showers!

We received our mail today in bulk from our time away. This year, we were inundated with Christmas cards. To all of you who thought of us, we thank you! Naturally we are also very grateful to so many of you who have made a contribution to the Mattie Miracle Cancer Foundation. This is a wonderful way to memorialize and remember Mattie, and to us this is the ultimate holiday gift.

Thursday, December 29, 2011

2011-12-29T21:47:00.001-05:00

Thursday, December 29, 2011

Tonight's picture was taken in December of 2008. Mattie's last Christmas with us. In this particular picture, Mattie was terribly sick. He was running a high fever and feeling absolutely depleted. However, Linda (Mattie's Childlife Specialist) had Santa and Mrs. Claus make a special visit to Mattie's clinic room since he was unable to attend the Hospital's Christmas party. When Santa came in Mattie's head was planted on top of the pillow. Slowly though as Santa began talking to Mattie, Mattie lifted his head up for a quick picture and to see all the wonderful toys Santa brought with him. Santa (with the guidance of Linda) brought all of Mattie's favorites, Legos and remote controlled cars!!! This picture may seem cute, but you need to understand how awful Mattie was feeling and the enormous effort it took for him to lift his head, taking that into account, this makes this picture seem superhuman and leaves you in awe of his strength.

Quote of the day: One who knows how to show and to accept kindness will be a friend better than any possession. ~ Sophocles

Disembarkation day is always stressful to me. Maybe it is because over 2000 people have to orderly pack up, leave the ship, claim their luggage, and find their way to the airport. Either case, there is a level of freneticism at the end of a cruise that I don't care for. Ten days on the Ship went fast and yet I was ready today to get back to solid ground. No matter how big a cruise liner is after a while you can feel confined and also you can reach your fill of their commercialism and the crowds with which you have to share your vacation space.

We had breakfast together with my parents this morning before saying our good-byes. Our waiter today was Dejan. Over the past several days we have had the pleasure of interacting with him. He is from Macedonia and is simply delightful. He is a quick study and gets to know his passengers well. In any case, when you are sitting at his station within the dining room, you always feel cared for. Or as he says, he wants his passengers to feel as if they are visiting him at his home, and he wants us to feel welcome. He is very successful at accomplishing his goal.

I am in amazement by many of the cruise ship crew. These people work seven days a week for 10 straight months. They never get weekends or holidays off! Frankly I am not sure how these people avoid burnout! Their work isn't easy, especially when you take into account that they work on a moving ship, which can be rocking and swaying. They also have to contend with challenging passengers who at times have unrealistic demands. If those two things aren't bad enough, then consider that they live in rooms underneath the waterline of the ship and share tight quarters with other crew members. Yet the crew is away smiling and works hard to make sure you are happy. As we got off the Ship, 2000 new passengers were headed aboard this afternoon. The crew then starts the process all over again. To me their work is exhausting and it leaves me wondering how much they are getting paid. Many of the crew are motivated by the money, which helps support their families back at home.

We waited for four hours in the Ft. Lauderdale airport today until our flight was scheduled to take off. The airport was an absolute ZOO! Way too many people in a confined terminal. Our terminal was old and tired, with few stores and restaurants, and not enough seats for those of us waiting to take off. Peter and I spent over an hour walking together back and forth in this small space. I am sure we looked nuts, but we did not care. It beat sitting on the floor or having people crowding our space. I wish I had my pedometer on me, because I am sure we walked at least two miles in the terminal space.

While walking a shiny penny caught my eye. It caught my eye because it seemed to have landed right by Peter's foot as he was walking. I had Peter stop and pick up the penny in remembrance of Mattie. Mattie loved collecting pennies and had an eagle eye to spot them! My parents introduced Mattie to the penny fairy (they would plant pennies all over our home for him to find and tell him that the penny fairy came by to visit him). Now that Mattie is gone, we can't help but think of Mattie every time we see a penny on the ground.

I have been in a ship, taxi, and plane today and I can say that I am thrilled NOT to be moving tonight. Though my head hasn't reached equilibrium. I still feel as if I am on a ship rocking and swaying. This feeling will last for days for me. As we were flying into DC, Peter snapped some wonderful pictures of the city. Unlike Ft. Lauderdale, it is cold and grey in DC. As always the flight from Florida to DC was turbulent, which I absolutely can't stand. Today's remedy that kept me in my seat and dealing with these feelings was singing. I did not do it out loud, but I did it in my head. I am not sure why I selected Day by Day from Godspell, but that was what was playing in my head. You know how it goes..... Day by day, Oh dear Lord, Three things I pray..... To see thee more clearly, Love thee more dearly, Follow thee more nearly, Day by Day.

As we arrived at the airport and were headed out of security to collect our luggage, I observed a little boy who was traveling with his dad. The boy was reunited and greeted his mom at the airport. He was so excited that he ran up to his mom as she was coming out of security. I absorbed this and so did Peter, yet neither one of us said anything. Because just a few years ago this was us, when I got back from a conference Mattie always acted just like the little boy I saw today.

Any case, we are back in DC, and though I haven't been following the blog counts while I was away, I am thrilled to see that the blog had almost 2000 hits during this holiday break. As always thank you for checking in with us and for reading.

Wednesday, December 28, 2011

2011-12-28T18:13:00.003-05:00

Wednesday, December 28, 2011

Tonight's picture was taken on Christmas Day of 2008. Mattie was home recovering from his limb salvaging surgeries. A hospital bed was in our living room because Mattie was unable to walk and really move much. Naturally given his circumstances, he was in a terrible mood and the tone in our home that day was very somber. That particular evening, one of Mattie's preschool friends dropped off some Christmas hats and rudolph the reindeer glowing noses. This brighten Mattie's spirits and made us all laugh. This was of course short lived, but that moment of happiness was something I wanted to preserve on camera. It is hard having these as our last Christmas memories with Mattie, but this is our reality. Though as bad as that was, and it was BAD, being without him now seems much worse.

Quote of the day: I am convinced that the greatest legacy we can leave our children are happy memories; those precious moments so much like pebbles on the beach that are plucked from the white sand and placed in tiny boxes that lay undisturbed on tall shelves until one day they spill out and time repeats itself, with joy and sweet sadness, in the child now the adult. ~ Og Mandino

As today is the last day of the cruise, the whole tone of the Ship has changed. People are tensing back up, they are not participating in as many activities, and for the most part they are trying to spend as much time outside and on the decks as possible. Hallways and restaurants are not crowded and in a way it is much more peaceful.

Just like our last cruise to Alaska in August, today we were awoken at 4:40am, with a greeting from the Ship’s captain on the emergency public announcement system. Just like with the Alaska cruise, a child was reported missing by her parents. This morning’s child was a girl named Victoria, who is 14 years old. It took 30 minutes for the Ship’s crew to find her. I do not know the details, but she was found and returned to her parents. I thought Alaska was an anomaly but after this morning’s broadcast, I am beginning to see a pattern. Parents are NOT keeping track of their young teens aboard these vacation trips. I try not to be judgmental, but having been a parent, I can’t see this ever happening with Mattie. Furthermore, why wait until 4am to report a child missing!!??? By that time so many hours have passed by and anything could have happened. If your child does not show up at the agreed upon time (again I am making another assumption that this was discussed between parent and child) at night, then don’t you do something about it then? Why wait for several hours to lapse!? I also want to make it clear that both the child missing in August and the one missing this morning were NOT participating in the Cruise line’s child supervised activities!

We began our day by attending a cooking demonstration hosted by the Executive Chef and the Maitre D’hôtel of the Ship. The executive chef was born and raised in Germany and the Maitre D’ was born and raised in Italy. The cooking show featured these two men working and playing off each other to cook a full four course meal. In front of us they created a Caesar salad (in which they showed us how to make the dressing from scratch), then a vegetarian linguine pesto, followed by shrimp fra diavolo. At the end, the Ship’s chief baker made an appearance and put together a black forest cake in front of our eyes. He made it look easy, but then again, I assume if I had a team of assistant bakers helping me with the set up, I too could perfect the assembly. But the prep work for this cake looked intense! After the cooking demonstration, I would say several hundred people then followed the Ship’s team to the Galley (kitchen) for a tour.

Running the kitchen on a large cruise ship is a master undertaking. In fact, 515 crew are dedicated to the kitchen operation. Within this count includes 184 dining room staff.

I love this picture because it captures some of the huge pots used aboard the Ship. Also keep in mind that there are 52 dishwashers (people NOT machines) aboard the ship. The kitchen operates 24 hours a day!

As several hundred passengers were on this tour, I had a real feeling for the level of chaos that must ensue in this kitchen when the wait staff is running around trying to serve meals. The kitchen is extremely clean but the floors seem slippery and frankly every corner of the kitchen looks exactly alike to me. So if left to my own devices I would be thoroughly lost down there. As we were touring the galley, the crew put together several displays for us. As you can see featured here were a huge halibut and salmon.

This display caught my attention as it was filled with color and was whimsical!

My mom and I posed with the Executive Chef (on right, Klaus Baumgarten) and the Maitre D’hôtel (on left, Ignazio D’Agostino) at the end of the tour.

The Chief Baker, who showed us how to make a black forest cake during the demonstration, designed this beautiful gingerbread village. To me this was a work of art and having made several gingerbread houses from SCRATCH, I know that this is a major LABOR OF LOVE!

This afternoon, we could see Cuba off in the distance. In fact, for the majority of the day the Sea was SO calm, blue, and beautiful. The sun was shining and it was the best day at sea we had during the whole trip. Then as we approached Cuba, things began to change.

It is my hope that with this intense cloud formation you can tell that we had significant weather! It was raining intensely and the wind was wiping. The funny part about all of this is we really wanted to walk around the outside deck this afternoon and wanted fresh air. So despite the rain and wind, we walked through it. This was no easy feat and after our 4 mile walk we were wet and windblown.

This is my last blog from the Island Princess. Tomorrow we will be back in Washington, DC. The return home for us is always problematic. However, this is the first cruise in which I observed that the other passengers weren’t happy about the end of the journey. I observed this distinct feeling TODAY, the day before the cruise ended, which in a way spoiled this last day.

Tuesday, December 27, 2011

2011-12-27T18:51:00.000-05:00

Tuesday, December 27, 2011 -- Mattie died 120 weeks ago today.

Tonight's picture was taken in December of 2007. Mattie attended Peter's office party and one of the founders of the company has a husband who looks just like Santa. Though Mattie never wanted to go to the mall and sit on Santa's lap (because he found the whole notion scary), he was intrigued by this real life looking Santa. I snapped a picture of Santa and his reindeer together because I thought they made a charming pair. Mattie loved attending the party and he particularly loved the secret santa Christmas present exchange. Mattie came home that year with a light up gingerbread house and this item became one of his favorites to always display over the holidays.

Quote of the day: Empathy, the capacity to feel with another in his suffering, is born first of awareness, then of sympathetic connection. ~ Daphne Rose Kingma

Christopher Columbus set foot on land in Ocho Rios in 1494. Jamaica is the third largest island in the Caribbean, and Ocho Rios is located on Jamaica’s North Coast. The origin of the name Ocho Rios remains a bit of a mystery. Directly translated from the Spanish, it means “eight rivers,” but since there are not eight rivers in the area it is more likely the name was derived from the words, “las chorreras” (the spouts), because of the nearby waterfalls.

The first stop on our tour today was Prospect Plantation. Beginning in 1936, Prospect Plantation produced pimento (allspice) trees and limes and was overseen by its Scotland born owner, Sir Harold Mitchell. After his death in 1983, the 1000 acres were transformed into an eco-destination to inspire visitors and offer a true Jamaican plantation experience. However, the Plantation is still owned by the Mitchell family.

On the grounds of Prospect Plantation, small plaques mark the trees which were planted by visiting guests such as Charlie Chaplin, Winston Churchill, Noel Coward, Henry Kissinger, and Drew Barrymore. I want to call your attention to three things in this picture. First, this is a royal Poinciana tree (it has a leaf like a mimosa tree and pods which when opened have beautiful red colored beads used for jewelry and maracas) and was planted at the Plantation by Drew Barrymore. Second, you will see our tour guide, Jackson. Jackson was very entertaining and taught us the Jamaican phrase…. Ya Mon! Third, what I like about this picture however is it shows you this large brown mound embedded in the tree. This brown mound is a termite hive. It is huge, and actually there were many around the plantation. Termites build their homes in trees rather than the ground, to protect them from the hot sun. Look closely at the picture because you will see brown trail lines up and down the tree trunk. This is how the termites travel around the tree and do not get exposed to sunshine!

We had the opportunity to hold and smell the leaves of a lime tree and a pimento tree. The lime tree has a citrusy smelling leaf which we are familiar with since we have a Meyer’s lemon tree growing in our living room. But the pimento tree was an experience. Pimento or the allspice tree has very fragrant leaves. Three spices are captured in the leaves…. Cinnamon, cloves, and pepper, which is why the tree is call ALL-SPICE.

The plantation was very beautiful and lush and we traversed it on a jitney being pulled by a tractor. Jackson drove the tractor, however, there was another man standing on the tractor at all times near Jackson who never introduced himself. During the tour my dad inquired about this man. Jackson explained to my dad that this man standing behind him was a security guard for the bus. This helps to put crime into perspective, especially since we appeared to be in the middle of nowhere, on a 1000 area plantation.

Jackson stopped the tractor, jumped out, and explained to us about the production of sugar cane. Sugar cane leaves are apparently hard to touch, cut, and work with. So once the sugar cane has matured and is ready to be harvested, they burn down the whole crop. After the burning is complete, the only thing remaining is the stalk of the sugar cane plant. This is where the sugar is located. The stalk is SO tough it is completely unharmed by fire. As you can see in the picture, there was a 17 century sugar cane mill machine there on display. At one time, a harvested cane or stalk was placed in the machine and horses would be tired up to this mill to make it turn, which would grind the stalk and produce sugar juice. The juice is then boiled to produce molasses. It is from molasses that sugar and rum (VERY popular in Jamaica---- so much so that they were giving out free samples on the tour!) are made.

The plantation was filled with glorious butterflies. We had many Mattie sightings today. Peter captured this beautiful one!

Jackson selected me from the group to attempt to climb the coconut tree! As you can see I did not get very far. There seemed to be no place to grip onto or to place my feet!

Then Donald, who works on the Plantation, showed us how to climb a coconut tree. By the way he did it in bare feet!

At the Plantation we got to see a coconut demonstration! Peter was paying close attention, since NO saws or electrical equipment were used at all. Though I have to admit, this is the component which made Peter’s coconut opening demonstration at Mattie’s preschool and kindergarten so entertaining. The kids loved seeing and hearing the saw and hammers!!!

However, notice the wooden spike on the ground. Donald literally hit the coconut with its husk on it right onto this spike. He then easily peeled the husk away and with your average kitchen butter knife, he used the handle to knock at the coconut shell and split it apart. He made it look SO SO easy!

Donald gave us fresh coconut water to drink and fresh coconut. Apparently Jamaicans like to eat coconut with sprinkled sugar in the raw on top of it. It was delicious!

The house that sits on the Plantation grounds belongs to Sir Harold Mitchell and his family. They bought it in the 1930s. The house reminded me a lot of Mt. Vernon in layout. This family was clearly very wealthy. They owned properties all over the world and knew all the English royalty and dignitaries. This was very evident from the pictures framed throughout the house!

Peter snapped a picture of the first floor of the house. I want to call your attention to the picture of the woman sitting on the piano. This is a picture of Mary Jane, the Mitchell’s only child. Mary Jane died at age 39 from brain cancer (before dying she had two boys and they now own the property). The story of Mitchell’s only child dying from cancer affected me. A great sadness came over me, despite the fact that they were clearly wealthy and lived a magnificent lifestyle. I have to imagine to some extent at the end of the day that did not matter, their lives were permanently affected and in that sense it doesn’t matter if you are rich or poor. Nonetheless, I observed that the majority of the people in the room with us today had not personally experienced the devastation of losing a child. But it was that information that truly made me feel united with the Mitchell’s.

As you walked out the back door of the house, it opened up onto a beautiful patio that overlooked spectacular gardens. In the distance you can see a fountain that came from Italy. The fountain was said to bring luck and good fortune.

Within the fountain were exquisite water lilies and frogs. Peter captured a frog that poked his head out of the water. This was another sighting that reminded me of Mattie.

One of the last stops at the Plantation was to visit the camels. Peter and I had a lovely camel encounter. He was a very sweet, docile, and affectionate animal.

Our next stop on the tour today was to Dunn’s River Falls. I could have done without this stop altogether. Our tour guide at the Falls was terrible. She never did a head count and was simply surly. However, what truly bothered me was over 1000 people were visiting the Falls today, which made it super congested, very uncomfortable, and certainly not a beautiful and tranquil experience. Here is the description given to us of the Falls……………………

"Dunn’s River Falls is one of Jamaica’s national treasures and the most beloved attraction in Ocho Rios. It is a dramatic 600 foot drop of cascading water which dominates a tranquil rainforest setting. The falls are a living phenomenon, as they continually regenerate themselves with deposits of travertine from the river that cling to the falls, replenishing the rocks. A climb up its limestone tiers and a swim in the sparkling pools is a delight, although, a walkway built into the forest environment allows you to experience the spectacle without getting wet."

As you can see from the picture, the water moves at quite a clip and over some steep rocks. To be quite honest I am not sure how the park avoids accidents since there is NO restriction as to who can participate in the climbing of these Falls. Though we did not get in the water to experience the Falls, we did climb all the steps to walk out over the Falls.

Here is a picture of my mom and I by the Falls. As we were boarding the bus to leave the Falls, three older women were missing from the bus. Our bus driver was going to leave them behind, since he told us they probably decided to climb the Falls and he would come back for them in an hour. However, I knew NO ONE from our bus got into the water to climb the Falls and I basically told him he shouldn’t leave without these women. In fact, one couple on the bus was mad at me for speaking up. But seeing the physical strength it took to climb those Falls, I knew those three women were bright enough not to attempt that. The Park was congested and our Park guide was awful. Therefore, I deduced these women got lost in the Park and were trying to figure out how to get to the bus. Guess who was right?!

After the trip to Dunn’s Falls, we were dropped off at a shopping area. OH MY WHAT AN EXPERIENCE THAT WAS! Basically nothing was affordable, even after haggling down prices. One store owner told us that the philosophy many Jamaicans have is that US citizens are ALL privileged and wealthy and therefore they are entitled to charge us these exorbitant prices. That notion did not sit well with any of us on the tour bus and therefore nothing was purchased.

Before embarking the Ship, Peter snapped a picture of the Island Princess. Since tomorrow we are at sea the entire day, we will not have a chance to see the outside of the ship again until we arrive at port in Ft. Lauderdale on Thursday.

I end tonight’s posting with a picture of a smiling Mattie Moon over the Caribbean....

Monday, December 26, 2011

2011-12-26T18:50:00.000-05:00

Monday, December 26, 2011

Tonight's picture was featured on the front cover of our 2007 Christmas card. What I immediately see in this picture was Mattie's Christmas train. Mattie LOVED trains and was fascinated by their power, speed, and mechanics. In this particular toy train, Santa was the engineer and as the train went around the track, it played Christmas music and puffed out steam. This became a holiday tradition for Mattie. Each year, he looked forward to setting up his train around the tree. Naturally this train remains in Mattie's closet even today and though it is not set up anymore, I remember its sound, but also I vividly recall the sound of excitement and laughter it produced in Mattie.

Quote of the day: Imagination enhances our lives by supplementing the inadequacies of the real world, or our experience of it, and can also give us the vision to transform present reality into something new and better. ~ Erik Blumenthal

On Christmas night, the Ship had a formal dinner. On our way to dinner, Peter snapped a picture of me. I am posting it because I wanted to show you how lovely the Ship was decorated for the holidays. There are Christmas trees, wreaths, boughs, real gingerbread villages, and Menorahs everywhere.

Some of my blog readers have emailed me and asked me to post a picture of me with my parents. Here is a picture of us together at Christmas.

I haven’t explained dining on the Ship. But it is an experience. In fact, I would say that food may be one of the biggest forms of entertainment on any major cruise liner. With our Ship holding 2200 passengers and over 1000 crew, feeding this army of people at ALL hours of the day is NO easy process. Yet Princess does it well, because it isn’t easy cooking in such large quantities and yet keep the food looking elegant, enticing, and fresh. The Ship has two main dining rooms, two specialty restaurants, and a 24 hour a day buffet. Not to mention an ice cream bar, a pizzeria, and a grill for hamburgers and other items.

Our wait staff at dinner is Manny and Jeannette. Both are from the Philippians and they work very hard to make us happy. In fact, Manny is teaching us card tricks during dessert and Peter has already mastered how to perform a few of them. Keep in mind that most cruise ship employees work 11 hour days and unlike us, they do NOT have weekends off. In addition, they work 10 out of 12 months a year.

Dinner is typically served as a four course meal and last night the two main featured entrees were turkey or ham. If you know me well then you are well aware of the fact that I could eat Thanksgiving Day food ALL year round. I love turkey, cranberry sauce, and sweet potatoes! Eating for me is an experience, it isn’t just an important necessity in life. While at Dinner last night, my mom took a picture of Peter and me. The funny part about last night is one of the ship’s photographers came around to our table and took a group shot of us. He thought Peter and I were brother and sister. We laughed hysterically. I guess they say couples look alike after spending so much time together, I don’t know! But since I do not perceive us as looking a thing alike, the whole notion was a riot.

We have been having rough seas each night. This is our first Caribbean cruise where we are actually experiencing this kind of weather one day after another. In fact, one man near us fell in the dining room the other night when a wave hit the ship and caused it to rock substantially. This morning, Peter captured some beautiful clouds. So I wanted to share this with you. Mattie and I used to look at clouds all the time and create stories about each one of them. Somehow when Peter showed me this picture, I felt like this was Mattie’s cloud, following us and cruising right alongside us.

In addition to clouds, Peter saw this very beautiful sight over the Caribbean. I did not have the chance to see it, but I am so happy he captured it for me.

Today was a full day at sea as we are travelling about 400 miles from Costa Rica to Jamaica. Though we are at sea the Ship keeps you very busy with all sorts of activities. My mom and I did another zumba class this morning, we walked over a mile on the deck, did a foxtrot class, attended bingo, and then went through all the shops on board. Trying to do any of these activities was royally challenging since the Ship was rocking and pitching, but we managed.

Tomorrow we arrive at Jamaica and this will be our last Island visit before we return back to Ft. Lauderdale on Thursday. In a way returning home is also bittersweet for us and it is always an adjustment, especially since we are being forced to greet yet another year without Mattie in it.

Sunday, December 25, 2011

2011-12-25T20:30:00.002-05:00

Sunday, December 25, 2011

Tonight's picture was taken around Christmas of 2006. We took Mattie to Boston to celebrate Christmas with Peter's family. One of the toys Mattie got that year from his grandparents was featured in the picture. Basically the toy allowed Mattie to build a robot of his own creation. If he put the parts together correctly this structure would actually move by a remote controlled battery powered device. Mattie loved it and created all sorts of robots that December! Mattie was all about creativity, but he also had an analytical side to him because he actually understood how to assemble structures and objects so that they were sound and operational. Which was why I nicknamed him early on as "my little engineer."

Quote of the day: And as we let our own light shine, we unconsciously give other people permission to do the same. ~ Nelson Mandela

Peter and I hope that our blog readers, who celebrate Christmas, had a very happy and memorable day with your families and friends. However, we are also well aware of the fact that Christmas is a challenging time of year for all of our readers who have lost a family member (regardless of the amount of time that has passed by or where you are in the healing process). I know that despite being away from our everyday reality, our reality follows us EVERY where we go. I woke up in a bad mood this morning and missed the presence of Mattie in our lives. The ship is celebrating Christmas in many wonderful ways for the children aboard. Santa visited this afternoon and literally there were craft tables set up throughout the ship’s floors, along with designing your own sugar cookies and ice cream. Mattie would have loved all these hands on activities.

When the Ship docked in Costa Rica, I was greeted with amazing bird traffic right outside our window. There were Frigate birds, pelicans, seagulls, and buzzards. This is the first port we have entered on this trip which provided me with this wonderful sight.

Christopher Columbus landed near Limon, Costa Rica in 1502 but the town was officially founded in 1854. Costa Rica is the third smallest geographic land mass in Central America (with El Salvador and Belize being first and second). Limon is TROPICAL and is normally hot year round with temperatures in the 80s and 90s. However, you should note that it rains everyday in Costa Rica, which makes sense since it hosts an amazing and lush rain forest. Two thirds of Costa Rica’s specifies live in the canopy of the rainforest.

We went on a tour today that involved boarding the banana plantation railway. Our tour guide’s name was Percy and our bus driver was Gabriel. Percy was bright, humorous, and engaging and made our tour time fascinating and it passed by very quickly. In fact, Percy also introduced us to several Costa Rican expressions, the first one being Pura Vida! Pura Vida means pure life. Basically he told us that Pura Vida is a response you can give to someone to answer just about any question. For example, if someone asks you how you are.….. you can respond back with pura vida. If someone asks you how was breakfast or your day….. you can answer back with pura vida too. However, it is your facial expression and how you deliver these two words that will indicate to your recipient if you answer is positive or negative. Obviously if you deliver it with a smile and happiness in your tone, it is clear, that your pura vida is positive in meaning.

Some fun facts about Costa Rica are: 1) it has 50 different species of hummingbirds, 2) it has four different types of monkeys, 3) it is the 3rd largest banana producer in the world (Ecuador being the first), 4) it is the 70th largest coffee producer in quantity, but one of the first in quality!!!, and 5) 25% of the territory is dedicated to the national park system or biological, marine, and land reserves.

As you can see, Costa Rica is a very lush, green, and mountainous Country. Around 160 miles of coast line are on the Caribbean Sea and 1100 miles of the Country’s coastline are on the Pacific Ocean.

While we were in Costa Rica, it was gray and overcast, and rained multiple times while on tour. In fact, the Country receives 200 inches of rain fall in a given year! Percy showed us what a typical cemetery looked like, all the graves are above ground. This is a law, because with the given amount of rain fall, underground burials are not possible.

Percy showed us what coffee beans growing on a tree looked like. He brought the tree to us, because in Costa Rica coffee grows 2000 miles or higher above sea level. This altitude provides the right conditions for optimal growing of Arabica coffee (the type of coffee prepared in many Arab countries). Brazil and Colombia are the first and second largest coffee producing countries in the world. Though Costa Rica can’t compete in quantity it makes up for this in quality. It takes four years for a coffee bush to mature, and only then can beans be picked (when they are red).

At one point during our tour, Gabriel stopped the bus and walked outside in the bushes and minutes later came back with a red frog in a glass. This frog was a poisonous dart frog. NONE of us on the bus were allowed to touch the frog, because if the “sweat” from the frog gets into your pores or in any cuts on one’s hand, it is fatal. Why Gabriel was magically able to touch this frog was beyond me!

Gabriel also retrieved for us a “banana butt.” It is the purple pod like thing that hangs beneath a bunch of bananas. Notice however that around each bunch of bananas is a blue plastic bag. This bag serves multiple purposes. For example, the bag provides heat inside of it to accelerate the growth and ripening of the bananas. However, the bag is a deterrent to animals, especially monkeys. Why? Because NOTHING editable in Costa Rica is BLUE. Therefore, animals know to stay away from blue. It is almost like a repellant. Percy said that even bugs stay away from people wearing blue, rather than orange and reds.

When you peel away the outer layers of the banana butt, you can see these yellowish flowers. It is from these flowers that bananas grow. A banana butt can produce hundreds of bananas, and they develop and ripen in layers. If you continue to peel away the layers of the “butt” you will find more and more layers of flowers. The yellow flowers that you see here are the female portion of the “butt.” The male flowers are within the “banana butt” and help provide nutrients to the female flowers. But it is ONLY the female flowers that produce the banana fruit.

We went on a two hour train ride today through an amazing, lush, and tropical banana plantation. This train was built by an American from Chicago named Minor Keith. Mr. Keith NEVER received a dime from the Costa Rican government for his work, but in lieu of payment he asked for land. What land did he request? The land on either side of the train tracks!!! One smart man!!! With that land he planted banana trees and then asked the Costa Rican government to allow him to transport his bananas to port using the train. Needless to say this man became very wealthy and developed the Dole, Del Monte, and Chiquita companies! Keith hired thousands of former Jamaican slaves using working contracts, who arrived in 1871 to build the railroad which links Limon with the coffee plantations of the Country’s Central Valley for European export. Though the railroad was built for coffee transportation, Keith used it for banana exporting and made his fortune.

I do want to impress upon you that many people live along the railroad tracks. In fact many of the houses sit right in the mud and dirt, have no running water or electricity, and frankly I am not sure how these people survive and thrive given their surroundings. Remember it is always raining, there is no sewerage and
standing water is everywhere.

Bananas in a bunch are very heavy, specifically over hundred pounds when ready to be picked. So to prevent the plant from falling over or from limbs breaking, the trees are supported with this rope like system.

Peter captured what our train looked like while we were crossing over one of the many canals. The train was open air and it was like being transported through a sauna. I loved it, but I realize I am in the minority.

While on the train, we had the opportunity to see some fascinating sights. Actually we HEARD this sight before seeing it. It was a sound I have NEVER heard in my life. It actually seemed more like a person making Halloween spooky sounds than an animal. But today I got to hear the shrieks of howler monkeys. They can be heard up to 3 miles away. These monkeys are matriarchal and the females are even louder than the males. They like to hang out on fig palms and they were very vocal while we stopped and took pictures of them. In fact, Percy told us that these monkeys can be spiteful and fling poop at tourists at times. Luckily we missed this potential happening/hazard.

These monkeys are black and brown, have long and slender fingers, and tails that curl around trees in amazing ways.

We were also introduced today to the two toed sloth. This gal blends in beautifully with the tree. I learned that two toed sloths are nocturnal, unlike the three toed sloth which is up and about during the day! The sloth is a mammal and related to the anteater of all things. At around age 7 (they live up to 40 years), sloths are mature and begin having children. A female gives off pheromones to attract a male. However, after the act, she dismisses the male and carries the baby for 8 months independently. In fact, she gives birth to the baby while hanging from a tree. She holds the tree limb with one arm and uses the other to catch the baby she is birthing and then eats her own placenta. Beautiful no?! She raises the baby for over a year and then teaches it how to fend for itself and eat, and then the child and parent separate for life and the mother then releases pheromones and begins the cycle once again. She repeats this cycle for the remainder of her life. So much for my notion that sloths were slow and lived a sedentary life!

Costa Rica is very lush, beautiful, and its natural beauty captures your mind and heart. There is something very special about visiting a rain forest and it is definitely something one should try to do at some point in one’s life. While in a rainforest you realize that there are forces at play that are much bigger and more powerful than our man made worlds, items, and priorities.

At the end of the tour, Percy introduced us all to Banannitos. Or in other words, lady finger bananas. They are real cuties and taste just like a regular banana, though they are the size of one’s ring finger.

As we set sail tonight, the birds of Costa Rica were singing and giving us a bon voyage. I can’t remember the last time I heard SO much bird traffic. It was wonderful. We will be at sea all day tomorrow as we head for Jamaica on Tuesday.

WE WISH YOU…… PURA VIDA!

Saturday, December 24, 2011

2011-12-24T19:44:00.000-05:00

Saturday, December 24, 2011

Tonight's picture was the photo of Mattie we featured on our 2004 Christmas card. I found capturing holiday photos of Mattie during the toddler years challenging, but I always liked a challenge. Though Mattie wasn't necessarily looking directly at the camera there was something very angelic about his face in this photo. As I look at our tree in the background of this picture, it makes me recall when we used to decorate for the holidays. Many of the ornaments on our tree we bought at antique stores. Mainly because I love older ornaments. They remind me of my childhood and these ornaments seemed to have more character and capture a story. Over the years, our tree also had many new additions created by Mattie. All of which I still have packed away with my other ornaments.

Quote of the day: Children will not remember you for the material things you provided but for the feeling that you cherished them. ~ Richard L. Evans

The most expansive man-made project ever undertaken was the construction of the Panama Canal. It took more than 34 years to complete and cost the lives of over 25, 000 people, who died from either tropical diseases or landslides. The canal is one of the greatest engineering feats of the 20th century, managing to do what nature forgot to do --- connecting the Atlantic to the Pacific, reducing the 12,000 mile sailing distance between New York and San Francisco by more than 7000 miles.

The Panama Canal opened in 1914, fulfilling a dream 400 years in the making. The 51 mile route cuts through sheer granite and dense jungle, creating a vital trade route linking the Atlantic and Pacific Oceans. More than 1 million ships have traveled through the Canal’s intricate lock system, one of the most challenging engineering projects ever undertaken. Gatun Locks are the first set of locks on the Atlantic side. The three-step process lifts a ship 85 feet above sea level and into Gatun Lake (a man- made lake, which took the United States three years to fill). A complete transit to the Pacific would include two more sets of locks. The Pedro Miguel Locks takes a ship down 26 feet and the Miraflores Locks has two more steps down, lowering a vessel another 58 feet. This set of locks is the largest and tallest due to fluctuating tides.

This morning, Peter snapped several pictures of the Island Princess going through the first set of locks (The Gatun Locks) on the Atlantic side. Each Lock is comprised of two lanes that operate as water elevators and raise the ship from sea level to the level of Gatun Lake (85 feet!), to allow the crossing through the Continental Divide, and then lowers the ship to sea level on the other side of the Isthmus.

The water used to raise and lower the ship in each set of locks is obtained from Gatun Lake by gravity and poured into the locks through a main culvert system that extends under the locks chambers from the sidewalls and the center wall. The beauty of the Lake is the water is naturally replenished from the rain forest (since it rains daily in Panama!).

Notice as a ship goes through the locks, it is attached on both sides to a silver colored train. The train sits on a track and serves to guide and stabilize the ship through the locks. You should note cruise ships today are basically Panamax Ships. This means they are at the upper most capacity to fit into the lock system. The creators of the Canal were brilliant, because back in the early 1900’s, ships as big as the Island Princess did not exist. Yet the creators had the where with all, to design locks that were 1000 feet long and 106 feet wide, to meet the capacity of ships in the future.

We went on a seven hour tour today of the Locks and the old and new towns of Panama City. In the picture, my mom and I are standing in front of the pump house of the Miraflores Locks.

The first firm effort to build an all-water route through Panama began with the French in 1880, but financial troubles and diseases made the initiative fail. After its independence in 1903 from Colombia, Panama negotiated an agreement with the US for the construction of the Canal which the US would finish on August 15, 1914 and then managed the waterway until 1999. At noon on December 31, 1999, Panama took over full operation, administration and maintenance of the Canal in compliance with the Torrijos-Carter Treaties negotiated with the US in 1977.

In 2014, when the Panama Canal completes 100 years of operation, the expansion will be complete as well. This will enable the waterway to double its capacity to handle the increasing demand of worldwide trade. It is said that the excavation for this new lock system produced so much debris, that 63 Egyptian pyramids could have been developed and erected from this material.

Goethals was a US General assigned by President Theodore Roosevelt to manage the construction project of the Panama Canal. Roosevelt selected Goethals because he was a military man and therefore couldn’t leave his assignment, like John Stevens did. Stevens was instrumental to the design of the Canal. Stevens was the creator of the Transcontinental Railroad in the US, and Roosevelt selected Stevens to help with the Canal design, but after several years on the project he resigned. Stevens however was a visionary. He is the one who understood that the Canal couldn’t be a sea level canal, but instead used locks and worked with the terrain of Panama (remember Panama sits in the middle of a rain forest and rains EVERYDAY, therefore digging through dirt is virtually impossible, because the dirt is always wet and produces landslides). Stevens also was credited for allocating money to improve the living conditions of the canal workers and working with Dr. Gorgas (who was famous for eradicating yellow fever in Cuba) to eradicate yellow fever and malaria from the region.

Goethals completed the work started by Stevens. The complex where Goethals’ monument is situated is cleverly designed. Because the building behind the statue sits at 85 feet high (to commemorate the 85 feet ships must traverse from sea level to the Gatun Lake in the locks) and the distance between buildings is 1000 feet (the length of an actual lock system).

Panama is known for its beautiful Molas. Molas are made out of fabric that have intricate appliqués sewn onto them. This craft is done by women, and these women learned this skill from their mothers and grandmothers. It is how many of the women in this region support themselves. The colors are SO vibrant and happy! Shopping in Panama is not quite as aggressive as Colombia, however, you still have to haggle over prices, because what you see is not what you should be paying for any of the items!

The Old City of Panama must have been absolutely breathtaking at one time. Just like walking through a European city. This portion of the city was designed by the French, when the French were living in Panama and designing the Canal. However, the Old City has not been maintained and it is sad to see this beauty in many places falling apart and in shambles.

For the most part, the streets of Panama look like this. It truly is a sight one can’t forget, because the level of poverty is enormous. It is a form of poverty we in the US can’t possibly understand. In fact, our tour guide made it quite clear that while the US was in Panama and building the Canal the quality of life for ALL workers was GOOD! They had a safe and clean place to live and plenty to eat. In fact, seeing the Locks and ALL the infrastructure (buildings, roads, and trains) our Country built for Panama, leaves you proud of what we were able to accomplish from an engineering and quality of life standpoint. The locks are a main source of income for the Panamanians. For example, a ship like the Island Princess paid $90,000 to Panama just to traverse through the locks today!

I think these next two pictures speak for themselves.

Notice the trash everywhere and the congestion! This picture was taken in Colon, the Capital of Panama. Colon was founded by Americans in 1850 as the Atlantic terminus of the Panama Canal Railroad, which was under construction to meet the gold rush demand for a fast route to California.

This is a monument dedicated to Fernando De Lesseps. De Lesseps was French and the original engineer on the Panama Canal design. De Lesseps was chosen by France since he created the successful Suez Canal, which was a sea level canal, and he was convinced he could take his Suez Canal design and implement it in Panama. That was an IMPOSSIBILITY, which produced bankruptcy for France and also cost the lives of 20,000 workers who died from horrible working conditions and parasitic diseases. De Lesseps was said to have died a recluse with a tarnished reputation.

In the back drop of this picture is the New City of Panama. Clearly you can see that Panama has two classes, the wealthy and the poor. Two extremes!

The last picture I am sharing with you tonight, we entitled…. The Panama Puss. We are 8 degrees away from the equator and it is VERY hot. A heat that is not describable, with 100 percent humidity. This cat has the right idea, which was to find a shady spot, where she could watch all of us tourists in the HOT sun passing by.

Friday, December 23, 2011

2011-12-23T18:17:00.000-05:00

Friday, December 23, 2011

Tonight's picture of Mattie may be our ALL time funniest one! Not because of the content but how it was taken. This was the photo on the front cover of our 2003 Christmas card. Taking a photo of Mattie at age one and a half was VIRTUALLY impossible. He wouldn't sit still at all and forget about looking at the camera. So one weekend I had the idea of taking him to Home Depot and Lowe's. We strapped him into a shopping cart and was hoping he would be stimulated by the lights, displays, and plants just long enough to snap a picture. We first went to Home Depot, but all the photos there came out blurry or did not capture Mattie well. Then we went to Lowe's and by the poinsettias we caught Mattie smiling. I look back on this picture now and laugh. I wasn't laughing at the time, but now I can see just how hysterical we were trying to capture his attention at the store to get him to smile. It was a very memorable production!

Quote of the day: You may only be someone in the world, but to someone else, you may be the world. ~ Unknown

This morning we entered the port of Cartagena (pronounced… Carta-hay-na), Colombia. The Sea has significantly calmed down and we are seeing sun and experiencing HOT temperatures with 100 percent humidity. The entry to Colombia was quite beautiful. Though this is not Colombia’s capital (it is Bogotá), Cartagena is a large city (population of 952,024) with a rich history. Cartagena was founded in 1533 by the Spanish explorer Madrileno Don Pedro de Heredia.

Cartagena was a shipping center for gold, silver, and slaves between the Americas and Spain. Because of the rich cargos, Cartagena became a favorite target of pirates. Like many successful Spanish ports, Cartagena was a prime target for English and French pirates. One of the most notorious to venture into Cartagena’s beautiful bay was Sir Francis Drake who attacked the city in 1586. After destroying one-quarter of its buildings, including the Cartagena Cathedral, he demanded a ransom, which in today’s dollars is around $200 million. The city recovered but after repeated attacks and severe looting by both British and French invaders Spain decided to pour all its resources (around two trillion dollars) into constructing gigantic fortresses, which made Cartagena an impregnable stronghold.

Cartagena is comprised of an old city and a new city. As we were coming into port, it was VERY evident that we were passing by the new city. To me this part of the city looked just like Miami. It was a very opulent looking area, which I am most certainly not accustomed to seeing in this area of the world.

Over 80 percent of Colombians are Catholic. Therefore, being greeted in the harbor today by this statue of the Madonna and Child seems very fitting and symbolic. The harbor itself was quite beautiful and serves as a special backdrop to the architecture on the land.

Here are a couple of interesting facts about Colombia….. 1) 95% of the world’s emeralds come from Colombia, 2) South America has 13 Countries, of which Colombia is one, 3) Colombia is the only South American country with coastlines on both the Pacific Ocean and Caribbean Sea, 4) Colombia is the second largest fresh cut flower exporter in the world, and 5) only Mexico and Spain have more Spanish speaking citizens than Colombia.

Majestically standing guard on a hillside overlooking the city and harbor is Castillo de San Felipe, a fortress built by the Spanish for protection against pirates while shipping gold out to Europe.

A view from the top of the Fort! As you can see, from the previous picture, to get to the top of the Fort was a bit of a climb. However, you should also note that we were climbing on cobblestones, not a flat path, and the temperatures were in the 90s, with 100 percent humidity!

The Fort has an extensive tunnel system. The tunnels were designed for two purposes. The first purpose was to store gun powder and ammunition, however, the second purpose was for the Spaniards to escape their enemies. The tunnels are narrow and low in height. I basically just fit through them, which means that the Spaniard men in those days were about my stature. They specifically designed these tunnels to meet their specifications, because they knew that their British and Dutch enemies were much taller than they were and would have a very hard time running after and capturing them in these tunnels. You should also note that these tunnels are VERY, VERY dark. Some of us took out our phones or cameras to help light our paths!

After traversing through three tunnel systems, I snapped a picture of Peter standing up on one of the Fort walls!

Inside the Old City are Las Bovedas. Las Bovedas were dungeons initially built for military purposes, but now are home to boutiques and tourist shops. I am not sure I would have deduced that these stores were prison cells at one time, but once I learned about this information, I could immediately see how this was possible. It also was a bit eerie because if these dungeons could talk, I am sure they would have quite a tale to tell.

In the back drop of this photo is the Cartagena Cathedral. This Cathedral is one of the largest in a series of fortresses with a massive exterior and a simple interior.

I have travelled to many places over the course of my lifetime. However, Cartagena was an experience like no other. People of all ages were walking on the streets selling all sorts of merchandise. However, these vendors were highly aggressive and would literally hover and follow you. It was almost an intimidation tactic until you bought something from them. These vendors were everywhere in both the new and old parts of the city. In addition to vendors, there were also people holding parrots or a sloth, and charging you money to take their picture. As Peter snapped this picture of the Old City, what I noticed was the man on the left hand side of the picture with a black shirt. He is an example of one of the vendors we encountered in which he was literally walking beside our group and asking us to buy items every two minutes. I put these folks into context and realize this is how they make a living, but many of our fellow tour mates were disgusted by their persistence and felt harassed so much that they wouldn’t buy any of the items.

The inquisition that had gripped Spain during the Middle Ages expanded to all Spanish colonies and territories including Colombia. While churches were built in Cartagena to bless the faithful, “courts” were erected to seek out, try and condemn anyone viewed as a heretic. The Palacio de la Inquisicion appears to be a charming multi-storied structure and the best example of 18th century colonial Spanish architecture. But behind the ornate stone gateway is a history of misery and torture. During the colonial era, 800 people were condemned to death and executed for crimes of what the Church decreed were “magic, witchcraft and blasphemy.”

While visiting the Inquisition palace, which by the way was beyond creepy (with displays of different tortuous devices to kill people in a slow and inhumane way), there was a courtyard filled with trees as part of this complex. Right next to a banana tree was a three toed sloth. He was actually beautiful, and had a stunning tiger patterned spot on his back!

Cartagena was the center for slave trade during the colony era. Many slaves, after arriving from Africa, would be sold to work in the silver mines of Peru or Panama’s sugar cane plantations. Peter Claver is a VERY special name in Cartagena. That is because Peter was known for his compassion, kindness, refuge, and advocacy for slaves. In fact, Peter became a Saint for his deeds and a church was built in his honor. In the copula of this church, you can see beautiful stain glassed windows. The windows depict Peter’s life and his care and support of the slaves of Cartagena.

I would like to end tonight’s posting with a glorious Caribbean sight….. the sun setting into the water. The sun is another symbol that reminds us of Mattie and makes us feel as if he is with us in spirit.

Thursday, December 22, 2011

2011-12-22T17:23:00.000-05:00

Thursday, December 22, 2011

Tonight's picture was taken in December of 2003. This was Mattie's second plane trip out to Los Angeles to see my parents. His first trip was in March of 2003, when I had to attend a conference in Anaheim, CA. On this December plane trip, Mattie was a year and a half old and was the center of attention with the flight attendants. They brought him strawberries and cookies from first class. Unfortunately they did not realize he wouldn't eat either of them, and that I was the beneficiary of their kindness. This was a VERY active plane trip in which Mattie and I did non-stop playing, singing, reading, and building (yes I travelled with Lego products even back then!).

Quote of the day: Life is 10% of what happens to me and 90% of how I react to it. ~ John Maxwell

It was a very rough night at sea, so rough that neither Peter nor I could sleep. The ship was creaking, rocking, and pitching up and down. It literally did not stop doing this until we entered the port of Aruba close to 7am. Once we docked, I opened up our curtains and this is the sight I saw…. Water with a beautiful mangrove tree growing in the sandbar.

All I can say is that I have a great respect for explorers, our military, deep sea fishermen, or anyone who spends a great time at sea. Because after 48 hours at sea on the ship, having dealt with rough weather and waves, I was thrilled to be docked and to see this mangrove out of our window this morning.

The ship made a very short stop at Aruba today, three hours to be exact. Aruba is located in the southern Caribbean. It is 20 miles long and lies north of Venezuela and east of Colombia. It has a population of 103,000. While native tribes from Venezuela flocked to Aruba as early as 1000 AD Europeans did not discover the island until 1499, with the explorations of Amerigo Vespucci and Alonso de Ojeda. After years of colonial rule, it was not until 1986 that Aruba became its own country, although it still remains a Dutch protectorate.

We took the three hour on land opportunity to walk around the capital of Aruba, Oranjestad. There were two large cruise ships in port today, and between us and the other ship, close to 4000 people transcended upon the Island. Yet somehow it works and naturally you can imagine that the shop keepers are thrilled to see all of us, since we are their main source of income. Peter snapped a picture of my mom and me in front of both cruise ships.

The main street of Oranjestad is called L. G. Smith Blvd and as you can see there is a definite Dutch architectural flair to the city.

This beautiful pink building is actually part of a shopping complex. It looks very different from our malls at home. Shopping in Aruba, like most Caribbean islands, is an art form. Mainly because all price tags are negotiable and really do need to be bickered and haggled over. This is not something that we are used to doing in the States, and therefore this isn’t second nature to us. However, once you get the hang of it, and also understand that everything is already significantly marked up, then it is easier to find the inner strength to advocate for a fair price. Despite what one may think, the US Dollar is still sought after and if it comes to making a sale or not making a sale, most store owners find a way to meet your price requests (assuming they are reasonable!).

While walking, this sight in a store window captured my attention. I entitled this picture…. Boston in Aruba. My theory is the Red Sox, and most Boston teams, have a way of uniting people NO MATTER where they are in the world. It is an instant commonality.

Once the ship sailed away today, we had lunch and then went to our second ballroom dancing class to learn to waltz. Though my mom and I know the basic waltz steps, we learned many more new steps to add to the basic box step. We have also gotten to know the dance instructors. The male instructor reminds me of Billy Crystal with white hair, and his significant other and I got to chatting today. I think the instructors are getting a kick out of me, since I am learning the male steps, so I can dance with my mom. In fact, I got a compliment from the female instructor letting me know that she thought I was a good “male dancer.” She meant this as a compliment since in ballroom dancing the male always leads. It is not easy learning to be the male in a dance partnership, because my natural instinct is obviously to learn the female steps.

We were involved in several other activities aboard the ship today, from bingo to watching a production show this evening. In the midst of these adventures, we are seeing a lot of children. In fact one seven year old boy was standing right besides us as we were waiting on line to enter the dining room. Observing him and what he was talking about and interested in, hit me hard. It is reality moments like this, which cause us to stop, pause, reflect, and absorb who is missing from our life, and how our world has been transformed. Naturally I can’t help but feel different from others, but I am also very aware of the fact that others can’t possibly comprehend the magnitude of this loss for us, how challenging the holidays are for us, or how painful it is to see and hear about other children. Tomorrow we head to Cartagena, Colombia, a part of the world NONE of us have ever seen before, and I look forward to sharing this new experience with you.

Wednesday, December 21, 2011

2011-12-21T17:28:00.000-05:00

Wednesday, December 21, 2011

As promised, tonight's picture of Mattie was the one we featured on our VERY first family Christmas card. In 2002, we had an early snow in November. So literally seeing the white stuff that day inspired me. I dressed Mattie up in his santa outfit, dragged out his entertainment saucer onto our deck, threw a blanket over it, and plopped Mattie right into the mix of it. Peter and I snapped dozens of photos that morning, and this particular one caught my attention! To me this was quintessential Mattie!

Quote of the day: Be a good listener. Your ears will never get you in trouble. ~ Frank Tyger

Last night was the first formal evening on the cruise. My mom snapped a picture of Peter and I. As I look around the ship, I see or at least I perceive a lot of happy people. There are plenty of children aboard as well, as they are celebrating Christmas with their families. For the most part I can tune the happiness out. However, when I am not feeling well, I am unable to redirect my thoughts and feelings away from my own grief. Sometimes I see a little boy on the ship and it makes me pause and remember Mattie and wonder what life would have been like if cancer never struck our lives. Last night the captain of the ship made quite a significant public announcement about parents and their responsibility monitoring their children while on the ship. Some of you may recall from our Alaska cruise in August, that one child was reported missing on the ship after not coming back to his parent’s cabin for 12 hours!!! This was our first experience with a missing person aboard a ship, and somehow I couldn’t help but think this frightening experience caused Princess Cruises to make a verbal statement about parental responsibility on their cruises. It is a shame that parents need to be reminded of their roles, a role that is not always guaranteed for a lifetime.

At the moment, Peter and I are sitting outside on deck 14, with about 20 other brave souls. We have been trapped indoors for two days now. Today’s weather was challenging with a Force 9 wind (which is considered a strong gale, with sustained winds of 40mph). Most decks and outside doors are shut off to passengers for our safety, the pool looks like a tidal wave (therefore it too is sealed off to passengers), and because of the intense winds the ship has been rocking and pitching ALL day. There are sea sickness bags lining all the hallways and elevators and if it weren’t on Dramamine, I would be beyond sick.

Nonetheless, despite the warm temperatures outside, I am trapped inside in air conditioning and am frigid. This is impacting my asthma and as of this evening, I am having a great deal of trouble breathing and have all the signs and symptoms that I presented to my doctor a week ago. So to take me out of the air conditioning and to change my view, Peter insisted that we go up to the outside deck to write the blog. I fought him on this, but the humid air is a God sent over the cold air inside. Though I must admit it is eerie to hear the wiping and howling wind and to see the spray of incredible waves.

While we were eating lunch today on deck 5, which means we were about 20 feet off the water, waves were reaching our window. I had Peter take a few pictures so you could get a feeling for what we were observing. We are definitely seeing fewer people out and about the corridors and public spaces today and I greatly attribute this to the rough weather. Literally it feels like being on a very turbulent plane and NO ONE can walk a straight line. We are all swaying and have to hold onto things while walking.

Despite these incredible waves and weather, we did attend the morning zumba class. The class was totally packed and though I enjoyed yesterday’s class, today’s experience left me flat. For me so much is attached to my mood. However, both my mom and I found it particularly interesting that we were both able to do zumba and keep our balance though we were swaying all over the place. We do not have an explanation for this, but perhaps since we were so focused on jumping up and down and the dance steps, that reflecting on the ship’s status was not a priority.

The ship has all sorts of art work throughout the floors of the ship, but this bubbly art has caught our attention. Actually young and old alike seem to be fascinated with it!

We attended two lectures today. The first one was GREAT! It was entitled….Ships – Where are they now? We saw fantastic pictures and heard the history of SO many classic ocean liners like the Queen Mary, Queen Elizabeth, and the France. I found it fascinating to hear how one ship could be transformed by paint, name, and purpose throughout its lifetime. For example, the Queen Mary was used as a troop transport in WWII (and painted grey) before Cunard changed its colors and used it as a luxury transatlantic cruiser. Now of course, the Queen Mary is docked near Los Angeles and is a living museum and floating hotel. I had no idea however, that one ship could be repurposed and renamed depending upon its owner and purpose. The future of the cruise industry absolutely intrigues me, mainly because in order for a cruise ship to be profitable, it needs LOTS of passengers. This explains why ships are being built to fit more and more people. We saw plans today for future cruise ships that could hold anywhere from 10 to 25,000 people. Can you get over this? I know I can’t! We are on a ship now that holds about 2000 passengers and that seems like a small city!

The second lecture we attended was about the Panama Canal. In two days we will be going through a portion of the Panama Canal on our cruise. Both my mom and Peter are enamored by the feat of building this structure and have read many books about the Canal. This lecturer however should not be allowed to present to live beings….. because he could make talking about ice cream, brownies, and cake seem disinteresting and boring. He went on for over an hour today, and I noticed he lost 50% of his audience. They literally went to SLEEP! The Panama Canal took over 30 years to build, thousands of people lost their life in this endeavor due to Yellow Fever, Malaria, and overall poor environmental conditions. The French basically went bankrupt trying to create a sea level Canal (which was impossible to build based on the terrain), and in the last decade of its development, the United States purchased the project from the French, took it over, and finished the construction of the Canal. This was NOT an easy achievement and it speaks to the ingenuity of our Country. In fact, learning about what Americans were able to successfully accomplish in Panama is beyond impressive, from engineering feats to medical advancements to prevent parasitic diseases. Naturally the commitment to build a Canal was vital for commerce and industry because by ship one can now get from San Francisco to New York much faster (compare a 5000 mile trip through the Canal versus 13,000 miles going around Cape Horn).

I am signing off tonight and I am hoping we are headed to calmer seas soon. Needless to say we are all looking forward to disembarking the ship tomorrow in Aruba even for a few hours. I appreciate those of you checking in with us and I could use your positive energy to help me pull it together to feel better and attempt to enjoy our time away.

Tuesday, December 20, 2011

2011-12-20T16:59:00.000-05:00

Tuesday, December 20, 2011 -- Mattie died 119 weeks ago today.

Tonight's picture was taken in December of 2002. This was Mattie's first Christmas and that year he had some adorable Christmas outfits that seemed to capture his personality. This reindeer onesie was a real cutie, because on the back of it was a reindeer embroidery with an actual fluffy reindeer tail sticking out. I happen to love this picture because it seems to capture Mattie smiling. That year I took dozens and dozens of pictures of Mattie in hopes of introducing our friends and family to the essence of Mattie on our Christmas card. This wasn't the final picture chosen for our card that year, I will show you the one I selected tomorrow night.

Quote of the day: Remember, if you ever need a helping hand, you'll find one at the end of your arm ... As you grow older you will discover that you have two hands. One for helping yourself, the other for helping others. ~ Audrey Hepburn

Today was our first full day at sea. Both the Atlantic Ocean and Caribbean Sea have been quite choppy, with the Sea reaching 7 to 12 foot swells. The ship is significantly rocking back and forth and if it weren’t for Dramamine, it would be a very unpleasant journey for me. Naturally Dramamine has its own draw backs, because it makes me feel very tired, lethargic, and want to sleep.

Peter started his day off very early at the ship’s gym to exercise. Peter loves the morning hours when most people are still sleeping and the ship is calm and peaceful. I am glad he is making time to do something for himself, which typically he wouldn’t do.

My mom and I started the day with an hour long high impact zumba class. This class is quite different from the one we took on the last cruise. However, this class reminded me of the class I take at home and knowing a good portion of the steps helped me significantly. Unlike the last class I took on the ship, today I was not lost.

After zumba, we moved onto a cha cha class. I stood in the line with all the men, and learned their steps while my mom, who was my partner, learned the steps for women. I was not fazed to be in line with the men, and they did not seem taken aback to have me there either. Most likely this was the case because we were all trying to learn the steps and the timing to the music.

All four of us convened for lunch, walked about the ship, and then attended a lecture series on Aruba. Aruba is our first port which we arrive at on Thursday morning. The lecture series was well attended and I am very grateful to the fact that the speaker was only given 35 minutes to present, because he simply read from his PowerPoint slides and made something that could have been rich and vibrant seem very plain and ordinary.

Being at sea provides many challenges especially when the ship has a packed schedule of activities that entice you to be ON and engaged all the time. Finding a way to relax is challenging for us in general but when we follow a schedule even on vacation, it makes unwinding impossible. We are at sea all day tomorrow as well! I am beyond frustrated with the ship’s internet service which is SO SLOW. I am lucky when I can upload a blog posting and it goes through. Because of the slow connections I have decided to forgo all email correspondence because I found I got too frustrated waiting for pages to upload. So this is a two day break from my blackberry and electronic communications, which if you know me well, this is almost impossible to ask me to do. My blackberry is equivalent to my security blanket, a tool that became vital to me when Mattie was battling cancer. So these 48 hours have been an adjustment, as Peter can attest to from watching and observing me.

Monday, December 19, 2011

2011-12-19T19:03:00.000-05:00

Monday, December 19, 2011

Tonight's picture was taken in December of 2002. As you can see Mattie was in his favorite toy... Tot Wheels! Mattie NEVER crawled and desperately wanted to walk, or maybe actually run. Though there is all sorts of controversy over using child walkers, for Mattie this was a God sent. He loved zooming all over our home in it and you would be amazed how he could negotiate tight corners. On this particular day it started to snow, so I opened the door for Mattie to see it and captured his reaction. He literally stopped in his tracks to look at the white stuff and his brief pause confirmed to me his fascination and interest.

Quote of the day: What you see depends on what you're looking for. ~ Unknown

Something woke me up at 4am today and it was virtually impossible to go back to sleep. Not the best way to start our trip away. Before Mattie developed cancer, I could sleep through anything. In fact, I never had a problem sleeping anywhere and at any time of the day. However, post-cancer, sleeping has become a big issue for me. I am not used to this difficulty and the lack of solid sleep greatly impacts my headaches and my physical state.

When we opened up the curtains in our hotel room this morning, we could see a Princess ship sailing by. We assumed this wasn’t our ship since The Island Princess was scheduled to dock at 7am and therefore be able to turn around passengers and board all of us at around noon. However, what we later learned was we did see the Island Princess at 8:30am and they were running 90 minutes behind schedule because they picked up 19 refugees in the water last night and had to follow the appropriate maritime procedures as they were coming into a US port.

Before heading to the ship this morning, we took a walk to a neighboring hotel, The Marriott at Harbor Beach, to have breakfast. We had stayed at this hotel in the past as a family and our visit brought back many memories. The lobby of the Marriott was very festive and Peter and I posed by one of the Christmas trees.

In the past, the Marriott always featured a gingerbread village and train during the holidays. But this year, they had an “Under the Sea” exhibit. However, to me this is a misnomer, since it reminds me more of a winter wonderland. But here are some facts about this tasty display!

Here is a close up of the under the sea display, or perhaps a winter wonderland under the sea would be a more appropriate title!

Embarkation went so smoothly, it was almost impossible to believe. But unlike my usual frenzied self, I really wasn’t getting worked up about much today. I have to imagine this is because I was simply too tired. Peter snapped a picture of the atrium on the ship before it started to fill up, and if you look closely, you can see even Santa was greeting passengers aboard the Island Princess.

Peter, my mom, and I took a tour around the ship before lunch. The ship had a treasure hunt game, which we participated in. The game sent us to 9 specific locations around the ship. One of the locations was the ship’s spa. We actually got a tour of the spa today and we got to hear about every treatment they offer and also saw demonstrations. I was selected to be placed into a floating table. It was magnificent. I basically had to lie down on a table, the table then drops me into an impression and through the fabric I could feel and hear water and heat. Typically for the actual treatment one gets wrapped in some sort of seaweed product and is then placed in this floating table for 30 minutes. I can’t speak to the seaweed, but the table was a great experience even for 5 minutes. As we kept rotating around the spa, we then landed up meeting the acupuncturist. I must admit I am very skeptical about acupuncture, though this procedure has been recommended to me for chronic pain. The notion of needles in my skin makes me uneasy. In any case, guess who was selected to be the acupuncture guinea pig? YES ME! I rolled up my sleeve and then I told the licensed professional that if I started to scream, he was going to get it. However, I must admit I felt nothing and then after the needle was removed, that portion of my arm felt lighter and better. So today I was introduced to acupuncture. Rather funny that I have to come aboard a ship to try something that I could have easily done on land.

Sail away pete picture At around 5:15pm, we began our sail away from Ft. Lauderdale. I snapped a picture of Peter and have entitled it…. Sail away Pete! We will be at sea all day Tuesday and Wednesday, and our first port visit will be on Thursday to Aruba. I have no doubt that seeing land on Thursday will be very welcomed.

I would like to end tonight’s posting with five pictures from our sail away. Thanks for visiting the blog today and for sharing our adventure for the next ten days!