Saturday, January 28, 2012

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 poem composed 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

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

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

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

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

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

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."