Tuesday, May 10, 2011

Tuesday, May 10, 2011 -- Mattie died 87 weeks ago today.

Tonight's picture was taken in August of 2007 at Roosevelt Island. As you can see it was raining and Mattie came prepared with his Lightning McQueen umbrella. I still recall buying this umbrella with him. He loved Lightning McQueen, and between Peter and I, we must have seen the movie, Cars, 200 times with Mattie.

Quote of the day: There are places in the heart that do not yet exist; suffering has to enter in for them to come to be. ~ Leon Bloy

Despite not feeling well, I did get up and out today. I even walked three miles. But you shouldn't confuse my walking with feeling well. Sometimes I walk because it helps take my mind off how I am feeling. I spent a good portion of the afternoon finalizing raffle items for the walk. In fact, I decided to give you a picture display of what we have been working on. I think the pictures and items speak for themselves. In fact, when I attended a Georgetown Hospital parent advisory board meeting tonight, the chair of the board let everyone know that she was very impressed with our raffle, and hasn't seen another come close to it. I was very touched by her sentiments, because it has been a solicitation challenge, and the coordination of this is cumbersome. Which is why, for me, it is important to have a raffle coordinator I can get along with and is flexible with my demands. Take a look at our 10 packages! Tickets for these items are being sold on-line, and on the day of the event. You do not have to be present at the walk to win! For tickets, please visit: https://www.mattiemiracle.com/Raffle.html

Annapolis Sailing Excursion

Sail Away for a fabulous day on the bay aboard the Windemere – a 39’ sailboat docked in Annapolis. Day sail is for up to 4 people for 4-6 hours and can be scheduled for week/weekend day this summer
(excluding Memorial Day Weekend, July 4th Weekend and June 12-20).

Around Town Gift Basket

Enjoy all that our area has to offer with this variety of gift certificates from local restaurants, vendors, and 2 tickets to Wicked the Musical on June 18, 2011 at 1:30pm. Also included are a custom portrait by the renowned Jeff Lubin Portrait Studio and a salon package from one of DC's top spots, Molecule Salon.









 
 
 
 
 
 
 

Washington Capitals Fan Pack

A Caps enthusiast’s dream – a fabulous collection of Caps Memorabilia and Autographs! And, get ready to cheer them on to victory in the 2011-2012 season with 2 sets of tickets to 2 home games (dates determined by winner and donor)!

Kenny Chesney Tickets

Calling all Country Music Fans – Enjoy 2 tickets to the SOLD OUT Kenny Chesney Concert on June 4, 2011, 4:30pm, at FedEx Field in Landover, Maryland.

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Clyde’s Star Spangled Basket

This basket includes all you will need to host your own summer “lobstah” feast and then treat yourself to another fabulous feast with $200 in Clyde’s Coins!




 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Washington Nationals Tickets

Enjoy a night out at Nationals Stadium – June 22 – first pitch at 7:05pm – when the Nationals take on the Seattle Mariners. Game package includes 4 Diamond Level seats with parking and “all you can eat” in Diamond Club or Diamond Club Seats! Nats collectibles included.

Pamper Me Package

Everything the “Lady of the House” needs to feel relaxed and pampered – from a day at the spa (certificates to ALL 3: Serenity Day Spa, Elizabeth Arden's Red Door, and Sugar House Day Spa) to some special items just for her!

Red Sox Fanatics Package

For all of the displaced Red Sox Fans out there – enjoy this package of collectible Red Sox Gear along with two Club Box tickets to the Monday, July 18, 7:05pm, game vs. the Baltimore Orioles at Camden Yards.

Summer Fun Basket

The Dog Days of Summer are just around the corner – and this item has everything you will need to keep the entire family entertained and excited all summer long –
including St. Stephen's and St. Agnes School Summer Camp, Nats Tickets (August 23, 7:05pm, Diamond Club Seats), Amusement Parks, and so much more!

Collectible Lego Systems

Expand your LEGO® collections with a 4000 piece Tower Bridge system, Star Wars systems, Indiana Jones systems, and several other highly collectible items too!



This evening, I headed to Georgetown University Hospital for a parent advisory board meeting. After the meeting, we had a rehearsal for the presentation three of us will be giving at the Medical Grand Rounds next Friday. I spent weeks working on a speech, but it is hard for me to tell Mattie's story and messages learned in 10 minutes. So my 30 minute speech needs to be cut down to 10 minutes. Not an easy thing for me, since in my book everything I am saying is important. Visiting the hospital on a Tuesday is particularly challenging, and then factor into it that where the board meeting was tonight, was a waiting room in the pediatric cardiology department. A waiting room I recall being in with Mattie several times. It was eerie tonight, because as I looked around the waiting room, I remembered all the toys and tables. As if Mattie was still there. So it was a long and emotionally draining day. A day which acknowledges week 87 of Mattie's passing.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. As so many of you know, Kristen writes to us each Tuesday in memory of Mattie's death. Kristen wrote, "Thinking of you today. Planning to be at the walk next Sunday...I am looking forward to seeing the culmination of all of your efforts! Thinking of you this Tuesday and everyday."

Monday, May 9, 2011

Monday, May 9, 2011

Tonight's picture was taken in June of 2007. As you can see, there was a lot going on, on our deck. Mattie had an inflatable pool that took up a 1/3 of the deck space, we had Patches sitting on the sandbox, and all of us eating together outside. Thank goodness we had those special moments and that we also captured them in pictures.


Quote of the day: The sorrow which has no vent in tears may make other organs weep. ~ Henry Maudsley

I began my day by sifting through emails. In my inbox, I was sent a video clip entitled, If I Had My Child to Raise Again. The title actually caught my attention and I therefore clicked on the link. I actually found the video very touching and very meaningful, and it cuts to the chase about life. The true meaning and joy in life is not about doing, competing, or completing tasks. It is about the sincere and genuine connections we make with others. Especially our children. You only have one opportunity to raise your child, so the video in essence asks you how you want to spend that time. Do you want to spend it looking at your watch running from one activity to the next, or do you want to spend the time really watching your children grow? Needless to say, for me, who no longer actively raises a child, this video resonated with me. Because I know all too well, through Mattie's death, that what I remember and what is important was not the things accomplished or achieved, but the connections and lessons we learned together. I have gained a much clearer perspective on life and its priorities, one of which I try to write about or reflect upon each day here. I hope you find this video as powerful as I did! Click on the link to see the video: http://www.ifihadmychildtoraiseagain.com/

Today was a busy day. I stayed up to around 2am doing Foundation Walk plans, and then thanks to Patches she had me up by 7am. I accomplished a lot in terms of tasks, and while out, I even bumped into one of the preschool teachers at Mattie's school. The irony is she said she was thinking of me today, and then all of a sudden there I was! Mattie was never in this teacher's classroom, and therefore I haven't had the opportunity to spend much time with her. But we are changing that by meeting next week for coffee/tea.

I jumped around from one place to another today, and finally later in the afternoon, went home to do more work. Peter came home earlier today because he is wiped out and still on another time zone. I found him sitting on our deck working on his computer with the cat right next to him and one of Mattie's fountains bubbling in the background. It was wonderful to hear the fountain going again, and despite all the chores I did today, I found the time to buy a string of outdoor summer lights and a beautiful sun and moon wind chime to appreciate. We put both of these items up on our deck tonight after having dinner outside.

Despite my productivity, I started not feeling well again this afternoon. This particular feeling makes me absolutely crazy, because it is an indescribable pain. A type of pain where nothing makes you feel good or comfortable. Tomorrow evening I have a dress rehearsal at Georgetown University Hospital to prepare for the Grand Rounds on May 20. I am actually happy we are doing this, because when speaking to a crowd it is nice to understand the space and the equipment ahead of time.

Sunday, May 8, 2011

Sunday, May 8, 2011 -- Second Mother's Day without Mattie

Tonight's picture was taken in May of 2007, on Mother's Day. Peter and Mattie took me out for lunch and as you can see, Mattie was crossing his arms over his heart to indicate his love for me. I am living proof of the fact that it isn't only FIRST holidays that are challenging after a loss. It is really all holidays. Mother's day is a bittersweet occasion and it is simply hard to believe the cutie in this picture is no longer with us.

Quote of the day: A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts. ~ Washington Irving


To all my readers who are mothers, I hope you had a lovely Mother's Day. As Washington Irving's quote indicates, motherhood is usually a life long commitment and one that provides undying love. A mother's job is a tiring, relentless, draining, unpaid, and many times thankless one. However, when you see your children happy, healthy, and developing, you know that it is all worth it. In fact, nurturing a child maybe one of life's greatest gifts, and though each day provides its own challenges, don't forget how lucky you are because as I have experienced, happiness and your child can change or disappear in an instant.

I woke up today at a normal hour. NOT at 4am! Patches is thrilled to have Peter home, and with his arrival, her anxieties have subsided. I was greeted this morning by these beautiful orange/pink roses. A color Mattie would have approved of. Throughout the day, I received emails and text messages. I thank all of you for thinking of me and reaching out.

My friend, Tina, wrote to me today, and just like on Easter, she presented me with a whole bunch of ideas and things to do together. I think the greatest gift a friend can give you is to be included in his/her life. I appreciate Tina's kindness, and I am awaiting her report about the ice cream flavor of the day. She and I enjoy going for ice cream together, and one of the shops we visit had a feature flavor today called "Breakfast in Bed." We joked back and forth about what that actual flavor was, and based on its title, we thought about bacon and maple syrup. I honestly can't picture breakfast foods as ice cream, which is why I can't wait to hear the verdict!

As I told my blog readers last night, my friend Christine gave me a gift yesterday. She told me I couldn't open it until today. So I abided by her wishes. When I opened up the card today, I quickly realized the gift was NOT from Christine. Instead it was a mother's day present from her two children. Christine's son, Campbell, was one of Mattie's closest kindergarten friends, and Campbell and Livi (his sister) wanted me to know that not only was Mattie their friend, but so am I. Campbell and Livi painted a ceramic cupcake for me, and as you can see the frosting is Mattie's favorite color, red. As so many of you know, Mattie loved cupcakes and I used them in the hospital as incentives for him to participate in physical therapy. So this cupcake has many meanings! Inside the ceramic cupcake, they placed shells and rocks, things that Mattie loved to collect, and they also signed the inside of the cupcake! As I told Christine, I was deeply touched that they thought of me on Mother's Day. One of the things I miss is receiving things from a child, I miss Mattie's cards, the art, and the extraneous rocks, sticks, and leaves! Receiving a gift from a child means something to me. To me such gifts are to be cherished, and they are symbols of the relationships Mattie created, which continue to live on.

It would have been very easy for me to stay in my pajamas today and work on Foundation materials all day. However, Peter wanted us to get out, walk, get fresh air and spend time together. It was a rough evening and morning, because certain things just triggered tears. Peter's mother's day card started my crying again today. It is, simply stated, a hard realization not to have Mattie around.

Peter and I went for a walk on Roosevelt Island. Parking there was a major problem today. Mainly because the weather was lovely and everyone wanted to be there. I really thought we were not going to be able to park the car, but then I forgot I was with a Bostonian, who has no trouble creating his own parking space!

While walking the Island, I showed Peter where I planted forget me not seeds on Mattie's birthday in April. We then talked about some of Mattie's favorite spots on the Island. However, to my surprise, I saw hundreds of yellow irises. I have walked on this Island so many times, and each spring I am amazed by all the greenery that unfurls after a long winter. But I do not recall ever seeing these wonderful irises. For me this was a first.

I would like to end tonight's posting with three items. The first is a message from my mom, entitled, A Mother for All Seasons. Following this message is an article written by Bombeck entitled, Mothers Who Have Lost a Child, and finally you will read a message I received today from Ann, a nurse and a daily mattiebear blog reader. Ann and I have never met each other.

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A Mother for All Seasons by Virginia R. Sardi


Your instincts as a mother have always been pure and true and Mattie derived many benefits from living his seven years on earth under your guidance experiencing the fullest measure of what it meant to be a treasured son. With love surrounding him in every caring motherly gesture that came so naturally to you, you acted with a God given sense of urgency that gave him a special bond to you from infancy all the way to his development as a little boy that made his spirit soar with ecstasy in the good times and carried him through his trials and tribulations he was to experience in the bad times. You knew he was a gift to you from the start and appreciated the precious moments to be shared with him. For wise beyond your years, you understood that life was to be lived in the moment and not saved for some future time that might never be. In communicating how much motherhood meant to you, Mattie’s life had meaning and substance while he was alive and now that he is gone, his life remains a symbol of hope, courage and strength for those of us left behind to ponder how to put into practice the lessons we have learned from the heartache of your loss. Vicki you are a remarkable mother for all seasons and for all reasons because you gave your all and unburdened your soul in telling the story of Mattie’s illness and death. In so doing, your readers who are mothers have come to rely on you and your advice to try to become the best mothers they can be. Happy Mother's Day!


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A year ago, I received an article in the mail from my colleague and friend, Denise. I found this column so meaningful that I kept Denise's letter, so that I could post "Mothers Who Have Lost a Child" on Mother's Day. I read this column again today, and I commend the late Erma Bombeck who had the where with all to understand that Mother's Day isn't always a happy occasion for all of us. For many of the moms out there who are reading this tonight who have lost a child, I am thinking of you and I hope you find some meaning in this article

Mothers Who Have Lost a Child - May 14, 1995 by Erma Bombeck


If you're looking for an answer this Mother's day on why God reclaimed your child, I don't know. I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying a child and then lose it to miscarriage, accident, violence, disease or drugs.

Motherhood isn't just a series of contractions, it's a state of mind. From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep. We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month." "If I had taken him to the doctor when he had a fever." "If I hadn't let him use the car that night." "If I hadn't been so naive. I'd have noticed he was on drugs."

The longer I live, the more convinced I become that surviving changes us. After the bitterness, the anger, the guilt, and the despair are tempered by time, we look at life differently.

While I was writing my book, I want to Grow Hair, I Want to Grow Up, I Want to Go to Boise, I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reflect.

The children in the bombed-out nursery in Oklahoma City have touched more lives than they will ever know. Workers who had probably given their kids a mechanical pat on the head without thinking that morning are making calls home during the day to their children to say, "I love you."

This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back.

In the face of adversity, we are not permitted to ask, "why me?" You can ask, but you won't get an answer. Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it.

The late Gilda Radner summed it up well: "I wanted a perfect ending. Now I've learned the hard way that some poems don't rhyme and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity."

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This message was sent to me today from a daily blog reader, who happens to be a nurse. Ann wrote, "I have been meaning to write for a while but obviously haven't so I thought today would be a good day to let you know that I am thinking of you and Happy Mother's Day. Even though Mattie is no longer here you are his mother so I think saying Happy Mother's Day seems appropriate. There are a few things that I wanted to write to you about. First, several weeks ago you wrote that you were curious as to who still read your blog. I wanted to let you know that I read the blog everyday. I find you words to be so powerful. You make me want to be a better person, a better mom, a better health care provider, and to be more involved with people around me, to live in the moment and be appreciative of everything I have. You truly are an inspirational person. So for this I thank you.  Another thing that I wanted to write to you about was your talk for the medical staff at Georgetown. I just wanted you to know that I believe that you are going to give a tremendous / invaluable talk to that community. And that your words will have an impact on the care that they will provide in the future."

Saturday, May 7, 2011

Saturday, May 7, 2011

Tonight's picture was taken in July of 2007. Mattie was having a swimming lesson at a local recreation center. What reminded me of this picture, was the simple fact that I revisited this recreation center today to attend a garden show. Mattie was very tentative about swimming and he truly disliked how cold the water in this pool was kept. The policy at this particular recreation center was that parents could only watch the lesson from a different floor, through a window. I was very apprehensive about him being by the water without my presence nearby in case he needed help. I tried to plan ahead and be cautious of things, so that Mattie wouldn't get hurt. The ironic part is with all of this planning and protecting, I had no idea that the real threat was growing inside his body. Something that was out of my control.


Quote of the day: Sorrow makes us all children again - destroys all differences of intellect. The wisest know nothing. ~ Ralph Waldo Emerson

Patches, my cat, woke me up at her usual howling time, 4am. She has upset my sleep for two weeks now, and I am not sure who was more excited to see Peter today, her of me?! Since I was up early, I did more Foundation work, and then I went out for the rest of the day. I started my journey today at a garden show. Through Mattie's preschool auction in March, I purchased two specially grown tomato plants. I went to the show today to claim my plants, and also came home with a sweet bell pepper plant. While at the show, I bumped into two other people from Mattie's preschool. Naturally the conversation turned to children. A natural topic of conversation for parents. These moms were talking about how they have no time for themselves, and how their children and their activities consume every waking hour. I remember those days quite well, and I know that venting as a mom is very important. So I did not find their topic of conversation inappropriate. But what I found interesting was they did not realize how their conversation could be perceived by me. I no longer have Mattie in my life, so I know quite well what it feels like to have NO childcare responsibilities, and technically I could do whatever I want, whenever I want now. But here is the thing...... this is definitely an overrated concept, especially once you have been a mom. It is very difficult to go from being loved and responsible for your child, to not having this role anymore. Naturally all moms will find this out once their children grow up and are independent. Even then though, these moms will always be moms, their roles may evolve, but their children will be physically present in their lives. So the comparison to my situation can never be the same. Nonetheless as I was hearing this chatter, I couldn't help but want to say (but didn't)...... careful what you wish for. Sometimes what you wish for, may not be as great as what you think it will be.

After the show, I wanted to stop by and see Mary, Ann's mom, and wish her a Happy Mother's Day. However, on my way there, I received an email from my friend, Tamra. Her daughter was volunteering at a local Alexandria event to raise money for after school tutoring and reading programs for children. So on my way to Mary, I first stopped by to see Meredith, Tamra's daughter. I got out of the car, gave her a hug, had some lemonade, contributed, and then was on my way. As I was leaving, there were two high school students in front of the event, holding and waving signs and encouraging people to stop in and donate. As I was pulling out of the parking lot, they saw me and and threw up their arms and gave me two thumbs up for stopping. It was a very cute gesture and it left a visual impression upon me!

I spent several hours with Mary today. One of her caregivers was with her, and he and I continued to talk for an hour straight while Mary was having her lunch. I could tell Mary was absorbing this conversation, and it kept her engaged and busy. Even Mary's roommate was enjoying the conversation and she stayed close to us for most of the afternoon. While visiting Mary, my friend Christine stopped by to give me a surprise Mother's day present. She told me not to open it until tomorrow, but it was very thoughtful of her to think of me in this way. Because as she knows with Mattie gone, it is a challenging day to say the least.

Later on today, I picked Peter up at the airport. The airport was an absolute zoo. The international travel area was packed with hundreds of people. It took Peter about two hours to process through customs. It is hard to believe he has been in transit for over 24 hours! When he got home, I helped him unpack and basically insisted that every item he travelled with get laundered. We had a nice dinner together outside on the deck. I could tell he enjoyed the fresh air and the freedom to decide when and what he was doing. After being on someone else's schedule for two weeks, that can be very draining. We had a very stimulating dinner conversation where I learned a lot about the culture in Bangladesh, Kenya, and Qatar. As Peter was talking, I could see that he really appreciated aspects of the cultures he visited and therefore returning home is somewhat complicated. As I was hearing him, I told him he was experiencing a concept called reacculturation. A very normal phenomenon that occurs when traveling abroad and then returning home. Clearly, when Peter left the US two weeks ago, he had to acculturate (a process in which members of one cultural group adopt the beliefs and behaviors of another group) quickly to each of his client environments. However, with this adjustment, it naturally exposed him to different ways of thinking and in a way he got to experience business connections on a personal and meaningful level. Mainly because in developing nations, people are VERY grateful and appreciative that you came to visit to share skills, expertise, and knowledge. For example, on the last day Peter was in Kenya, the conference of hundreds of professionals literally gave Peter a standing ovation. But it wasn't a typical clapping as we know it. It was a clapping with rhythm and done in unison with words!

Peter acculturated to his new environments, but upon returning home to his own culture, it can be confusing and challenging to reorient one's self. There are aspects of the foreign cultures that he may miss and perhaps long for. So in essence this is reacculturation, in which he now needs to readjust to living back in his own home and culture. Having studied cross cultural counseling in graduate school and being mentored by the US Father of Cross Cultural Counseling, everything Peter was saying to me made perfect sense. I understood it completely and I think in a way this surprised him, that there was actually a name for what he is feeling. I wish I could share in his insights and observations, but I realize when I don't understand something the best thing to do is listen and to ask more questions. So needless to say, we had a good dinner together, and even Patches was thrilled to be outside and enjoying our garden.

Friday, May 6, 2011

Friday, May 6, 2011

This picture was taken in July of 2007 on Roosevelt Island. This was one of Mattie's favorite rocks on the Island. It can be found near the only beachy area on the Island. Some of you may recall that on Mattie's birthday this year, I went to Roosevelt Island alone and planted forget me not seeds right near this rock.

Quote of the day: Grief teaches the steadiest minds to waver. ~ Sophocles


Based on how I have been physically feeling, I decided today to take a forced break and go for a massage and a facial. The massage I received was very different from any I have had in the past. Because this massage combined Shiatsu and Reflexology. I did not really know much about these techniques, but I learned about them today first hand. In addition to the massage, the therapist does deep breathing techniques, and she literally had me breathing and reminding me to relax. Post-cancer, I find that I naturally tense all of my muscles, even when I am sitting still. Therefore, I am all aches and pains everyday, and trying to give me a massage can be a challenge. I am a therapist's worst nightmare, because no matter how much you try to work through a knot, it simply remains.

Today I learned that shiatsu is a Japanese form of bodywork. The word shiatsu means "finger pressure," and shiatsu is sometimes described as a finger pressure massage. Like acupuncture, shiatsu is based on the holistic system of traditional Chinese medicine, where illness is thought to result from imbalances in the natural flow of energy, or qi (pronounced "chee") through the body. Shiatsu therapists use finger and palm pressure to energetic pathways, called meridians to improve the flow of qi. A scientific explanation is that shiatsu calms an overactive sympathetic nervous system, which improves circulation, relieves stiff muscles, and alleviates stress.

The massage therapist began my session by examining my feet and literally rubbing them. From just touching my feet, she identified every stress point in my body without me having to say a word. She let me know that she could tell I had the feet of a ballet dancer, small but quick hands, and the back of a lion (meaning that I carry the weight of the world on my back). The whole analysis was fascinating, because frankly if someone told me about this technique, I would have been skeptical. But apparently I learned today that my feet don't lie. Reflexology is an alternative medicine involving the physical act of applying pressure to the feet, hands, or ears with specific thumb, finger, and hand techniques without the use of oil or lotion. Reflexology is a form of bodywork that focuses primarily on the feet. The underlying theory behind reflexology is that there are "reflex" areas on the feet and hands that correspond to specific organs, glands, and other parts of the body. This picture is an example of a reflexology chart, demonstrating the areas of the feet that practitioners believe correspond with organs of the body.

Later in the day I spent several hours working on Foundation Walk items. In the midst of this, I had the opportunity to talk tonight with Toni, Brandon's mom. As many of my faithful readers know, Brandon was Mattie's big buddy at the Hospital. Mattie and Brandon were battling cancer at the same time. I am thrilled that both Toni and Brandon will be volunteering at the Walk this year. The Walk wouldn't be the same without Brandon. Brandon was Mattie's closest friend while coping with cancer, and in many ways they were good for each other. Though Mattie is no longer with us, he has permanently connected Peter and I to Brandon and his family. Through this connection, Mattie lives on.

I also traded emails today with Linda, Mattie's childlife specialist. Linda and several of Mattie's nurses will be at the Walk again this year and doing a surprise craft activity with the children in attendance. Needless to say, Mattie would have loved this activity because the item the kids will be making was one that Mattie always demanded from Linda during every hospital visit. We had quite a collection of these items by the time he was done with treatment. I am thrilled that Linda and Mattie's nurses will be at the Walk. I have the utmost respect for these women. They will always have a special place in my heart, because I saw them under the best and worst circumstances, and regardless of what was thrown their way, they always handled it was great skill, sensitivity, and compassion.

Peter flew today from Kenya to Qatar. But then he had an 8 hour layover in Qatar. The airline was very thoughtful and comped Peter a hotel room at the airport for his layover. He tried to sleep, but he is all thrown off time wise. He is now flying from Qatar to Washington, DC. A 14 hour flight! I will be picking him up at 4pm on Saturday.

Thursday, May 5, 2011

Thursday, May 5, 2011

Tonight's picture was taken in June of 2007. Mattie was at his preschool buddy's superhero birthday party. As you can see, Super Mattie was saving the day. He threw down a pretend brick wall in the background, and was removing all obstacles from the scene. He was zipping around that day, but I was able to capture him and his beautiful smile in motion.

Quote of the day: Grief is a process of awareness, of making real inside the self an event that already occurred in reality outside. ~ Parkes and Weiss


Today was a very busy day. It started with a phone call to Representative Van Hollen's office to discuss and get an update on the work we are doing together. Then it was followed by another phone call to Margaret, who is a writer for the Georgetown Pediatrics, a publication distributed by the Georgetown University Hospital. Margaret wanted to get a parent's perspective regarding Dr. Shad's (Chief of the HEM/ONC pediatric clinic at Georgetown) palliative care program she is establishing at the Hospital for pediatric patients. This program is being supported by a Hyundai Hope on Wheels grant which Dr. Shad received in the fall. Margaret wanted to talk with me because I understand all too well the benefits of palliative care. Palliative care is different than hospice or end of life care.

Palliative care is the medical specialty focused on improving the quality of life of people facing serious illness. Emphasis is placed on pain and symptom management, communication and coordinated care. Palliative care is appropriate from the time of diagnosis and can be provided along with curative treatment. In essence palliative care is integrated and coordinated care in which physicians work with social workers, therapists, chaplains, and other supportive specialties. As I told Margaret today, this type of care is the only effective way to manage a serious or terminal illness. Physicians can't solve their patients' issues alone, it takes a range of professionals involved to adequately address a pediatric patient's pain, nausea, loss of appetite, difficulty sleeping, and overall quality of life.


After these calls, I met up with Ann, her mom Mary, and Ann's cousins Helen and Ed. We took Mary shopping and out to lunch. As we left the restaurant we bumped into two other friends, Margaret (Mattie's preschool teacher and my friend) and Tina (my friend who just hosted a successful art show which benefited Mattie Miracle). While talking with Margaret, she could see I was tired and at times overwhelmed. As she was giving me a reality check, she put her forehead against mine and looked at me. A move that my dear Mattie used to do to me all the time. Something Margaret knows. I did not say anything to Margaret, but it was as if this motion was giving me a message. Needless to say, Margaret, Tina, and I had a great time chatting, and it was just a meeting by happenstance.

Later today, I decided to go get my haircut. That may not sound like a big deal, but since I haven't done this for at least 8 months, it became a big deal. I have been going to the same person, Celina, for over 8 years. In fact, Celina knew me before I was pregnant with Mattie, and then of course followed his life with me, each time I went in for a haircut. Perhaps it is me and how I interact with people, but all people I interact with are important. Making connections with others is a priority to me and if I am going to work with you, I am going to have to get to know you. I have followed Celina from one salon to the next, until she become the manager of the Molecule Salon on M Street, NW in the District of Columbia. I know about Celina's family and know her husband and her sister. Both of whom work at the salon. What I value about Celina is she appreciates family and also has a heart of gold. She supports all sorts of causes and when her employees over the years have gotten seriously ill, she cares for them in extraordinary ways. Besides being a good person, she also is skilled at what she does and listens to what you want rather than feels she knows what is best for you. A rare treat to find in a salon these days. Needless to say she was worried that she hadn't seen me in a while. She asked me about the Foundation's Walk in May and also asked me how she could help. She wasn't going through the motions, she seriously wants to help and she presented me with two concrete ways. The first is that she handed me a gift certificate worth over $350 as a raffle prize so its recipient can come to her salon for services. The second offer for help is she wants to come to the Walk with a few of her employees and have a nail art table for young girls. She told me she is doing this for us for FREE and all the proceeds she generates from this will come directly to Mattie Miracle. I don't know about you, but this was amazing to hear, and certainly not something I ever expected to happen today.

Celina's kindness further reminds me about the importance of making connections. Of conversing and listening to one another. It is through being human and making time for others, that true greatness can be achieved. I have attached a link to Celina's salon: http://www.moleculesalon.com/

Peter has his last day in Kenya tomorrow, and in the evening boards a plane headed back to Qatar. He has an 8 hour layover in Qatar and then a 14 hour plane trip back to Washington, DC. He is naturally exhausted and that should be NO surprise since he has been traveling four out of the last six weeks, and logging almost 37,000 miles in airline flights during that time!

Wednesday, May 4, 2011

Wednesday, May 4, 2011

Tonight's picture was taken in June of 2007. Mattie was attending his preschool buddy's super hero party. As you can see, Mattie was dressed as superman. Mattie and another friend were wrapping me up in paper streamers, apparently I was playing a "bad guy" and naturally all bad guys have to be rounded up and captured. I recall that day so well. It was extremely hot out and yet I remember Mattie's energy and the fun he had connecting with his friends.

Quote of the day: Mourning is love with no place to go. ~ unknown author

I started my day off by having tea with my friend, Christine. Christine and I were text messaging back and forth last night and she was providing moral support as I have been dealing with sleepless nights due to our cat and also because I haven't been feeling well. Sometimes receiving empathy from someone can make you feel better. Mainly because it makes you feel like you have been heard and matter. So this morning we met, chatted about all sorts of things, and also discussed the Foundation's Walk. Christine is in charge of registration, which is a huge logistical undertaking. Fortunately Christine and I have similar work habits. We are both very organized, focused, and thorough. While we were meeting, our mutual friend, Ellen joined us. As many of my readers know, Ellen is Charlotte's mom and Christine is Campbell's mom. Mattie's two closest kindergarten buddies. Ellen gave me some ideas for promoting certain items at the Foundation Table at the Walk this year, which I found very helpful.

So the Walk plans are solidifying quite well, but it is definitely a major undertaking. This afternoon, I worked on staging each of the 10 raffle baskets. Throughout the day, my friend Carolyn (our raffle chair) was emailing me and also giving me moral support on this task. As you can see it takes a great deal of moral support to chair a Walk, and I appreciate my friends who understand this and also find a way to let me know how they feel. Ann's cousins are in town from Massachusetts. I have gotten to know Helen and Ed for the past two years and really appreciate their openness and willingness to help. They have contributed to the raffle and also spent hours tonight with me wrapping raffle baskets. We completed six out of the 10 baskets. So I would consider that progress. To learn more about the raffle and the items were are featuring at the Walk, please click on the link:  https://www.mattiemiracle.com/Raffle.html

While at Ann's house, I had dinner there tonight. I haven't sat with her family in a while, and I almost forgot how lively it can be with children at the table. Children have an energy about them and as I sat there, all I could think was..... what a stark contrast to my life. A contrast that most people can't possibly imagine.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "Your thoughts about Ann's visitor yesterday were very powerful. Interesting how people with a common experience see it differently. It really isn't unusual, but, the experience reinforces our position. I do think that having another child does change the loss. She would have abandoned her other child had she not focused on its life and each of us cope with loss uniquely. Your relationship with Mattie was and is very intense. It resonates in the blog and with each photo and description, your commitment to Mattie is clear. He was a reason for life and love for Peter and you and you gave it your all and continue to do so with the Foundation."

Tuesday, May 3, 2011

Tuesday, May 3, 2011 -- Mattie died 86 weeks ago today.

Tonight's picture was taken in June of 2007. Mattie was on the way to his friend's superhero party, and he decided to dress up as Superman! As I look at this picture I realize just how appropriately dressed Mattie was. He had superhuman strengths and powers, and showed great bravery under the worst of circumstances.


Quote of the day: Love is stronger than death even though it can't stop death from happening, but no matter how hard death tries it can't separate people from love. It can't take away our memories either. In the end, life is stronger than death. ~ Author Unknown


It was a busy day. Despite not feeling great, I worked through it to finalize our Walk's raffle. I have been working closely with my friend Carolyn, our raffle coordinator, and despite the fact that running a raffle can be very labor intensive and stressful, Carolyn has a good sense of humor and is organized. All things I greatly appreciate. The raffle is well on its way, and pre-sales tickets are selling quite well.

While at Ann's house today, I had the opportunity to meet two moms from her children's school. I hadn't met these ladies before, but as they were trying to figure out who I was, the natural question was, do you have children and where do they go to school? I don't bring up Mattie with people I don't know, unless I am asked about my children. When I mentioned Mattie, both of these women knew instantly who I was, since clearly Ann has spoken to them about Mattie. However, to my surprise one of the women admitted to us that she lost her first child to a house fire. She went on to tell us that she rarely talks about this and usually doesn't tell people. For her it has been 8 years since her son died. She told me that it does get better with time. I couldn't help myself, and I told her I did not think this was going to be true in my case. In addition, I told her that besides the loss of Mattie, I also lost a big part of my identity and future. She couldn't understand this actually, maybe because she has another child. I am not sure. What I do feel, as I have always suspected, losing a child to cancer is different than losing a child through an accident. Certainly this mom and I have commonalities, but she lost me when she said.... at least I had 14 months to prepare for his death. I get her point, but it was 14 months of hell, a hell I have tried to accurately describe on this blog. But words do not always cut it.

I spent the majority of the day sorting through raffle items, organizing and itemizing them, and then buying last minute things to finish each raffle package. The final touch is wrapping each basket, and I am happy to say we are now at that stage! I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen writes to us each Tuesday in remembrance of Mattie. It is hard to believe today marks the 86th week of Mattie's passing. Kristen wrote, "Things sound so exciting for the walk this year! I love the logo! You are creating such a wonderful event for a purpose that is close to your heart. It will be a huge success! Thinking of you this Tuesday and everyday...safe travels home Peter."

Monday, May 2, 2011

Monday, May 2, 2011

Tonight's picture was taken in May of 2007. As you can see Mattie was on our deck playing inside his sandbox. However, with Mattie playing was always creative. He got out a fishing pole and was pretending that all his sand toys were fish. He was trying to catch each toy and actually had some success in the process. With Mattie you always had to think outside the box, the conventional way of doing things would never do! He brought a certain life and energy into everything he did. We greatly miss the spark he added to our lives.

Quote of the day: Mourning is love with no place to go. ~ unknown author

For the past several mornings, Patches, our cat, has decided to wake me up at 4am. Considering I am not feeling well and need rest, I find her awakenings highly disruptive and very unsettling. She is truly going to appreciate Peter's return on Saturday. He has a way of controlling her behavior, I wish he would tell me his secret!

Peter is holding his own in Kenya, but being on very different time zones for 2 weeks has been quite challenging. When I get up in the morning, he has already lived that day and is headed to bed. As I was going to bed last night, my lifetime friend, Karen, emailed me and told me to turn on the TV because she wanted me to know that bin Laden was dead. I almost couldn't process what she was saying, until I flipped on the news and saw the reports for myself. She and I emailed back and forth about the news for a bit, and we even awaited President Obama's address to the world. Karen and I live in two of the cities impacted greatly by September 11, 2001. Certainly this wasn't only a New York and Washington, DC tragedy, it was a loss of great proportion for our entire Country. We lost over 3000 people and families were permanently affected by this horror. But in addition to this, many of our freedoms were also lost on that day. If you doubt that, then you just have to reflect on the way air travel has changed since 9/11. Regardless of one's political viewpoints and stance, the news about bin Laden was a unifying factor, citizens were outside the White House last night chanting USA... USA.... USA, and the Country Music station I listen to, played patriotic music and songs ALL day today. The funny thing though is as I went to bed last night, Peter was waking up, and I shared the news about bin Laden with him. The power of the Internet!

Before running chores today, I met up with Ann, Mary (her mom), and Shayla (Mary's caregiver). Mary was having a morning out and getting her hair done. For the past several hair outings Mary has had, I have been with her, so some traditions I try to uphold. While she was getting her hair done, we all talked together, something that I know Mary loves. In the midst of talking, I looked at Mary, and she gave me a huge smile. With Mary's neurological disease, smiling is rather challenging. So when I see a smile, it always gets me to stop and pause.

This afternoon I was on a mission to visit the Lego store at the Tyson's Corner Mall. This was by far Mattie's FAVORITE store to visit. I was scheduled to meet Liz, the assistant store manager. Liz has been EXTREMELY instrumental in helping us with this year's Foundation Walk. She has helped to secure volunteers to run individual build tables at the walk, she found a Lego artist to design a 20,000 piece Lego brick Mosaic of our Foundation's Logo, and she also secured members for the train users group to set up Lego active train displays at the Walk. Liz met Mattie in August of 2009 (a month before he died). Linda, Mattie's childlife specialist, arranged for a private event for Mattie at the Lego store, and Liz helped to coordinate this evening. In essence this was the last wonderful thing Mattie did before he died, and that evening was very bittersweet. In addition, to Liz, there were two other wonderful Lego representatives there that night, Brandon and Jared. Both of these men are volunteering at this year's Foundation Walk. I actually find these Lego folks to be absolutely incredible, generous, and compassionate people! Around 15 Lego volunteers will be participating in our Walk and several of them donated to the Foundation many Lego systems to be included in our Walk raffle. I am truly in awe of their kindness, and I even met another store employee today, Bernadette, who is volunteering at the Walk. She knew ALL about Mattie. It is a special feeling when people who NEVER met Mattie know about him and talk about him. In a way, Mattie has a legacy in that Lego store!  

Sunday, May 1, 2011

Sunday, May 1, 2011

Tonight's picture was taken in May of 2007. Peter and I took Mattie to the Air Show at Andrews Air Force Base. Mattie had a great time that day exploring the different aircraft and actually touring inside some of the planes. We were all blown away by the Thunderbirds air show, though Mattie found the sounds and the crowds at times overwhelming. 

Quote of the day: The only courage that matters is the kind that gets you from one moment to the next. ~ Mignon McLaughlin


It is funny to think that I have known Peter for over 20 years, and despite the fact that we understand each other well, there are aspects about grieving in which we are not always communicating on the same plane. Since Peter is in Kenya, we landed up chatting back and forth through email today. He was expressing his concern for how I was feeling and wanted to understand which particular stressor has caused me to have another physical flair up. He listed a whole bunch of issues I am dealing with now and as he was listing them he realized that in total it was a lot to handle. The irony is in my response to him, I included more items to the list of stressors such as Mattie's birthday, Easter, Mother's Day, and the pending Foundation Walk. In fact, I would say April and May are challenging months. But my point is despite how well we know each other, I can't expect Peter to be a mind reader. He knew that Mattie's birthday and Easter were challenging, but maybe not to the full extent. No fault of his own, I just haven't spoken to him about them. Naturally if someone doesn't verbalize a concern, we assume that it isn't a problem. However, for me that isn't always the case. Sometimes with things that are most difficult or stressful, I avoid talking about them altogether. Nonetheless, I am certainly thinking about them.

In one of our many email exchanges today, Peter shared with me a story about a katydid. Peter wrote, "I had a nice breakfast outside on the 1st floor (which is the equivalent of the 2nd floor in the US) on a covered balcony overlooking the pool. I read the paper, listened to birds, and there was a massive kadydid that suddenly sprung to the floor right near my table. This thing was over three inches long and was the largest I have ever seen by far. Once landed, it positioned itself so it was staring at me. I of course, thought of you know who, as there were no other bugs of any kind that appeared before or after this kadydid. It sat with me for about an hour, just staring at me, repositioning, and was fearless. All the waitstaff who came by never disturbed it. The same kind of yellow bird that I saw in Rwanda, also came by and tried to grab it as a snack, and this kadydid turned and fought off the bird for about three minutes. The bird finally gave up and left, and the kadydid returned to its focus on me. So, I'm re-reading this description and thinking that some people might read this and think I've completely lost it. So take the story for what it is worth, but it was an unusual encounter, and so I am open to these types of things, if not for the sheer uniqueness of it, but for also the hope that in some way it is a type of reconnection."



I spent the entire day at home and was glued to the computer. I was working on the hospital script that I have been telling you about. I will be delivering this script in front of hundreds of doctors on May 20 at the Georgetown University Hospital. The purpose of parents speaking is to give doctors a first hand account for what it was like caring for a child with a major illness and the importance of including the entire family in the care and treatment process. This event is well organized and rehearsed and therefore they require parents (3 of us are presenting) to write and read from a script. The script must be preapproved however. The deadline to submit the script was last week, so I felt compelled to sit down today and write. After working for eight hours straight, I was able to submit my first draft. I am sure edits will be needed, but it is a good feeling to have something concrete down on paper. In addition to my presentation, Mattie's technology teacher, Mary, is helping me put a four minute video together of Mattie. I want the doctors to have a chance to see pictures of Mattie and understand the consequences of his death. Sometimes the best way to have an emotional impact on others is to literally show pictures timed to music. The music I selected was actually given to me, after Mattie died, by Mattie's preschool director's daughter. The song is entitled, I'll Remember You, and though it wasn't a song the public would know, it is a very moving and heartfelt song, that when timed to the pictures makes a visual statement. I am so thankful for Mary's expertise and help, because I think messages are move powerful when you can use both words and pictures!