Saturday, September 8, 2012 -- The third anniversary of Mattie's deathTonight's picture was taken in June of 2008, a month before Mattie was diagnosed with cancer. We were absolutely clueless back then, because Mattie appeared to be the picture of health! As you can see here, Mattie was posing with his "girlfriend" Charlotte at one of the canals in Georgetown. That particular day, Ellen (Charlotte's mom) invited Mattie and I to go with them on a canal boat to ride through the locks of Georgetown. Mattie and Charlotte had just completed a year of school together and to some extent I think the children were used to seeing each other on a regular basis, so the summer was a hard transition for them. Mattie and Charlotte became friends on the first day of kindergarten, they were just drawn to each other. From my perspective, Mattie and Charlotte brought out the best in each other, and it is rare to find such a special friend. One thing Mattie could do was make Charlotte laugh. I can still hear Charlotte's laughter in my head, it is the kind of laughter that makes you want to just laugh yourself. In the summer of 2008, Mattie and Charlotte also enrolled in a tennis camp together. It was in that camp, that I learned about Mattie's arm pain. In fact, if we didn't identify Mattie's cancer in July of 2008, then I am quite sure by the time the issue did present itself it would have been too late to even treat it. Mattie's cancer was aggressive and fast moving, and thanks to this tennis camp, I feel it identified the arm issue sooner and enabled us to have 15 more months with Mattie.
Quote of the day: Parting is all we know of heaven and all we need of hell. ~ Emily Dickinson
Peter and I want to thank so many of you for reaching out to us today. We appreciate the Foundation contributions, emails, cards, photos, and text messages. I think the hardest thing about going through such a loss is feeling like you are going through it alone. We know we are different, each day reminds us of this, but milestone days are definitely worse. Nonetheless, I have to say that you would be amazed by the impact an email or text message has on us! Even the simplest of messages are the greatest of gifts. It is the silence that is truly painful and troubling.
On tonight's blog, I posted a link to a video entitled (at the end of tonight's posting), "Why B Normal?" This video was sent to me by someone I love and hold dear, one of Mattie's art therapists, Jenny. It is my hope that after reading my words tonight, you will consider watching the video. The video is about 7 minutes long. The first 3.5 minutes are fine, but it is after that point, that her words resonated with me. The speech is given by a mom who lost a 12 year son in a car accident. The premise of the video hits home for all of us, because she discusses how as children we all aim to be SPECIAL. We want to make a mark on the world, yet when dreaming of her future, she never imagined that what would make her stand out from others is being the mom of a "dead child." She describes the world now as foreign to her, and that she feels like an alien. What she is expressing is not news to me, instead I can relate to her feelings wholeheartedly, and unfortunately these feelings of being different will remain with us for the rest of our lives. Talking about these feelings is normal, having them linger is normal, and trying to process them and find a way to live with them are also normal. What isn't normal is when someone wants these feelings to disappear for me, to deny that this is my reality, and worse to not want to hear about them!
Last night, Peter and I went out to dinner with the moderator of the palliative care panel that we have served on, as well as with another couple who lost their 5 month old daughter five years ago. Not to cancer, but to a genetic disease. When this mom heard that today was Mattie's 3rd anniversary, she was absolutely stunned that we were functioning enough to go out to dinner last night. She said she wouldn't have been, and she and her husband told me that they have appreciated listening to me at the palliative care panels. Because they knew their daughter for 5 months and her loss is excruciating to them, but they couldn't imagine what it would be like to lose a child like Mattie who was seven years old. A child who was healthy for so long and whom they had a relationship with. In fact, this couple said to me that when they hugged me after the first palliative care panel, they literally could feel my pain through the hug. I thought that was a very telling statement.
Earlier this week, I went to Target, one of Mattie's favorite stores, to buy hotwheel cars. I then wrapped plastic like wire around each car, so that we could hang them on Mattie's tree today. Mattie LOVED hotwheels and matchbox cars. He had HUNDREDS of them! So I felt it was fitting that his passion for cars be incorporated onto his oak tree. 
Today was an incredibly powerful weather day. Since Peter alerted me to the storm that was coming our way, we decided to visit Mattie's tree earlier in the afternoon. Mattie's school class planted a red oak tree on the lower school campus in 2010 in his memory. Since Mattie's ashes sit in my living room, the tree is the only memorial site we really have to visit. When this tree was first planted it was about my height. Now the tree stands at about 14 or 15 feet tall. It is an incredible tree, because in the fall and winter its leaves dry up and turn red, but the tree NEVER sheds its leaves. It is never barren. Frankly it is amazing, that these dried leaves just seem to disappear in the spring, and new leaves begin to unfurl. 
Mattie's tree is filled with all sorts of things such as: an acorn bird feeder from my in-laws (in which nut hatches are housed!), a beautiful wind chime, origami cranes created by Junko and her mom, fuzzy bugs of all kinds from my friend Tina, a beautiful red butterfly from our friend Erica, cello-wrap butterflies that I made for Mattie's 10th birthday, red pine cone Christmas ornaments, and now toy cars. Can you see the red and purple ones blowing in the wind here?
In this picture, you can see my cello-wrap butterflies, the acorn shaped bird house, and today's addition, CARS!
In the midst of activities we did today, Peter could tell I was edgy, snappy, and having my moments. Which is why I suggested we go back out and walk Roosevelt Island. However, that wasn't meant to be. Why? Because we got rained out, with 70mph winds. We literally sat in the car amazed at what we were seeing. To me it was a sign that even the heavens were crying over our loss.
Being that today marks the third anniversary of Mattie's death, I can assure you that Mattie's death will always be fresh in Peter's head and within mine. For five hours (2am to 7:15am), Mattie fought death on Septembr 8, 2009. He was agonizing to breathe, and the amount of pain medications he was on was probably over the legal limit for a child. I did not report this fact at the time on the blog, but from my perspective Mattie's nurses and physician made very ethical and humane decisions. In fact, Mattie did not want to die, and it was only after Dr. Shad had propofol administered to Mattie, did his body shut down after an hour. Dr. Shad told me that in her 25 year career, she has only had to use propofol one other time to assist in the death of a child. To me this speaks to Mattie's strength, fight, and courage to want to live. If you would like to read my posting from September 8, 2009, please go to: http://mattiebear.blogspot.com/2009/09/mattie-lost-fight-today.html
I end tonight's posting with four messages. The first message is a reflection from my mom. The second message, our family considers a very special gift from Charlotte. Charlotte wasn't prompted to do this, which is what makes her actions and feelings probably one of the greatest gifts I could receive today. The third message is from Kristen, Mattie's oncologist, and the final message is from Cathy. Cathy is a mom of a child who is actively fighting cancer at Georgetown. In fact, Bridget (Cathy's daughter) and Mattie were fighting cancer at the same time, which is how I got to know this very special family.
--------------------------------------------------------------------
The Miracle of Mattie -- by Virginia R. Sardi
The miracle of Mattie will never die though he is no longer with us. His energy and spirit continue to live on in the minds and hearts of those who were lucky enough to be touched by his presence. If you knew him, and can remember his healthy, toddler days when his creative, zany and zestful joy of life was fresh and spontaneous, you witnessed poetry in motion and a boy who lived life to the fullest appreciating every moment allotted to him. Though too brief, his life and the way he lived it are to be remembered with awe and reverence because he never gave up on himself, though the odds were powerfully against him, and became a symbol of courage and wisdom beyond his years showing others the way to use the finite time allotted to them on this earth to make the world a safer and better world for children like him who were to be denied the future most of us take for granted. This is a remarkable legacy for a boy who died at age seven whose friends still think of him three years afterwards and whose name and story fill many a heart with compassion and regret for what might have been if fate had not intervened and called him home before his time. We will never be consoled those of us closest to him and will never understand why he had to be taken from us. His memory, laughter and smile are never far from our hearts. We hear him in the wind, see his face in the moon and feel the incandescence of his spirit in the beautiful stars that appear in the sky. Our love lives forever and inside every chamber of our hearts, you will find Mattie, never to be forgotten, in his own special place on this earth!
-------------------------------------------------------------------
-------------------------------------------------------------------
Ellen (Charlotte's mom) wrote, "I wanted to let you and Peter know about a very special thing Charlotte did
today. As she is starting 5th grade, one of her first assignments is to decorate
her journal with pictures that describe her and symbolize her. Charlotte worked
hard at finding 10 photos that describe who she is. She was determined to have
photos of books, a piano, soccer and the beach - as those are her favorite
activities. Then she was searching for the perfect picture of her and Shannon (Charlotte's sister),
and her with Tyler (Charlotte's brother). She also planned to use a photo of Nelson (Charlotte's dog) and J.K. Rowling
(her favorite author). As she was completing the project, she was busy on her
laptop looking through photos. When I asked her if she was finished yet, she
told me that she would be finished when she found a picture of her and Mattie.
She was searching for that photo (the one that is also on her bulletin board by
her bed) of her and Mattie in Georgetown. They are so relaxed and happy, about
to embark on the Canal boat trip that we shared on that June morning after
kindergarten finished. I am so happy that Mattie is still in the
forefront of her thoughts. He will be there with her, smiling on the front of
her journal as she embarks on her journey of 5th grade. Our family is
very thankful to have known Mattie. He will always be in our hearts."
Kristen (Mattie's oncologist) wrote, "At 7:15 in the morning on September 8, 2009, I sat in the airport in
Detroit, waiting for our flight to take us back to DC. I felt drawn to call the
PICU at Georgetown and to talk to Mattie's nurse. When I reached the PICU I
learned that Mattie's nurse was with him and she couldn't come to the phone,
that he had just passed away. There are moments in my life that I will never forget. Moments that I think
of and I am brought back in time. That moment, in the airport at 7:15 on
September 8, 2009, is one of them. It will forever be etched in my heart.
I will never know your pain. But I grieve with you. Today...three years
later. Thinking of you both especially today and always."
Cathy (a fellow mom fighting childhood cancer) wrote, "I know that every day is difficult for you but I can only guess how much more
difficult it must be on days like this anniversary. You are in my thoughts
often, not just for the terrible loss you have suffered but also for the
tremendous compassion you have shown us and other parents who must watch their
children deal with this awful disease. Both of you have a grace and empathy that
shine through, even though you hurt inside you do your best to put others at
ease and listen to their complaints. Mattie must be very proud of his parents!"
No comments:
Post a Comment