Tonight's picture was taken in November of 2008. I do not typically post photos like this because they aren't pleasant to look at. However, this is the reality of osteosarcoma. Osteo, in my opinion, is a horrible cancer that can easily destroy the body, mind, and spirit. This was what Mattie looked like a day after his second limb salvaging surgery. Practically every part of Mattie was wrapped up and managing the pain was a true test. If the bandaging and pain weren't hard enough to see and experience, then add into this all the tubes, drains, and other IVs that were going in or out of Mattie. If we had any doubt of his super human strength, I think this photo sets things straight.
Quote of the day: Children see magic because they look for it. ~ Christopher Moore
This summer Dr. Shad at Georgetown University Hospital reached out to me and asked whether it would be okay for a couple who had just lost their only child to contact me. Since our first connection together, Ilona and I have become buddies in grief. Ilona and her husband Attila, established the Chris Lantos Foundation in honor of their 12 year old son who died from Leukemia in June. One of the things Chris loved was his iPad. It helped him manage the isolation and the stresses of coping with cancer. In Chris' memory, his parents raise money to give iPads to children battling cancer. In fact, in September through their Smoothiefest they raised over $10,000 to fund this electronic psychosocial support.
Mattie Miracle works behind the scenes to support the Chris Lantos Foundation and we were honored to be included today in the distribution of iPads to two children at Georgetown University Hospital. The first child we met is five year old, Lemar. Lemar's primary language is Farsi, yet by visiting the clinic, he is learning English. This fellow is precious. The BEST hugger!!! I got a hug today which I won't forget anytime soon. The last five year old who hugged me this way was my Mattie. So to me, the hug was my gift! Lemar was THRILLED to receive an iPad and felt very special being the center of all of our attention. That too was priceless to observe.
Occasionally on the blog I refer to the painted clinic ceiling tiles. Look at the ceiling in the photo above. These are the tiles I am referring to. Mattie painted several tiles in clinic: a rainbow tile with his friend Maya, a haunted house, a HUGE roach, and Scooby Doo (a tile Mattie created with Peter and I shortly after diagnosis). For me the ceiling holds many memories as does the space and the staff. The ironic part is I have lived most of my life OUTSIDE of a hospital setting. I only lived in a hospital for 15 months of my life (while Mattie underwent treatment), yet I suppose the level of intensity and the nature of why I was there makes that time period seem much longer. In many ways I feel more comfortable inside of Georgetown rather than outside the Hospital. It is within the walls of Georgetown that people saw my daily living conditions 24/7, they saw what Mattie endured, and walked that journey with us directly. I don't need to explain Mattie's battle to them and I don't have to explain my grief either. It is just understood!
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