Tonight's picture was taken in June of 2002. Mattie was two months old and VERY ON! Here's the funny part about Mattie! I remember when he was a baby, I called the pediatrician in a panic. It sounded like Mattie was having a hard time breathing. He was making a very strange noise and he continued to do it repeatedly! The doctor was great on the phone and we walked through all the medical emergency signs to look for.... of which Mattie had none! After several minutes on the phone with the doctor, want to know what we concluded? Bottom line....Mattie was laughing! Even as a baby, he probably thought it was a riot seeing me running around in a panic..... so we learned quickly that Mattie had a major sense of humor.
Quote of the day: Each problem that I solved became a rule, which served afterward to solve other problems. ~ Rene Descartes
For the last several years, I have been a part of a collaborative research team with two other non-profits and scientific researchers. Our mission is to implement the Psychosocial Standards of Care at hospitals around the country. There would be NO Standards of Care if Mattie Miracle did not existed! That may sound bold, but it is the reality! Sometimes it takes people who have suffered through the lived experience to evoke change in the healthcare system. In any case the Standards are designed to provide optimal psychological and social support to all children with cancer and their families throughout their cancer journey. Why were Standards needed? Because there is a standard of medical care for all forms of childhood cancer. Whether you are treated in California to New York, the medical protocols are the SAME. But the emotional and social support families have access to are ALL OVER THE MAP! They vary greatly by hospital, and it depends on what kind of private philanthropy a hospital has to financially support such supportive care services. Mattie Miracle wanted to see this CHANGED!
To me the Standards are Mattie's legacy, they are what was born out of his pain, suffering and death. However, I did not do this advocacy work alone. I did it with my other half for over a decade. Therefore, any time I reflect on the Standards, it is impossible not to also reflect on our long history together and the beauty of what our union created.... Mattie and the Standards of Care.
Yesterday, I learned that one of our research proposals was accepted at a major international conference. The research team reached out to me and really wanted me to present at this conference with them! I can't tell you what a shot through the heart this was for me. Not because of their ask, that was lovely, but because my life has changed so dramatically. I do not have the freedom to go anywhere or do anything because of my caregiving, but that is only half of the trauma. The other half of the trauma is knowing that I carry the advocacy of the Standards alone, that my side kick and conference mate, is gone. I am not sure I will ever get over this intense pain, this loss, or the hollowness it leaves inside of me.
Meanwhile for weeks, I have been working on Mattie Miracle's 17th Anniversary Video. I create one every June. To me it is a labor of love, which is getting harder and harder to do because of all I juggle behind the scenes. Nonetheless, here is it. When I wonder..... what have I been doing for the last 17 years (of which I never earned a $1)? The video is my answer! Since Mattie's death, I have devoted my time, skills, and talents to the cause!
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