Wednesday, March 22, 2017Tonight's picture was taken in April of 2002. Mattie was about ten days old. Despite how we were taught and told to wrap Mattie up (swaddle), Mattie absolutely hated it. He did not like to be restrained. As you can see his arms broke free from the wrapping and minutes later the feet would be out too! He was a precious sight and it is hard to imagine such a healthy looking baby could get cancer and die.
Quote of the day: The most critical time in any battle is not when I’m fatigued, it’s when I no longer care. ~ Craig D. Lounsbrough
Today was literally a catch up day for me and the Foundation. I was glued to the computer processing donations with acknowledgment letters for most of the day. Of course there were Sunny walks. Despite how I feel, there are always Sunny walks. I can tell when he needs to walk because he starts pacing around. It is down right impossible to concentrate when he is pacing! So we walk. I did see a doctor about my feet yesterday, only to learn that I have early stages of arthritis in my feet. Not what I wanted to hear, since I already have a very full plate of medical issues. Part of me wonders whether I have inflammation from all the walks I do with Sunny, or did the walking just speed up an inevitable process? I won't know, but I do know pain. Of which I have been having in my feet for over a week. We take our feet for granted until they aren't working well. But I do a lot of walking, and like to walk, so this is a very hard reality.
Meanwhile, Peter and I had a phone call today with the leadership of the Association of Pediatric Hematology/Oncology Nurses (APHON). We are no strangers to APHON, since they were the first professional association to endorse the Psychosocial Standards of Care and in the Fall of 2016, awarded Mattie Miracle with an achievement award. Now APHON would like to work with us on establishing Mattie Miracle evidence based psychosocial standards implementation research grants with their association. We are very excited about this opportunity, to work with APHON, and to support such implementation research. Because at the end of the day, Mattie Miracle is looking for data and supportive care models that advance the practice of the standards in order to help children with cancer and their families.
1 comment:
Vicki, The picture, you posted of Mattie is beautiful. I was never too keen on the swaddling as I felt strongly about the feeling of restraint, the baby must feel. Looking at this beautiful baby picture, makes me once again ask the question, why? I know there isn't an answer but it is hard not to think it when I am looking at a beautiful picture of a child who only a few years later suffers so much, then dies from the disease.
Mattie was a beautiful baby & child!
Your quotes leave me thinking always.! I have them all over my house but yours are so spot on often to my thoughts! I have more thoughts but will share later. I started this last night, fell asleep mid sentence. Now I have to get ready for a Drs. Appt. I feel so badly for your foot pain. Your life is so far from sedentary! Thinking of you!!!
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