Sunday, February 17, 2013Tonight's picture was taken in February of 2009. Featured in Mattie's hands was a pink frosted cupcake that I made him. In fact, between hospital stays, I would go home with Mattie and bake cupcakes for him. I would then put them in a Tupperware and transport them to the hospital. I used the cupcakes as incentives for him to do physical therapy. If Mattie accomplished a task Anna (Mattie's physical therapist) asked him to do, he would then earn a cupcake. So clearly what this photo illustrated was Mattie worked hard that day and the reward sat in his hands.
Quote of the day: My thoughts are free to go anywhere, but it’s surprising how often they head in your direction. ~ Unknown
I have been so conditioned the last couple of days to get up early, by 6am, that this morning, my eyes opened and I was ready to start working. Running the Foundation gives me a small taste and appreciation for those who run their own companies. I carry a lot of stress and pressure within me to make the Foundation successful, not only because this has become my full-time job but because Mattie Miracle is in essence about Mattie. Any failures I feel are a reflection upon myself and just like I wouldn't want to fail Mattie or let him down in any way, the same feeling translates down to the Foundation.
Therefore, at times I have a hard time stepping back and trying to relax and pace myself. Over the past year I have noticed when I get stressed out, a physical ailment seems to pop up. Now with the nerve issue I have in my arms and leg, I feel that this too is stress related. I tried to describe what this nerve issue feels like to Peter yesterday, and I used the analogy of lightning. When I feel any stress, it is as if it sends a surge of lightning radiating through my body and I can literally feel my insides shuttering as a result. Stress affects other aspects of my life as well.
When I was at the conference, I attended a poster session which assessed the effects of childhood cancer treatment on sleep. The researcher only looked at the change in sleep behavior in children, but I told her this study should be expanded to parents/caregivers, because in my opinion Mattie's battle and living within the hospital 24 by 7 impacted by ability to sleep and process information. Prior to Mattie getting cancer, I could fall asleep anywhere and at any time of day if I were tired. NOT any more. Now I have a hard time falling asleep and staying asleep and under times of stress, this behavior gets much worse. In addition, prior to Mattie's cancer I could multi-task. Meaning for example, I could read something, have the TV or radio on in the background, and even hold a conversation all at the same time. Again, NOT any more. In fact, in order to read material and truly process it, I must have complete silence, otherwise, I am just reading words with no comprehension. I have no explanation for these changes within me, other than cancer and grief. But here we are three years later and the side effects are still forever present, and more continue to be added to my repertoire.
Peter flew back to DC today, and I am happy to report that he is safely home and will be picking up Nurse Patches tomorrow. I await a full report on her status when he sees her.
No comments:
Post a Comment