I have always known that life is so much a matter of perspective, that “life is 10% what happens to you and 90% how you react to it.” I have never had this tested as much in my life as I have now.
As I was ready to post my blog last week about perspective, I was challenged with my own perspective. As I try to stay positive throughout this journey, I was struggling. A few months ago, my sister, Holly, met a guy who runs a rehabilitation facility in the LA area, the NAPA center (Neurological and Physical Abilitation center). Holly has been asking me to go and check out this facility. People come from all over the world to this facility for intensive treatment, both traditional and non-traditional therapies. I went last week with Peyton for an evaluation. Let me say, the NAPA center is an amazing facility and we are happy we found it. The people there were loving and accepting, completely understanding and comforting. Thank goodness, since the minute I opened my mouth to introduce myself, I started crying. Once again, (if you have read my previous posts) I was overwhelmed and shocked by my emotions. In that moment, I felt as if, out of the blue, someone ran up to me, shoved me to the ground, smacked me in the face, kicking me as hard as they could while yelling, “Your daughter still has PWS!” You would think I would be used to it by now, explaining our situation, being overwhelmed by my emotions, but no, I keep being taken by surprise, caught off guard. I know that I am not in denial about Peyton nor my emotions, it is just difficult at times because she is doing so well and when you look at her, it is hard to imagine that there is anything wrong with her. When I go to a new place and have to introduce myself and Peyton and tell our story, it just brings up all the emotion from the day we were told of Peyton’s diagnosis. After the evaluation and my experience, I was trying so hard to find the silver lining, to keep a positive perspective, but I couldn’t get out from under my hangover of emotion.
Today, I brought Peyton for her first therapy session. We have therapy 6 times a week at home, so we have chosen to use the NAPA center for some non-traditional therapies, most specifically CME or Cuevas Medek Exercise. This is a form of physical therapy that exposes a child to the influence of gravity. Peyton’s first session was painful for both her and I. She cried through the first session and subsequently, so did I. It was extremely challenging. We call Peyton the WBB, the World’s Best Baby because, quite simply, that is exactly what she is, the World’s Best Baby. She has the sweetest demeanor and she is just the most loving, easy-going baby. She does not cry a lot and when she does, she is easy to console. Today, was the most and the hardest she has every cried. About 35-40 minutes into our hour long session, I had enough. I knew this therapy was helping Peyton, but that was all we could handle for today. I left there feeling sad. I was sad that Peyton had to go through this, through therapy, through PWS. At the same time, I wanted to stay grateful for finding the NAPA center (Thanks Holls).
Tonight, I was holding Peyton, she was sitting on my lap and she was so aware of her body, holding her head so straight, using her arms to support herself, engaging her stomach muscles, and there it was…the silver lining. I couldnt’t help but say to her, “we are doing it, we are doing it, Peyton.”