Wednesday, October 7, 2015

World Cerebral Palsy Day 2015

 It has been about a month and a half since we saw the neurologist and received the CP diagnosis.  So this is my first "official" World CP Day as a CP mom.   I am still going through the pendulum of emotions that come from having the diagnosis.     In hindsight I see so many areas and activities where Fisher was compensating and adapting.  At times I feel angry and guilty that we didn't realize that sooner.  I noticed his differences but I thought since he technically met his milestones that those differences didn't matter.   I remember my nieces doing that adorable little "toddler squat" and making comments on how toddlers can drop so low and just hang out down there forever.  I remember looking forward to Fisher doing that because I thought it was so cute!  He never did it.  In hindsight I see how his balance has been a struggle all along and for whatever reason there are many positions he doesn't want to or can't get in to.  Willow adorably does the toddler squat now but I can't help but be sad that Fisher never did it- and not doing so was a red flag.   In hindsight there were several other similar things that we laughed off or just simply didn't realize meant anything. 

I also think about his future with CP.   Right now Fisher doesn't really understand his differences or compare himself to others very often.    As I mentioned above he is masterful at compensating for his weaknesses and has realized his limits all along and he intuitively avoids activities and situations where he isn't comfortable.  I love his innocence and I worry for the day that those limitations bother him.  I dread the day that kids make fun of him for what he can't do or for what he does differently.  It makes me sad to think about Willow learning to ride a bike before her older brother does.  Or when Willow wants to go backpacking with me and Fisher has the desire but not the ability.  I can't help but think through these scenarios and it breaks my heart.  I try really hard to not project my feelings, frustrations, and sadness on him but inside I think about these things often.  I remind myself that only Fisher can define what CP is to him and he gets to decide how he feels about it as he grows older.  If riding a bike is not something that is important to him then I am not going to project my feelings of sadness that we can't go ride bikes together on him.   I was looking at the World CP map the other day and he came up to me and asked me what I was doing. I explained that he was on the map and that he has Cerebral Palsy and that was the reason he goes to therapy so much.  I told him that the map shows people all over the world with CP.  He looked at the map and said "Wow, mom there are a lot of people like me".    It warmed my heart.

Later that evening Shawn and Fisher were watching TV and a commercial came on about a medication for Bipolar disorder.  Fisher told Shawn  "Hey - that is what I have!".  Shawn was confused and asked him what he meant. Fisher said that I had showed him a map of all the people with Bipolar like him.  We got a good laugh out of that and explained again to him that he has CP.   He doesn't realize it is World CP Day but I do and I too and thankful to see the map and know we are in great company.  So Happy World Cerebral Palsy Day!  The theme for the day is "We are here." Although I am out of town for work and not physically with my son today I am proud to support him and others like him on World CP Day.  We are here supporting, encouraging, and advocating for our son so that he gets to define what CP is to him.  We are here loving an amazing boy and our lives are so blessed by him.   We are here with our son and always will be!