Wednesday, October 5, 2016

Cerebral Palsy - We are Here

Today is World Cerebral Palsy Day and the theme is "I am Here for Cerebral Palsy."
On this day to raise awareness I thought I would try to give a picture, put a pin in the map of where we are.
This, I'm sure, will sound odd to others, but sometimes I forget Brett has CP. It doesn't define him, but it is a big part of who he is. It makes him unique in the way he moves, holds his body and communicates. But, we have lived with this since he was born 8 years ago and it's just part of who he is. I find myself sometimes in public thinking 'what are they looking at?' or seeing the reaction from a stranger when he screeches with joy and It takes me a minute to remember that most people are unfamiliar with Brett or CP. Part of that is because we have such a loving and accepting community around us. Brett attends his neighborhood school just like his brothers. We have slowly integrated him into a regular education class and he spends a good part of his day there in third grade. Most of the children have known him since kindergarten and he's just one of the boys. He attends his brothers sporting events and participates in community activities and the parents know him and our neighbors know him and our church family knows him. So, I forget.
But, if I'm being honest there are times when being here with Cerebral Palsy infuriates me. It rips my soul into pieces when there are obstacles to overcome and it exhausts me to fight for basics like education and insurance coverage for necessities like food. Because Brett is a triplet, I think some of it is amplified. When his brothers went on their first sleepover at a friends house Brett was invited too. He stayed most of the time, but then, I needed to take him home. Brett occasionally has stomach and reflux spasms that cause dramatic issues in the morning, he needs medicines administered at night and help using the bathroom first thing in the morning. We did our best and Brett was probably more OK with it than me, but it falls into that "life isn't always fair" category and it aches my heart in a way I can barely explain. Here is CP.
Brett has grown a LOT in the last year. At more than 42 pounds he is getting difficult to carry. The growth is a blessing in that it has given him strength, but it also means the day is coming when I may not be able to lift him on my own, without help. Here is CP.
As Brett grows so does his spasticity - he has spastic quad CP, which means he has uncontrollable spastic movement in all four quadrants of his body. He is on the maximum medication to control it and it makes him spacey. Due to other issues related to his CP he doesn't qualify for a surgery that has been life changing in removing spastic movements to many with CP. It leaves us with one option and it involves placing a pump in his body to deliver the medicine directly to the areas that need the help without the neurological effects like spaciness. But it's surgery and it's a foreign object in his body with a load of complications that make me cry every time I read them. It requires more doctor visits for refills and monitoring. As I told the doctors who, as a second opinion, evaluated Brett last year and made the recommendation for the pump - It's not good enough. Go back to your people - your doctors, your researchers, your medical inventors and tell them this will not do! Here is CP.
Brett has four therapies a week and a list of 5 specialists he sees on a regular basis. Here is CP.
We are blessed that Brett is patient and easy going and very accepting of his diagnosis while still working endlessly hard to do the things he sees all of us do with ease every day - sitting up, walking, eating, speaking. He works hard and with humor but nothing comes easy. Here is CP.
So where am I on this World Cerebral Palsy Day? Where is his family? Where is Brett?
We are here fighting. We are here saying 'not good enough'. We are here despite all the obstacles and challenges living a "normal," happy and blessed life.
We are here sandwiched somewhere between acceptance and aggravation.
Sometimes we are here smiling and forgetting and enjoying and sometimes we are here kicking and screaming and crying and angry. But we will not give up until the world right outside our door and across the world is better for Brett and others living with this diagnosis. All is not well with our circumstances, but it is well with my soul. Whether we like it or not - We are Here with and for Cerebral Palsy.

No comments:

Post a Comment