Not the Enemy I Thought it Was?

    The title of this blog comes from the phrase "not the enemy I thought it was". I found this phrase as I wrote out some feelings about Leo's brain damage a couple of years ago. I was so angry at God for so long. And I remember finding the place where I wasn't mad anymore. I genuinely wouldn't change what happened to Leo if I could. I said something like, "Leo's brain damage isn't the enemy that I thought it was." I thought it robbed me of: communicating with my son, joy, fruitful and fulfilling life, physical accomplishments, freedom, among other things. And I have realized over the years that Leo's body was designed by God and through his life--the physical, mental, spiritual, and emotional parts of him--I learn about God in ways that I wouldn't if he was "normal".

    With that being said, these days I'm going through a period of feeling like cerebral palsy, in particular, is an enemy that we will always be fighting with. 

    Let me explain. 

    We had an appointment about a month ago now where Leo was prescribed Botox injections for one muscle group. That is supposed to help those muscles relax. He still has good range of motion in the rest of his body, but this one muscle group is showing that they are getting tighter and tighter. This threatens to take away some of the mobility that he does have. And it's in his legs. I'm afraid that he won't be able to stand. Or what if his legs get pulled in by his own muscles and it's harder for him to sit in the equipment that we have now? I hate thinking that he may lose some of the little mobility that he has. I don't know if people realize from the outside how much more could be taken away from him. Because he can't do much for himself right now. But we work towards it. I want that for him. 

    I think another part of this is that this all feels so big and I'm afraid of making a "wrong" decision and it affecting his future so hugely. How to address his growing body, his growing muscles, his strength, his muscle tone, and spasticity are big things that I never wanted to have to think about. And I'm afraid. I'm just really afraid of cerebral palsy wreaking havoc on his muscles and causing them to pull every limb towards his trunk and take away any chance at assisted walking or getting around or even reaching for things himself. 

    And I don't see an end in sight. 

    He's always going to be getting older. I guess he won't always be growing. I just don't know how cerebral palsy plays out in muscles. I'm just describing feelings here right now. But it just feels like we are now on a course of fighting against his muscles. And I hate the feeling. 

    Alongside of this, I want to say--and remind myself--that Leo's life (and life in general) is not defined by physical ability. Our goals for Leo when it comes to therapy and medical interventions are

1) to protect the mobility that we can, and that he has

2) for him to be able to be as independent as possible

3) and to give him quality of life.

It's not to give him a body that is closest to typical development and abilities as possible. But I don't want to fight his body. I want to care for it. Pray for it. Give it to Jesus and adjust and adapt as things change. I'm putting the "positive" spin on things at the end of this. But I'm not trying to sugar coat something. Leo is still Leo no matter what his physical body does (you are still you no matter what your physical body does). But it's hard to watch his muscles work sometimes. Right now cerebral palsy kinda feels like the enemy.