I guess I need to find a way to accept this. Atti has now officially been diagnosed with Cerebral Palsy.
We knew he was at risk since before he even left the hospital. Sometime before he was full term he didn’t get enough oxygen to his brain, and spots of damage were formed. It could have been because he was so tiny that his body was just incapable of getting the air where it needed to go, it could have been one of the five times that he pulled the respirator out of his throat, we’ll just never know.
At the time the doctors told us that they expected it to be mild and that he would most likely be able to retain function. We had another visit with his Neonatologist on Wednesday and she said that it was now officially CP and no longer just your garden variety preemie delay, and that it seemed to be manifesting more severely than previously thought. Her best guess now, based on statistics, is that he may eventually walk, but probably only around the house. He’ll probably need a wheelchair. He may have trouble eating and speaking, drooling, using the bathroom. There’s just no denying it anymore. My sweet miracle baby is going to spend his life fighting this disability.
I am very much of two minds about this.
Part of me knows with a deep conviction that he will be able to surprise all the doctors. This is my kid. He is stubborn, he is willful, and he is not going to be content to not do something he wants to do. This is the same kid that set hospital records by ripping his respirator tube out five times before he was even old enough to have hand eye coordination. This is the kid that allegedly has limited fine motor skills, until he wants to get that eye patch off. This is the kid that will do anything it takes to make music come from whatever is in front of him. I cannot imagine that this boy will be content with doctors expectations and not drag himself towards more by sheer force of will.
The other part of me is paralyzed with fear. But more for myself than for him. Motherhood is demanding at the best of times. I was just starting to feel like I was figuring this out, even with therapy every single day, even with his dependence, I was getting a routine down. But now. Oh dear.
Suddenly this requires even more of me than before. And I’m realizing that all the plans I had for myself, all my own dreams and goals, are now going to have to go away. We’re going to have to double up on Atti’s already extensive therapy, and now instead of having everyone come to me, I’m going to have to take him all over the county to his appointments. All of the therapists I’ve grown to love so much are going to move on to other cases and I’m going to have to start over with a whole new crowd. This all just got a whole lot more serious.
No parent wants to see their child limited. Even in the best case, if he does manage to walk and talk, there are still doors that are now firmly closed to him. He’ll never join the military (Whew!) He’ll never be an athlete or fly a plane like his dad. But we’re realizing that every parent eventually has to come to terms with their child’s limitations. Every child has talents and inclinations, and limitations of their own, and every parent has to eventually accept that their baby is not going to live the life they had scripted for them.
I see it all the time in my work with the teenagers at church. In the teenage years kids begin to choose their own path and it is so hard for parents to sit back and watch. To watch as little Johnny shows no interest in whatever life his parents wanted for him and decides to pursue fillintheblank. Maybe the parent had dreams of Harvard and the child does not enjoy school. Maybe the parent wanted a professional basketball player and the child tops out at 5’3″. It happens to everyone. And they all have to accept it.
We’re just having to accept it a whole lot sooner than most people.
Now if you’ll excuse me, I’m going to go crawl back into my nest of blankets on the couch and resume my deep deep depression.