I feel like I've just been punched in the gut and can't catch my breath.
Although I've wondered it for quite some time, it wasn't until today that my fears were confirmed. It wasn't until today that I learned there is a solid explanation why my son isn't like the other kids with his diagnoses.
There's a reason the other kids with Sheldon-Hall syndrome are able to walk, while Corban can't even hope to sit on his own. There's a reason the other children with arthrogryposis multiplex congenita are able to find a way to get around (however limited it may be), while Corban is stuck in his chair with no mobility whatsoever. There's a reason the other kids with craniosynostosis are able to communicate with their parents just fine, while Corban has no way of communicating with us, other than laughing or crying. The reason these children are not like Corban and Corban is not like them, is that Corban has Cerebral Palsy.
My little boy, who could have been cognitively normal, is now getting ready to face his 5th birthday without a single word in his vocabulary. When he's ill and doesn't feel like eating, Corban can't tell us to stop pumping his sick belly full of food (via g-tube). When he's hungry again, he can't tell us. When his head hurts, he can't tell us. When he is lonely or scared, he can't tell us. There is soooo much that he can't tell us, and there's even more that we can't tell him - all because his brain was irrevocably damaged.
I've cried more today than I have in a long time. The thought of what could have been and the realization of what is, haunts me. I feel angry. I feel guilty. I feel deflated. I feel confused.
Why me? Why Corban? Why us? Do we really we need one more thing? Is the list of diagnoses not long enough as it is?
Could we have prevented it? That is my biggest question. I'm not 100% sure, but I think his brain injury may have happened the day we almost lost him. What could we have done differently? Did we do everything we could for him? The questions will probably always plague me. The ramifications most certainly will.