Is he breathing? Kind of...check.
Is he choking? Not anymore after suctioning his throat and nose...check.
Is his feeding tube irritating his skin? Yes it's red and inflamed. Lidocaine applied...check.
Has he gotten his scheduled medications? Yes, next one is in an hour...check.
What is his temperature? 100.4...hmmm, something is up.
I go through this check list OVER and OVER about ten times a day, if not more.
IT. IS.EXHAUSTING.
I think the whole "disconnecting" thing is a defense mechanism of sorts for my emotional stability. If I didn't do it, I would be crying all the time. Crying out in anger and guilt that my sweet, little boy has to go through so much. Sad over the fact that he can't enjoy a visit to the Children's Museum or a ride in his stroller. I just don't get WHY he has to suffer through it all.
With a special needs child, I have heard that the first year is the hardest. Hard because you don't know quite what you're dealing with, at first, and hard because of the unpredictability of their day-to-day as well as their future altogether.
I decided to approach my PCH (Pontocerebellar Hypoplasia) Facebook group about this and ask the question, "So I need some honest answers here...what was your first year like with your PCH child? Does it get better? Furthermore, does the CHILD get easier to take care of or do you feel that YOU were able to deal with things better?"
Here were some of their responses:
1) "It was AWFUL. So bad I have blocked most of it from my memory. I couldn't drive anywhere. She cried ALL the time. She wasn't social. It sucked. She got much easier. She is happy all the time now. Only cries when she's sick. She smiles and laughs and had a personality. It will get better. Just hang in there."
2) "Yes the first 2 years were tough, heck, they were horrible, he cried, all the time, no matter what we did...once we got things figured out, and got him on the right meds, it did get better...he wasn't as sick as much, probably we were able to deal with things a bit better as well. just recently things have gotten tough again. He is a lot better now, he smiles and gabs our ear off. shows us when something is bothering him with facial expressions...THINGS WILL GET BETTER!!!!
3) "The first year was unbearable! I think I said "I quit" every night. He would cry 24/7 & we had sooo many issues. The 2nd year has had challenging periods but is a bit better (or maybe we are just getting used to things). It wasn't until a few months ago that I actually felt comfortable to leave him with a sitter because I wasn't afraid he would scare them away!"
4) "It gets much better and much easier. i can hardly remember the 1st year i think. lack of sleep and anxiety/grief/anger. but we settled in with our son, changed our expectations, went to therapy (it really helps!), did some soul searching and realized that all the negative makes those small bits of positive SO WORTH IT. now we do things we never imagined we would do! hang in there!!!"
After reading these responses and many more, I breathed a HUGE sigh of relief. THINGS WILL GET BETTER. They just have to...that's all there is to it!
