Hardest part

I think the hardest part about Karsen having cp is the unknown. There is no scale for cp, no two kids are the same. Even if you had two kids with the same amount of brain damage in the same place they would still be completely different. When you throw infantile spasms into the mix it becomes even more complicated.

So, here we sit in the unknown. Not knowing when or if Karsen will talk. Not knowing if he'll get any function out of his affected hand. Not knowing if he'll have a slight limp or a severe limp. Not knowing if he will be main streamed in school. Not knowing if the seizures will return. Ugh. The first one and the last one are two of the hardest for me. Seizures are so scary and ugly. I hate them. I will always be on watch for them, and that's just life. All I can do is pray they don't return. Talking, I know I have blogged about it before and doing so now.  It's especially hard for me. I get sickly jealous of babies being able to sign or even say words to their mom. All I get is full blown tantrum or a happy face. When I'm talking tantrums, I'm not talking your average 19 month old tantrum, I'm talking pure frustration and anger that he can't tell me what he wants. He will back arch and fling his head back so it will hit the ground and kick his legs and hit whom ever or whatever is near by, and if I'm in grabbing distance he'll try to grab a handful of my hair and pull as hard as he can. In the midst of these fits you would think I would be getting mad, when in reality it just breaks my heart. Yes, I've got lots of broken hair from these and I really don't care. I just want him to be able to tell me yes or no, or say one word, or use sign language. It's just heart wrenching to see him so mad. 

Sign language. Well, I used it for Karter (my first), just the basics, and it was great. Karter also talked super early. By the time he was 19 months (Karsen's age now) he was starting to put sentences together. But sign language for Karsen has not been effective. I'm still having a hard time knowing if he understands my hand gestures or if he is understanding my words, one thing is for sure he can't do it back. And really, if he were to pick up sign language full time I would be the only one able to understand him since he doesn't have the use of one hand. Communicating with others just wouldn't happen. So, as you can see I am and will always be stuck in a state of unknown for Karsen. I guess I just need to figure out how to live in this state better. It's not going to change so I need to start changing the one thing I can, myself. 

I guess today may have been a harder day, emotionally, than I expected. The jealousy eats me up, seeing how effortless it is for a baby to get from sitting to pulling themselves up to standing, while Karsen is grunting, screaming, crying and struggling so hard to just make it up the 3 inch stairs, and inevitably he doesn't make it up on his own. He's been trying to pull himself up to standing for quite sometime, around 4 or 5 months, he still isn't close. Hearing another baby say "ba" and point to a ball , two things I would LOVE to have Karsen do, and yet they are coming from the mouth of a baby quite a bit younger than him. I would just love to catch a break. I feel like we are stuck in transition. Karsen isn't quite young enough to be in a "baby" group anymore but he's not really a "toddler". We are just stuck in this grey area and I just wish it would go by faster.

Boy am I having a lesson in patience. It's one thing that has never come easy for me and today I know I am not trusting in God. I am not letting him guide me. I'm trying to hard to have it go my way and not go His way. Wanting time to move faster so we can get over this rough spot. So, here I am. Giving it up, giving it to Him. There's no better way, but boy is it hard to do.