Saturday, December 22, 2012

I Can't Accept Pain

Over the past year I feel like I've done so well accepting CP. Accepting that it is part of our family - that Asher and Nolan were always meant to have CP, and always meant to be my sons.

But accepting, at least in the limited sense that I have (I think there is a whole lot more acceptance to strive for), doesn't mean I don't still get sad about it. Sad, and angry.

Some part of CP will never be accepted and will always make me angry. Pain for instance. Pain caused by CP has no place in our lives. Emotional pain, ok, that one is probably here to stay (for me at least). But physical pain? Hell no, that is unacceptable.

Earlier tonight, Asher woke up crying and when I went in to comfort him, he wasn't himself. I could just tell he was off. I looked him over carefully and while he was responsive, the tiniest part of me was paranoid he was having a seizure*. He wasn't, but I felt unsettled. I got him calmed down and left him, hoping he just had a bad dream.

A few minutes later he was crying again, but this time he meant it. It wasn't his standard "I don't want to go to sleep" cry, it was a devastating "something is wrong with me" cry.

I calmed him down and asked him if anything hurt. He said yes. I asked him where and he didn't answer. I then told him to show me, and he started patting his thigh. That made no sense to me so I started going through body parts one at a time, starting with his ears and his throat (assuming he was getting sicker again). No, no, no, no, to all of the body parts I asked, until I got to his legs. Yes, and yes. Apparently I should have given him more credit when he was trying to show me by patting himself.

To be sure, I went back up north. Ears? No. Tummy? No. Legs? Yes. A big sad nod.

Oh my goodness, he was really in pain. And judging by his cry - a lot of pain.

My heart shattered into a million pieces. Spasticity is not something Asher ever deals with. His muscles have low tone, not high. He isn't ever tight "just because" - it's only when he's over exerting himself and even then, he is completely loose again when he's finished whatever task he's been attempting.

So I was at a bit of a loss with what to do. I rubbed his legs, put some heat on them, and gave him some Tylenol. Thankfully he calmed down quite quickly once I started massaging him, and eventually I left him sleeping more or less soundly, but could tell he's nowhere near relaxed.

I fear it may be a long night, especially because I don't know what's causing this. Is he getting sicker again? (he had bad muscle spasms when he was sick last time, but they didn't seem to hurt him). Is he having growth spurts and this is a somewhat "normal" side effect? Or is this just a new part of CP that is going to continue to plague him?

Pffft. It's Christmas. I don't really want to be thinking about my baby in pain. So I won't, and hope we get some sleep tonight.

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*No he's never had a seizure. I'm just paranoid.

3 comments:

  1. Tracey, when Coop was three he started using a walker and that's when he started waking every night with sore legs. We spoke to Paed and ended up giving him diazepam ( Valium) after trying everything else for two years. I hated using it, but it worked. We used it for a week. My daughter at four ( neuro typical) wakes up maybe three times a week with " growing pains" too as did I when I was her age. Cooper also has athetoid cp so minimal spasticity. Heat packs help as does massage xx take care x

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    1. Yes, I am thinking we are going to ask about some sort of medication, just for when this happens. I was wondering if it "could" just be growing pains, made worse by the CP? I'm sorry to hear Cooper went through this too. xx

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