Today its two weeks since we got the Petrie casts on. And on one hand I am ecstatic about it.
On the other hand, it is starting not to matter that the casts are coming off soon, if there were only 4 weeks left it would be amazing. Because he is graduating from a cast to a brace. And that brace looks exactly the same as the cast, limits his activity the same way that the cast does, and although he can take it off to shower- he is supposed to be wearing it at least 20 hours a day.
So most of my posts will hopefully be upbeat and practical. But this one will now. I am not feeling any of those things right now. I am feeling overwhelmed and crabby. Which I think Nochy is too. He came home from school last night and cried about every little thing. The saddest thing he cried about was about being up on his crutches. He likes standing up and walking around, which is great and builds a lot of strength. But he can't be on those things by himself, he needs someone constantly behind him in case he falls, because he has no ability to catch himself and he will fall hard. I read another blog where the kid fell and shattered the other hip and needed added surgeries. Long story short, he can't walk around without a spotter.
But he doesn't want a spotter, he wants to be independent.
And I truthfully don't have time and/or don't want to just be following him around all day. I need to be in the kitchen at some points, or feeding the baby, or going to the bathroom, and I can't leave him alone if he's upright.
So this caused a lot of crying on his part, and a lot of chocolate eating and self pity on mine.
And yes, I know, one day at a time, but if he is supposed to be in this brace for 6 months to a year- this kind of life is not going away anytime soon. This schlepping in and out of the car, this wheelchair, this being spotted while standing, this sleeping in the den, this dropping him off and picking him up every day from school.
I think one of the hardest parts to me right now is that I'm the only one who can drive him and who knows how to get him in and out of the car. That feels like a lot of weight and responsibility on me. That affects my work, and truthfully my sanity. And what do I do with all my carpools? Dissolve them? Just drive the kids all the time anyway since why not, I'm in my car driving in that direction might as well just do everyone a kindness?
I'm feeling pretty stuck. Then I'm mad at myself, parents deal with much more than this every day and they get through it. Special needs kids parents are probably laughing at me right now, "Welcome to my life buddy". So I'm ashamed at my claustrophobia about this whole thing. But it's the truth about what I'm feeling right now.
This is a long haul journey and it kinda stinks- I'm just exhausted from everything, and feel like theres no end in sight though I know that's not true either.
I'll be better tomorrow, but if this blog is going to be helpful to me and to anyone else whos going through it- its gotta be real as well I guess.
Bah Humbug
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