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Sunday, January 15, 2012

Tired out

The last few days, I've just been weary. I got a cold last month that just hung on and on, and somehow it seems to have drained my enthusiam and energy more than it's been in a while. Janey has been off and on---she had a tough week last week, lots of crying, she seems happier this week, but manic at times, lots of mischief and in need of constant vigilence. And although I've said it before, I'm feeling it in my bones lately. This will never end. Not ever. I am in my mid-40s, and I am never going to have a break. Never, ever, ever. I am not going to some day wake up with the energy to get the house totally organized, work harder at making money, go out and mingle and be sociable. It's never going to happen. What I have now is about how it's going to be. That's life with a disabled child. It's the reality of it.

And then of course I read this back and start editing it mentally, wanting to reassure myself and anyone reading this that it's not really that bad. I have school, which is wonderful. Janey loves afterschool, and I have a block of time during school days when I can rest, and should be able to get more done in. I have a supportive husband and older kids that help sometimes. Janey is healthy, she is often sweet, she usually sleeps fairly well. There are many people who have it tougher than I do. I know that. Sometimes it helps to remember that. Sometimes it doesn't. Sometimes I just wish Janey wasn't autistic. I wish she was learning to read, making friends, sassing me with pre-puberty early sassiness, developing her own interests, being all the ordinary and wonderful things that a "normal" 7 year old is. I wish I didn't have to still change diapers. I wish I didn't have to watch her every second to make sure she doesn't put small things in her mouth. I wish she talked in full sentences. I wish she didn't repeat video lines all day. I wish she didn't cry for reasons that are known to none for hours at times. I wish she didn't laugh at nothing all the time. I wish I could take her into the library or grocery store or post office without fear she will melt down and scream. I wish I could look forward some day to a wedding for her, to her children, to her going to college, to her even getting a real high school degree. I wish I didn't feel this tired all the time, from the constant strain of being the mother of a toddler in a 7 year old's body, and knowing that this is just how it is.

She is beautiful. She is sweet. She surprises me often with strange little quirky pockets of isolated knowledge. She is my joy. But I am so, so, so tired.

1 comment:

Unknown said...

If wishes were horses.......
If I had a million dollars I would send some your way for ongoing respite care, summer camp, babysitters etc. Money could buy almost anything except an end to your precious daughter's autism. You do have it harder than most people.
I tremendously admire your courage and stamina.
We do what we have to do.

With sincerity from a complete stranger.