A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Thursday, July 24, 2014

Growing Pains

J Bird is just about the age that Little Bird was at the first sign. Shortly after her six month check-up, I was referred to a neurologist who could only look and say yes, something was amiss. And so began the testing for brain lesions, metabolic disorders, and whatever else  would cause such low tone, etc. It was just low tone, right?- no biggie. So she wouldn't be an athlete. I could handle that.

I remember asking things like "Will she live with me forever? Will she go to college? Will she get married? Will she have a family of her own? Will she be normal?"
Seems crazy looking back and asking those things of someone back then. There was really no way to tell. So many factors up in the air: diagnosis, time, advances in medicine and therapies, opportunities granted to her, etc. I wanted to have some reassurance. I wanted the crystal ball. I wanted to know that everything was going to be okay.

I took her to see so many doctors. I'd ask the same things every time. 
"Will she live with me forever? Will she be normal?"

Of course now I still worry for her future. But I'm no longer wondering if she will get married and have her own family. I stopped asking if she'll ever be "normal." I know the answers. And that's okay. I don't wonder if she'll go to college. According to the director of special education in her school district, she's not eligible for a diploma, which she'd need for college entrance. Also, it's pretty clear that's just not something that's in the cards for her. And that's okay. 
Will she live with me forever? Probably. Of course, if that's not what she wants or if that's bit what's best for her, then we'll make other arrangements. Of course, most parents never think like this. Most parents don't worry about how they're going to support their child indefinitely.

At this point, I don't go too far into the future. Of course, I worry EVERY SINGLE DAY about what'll happen when I'm gone- or when I am still here but can't take care of her. But, I'm not nearly as hung up on those questions anymore. I know most of the answers and I'm okay with them. I'm sad, of course, but I am okay. Instead, I spend a lot of time thinking about today; about right now. I open my eyes each morning to the same thoughts, what will she be like this morning: happy, upset, disconnected, engaged? wet?  I panic a little bit as I wait for the bus to drop her off: how was her day? how was her behavior? did she stay dry? I fumble for the communication notebook from camp or school. In the evenings as I tuck her in, I'm still thinking, what else can I do to help her? what am I missing? and of course, how am I going to pay for _____ (therapies, special camps, respite care, all these doctors who take zero insurance, etc)?

I crawl into my own bed each night, exhausted. Years of worrying, constantly being "on" and ready and able to tackle the next hurdle (which often comes up in the blink of an eye), have aged my brain and body. Sometimes my worries come to me in my dreams. Sometimes I get a reprieve until the baby wakes me up- and then I start worrying about him.

this week's prompt: a blog post inspired by the words "growing pains"

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