The Future

June 17, 2010

This is the eve of Chloe’s last day of kindergarten, so I’m in the mood to ponder the future. Of course, pondering the future is an uncomfortable experience for SNPs (special needs parents) because often the future seems like, well, like a black void full of unimaginable perils. Okay, I guess a void, by definition, can’t be full of anything, but you know what I mean.

Kindergarten has been awesome for Chloe. It has been better than we dared to imagine, thanks to her wonderful para, teachers, therapists, principal and the wonderful students at her school. Which means, unfortunately, that our experience with first grade will have a hard time topping it, or even living up. As the kids get older, expectations will be higher and social situations will be more complicated, and unless we find some way for Chloe to communicate more easily, she will be left behind.

As I think about the future, though, first grade is the least of my worries. There are so many reasons to worry about our kids, and when your child has disabilities, you have the same worries, only magnified. For example, what if there is a natural disaster? It’s a little extreme, I know, but after Hurricane Katrina and the Haiti earthquake, it’s hard not to wonder what you would do in that situation. And what would we do? How do you take care of your kid under crazy circumstances when she can’t walk, identify herself, or even sit up? When food is scarce, how do you provide for a person whose food must fit through an opening the size of a juice box straw, and be administered with a special tube?

And even if the world doesn’t end, my world will certainly end one day. Tomorrow, my husband and I will be meeting with a lawyer to write our wills, and we’ll be giving him our list of guardians for Chloe. Of course, most parents want to make sure that their child will be taken care of in case of their death, but for typical parents, this situation is a remote possibility. For us, it’s almost a certainty. If Chloe has a normal lifespan, we will leave her to the care of (hopefully) relatives or friends, and possibly even strangers when we die.

So here at a big turning point in our lives, I’m going to do something I don’t usually do–make a few wishes. I don’t know how I feel about the possibility of wishes/prayers/whatever being granted, and I know I’ve made a few desperate ones that haven’t come true, and a few that have. But I’m willing to give it a try.

1. Let her talk. I mean, using the communication device will do, but it sounds funny and needs charging and programming and will eventually need fixing and replacing. I want to hear my daughter’s voice, hear what’s on her mind. And she needs a voice, some kind of voice, to let her participate in the world.

2. Keep her safe. I’ve learned over the years that her father and I are not the only people looking out for Chloe. Let’s keep it that way.

3. Keep her free. As long as there are institutions in our state, I will worry that somehow, Chloe could end up in one of them. I hope that they are all history by the time she is an adult.

That’s all. If I were feeling greedy, I would pray for her to learn to eat, survive junior high unscathed, and sleep through the night on our upcoming trip to my mom’s house. But that would probably be asking too much.

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