Friday, July 30, 2010


You don't get to experience most of the "firsts" you normally do when you have a severely disabled child. With Charlie, there's been no first word, no first steps, and no first solid foods. I can't write in her baby book the first time she rolled from belly to back or the first time she sat up on her own. It's all upsetting sometimes. Mostly I've come to terms with everything. I do accept her the way she is but I still get sad about it. I've learned to celebrate the "inchstones" as many SN moms say....the little things, not quite milestones, but worth celebrating in their own right. Some of Charlie's "inchstones" have been kicking her legs, using her voice to communicate basic needs, and rolling from her side to her back. All of these things a newborn can do, but we had to wait many months for them. When you wait that long for something, it becomes a big deal.

Unfortunately, having a child like this, sometimes you start missing out on other "firsts". Even though I try to let Charlie experience as much as I can, she doesn't get out much. She's not handling extreme temps well so we don't do a lot of outside stuff. It's difficult to take her places so a lot of times she stays with her nurse. I'm trying harder though. We haven't had as much nursing lately and I've been dragging Charlie along with me everywhere, even the grocery store! It's taken me a while to figure out the logistics of everything. How to get all the groceries TO the check out is a big ordeal. I take her into the store in her stroller and have two hooks attached to the handle that I hang cloth bags from. Then I load up the bags and just stuff the heavy stuff underneath. I always take her off her feed so it's one less thing to haul through the store. One day I had 3 errands to run. I HAD to get them done that day. But all 3 were quick in and outs and I hate getting her in and out of the car that much. It's a pain in the butt and time-consuming to strap her in. Taking her out is just as time-consuming because I have to be ultra-careful not to rip out her tube. All 3 errands were pretty close together so I parked at the one in the middle of the other two and carted her around in her stroller! It was quite a walk, but it was more relaxing than getting her in an out of the car 3 times. It wouldn't have worked in 90 degree heat, but since it was a milder day, she did ok (not great, but ok).

So my long, drawn-out point is, I'm *finally*, after almost 3 years, figuring out that I CAN take Charlie places. And this will hopefully lead to other "firsts". First zoo trip, first ride in the big SN swing at the park, first trip to the beach, first movie at the theater. We're going to do it all! Really! Maybe not all right away, but we're going to do it.

So another first I never would have imagined I'd be so excited about....her first mani/pedi! Her nurse asked permission to do it. Of course she could, why not? It never even occurred to me that it might be something Charlie could enjoy. I'm not a girly-girl at all. I don't even OWN nailpolish. But thanks to having other women in her life that actually understand little girls, Charlie gets dressed up, her hair done up, and her nails painted! She's lucky if I even brush her hair (what's the point when it acts so crazy?), dress her in girl's clothes (the boy's clothes fit better), and trim her nails. LOL

So here's her pretty nails:

And her pretty hair of course:

Here's another first...first head switch! She got the hang of it even faster than the button she used before. She "asked" for candy no less than 15 times using her switch. You can see the sticky stuff around her lips. LOL

And just a cute one....she had a rough night and I took her in my bed. Once she was sleeping peacefully I snapped a pic. It's dark, but oh well, she's still precious!


Katie said...

Ah, her painted toes and fingers are too cute!!

swgoats said...

Such a sweetheart! Love the pink polish!

Hang in there. I know this heat is killer. Here it's been up to 100! We've had some scary moments trying to take Joe out this summer.

If you haven't seen it, rent "My Left Foot" - I always think of that family hauling him around in a wheelbarrow, when I'm feeling tired of lugging Joe around.