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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Thursday, May 31, 2012

What is acceptance?

Remember that post I wrote awhile back about the road to acceptance? I've been kind of revisiting that lately.

Honestly, I think about Down syndrome every day. I think about it when I see other babies doing things Lauren hasn't quite conquered yet. I look for it in her features. And, believe it or not, I get SO excited when people ask me if she has it! I feel like we're now part of an elite club that requires an invitation. Some people decline that invitation, which a gross undertatement. We, and a lot of other super awesome people we've come to know, accepted it.

At this point, Lauren's delays are not really all that apparent. I mean, she's three months old! Three month olds don't exactly do a whole lot. (Or do they? I think Lauren's pretty on target for how her older brother was developmentally at this point). But she doesn't roll over (at least not on purpose, she's done it once by accident). But I am trying really hard not to be in denial. Lauren will have delays. But I try not to think about it. I don't look at milestone charts to see where she is. Why would I? I'll be sad. Every parent envisions a future full of accomplishments for their children. And Lauren will have a future full of accomplishments. Just maybe not at the same time as her typical peers and her accomplishments might be different.

Right now that doesn't really matter a whole lot. She's just a baby! And as my husband says, all babies do annoying things, haha. Lauren just does them with extra cuteness. But when she gets old enough to notice? It's probably going to suck. But I don't live my life in the future. I live right now. Right now I am so thrilled that she is smiling a ton! And "talking" to us a lot. And engaging us with her eyes. Right now I am just enjoying my amazing little girl.

Lauren just celebrated her 2 month post-op anniversary. It seems like a lifetime ago and a day ago all at the same time! I don't know if that makes sense. Sometimes I still can't believe how incredibly sick she was. Because she looks so incredibly healthy now. I am thankful for her every single day. Every time I change her clothes I love to kiss her scar and think about what it represents to me. It represents the challenges Lauren faced in the first two months of her life and how she overcame them with a flourish. But it scares me too.

I recently started my new job (yay!) We're learning about how the #1 cause of unnecessary hospital deaths are directly related to sepsis. Which Lauren battled with a vengence. And medical errors, which resulted in the sepsis not being caught right away. We learned about the Josie King Story. (Google it, but grab a kleenex box first.) And I feel so so lucky to have my little girl.

Right now, I am feeling so good about what Lauren is doing and who she is as a little person. But will I eventually be a little sad? Depressed? Disappointed, even? Yes. It might be tomorrow, next year, or 20 years from now. But you know what? I have a beautiful little girl that I get to raise, love and help grow. I am so thankful that she is alive. Does it take away any of the other feelings that surround a diagnosis like Down syndrome? Nope. But how lucky that I get to feel these emotions? There were days during our stay when Lauren seemed so weak, so small and so sick. I was so afraid to ask how she was doing because I wasn't ready for the answer. It's scary to think back on and I'm so afraid of how things could've turned out. So right now? Down syndrome is a gift. Doctors told us that kids with Down syndrome tend to recover more quickly and do better with the surgery that Lauren had.

The point is, I don't think that "acceptance" of Lauren's diagnosis of Down syndrome is a destination. For me, it's a more of a road trip. A road with lots of windy, twisty paths with some definite bumps along the way. But when we get to the smooth parts of the road the grass is beautifully green, the air is fresh and the sun is shining. And I forget all about the bumps in the road a while back.

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