Wednesday, October 13, 2010

Some for 21: Down Syndrome Awareness Month

It's a sick day. No, not for Lamb—she is quite happy to be at school today, because she is the Student of the Day. Today is a mommy sick day, which as many of you know is pretty much the same as any other day, but with more TV. Mommies don't really get sick days, right? But fortunately, Roo is sleeping (for about an hour now—yay!) and Monkey is watching TV and I'm laying on the couch. And catching up on some blogging—another yay! So hopefully I'll have a chance to get some real writing done today and you will hear more from me over the next several days. (Oh, and if you happen to notice me rhyming more often than usual, it's because Monkey is watching "The Cat in the Hat"—I'm trying to tune it out, but I am already finding myself thinking in iambic pentameter…)

ANYWAY, October is Down Syndrome Awareness Month, and several blogs I know of are participating in a campaign called 31 for 21. Basically it means that these bloggers have committed to posting every day in October to raise awareness about Down syndrome. I think it is a great idea, but since it is mid-October and I am just now climbing on board, I can't really consider myself part of the "31 for 21 campaign"… so I have decided to do Some for 21. Starting now.

So today let me just give you a little update on how we're all doing. The short answer is… good. We're doing well, much better than four months ago, two months ago, even last month. I know some of you are thinking, "It's about time!" But honestly, I really thought it would take a lot longer. I remember the day after Roo was diagnosed, I was trying to imagine us several months down the road… when Roo as 6 months old… 9 months old… at Christmas… at his birthday… and they all looked so grim. Now I look ahead and wonder what he'll be doing by Christmas, by his birthday, by next summer. But I don't wonder with sadness—well, OK, yes I do, but not as much sadness as I did at first. I am just genuinely curious and excited to watch him grow and see who he'll become.

I think one of the hardest parts of Roo's diagnosis was trying to figure out where to place the blame and focus my grief. If someone is in an accident and loses their legs, you can be angry at the other driver or the road conditions or something. You can wish for the days before the accident. But this was different. To wish for life without Down syndrome was to wish for life without Roo, and I definitely did not want that. From time to time since that life-changing visit to the geneticist, I have found myself wishing that we hadn't ever made that appointment—but that's just silly, of course. Avoiding the appointment wouldn't have changed the fact that Roo has Down's, but it's the only way my brain could rationalize getting rid of Down's while keeping my sweet baby.

In her book The Year My Son and I were Born, Kathryn Lynard Soper acknowledges the fact that she will likely have to grieve her son's Down syndrome all over at different points in his life, and I'm trying to prepare myself for that. But for now, I'm trying to just enjoy this sweet little baby exactly how he is right now. Over the weekend we had a chance to visit with some friends who have a baby just two weeks younger than Roo—and miles ahead of him. I was nervous about seeing them, but it really didn't bother me at all. That baby… well, he just isn't Roo. Yes, he's bigger and more coordinated and sitting up better and… probably other things. But it's not like I thought, "Wow, they got a way better baby than we did." Or like Roo was depressed because he couldn't sit up like the other boy. They were just two different babies at two different stages.

And what is Roo doing these days? Well, he is happy and sweet and charming everyone we meet! (See, I knew I'd start rhyming eventually.) He rolls from back to belly AND belly to back, and he holds his head up nice and high. He knows when we stick a bib or burp cloth under his chin (because he's a very messy eater!) that food is coming. He knows when I hold him and say, "I'm gonna get you!" that I'm going to kiss and tickle his neck—and he'll smile and lean his head back for me. J He is absolutely fascinated with his hands, and spends much of his time holding them in front of his face and studying them. He's trying to grab his toes now, and he is finally starting to grab at toys. And he makes all manner of noises, some more polite than others. ;-)

His physical and occupational therapies are going well. Our main focus right now is to strengthen his core muscles, which I actually find rather amusing. Maybe I should start doing some of his exercises, too, because heaven knows my core could use some strengthening. Anyway, we're working toward getting him to sit up with support and getting him to pivot and move around a bit more on his belly.
So yes, we're doing well. Learning, growing, adjusting. Even, dare I say, enjoying.

Here are a few blogs I read that are participating in 31 for 21:
And for more information/resources, check out the Down Syndrome Resources & Recommendations page.


Weed said...

So glad to hear you're doing well, Katy! And I'd love to hear some of those exercises Roo does for strengthening his core, because I need to do them with Rebecca. She has a Help Me Grow eval next week because she's not pushing up or rolling over, but I've already been told it will be awhile before they can start therapy with her because of a waiting list. So anything I can do on my own before then would be great. I'm just not sure what to do with her, besides your average "tummy time." What do you do with him? Thanks!! -Wendy P.s. Oh, and Rachel watches "Cat in the Hat" all the time and I, too, think in rhymes at times!

erin said...

I'm so glad things are good in your world! And for the record, I would not be in the camp of, "It's about time!" (as I'm sure all of your readers are!) I think however long it takes any of us to get to a "good" place is how long it was supposed to take.

Does that make any sense? Or is it my sleep-deprived brain making up things? ;)

Hope you feel better soon!

Love you,

Anonymous said...

In honor of Downs Syndrome Awareness month I just had to let you know of a very moving and inspirational story< Coach Gene Stallings former Alabama football coach had a Downs Syndrome son that was such an inspration to so many. Please go to Focus on the family and type in Gene Stallings and you will here his touching tribute to his son John Mark (make sure you have tissues handy) He also has written a book Another Season about his son,I have not read it but plan to.