Saturday, July 12, 2008

Saying It Better

I love blogs. The list on the sidebar doesn't even touch the bookmarked sites that I have. The ones on the sidebar, though, are ones I read on a regular basis. I tend to be drawn to blogs of knitters, other moms, really good writers, and (just getting into) those who are writing about raising children with special needs, especially Down Syndrome.

Many times, these other bloggers have a way of expressing thoughts, feelings, or experiences in a way that perfectly encapsulates my own. There are two that have resonated with me recently:

The QC Report
Every time we let our children walk away from us, we’re practicing for the time they do it for keeps. And every time we let them go out into the world, even for a short time, some part of our brain thinks “No! Not yet! There’s no way she knows enough. I know for certain I haven’t taught him enough. Did I teach her the eyeball-gouging trick if someone tries to kidnap her? Did I get him to tolerate citrus fruit enough so he won’t die of scurvy? Did I impress upon them how unspeakably fragile I feel when I think about them doing something self-destructive? Does she know how I have never loved anyone on earth the way that I love her? Come back. Come back." (4/10/08 entry)

Down Blogger
I am a member of more than a few Down syndrome specific sites. I routinely attend the yearly DS Conferences. I know a fair bit about statistics, different kinds of DS, health issues specific to "our kids", etc. In fact, it is rare a day goes by that I don't find myself speaking or typing the words "down syndrome". And yet, DS is such a minor part of who my daughter is in my thinking. I rarely look at her and think "oh, that is because of DS". I don't equate her successes and failures with the number of chromosomes she packs. Even so, I am aware of her genetic makeup deep in my bones, it is there even when it is not in the forefront of my thoughts.

Somehow, I have been able to raise her to be a young lady who happens to be really cute, funny, charming, a bit moody, a third grader, a great reader, a pretty good baseball player, an aspiring artist...who happens to have a little something extra in her genes. In a weird way, DS is everything, and DS is nothing. It colors most of my thinking about her and her future, and still manages to be at the end of a long line of things I think about when I think about her.

It is almost as though the DS is the last hurdle we jump in all cases of trying to give her the life of a normal little girl. Usually, it is along the lines of "How can we make a world that has her pegged as 'that Down syndrome kid' see who she really is. (03/01/08 entry)



rickismom said...

Yes, as I wrote on a t-shirt for my daughter, Ricki,age 13,
"Down syndrome is only 1/47th of what I am."

Anonymous said...


I am mom to Sophia, 8, with DS and I lurk around a bunch of DS blogs. I happened upon another blog via a Google Alert I have set up whenever "Down syndrome" is posted. I came across this woman's blog and I am actually speechless. I thought I would put it out there to my fellow DS moms.

Here is the link: