Had you noticed I haven’t mentioned Down Syndrome Awareness Month this year?
Every October since Nathan was born in 2010, our family has participated in a local Buddy Walk for Down syndrome. Well … it’s kind of local. We walk with the Down Syndrome Society of Mobile County (DSSMC), but we don’t live in Mobile County. Basically, you can see Mobile County from Mayberry, but there’s a huge body of water in between.
We intended to walk, we really did. But after four years I’ve come to realize that while DSSMC does some great things, few of them benefit us – at least not directly – because of the distance, so I wasn’t very motivated to raise money (plus Sarah Kate was already fundraising for Miracle Marathon). I’m confident we’ll walk with them again in the future, but we didn’t get our act together this year, and at the last minute I picked up a nasty stomach bug, so … no Buddy Walk 2014 for us.
At first, I felt guilty. What sorry kind of advocate am I?
But when we went to Mass on Sunday, and when I took Nathan to preschool on Monday, and when I grabbed my camera to shoot Nathan for Andi’s Official Down Syndrome Awareness Month Post, I realized that I – no, we, our whole family – advocate for people with Down syndrome every single day – and that’s just in our “real” life.
When I post photos of Nathan hitting practice balls off of a tee in our backyard, I show the world that kids with Down syndrome enjoy sports just like typical kids. And when someone looks closely and notices that those practice balls are actually softball-sized, they realize that kids with Down syndrome admire their older siblings and want to be just like them (sometimes, anyway – sometimes they enjoy tormenting their older siblings, which is the soundtrack of life that I’m listening to as I type this post).
When I snap and then share a candid shot of Nathan and Sarah Kate, her arm draped affectionately around his shoulders, the image contradicts the message that so many parents hear before their child with Down syndrome is even born: that the other siblings would be better off without him.
By contrast, an intentionally posed shot of the two of them speaks plainly the opposite message: that sometimes he thinks maybe he’d be better off without her, or at least without her holding him down for the picture. 🙂
Two and a half years ago, I wrote the following:
I know that when some people look at my family, they see heartache. They see struggles. They think to themselves, “Thank goodness that’s not me.” They imagine that my life is difficult, that I am sad most of the time, and that I want to escape from the hell that I’m living in because I have two children with disabilities.
But they’re wrong.
It isn’t my children that make life difficult, bring sadness, or make me long for an escape – it’s the people that believe these things about my family. Our daily life isn’t much different from that of other families. We laugh and love; we eat and drink. I do the laundry; Mr. Andi mows the yard. Sarah Kate does homework; Nathan plays with toys. It is a beautiful life.
That post remains one of my most popular; I think it’s because I struck a chord with many of you out there who feel what I feel, that it is the outside world that is the problem, not my child.
Nathan is loving, happy, willful, obstinate, funny, energetic, and obstinate (yes, I meant to say “obstinate” twice). He is a challenge, there is no doubt. But he spreads sunshine wherever he goes – there is little chance those who come across our path will not be “aware” of him.
If you love someone with Down syndrome, I bet you know what I mean.
Now it’s your turn: I know that not all of you reading have a child with Down syndrome, but many of you do, and I’d love it if you’d let me share a photo of your “buddy” here on the blog for Down Syndrome Awareness Month. If you’d like to participate, share it on my Facebook page by noon ET next Wednesday, October 29 with your child’s name. No Facebook? Shoot me a message here and I’ll let you know where you can send your photo.