Raising awareness, one arse-kicking at a time. (Figuratively, of course.)
Posted on March 21, 2012
Today was World Down Syndrome Day, and I bet a lot of people flat-out couldn’t care less.
This year, even the United Nations recognized World Down Syndrome Day. I wonder how many countries really paid attention. And by “attention,” I mean funds for research or resources or even a bloody T-shirt.
Three years ago, this day would have been a blip on my radar; if Ds had tried to LinkedIn me, I might have declined the request by checking, “I don’t know this person.”
Three years ago I was counting down to Opening Day, stalking Time Warner to post the baseball package details and braiding my cats’ fur on quiet Sunday afternoons, avoiding places like Crate and Barrel where only couples shop on the weekends. (Please accurately guess which part of that whole description I made up. Exactly. Stalking is illegal.)
Today, this day means a lifetime’s difference, because we have Charlie and this day is the one annual global shot at raising awareness.
OK, you think. I get it. I’m aware Down syndrome exists. Cool. Sit tight.
Because if that awareness was where we needed to be, families with children who have Down syndrome would have seen their posts on Facebook grouped under a heading that said something like, “Jane Jell-O and 37 others posted about Down syndrome today.”
Nope. Didn’t happen. For those who included the words “United Nations” in their post, their friends saw, “Jack Jukebox and 37 others posted about United Nations today.”
Don’t get me wrong. That’s awesome that the U.N. is a hot topic for Facebookers. But I take this a bit personally because Facebook may have saved my sanity when I sat home alone every day for what felt like 12 maternity leaves, tethered to my son who was tethered to a heart monitor which was tethered to the wall.
And because I know a friend who will read this as she’s sitting at home thinking she’s the only one feeling this way, I will tell you Facebook may have saved more than my sanity. (Yes, you know who you are, and you know the conversation we’re about to have. It’s overdue.)
Facebook gave me a way to peer into the world of Down syndrome privately… and as often or as infrequently as I wanted. It became a lifeline to those going through or having gone through the muddy waters I wasn’t stepping through but rather slopping through in a white petticoat. Clueless. Aimless. Scared. Feeling alone. (Despite having the most amazing, supportive husband during that time or the most loving, supportive parents who probably age a bit more every time they read this blog. Didn’t matter. Felt alone. No one could be feeling what I felt. Everyone seemed so damn happy all the time.)
I remember the first time I searched on FB for “Down syndrome” and our city. Thank God Facebook recognized Ds that day. Thank God parents had been mining through the pages of Facebook, clearing new paths and building an archive of emotion, information and hope.
And also pain.
Which gave me hope.
I could read a post from a mom whose heart was bursting as she watched a “typical” child befriend her son with Down syndrome. Instantly, I was a part of her range of emotions, from sheer joy that she was witnessing the friendship to raw fear as she wondered if it would continue, if others would follow suit throughout her son’s life.
I read a post from a mom who bared her naked impatience with her child.
OK, make that posts. We’ve all been there or we’re on our way. The day I learned my son had Ds, I clutched at a colleague who became a treasured friend in that moment, and the first words I spoke (I don’t remember telling her the news, exactly) were, through tears and with such despair, “But I have no patience!“
Some days, Charlie will tell you I have no patience, too. But we work it out and we continue to work because I refuse to give up on him even when he is whining and gnawing at his thumb like a caged squirrel. His toddler frustration matches my mommy frustration – and when I relent and give him that cookie even though he didn’t make the right sign (it’s really not the child torture it appears), I feel like I’m failing us both. Which makes me even more impatient.
Learn these signs, Charlie! Learn how to tell me what you want! Learn how to fall backward when you lose your balance! Learn how to chew with your back teeth! Learn, learn, learn so I can feel like I’m winning!
I guess this post is one of my shorter ones. I know I have a lot more to say and I could provide you with millions of resources via links (perhaps even 21 resources, to be symbolic), but today is one of those days when I feel so tired already… and this battle against time and energy and resources and lack of awareness has only just begun in our lives.
If Facebook can’t unite us with two of the most life-changing words I’ve ever heard, well, I’m going to let myself lower my standards for this post, finish my wine and hope maybe something in here gave you a compelling reason to Google Ds. Find out what it means. Find out how many people in America have Ds, how many people in the world… or find out something truly useful, like how to donate to support research and resources… and then come back to this blog and realize its impact on actual lives, for better and worse.
Be aware that “worse” means a disorganized new mother learning to juggle three lives instead of one, learning how to silence a heart monitor that suddenly blares relentlessly, learning how to be strongly silent in the face of a neighbor who reassures her that “they make medicine” for “that situation” her son’s got.
Be aware that Ds made my husband and I stronger than we ever might have been. (For my husband, it’s also a physical strength built from holding his wild-eyed, crazy-angry wife back from that neighbor referenced above. Thank you, dear! Although I probably could have struck up some useful alliances in the Big House… anyway.)
Be aware that Ds has made me talk back to more adults than I ever thought possible (and let’s face it, that’s a huge number). I don’t mean rudely or arrogantly. I mean with meaning. Passion. Determination.
Be aware that Ds has given my family some of the most amazing, bonding gifts as we find joy in Charlie’s every eyelash flutter.
Be aware that when I hear people say, “I wouldn’t change a thing,” I think: I would. I think, Charlie will always be Charlie; he is the most unique personality I’ve ever known. And if I could press a button and remove every challenge before him, I would do it in a heartbeat. I’d beat the living holy hell out of that button.
And that doesn’t make me a bad person. It makes me a mother who wants the absolute best for her child – free from the challenges this syndrome stacks in front of him, laid out like a timeline of hurdles.
And it doesn’t make the mother who says, “I’d never change my child” a better or worse person than I, either. I know what she means. This situation we find ourselves in wasn’t on the request list. We didn’t all ask to be here. And all parents of a child with Ds must learn to not just survive but continue to grow, because a child’s livelihood is in our hands.
Be aware that I am running with all my might to get in front of those hurdles and blast them to shreds, and be aware that if more people were aware, I would have fewer things to blast and more people would be blasting them with me.
Are you still reading this? Hmfph. I got a little carried away. You’re probably feeling pretty aware right now.
I needed that.