Ordinary Choices
Posted: January 18, 2014 Filed under: Down syndrome, parenting, the future | Tags: Down syndrome, Mountain View Cemetery, Parenting, teenagers 18 CommentsI live a pretty ordinary life. I’m married with three kids, have a mortgage, a car payment, and random aches and pains (perhaps from having three kids in five years). Boooring, in fact.
A couple of days ago I found myself in the car with a sleeping baby and an hour to kill, so I went for a drive. There’s a cemetery in the middle of the city. I like driving up the hills and trying to absorb the view through osmosis, in hopes that I’ll leave a little calmer and wiser.
I watched the sunset for a few minutes before I realized I’d happened upon a flock of teenagers. It was that late afternoon witching hour filled with supposed boredom and an inexhaustible need for togetherness. I watched them sitting on the hoods of their cars, making fun of each other, laughing, and I felt an actual ache in my chest. So ordinary and unremarkable, yet I found myself unable to think of anything else.
I admit that I indulged in some cheesy thoughts about bright futures, dreams, and an oyster analogy.
There was one girl among maybe ten boys, and so of course I imagined one of my girls being her. It came fairly easily. Maybe she was that girl who seemed happier making friends with boys. Maybe she was someone’s girlfriend or sister. At any rate, I mentally time travelled ten years to plop Mouse or Chipmunk in there to see how it felt. Truthfully, the thought kind of disappointed me. It seemed so vanilla. If I’m honest, I have vague notions of the girls growing up doing something other than just wiling away hours with boys playing hacky sack in some cemetery. The moment I thought it, I realized how silly it was to set up vague expectations like that for your children.
Then I tried to imagine LP being one of those boys and I paused. It wasn’t so easy. The idea of him going to meet a crew of friends, maybe with his girlfriend, and kicking a hacky sack around did not seem ordinary at all. Then I felt a second ache in my chest.
Now don’t get confused. I wasn’t feeling that ache because I think there is something about LP himself that precludes him from partaking in that ordinary teenage moment.
What hurts my heart is the idea that the rest of the world might never allow him, a person with Down syndrome, to experience such ordinariness. Here I am worrying about whether my daughters will be ordinary—as if that were something intrinsically bad—while my son may struggle for that choice. I’m fully aware of what parents of pre-teens and teenagers (with Down syndrome) say; I know it is likely that social inclusion will get more difficult. Withheld, even. I can see how it becomes harder to fight the tide, especially if institutions or other parents don’t see eye to eye on what is right.
What should I do, then?
I’m trying to remember that looking ordinary has very little bearing on a person’s real life. Being ordinary is more often than not a façade, after all. We are all different and extraordinary in some way or another. Plus, LP might not want what I saw in the cemetery that day. Still, I do think that some people are afforded the privilege of taking their differences out when they want, while others are involuntarily branded by it.
I don’t have a fix. I want all three of my children to have choices. Plain, old, ordinary choices. Choices between which friend to hang with. Choices between who to date. Choices between places to go. Later on, I might even want them to have fair choices in employment, living arrangements, finances. Is that asking for too much?
Kimchi Latkes 
Wow…. I’m not even sure how I’d react to a situation like that. I think I’ve developed a defense mechanism that keeps me from going there. Every now and then it hits me… like a ton of bricks – like when I realized Josh’s prom was coming up and if I didn’t do something it would pass by without him. I hope things will be different for LP!
Yes, see this bothers me so much, to think that if I don’t fight for him to experience something so basic and ordinary for other cistern, my kid might never experience it. There are days when I think it’ll be better for LP, and then days when I doubt that, I’m not sure. I can see how a parent needs defense mechanisms though, and that is too bad for us all.
Hmmm…I have these thoughts too. Even when I’m doing something simple, as walking through a mall, I look at a group of kudos and wonder if that will be Camden so e day. I know it can be, but will others allow it to be or include him? It makes my heart ache to think about it. Beautifully written my friend.
Exactly. Just being regular feels privileged, right? I guess we will find out in ten years, huh? Maybe that private tropical island won’t seem so bad. ;)
Shortly after Katie was born, I had a dream (I know, I know–here we go again with the dreaming) that my sister and two teenagers barged into my house in the middle of the night. I was really annoyed and then I saw that the teenage boy and girl both had Ds. They were joking and laughing and were just regular teenagers. And I woke up crying, because I realized that that’s what I wanted for my daughter. We’ll see.
I put great stock into your dreams!
So well said. You’re making my chest ache, too.
<3
I know it sounds odd, but I have really trained my brain to NOT think about the future when it comes to Finn. (Well, maybe not entirely true, but I’m giving myself an 6-8 month limit) If I’m honest I think it’s because there’s a big part of me that is just so afraid to face it, but then there’s another large part that realizes there is just too much unknown in the future to really spend time worrying about it. Worrying about it takes me away from enjoying who he is TODAY, and how much I love and adore spending time with him. I thought about his future so much in the early months, and I feel like I missed him even though he was right in front of me. For the most part, we are still very much in the “baby bubble”, and I don’t want to push myself out of it. Is that sticking my head in the sand? Maybe. But it’s where I am. -Jenn (not “daddymediumwell”) :)
Well, I think you can count on some good company in the sand! I’ll meet you at the beach. ;)
We all have the same worries and fears. It’s so hard not to fast forward. My advice to you (and myself) is to remember that it’s the ground work that you lay down today that will make tomorrow easier. I have three sons and my Chooch makes friends the easiest. Yes, I have to facilitate things sometimes, but it is because he was included from the very beginning that things are as good as they are. He wants friends and he goes and gets them. I have no doubt that he will go to the prom and do all those things that he wants to. Don’t get too ahead of yourself, it goes by fast enough.
That is good advice, mama. I know it’ll go by so fast, I don’t even know where our first year went! And I’m sure you’re looking at me and wondering where the decade went! Oy. Kids.
Like this…A lot!!! I have the same feelings about my two…Good to read it and hear if from someone else’s heart…
Aw, thank you, mama! I’m telling you, it is hard to raise kids! They just want to go about being cute, but of course we worry. :)
Yes. We have such a marvelous community right now. They took such good care of us when Max was in the hospital his first few weeks, and they dote on him like crazy now. But sometimes I wonder, when all our kids are older, how these things will play out.
I think that must be a big difference between now and previous generations. Not that some families didn’t have good support back then, but it seems so much better now. I’m grateful too, for finding so many people who were able to show me that there was nothing to fear in the very beginning.
I’ll probably never stop worrying about the future, but at least we have a pretty good present, huh?
I have never been ready to do anything in my life. I was never ready to leave home, to go to University, to get married, and/or to have kids. And yet I did all those things. If I waited until I was “ready” to do anything, then nothing much would get done.
When I was pregnant with my first child and the doctor told me my blood test confirmed I had a much higher risk of having a child with Down syndrome, I thought, “I’m not ready for this!” So what did I do? I declined further testing, hired a midwife, and had home births for my three children. They are all typically developing, but I understand the “ache” you describe. I never for a moment feared that I would not love my child if it had Down syndrome; what I feared was that OTHERS would not love my child. I feared the incredible pain of seeing my child excluded.
I wrote The Unfinished Child to start a discussion about fear and the desire for control in contemporary human reproduction. What are we afraid of? The ache of exclusion? When I contemplated my “choices” of carrying a child with Down syndrome, I went to the library and read books on the topic. I discovered that 92% of women terminated those pregnancies. But when I go to book clubs, I find a very different reality. The vast majority of readers wish that I had ended my novel differently. What does this tell me? That there is a large discrepancy between the high termination rate and the average readers’ wishes. And then they tell me stories of the people in their lives with disabilities and what those people mean to them. I find this incredibly hopeful, because my three “typically-developing” children are “typical” today, but do I know what the future holds for them? And am I ready?
I love, love, love your posts! Thank you.
Thank you so much for sharing this. The discrepancy is something I’ve contemplated a bit and I think that part of it is that the 92% statistic is a little confusing. It apparently is of people who opted to do amnio testing, which is a self selecting group of people who are more often than not, considering termination.
The more I have revisited your book the more I love it. It is a conversation I wish were more in the forefront. The funny thing about being so afraid of the exclusion is that we fuel more of it when we opt for such an increasingly narrow view of what is good and acceptable in a human being. I hope people in the DS community read your comment because I think that you’re experience in those book clubs shows that there is more change and hope out there than sometimes we let ourselves believe.