Why an Ordinary Question From a Stranger in the Park Meant the World to Me
I’m sure you have friends, family, someone in your life who asks how you are, how your kids are, what kinds of things you all have been up to since the last time you saw each other. (At least I hope you do!) This is the story of a mom I met today. She has a little girl with Down syndrome, like my son.
I took the boys to the playground, our usual haunt on an awesomely spring-like day, and as my oldest son ran off to the zip line, I pushed Jeremy over to a bench to give him some lunch and let him play in the sun. (Really I was hoping that I could give both boys lunch at the park and then they would fall asleep on the way home and I could have a few hours of *silence*!). As I sat on the bench and watched Jeremy throw playground mulch everywhere, I saw a mom with a little girl over by the zip line. I couldn’t see the little girl’s face, but from her gait to the way she bent over, every bone in me screamed, “That little girl has Down syndrome!” I just knew it, like I just know that first latte in the morning is going to calm me down, like I just know how a Cadbury mini egg tastes when it’s not even close to Easter yet. It’s not that I identify individuals based on looks or abilities, but I do categorize how I’m going to respond to individuals based on commonalities I perceive us to have.
She came over to us (for the record I rarely approach anyone; I don’t know how some parents would respond) and introduced herself and her daughter (who by the way has the same name as my sister, which is not common at all!), and she asked about Jeremy. After the initial introductions of our kiddos she asked me, “How is he?”
Isn’t that such a loaded question? “How is he?” from any other person who doesn’t share that 47th chromosome in common with our family seems almost obligatory. And do you know why that is? Because I’ve found most people don’t understand all of the medical problems that can be associated with Down syndrome, so their question seems to require a basic answer like, “Oh, you know just being like any other pre-2-year-old… stubborn as hell, destructive too!”
But I think (and this is me, not based on fact or fiction) that parents of children with special needs, and in this case a fellow 47th chromie, ask this question because they get it. They get how hard it is. They get how scary it is. They get how much it sucks to go to the doctor week after week for weight checks. They get how hard it is to watch your child trying to learn and stumbling a lot and working harder than all the other 46 chromies are. They get the terms CAVC, VSD, ASD, G-tube, hypotonia, clubfoot, etc. They just get it. So you know when you’re asked “How is he?” you can answer freely, you can use as many acronyms to describe medical procedures as you want because they probably have experience with it. You can say, “We just can’t get his nutrition right,” “Even though he had a CAVC repair, he still has a VSD.” You can say these things and there is no need to explain what you mean, because they just know.
This post originally appeared on For the Love of Down Syndrome.
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