When Elisa was born, it seemed like every time I looked at her, all I saw was Down syndrome. It was lurking there, in every conversation, every interaction. We were so stunned by her diagnosis that we were consumed by it- wanting to connect with other families, read as much information as we could, find our place in our new community.
It’s so different now. So many of my days, I don’t even think about Down syndrome; it’s our new normal. Something we take for granted, like breathing. In so many ways, it makes things so much easier.
And in so many ways, it makes it harder.
Yesterday was an awful day. I was tired, had a rough day at work and Dan was teaching so I was on my own with the kids. We decided to run to Target and get some errands done before heading home. During the course of my visit to Target, three well meaning strangers decided to engage me in conversation about the kids:
“How old is she?… 18 months? Oh my goodness, she is so small for her age! Have you had her checked by a doctor? Is she eating?”
“Oh, what a beautiful baby! Her chubby cheeks are so red! She must be so cold! Are they always like that? Why are her cheeks so red? What is that?”
“She is so darling! Is she walking all over? I bet she is into everything. What is she saying? I remember my son just talking my ear off at that age! Why doesn’t she have any teeth? How does she eat?”
We were in Target for a grand total of, maybe, thirty minutes? I took each of their well meaning comments like a bullet, a not so gentle slap in the face to remind me that my darling daughter has Down syndrome and of all the delays and unexpected health issues that come along with it. I was ready to drink a bottle of wine by the time the cashier handed me my bags- but not before asking me if she was sick since she sounded congested and I really shouldn’t take her out if she wasn’t feeling well.
Now, I know all these people meant well. They were making conversation while doting over my kids. I totally appreciated their attention and nods to how well behaved they were. Where I struggle is trying to understand why in the world people would ask perfect strangers questions about their kid’s obviously abnormal characteristics? There are times I see kids with behaviors or a rash or whatever. If I make conversation with the parents or child, I don’t point out their obvious difference or shortcoming and start asking questions or making observations aloud. What the hell, people?
Let me be clear: this rant is not referring to people who respectfully ask if Elisa has Down syndrome and ask questions about her diagnosis. This is not about parents who ask “Hey, is that eczema? Have you tried XYZ remedy?” I am all over conversations with those people. It is the people who can’t stop the internal conversation in their head from reaching their lips who make me cringe. Who remind me of Elisa’s diagnosis and the way it makes her “different.” That my baby isn’t like everyone else. Those are the days I wish Down syndrome still consumed me like it did in the beginning. I wouldn’t need to be reminded by those innocent comments that, hey, this might be your new normal, but there is nothing normal about it.
Most days, I can handle it. It doesn’t get to me. I smile and nod and roll my eyes as I walk in the other direction… but yesterday was rough. Yesterday was another reminder of how far we have come and how very far we still have ahead of us.