Ability

By Sophia

“And the obstetrician came to me and said, so we're pretty sure that your newborn baby has Down Syndrome. Would you like to give her up for adoption?”

Mom: So, we… didn't know that Mara was gonna have Down Syndrome before she was born, although, in retrospect, there were certainly some things that… like, looking back on it afterwards could have given us the clues. She was small enough that they thought that I was wrong on my due date, so they, they pushed back my due date. And, as it turns out, she just was small. And, none of the tests—there's a couple of tests that they give you, but none of the tests really indicated anything. She was breech and they do a thing where they can try and turn them from the outside? But, that was sort of the point at which the technician who was going to do that realized that I was really almost ready to have her.

Um, and so they said, nevermind, we'll just do a C-section and, you know, we didn't try and turn her and they didn't even try and have her be born naturally. And as it turns out, the cord was wrapped around her neck, so, it's a good thing we didn't. But it's funny now, knowing Mara as a human being, it completely does not surprise me if there's a way that she could get tangled up in something or put something on backwards or upside-down or inside-out...

So, some things I remember from her birth, they pulled her out and they sewed me back up and they're washing her off. And the obstetrician came to me and said, so we're pretty sure that your newborn baby has Down Syndrome. Would you like to give her up for adoption? I had not even seen her, touched her, held her at this point.

So that was sort of my first introduction to being a parent of somebody with a disability. Obviously I did not give her up for adoption. And I just, I remember being like, super, super, super overwhelmed.

Sophia: What has been your experience with… the kinds of things that are out there for children with disabilities? Schools, clubs, sports, friend groups?

Mom: Um, that, the friend scene has been terrible. You know, it's like, having a toddler and the, all the friendships have to be managed by me and by the parent of whatever person she's friends with, just, like you would have to with a toddler, you know. She's certainly not capable of making her own plans. But even beyond that, not really capable of… sustaining a friendship the way a friendship needs to be sustained. I mean, you remember. But, you know, say there were ten other kids in her classroom, is there going to be someone that you want to be friends with out of those ten kids? I mean, you were picking certain kids you wanted to play with and certain kids you just weren't interested in playing with at age two! At age one and a half.

So kids that young have preferences. So, narrow your choices down, and then narrow them even further because maybe two thirds of the kids in your class, are either much more intelligent or verbal or more high-functioning than you, or, much less intelligent, much less verbal much less mobile, than you. So, the range of people with whom you might have something in common is tiny.

And so from that tiny range of people, find somebody that you like and want to hang out with and want to be a friend with, you know. And then have your mom call their mom to make a play date.

Sophia: And what has been your biggest takeaway from having a child with a disability?

Mom: I feel like it gives me an entree into… what life is like for people, for whom this world is not tailored. It gives me an immense amount of empathy for people's situations, that I'm not sure that I would have.

Sophia: After the interview, I felt like there were some things that I hadn't known before, but it was really crazy to hear my mom's feelings on it. What she felt about the struggles that come with being a parent of a child with a disability. And, I feel like I never, would've known if I hadn't done this interview. I… feel like I'd never really gone into depth with her about what she felt about it all. And so it was interesting to hear her take and her feelings on the struggles of having a disabled child. I feel like I left with a new appreciation for my mom, and her experience. And I'm super lucky. And, my sister is super lucky to have someone so supportive to take care of her.