Robyn Schelp and Molly Myers are both moms of children with intellectual and developmental disabilities here in Columbia.
Robyn has three sons, and her 11-year-old has an unknown genetic disorder. Molly has an 8-year-old son who is missing a part of his brain, twin girls who were born prematurely and another three-year-old daughter.
They spoke about what it’s like to care for a loved one who has a disability in today’s “Supermom” culture, and about how they have built their own support systems.
Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words. You can view more conversations at missourihealthtalks.org.
Robyn Schelp: You know, it's like our gas tank just keeps getting emptied, emptied, emptied with the kids, and it doesn't get filled very often.
And so that's, that's what I think like when I hang out with Molly I'm like "okay, this is like my quick fill, when I hang out with you, it's like, okay, I can be me and I can just talk about what a crummy day it was. And how as much as I love my kiddo, I can't, I can't do this anymore. I'm done with this mom gig right now.
You know, you get it and I don't have to worry about it.
Molly Myers: And I feel the same way like it's so nice to just be able to relax and not say "I wouldn't change anything for the world." You know I wouldn't. I would not, you know, and I love my kids with my whole heart and I love Will, but man, it's hard. It's hard.
Robyn: So, tough things, let's see. I will say one thing that you've constantly asked me, is, you, because - My son is 11. Thirteen, eleven and eight. And your kids are much younger and I make it look easy.
But, you didn't see the beginning part of our life.
And, and, you know I probably haven't sat down and like laid it all out ever to you because it was really hard and if I go there I try not to go there, you know, you can appreciate that.
Molly: Oh, I can absolutely appreciate. And so, but when I go back, which like you, I try not I have to just keep moving forward.
But when I think about the days where I had three kids under the age of two, none of whom walked, two of whom were maybe over five pounds by the time we left the hospital and what life looked like, I mean, I can feel it in my whole body right now.
Like, we'd have PT, we'd have OT, we were doing horseback riding,
And I was a stay-at-home mom and my husband was working on, at that time, a master's degree and working full time to support our family. And so often people said, "Oh, you just need help, like, you just need to get help."
But what people don't understand is we're at a point where some of our therapies were out of pocket. We were getting denied some coverage. I was staying at home to handle all the day-in day-out. Nobody was knocking down our door to help me with two preemies and a delayed older child that didn't walk or feed himself.
And it costs money to have people to help you.
Robyn: It's hard to ask for help. Like people would say, well "I just I'd love to help" and it's like, don't tell me you'd love to help just say "I'm going to bring a casserole over tonight."
Don't ask me if you want me to, just do it. Because I'm going to say no, I'm going to try to look like super mom because we live in a supermom culture. I'm not and, you know and they don't see, they do see the super mom. I saw the super mom when you would walk through MU. I didn't see the heartache and the hardship that you went through it.
This piece was reported and produced by Isabel Lohman.
