As Disability Awareness Month gives way to another month reminding us to learn and develop awareness, we bring you an interview with Meg Goshorn-Maroney, mother of five. Three of her children have limb differences and the way that she and husband Joseph are raising their children provides an opportunity to learn that what we often see is not so much “disability” but ability differences. This week we have a Q&A with Meg about how they’re raising kids with dignity and whole personhood.
Describe your family your family and what ability differences you live with.
I do avoid using the word disability. I guess I just prefer limb difference just because the word disability is very general. It can mean so many different things — intellectual disability, physical disability or a combination of both. We usually like to use limb differences because that’s a little more specific. It is a better description of this part of them. There’s diversity when you talk about just disability, there’s a lot of diversity in that community.
Our firstborn Eleni is 8 years old and she does not have any limb differences. She is physically like the average kid. Our second-born Macrina will be seven in a couple of weeks, and she was the first one that we had with differences. She has the most different limb differences. Her arms stop at the elbow, and when she was born, she didn’t have fingers. She was born with feet and toes but did not have shinbones on either leg. So when she was about a year old, doctors did a surgical amputation at her knees, which allowed her to wear prosthetics so that she could have some more freedom of movement.
For a long time now she’s preferred what we call boots or booties. They’re silicone, weighted and round at the bottom, and they just kind of slip onto her legs like gloves, allowing her to run around or get up and get down as much as she wants.
We got the idea for Macrina’s special boots from a little girl who lives in Great Britain who had meningitis when she was a baby, so they had to amputate her arms and her legs. One day I saw a picture of her in her gymnastics class, and she was wearing these booties. I showed Macrina’s physicians a picture of them. After talking to the prosthetist in Britain who makes them, we were able to get her some.
Seraphima, five, has arms that are average length, but she has three fingers on each hand with no palm, and her legs are similar to Macrina’s except she has one shin bone. When she was a year old, she had a surgical amputation at the knee on one leg. On the other leg, she had an amputation at the ankle. She wears prosthetics every day.
Then we have our twins, Maria and Johnny. They’re two. We call Maria “Mia” was born with no limb differences. Johnny has four fingers on one hand and five fingers on the other, though two fingers are fused together. On one of his legs, he did not have the ankle bone. It wasn’t connected in a way where he could walk on it regularly. So he had a surgical amputation of the ankle. It’s funny because just the other day at therapy Seraphima pointed out that “Johnny’s leg is like” one of my legs, but his other leg is not like my other leg.
They’re very aware of their bodies, and they’re aware of the differences between each other and other kids.
How do they relate to each other? Do you find yourself intervening in conversations about those differences?
I can’t remember very many times when we’ve had to intervene in a conversation. A couple of times, Eleni has felt a little left out that she doesn’t have limb differences. We usually go to Shriners Hospital in Chicago for prosthetics and surgeries. She never needed an appointment there, nor needed physical and occupational therapy. For a kid, when you see your siblings doing something and you’re not, you feel a little left out. We talked to her about how this is something they need. There’s nothing wrong with them needing it or her not needing it.
Conversely, Eleni learned to ride her bike. Macrina and Seraphima would like to know, ‘When do we get our bikes?’ There’s someone in Chicago with a bike shop, who specializes in making bikes for kids who can’t just use the regular average bike you get at Walmart. We tell them, “We’re gonna go to this guy, and he’s gonna help you. We’ll figure out some ways for you.”
We try hard to make everything as equal as possible. But when something can’t be exactly the same for all of them, we just try to say “Different is different, and different is good.” It comes from a book we have called “When Charlie Met Emma,” a kid’s picture book about a boy who meets a girl with limb differences. The author has a daughter who has limb differences, and the phrase that is repeated in the book is “Different isn’t weird, bad or strange, different is different, and different is OK.” That has become one of our household mantras.
How do you encourage them to develop their abilities? How do you help others understand when to intervene or not, and how?
Macrina had an encounter last week during free time at the homeschool co-op. A little girl had a bouncy ball, and Macrina asked, “Can I have a turn with it?” The girl told her that she didn’t think Macrina could. When Macrina insisted, the girl gave it to her, and she played well. Joseph told Macrina afterward that when people tell her what she can do (or not), to remember she will have a better idea of her abilities. She can speak up for herself and not let others limit her.
Joseph and I have always really tried to make it a point to encourage them to try different things even if at first they think they can’t do it. You never know just until you give it a try. Sometimes it means coming back to it later, after they’ve grown or after they’ve gained more skills. We know that there are things that their lives that they will have a hard time doing. There are even some things that they maybe won’t be able to do. But we try to focus on the things they can do. We remind them not everyone can do everything.
We have to remind older siblings to wait to be asked for assistance. We’ve had to be flexible as each kids’ abilities changed over the years. When Macrina was really little we would attach a marker or a pencil to her arm so she could draw with it. One mom I know used hair scrunchies to attach the pencil. As Macrina grew up, she would tell us, “I just want to hold it.” We let her. She likes to do things the way she likes to do them. It makes me hopeful for how she will grow up and go through the world.
How do you how do you hope people will approach your children and understand them from the first meeting? And as they continue to get to know them?
They’ll see their differences, but I hope they realize it’s not all of who they are. I hope they’ll first try to get to know them. Ask them the basics. You know, how old are you? What do you like to do? What are your favorite things?
I would say the same whether they talk to them or me. I remember one time I went to a homeschool gathering. There were a lot of moms there, some I hadn’t met before, and they were very curious about my kids. I understand that. But at the same time, they were asking me questions about how the kids “got that way.” I just thought you know, I just met you. I wish that we could have gotten to know each other a little more before all the questions.
Yes, my kids are sensitive to staring. Thankfully, almost everyone we’ve ever met is polite about that. Only really little kids stare, so I remind my kids they’re little; they have not learned yet.
A lot of times kids have come up to me and started to ask questions about my kids. I redirect them. I always say, “Ask them. They can answer. They love to meet new people and are always open to that.”
On the days when they’re frustrated and say something like, “I wish I didn’t have limb differences. I wish I was like other kids.” We try to acknowledge those feelings. We try to help them to remember they are whole persons. We want them we want them to feel as comfortable in their body as they can. But all people go through times when they’re not comfortable in their bodies. That’s OK. That’s a normal thing to have happen.
What advice would you give to parents of differently abled children?
Definitely, pray a lot. That’s the number one thing. Sometimes you feel like you don’t have this road map that you once had in your mind. You can get anxious about what’s going to happen to them. How are they going to learn, grow, live? Take it one stage at a time.
At Macrina’s 20-week ultrasound, we learned of her limb differences. In Joseph’s family, there have been people with limb differences back to the 19th century. His mother did a lot of research. Macrina’s have been the most different. The doctor came in after the ultrasound and told us what the ultrasound showed, and it was very emotional. But, also, I’m part of two limb different family support groups on Facebook, and that has been very helpful. Even when we don’t do everything the same. But it’s it just helps to see that others are thriving.
What would you love other parents to know?
When your kid sees my kids for the first time, encourage them to come over and say hello. The hardest thing is when they see when they see it being treated like it’s a hush-hush subject.
I think my kids are just the nicest sweetest, sparkliest kids, and I hope everyone gets to meet them because they’re just so they’re so worth meeting and knowing.
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