Wednesday, January 16, 2013

The Awesome Girl On Parents Magazine: Scoop From Her Mom

Looking at the cover of the February 2013 issue of Parents magazine, you first notice how super-cute the little girl is, what a great smile she has, how fab her clothes are—oh, that frou-frou pink skirt! The fact that she’s holding onto a walker and has foot braces is almost irrelevant… except for the fact that history is being made. I’ve been a magazine editor for more than twenty years, and I can’t recall a cover ever featuring a child of different abilities. I’ve been a parent of a child with special needs for ten years, and I’ve longed to see kids like my son featured in major magazines. This. Is. Huge. HUGE.

The little girl is Emily Kiecher, age 3; she has spina bifida, a condition that affects 1 in 2500 children caused when the spinal column and surrounding tissue and skin fail to close up in utero. Emily, her mom Liz, 36, and dad Christopher, 35, live in Buffalo, New York. Liz is an at-home mom who runs a handmade hair accessories business, The Sassy Damsel (guess who her favorite model is?) and Christopher’s a high school teacher. The couple are active fundraisers for the Spina Bifida Association, and have helped raise more than $20,000.

I recently got the chance to get Liz on the phone—right before she was whisking Emily off to Disney World for a surprise vacay—to talk about her daughter, how she became a cover star and her hopes for Emily’s future. This is what she had to say:

I have to ask, what kind of walker is that? My son, Max, has cerebral palsy, and he had a rather blah silver one.

It’s a Nimbo walker. I actually wanted silver—you can match more stuff to it than gold! But it’s great for a cover!

What was shooting the cover like? What did you tell Emily?

We told Emily we were going to a photo shoot. I take a lot of pictures of her at home although we’ve never even had a portrait of her done at J.C. Penney, so I think the meaning was a bit beyond her. She had a great time–Emily rolls in every situation, she rarely cries or throws a fit in public. At one point on the set, they asked if she liked music. She loves music. She knows the songs on the radio before I do! They asked what she wanted to listen to, and she said “Lady Gaga,” so that’s what they played. She was dancing around, and pointing to anyone who wasn’t dancing! When we left, she gave hugs and kisses.

What do you think her reaction is going to be when she sees herself on a magazine cover?

We’ve made Shuttefly photo books for her. I think she’s going to think, I’m the star of everything!

That’s not a bad way to go through life, right?! OK, can you share a bit about Emily’s history.

Four years ago, when I was pregnant and went for an 18-week exam, the technician stopped and told us we needed to speak to the OB. She said the pictures showed a hole in the baby’s spine, and that it could be spina bifida. I had no idea what that even meant. I was on prenatal vitamins for a year before I conceived, I was physically fit, I led a healthy lifetyle. The doctor sent us to a perinatologist that day, who did a sonogram. She confirmed it was spina bifida. I was hysterical. She told us our baby would have paralysis, would need a head shunt, and could have various degrees of learning disabilities. She wrapped up our visit by asking if we wanted to terminate the pregnancy. We said, “No.”

How has spina bifida affected Emily?

Her hips are dislocated, but it doesn’t affect her gait, which is pretty good. She has a shunt in her head, to help drain fluid from her brain, and luckily she’s never had any problems with it. She has no surface feeling from her waist down, so I can’t put her on a slide in the middle of summer because she wouldn’t be able to feel it’s burning hot. She has low muscle tone on her left side. Every week she get physical and speech therapy, and also gets occupational therapy, aqua therapy, and hippotherapy.

I’ll bet she gets around pretty well in that walker; my son used to zoom up and down the street in his.

Oh, yes, she can walk, turn, run. For a while I had a horn and a bell on it! Long-term, we expect her to be able to walk with forearm crutches. In October, she took her first unassisted steps. The physical therapist was having her go from a table to the floor to do a puzzle. Emily said, ‘Don’t hold me, I’ll do it by myself!’ And she walked from the table to put the puzzle piece in. I get teary thinking about it.

I’m tearing up too! I know exactly what it feels like to see a child you were told might never walk take those first steps. Tell me, what do you think is the biggest misconception about spina bifida?

When I go to, say, a grocery store with Emily and her walker, the amount of people who stare is insane! I realize people have never seen a walker and they are processing and trying to get an understanding, but I think people make judgments and see her as a disabled child–not a kid who happens to be in a walker. This is an issue for any child with disability. Instead of looking at a child, people see the disability. Those kids who say “awwww” in a pitiful way about her–I’m like, “Have you looked at her? She’s happy!” Emily doesn’t realize she has a disability. When people stare I’ll tell her, “Why wouldn’t people stare at you? You’re gorgeous!”

What are your hopes for the Parents cover?

I’m not delusional–I don’t think people will see her on it and think, I’ll never again stare at a kid in a walker! But I hope some people will see that she’s just another kid. I hope it starts a discourse for people, and makes them open to seeing images of kids from all walks of life. And I hope that in the future, when I go to the magazine section, I’ll see three or four more magazines featuring kids from all walks of life!

How are you going to celebrate Emily’s newfound fame?

I’m going to spend the month going to different bookstores and groceries in the area, and taking pictures of the magazine on newsstands. And I’m mailing a copy to every doctor we’ve ever been to!

Love it! Liz, when you emailed me, you mentioned that January can be a hard time for you because it’s the month when you first learned you’d have a child with spina bifida. But this January, it seems like you’ll have much to celebrate, right?

Yes. It’s always been a tough couple of weeks, because I think back to those dark days of my pregnancy when so much was unknown. That was the hardest part. I wish I could have looked down the line and seen just a fraction of what life would be like. This is our normal. And Emily’s on the cover of a magazine showing the world that she defines spina bifida, not the other way around.


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