On Mobility: First Wheels and Jetpacks

A warm welcome to Mary Evelyn’s readers. Thank-you for joining our journey. I would be honored if you read the About Us page to find some of my favorite writings.

And to my readers – I’m excited to introduce you to Mary Evelyn of What Do You Do, Dear? I first became intrigued with her blog because her son Simeon also uses a wheelchair but he’s so young! It still blows me away how kids surprise us with what they can achieve. Mary Evelyn writes with humorgrace, and truth and I encourage you to follow her blog. 

We’re doing a blog swap today because we both feel so strongly about the importance of mobility and recognize that it can be an emotionally challenging topic. We hope that our stories get you thinking and talking. Use the comment section on either of our blogs to ask us questions or share your mobility story.

I’m over at her place today sharing more about Aidan’s wheels. Go check me out there but first, read about Simeon’s Jetpack…..

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“But maybe he could walk if he just did it really slow, like this?”

She spoke with the seriousness of a scientist, deep in thought as she paced with painfully slow and stiff-legged steps across the room.  She was one of my third grade students and she was trying to figure out how to help my son walk.

My students know about Simeon. They know about his puffy blond hair and his penchant for stealing medicine bottles. They know about his trach and his wheelchair too, which has led to a variety of kid created “mobility tips” ranging from the comical (maybe if he doesn’t bend his knees– kinda like a robot?) to the absurd (he should just use a jetpack!).  Their ideas are as creative as they are preposterous but each zany suggestion reminds me of something I know to be true: mobility matters. 

We never decided that our son needed a wheelchair– we knew it would be so from the day we brought him home from the hospital, his arms stretching and curling in constant
motion while his legs slept warm and quiet under a blanket. But knowing didn’t make it easy and I still remember that deep aching in my belly the first time I saw his tiny frame sitting between those two wheels. Visually, it was a shock. He looked so young. Dare I say it– he looked so disabled. I worried it would change the way people viewed him.

Simeon got his first wheelchair when he was 11-months-old. Not all children with spina bifida require a wheelchair, but those who do generally receive their first wheels around age two. That means two years of being held. Two years of being carried. Two years of exploring only the items and spaces within arms length.  Two years is too long.

Getting our chair early was lucky. It was a rickety loan from the county and it veered to the left if he went too fast but the moment Sim sat in that seat, we saw the world
unfurl before him. It was like an awakening– not just for his exploration, but for his communication and for his desire to be involved.  It changed him and it changed the way we saw him, too. I found myself letting him take the reigns. He can’t became he can.

Because mobility matters.

Even my third graders know it. I know it too.

I know it in the simple things— like when he chases shadows across our backyard deck or spins himself around to get a better look at the neighbor’s lawnmower.

I know it in the messy things— like when I see him sneak into the kitchen and dump the contents of each drawer onto the floor or catch him digging a stranger’s discarded soda can out of the garbage for a taste.

I know it in the tough things— like when I sit with him on the grass beside the swing set, wondering how to help him climb it, or when I carry him up and down the stairs in other people’s homes that are not built for people like us.

Even when it hurts, it matters. Getting kids moving matters so much more than how they move. Maybe it’s legs, maybe it’s a jetpack, maybe it’s a wheelchair– anyway, it’s time to go exploring.

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You can watch a video of Simeon’s first week on wheels HERE

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 Mary Evelyn Smith is a Children’s Librarian and blogger living in
Columbus, Ohio with her husband and her bespectacled toddler. She writes
about life, laughs, and (not so) perfect parenting at www.whatdoyoudodear.com. Follow her on Twitter and Facebook.
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5 thoughts on “On Mobility: First Wheels and Jetpacks

  1. Dear Mary Evelyn,
    Warm greetings from Palm Desert, California.

    I am besotted by that boy of yours! He is spectacular. After reading this post & video I was led to two more on You Tube & watched them, too. All excellent.

    I hope you are preparing a program/course/talk for the American Library Association–the local chapter in your area and the national arm.

    Perhaps a video (and future memoir) on Books & Mobility for an audience that loves to read.

    Wishing you all the best. Great job.

    And, Heather, thanks for yesterday’s amazing post & for sharing this story.

    Love, Shivaun

    • I love this idea Shivaun! I hadn’t even considered speaking about this with ALA but I think it would most certainly be helpful There are a lot of books featuring characters with disabilities but, unfortunately, there are not a lot of GOOD books featuring characters with disabilities. Now you’ve got my wheels a-turning <– no pun intended 🙂

  2. Oh, how I wish I would have known all of this when Kyle was a toddler! I carried him for 2 1/2 years before he was able to take those first steps with assistance. I remember sitting him up in the living room and if it wasn’t for me moving him, he would be stuck in the very spot I placed him. I didn’t realize, then, how his limited mobility affected his cognitive development. I am glad Kyle is moving now and I am very glad that Simeon gets to explore, explore, explore!

    • I know we all just make the best decisions we’re capable of at the time and that’s why I feel like sharing our stories is so important – to help others make this hard decision. I’m so glad you’re seeing progress with your son!

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