Here’s the Thing About My Son’s Wheelchair: It’s Alive


me2

Here’s the thing about my son’s mobility device: sometimes, it feels a bit… alive.

I mean, I know in my brain that Simeon’s wheelchair isn’t actually alive, but way down deep in my heart, where I keep all the feeeeeeeelings, I totally believe it is.

Maybe it’s because my son never attached to a binkie or a lovie or any other cute little baby item. He never snuggled a blanket into sloppy oblivion from years of gummy affection and drool. He didn’t drag a teddy around the house or cuddle up with a stuffed rabbit (who became “real” after surviving a scarlet fever outbreak and being thrown away in the trash — but that’s a story for another time). Point is, nothing was by his side through thick and thin, during those first few years of life.

Unless you count the wheels.

I remember when they arrived in the mail, passed along to us by a family in Minnesota whose daughter had outgrown them. We sat him in the snug foam seat and placed his squishy little palms on the wheels, moving them back and forth as he watched us uncertainly. He sat in it all evening– even ate his dinner in it. He wasn’t going anywhere – not yet.

And then, a few hours later, he moved.

He wheeled up to the large wooden door of our dining room chest, the place where we kept our wine glasses and cork screws and fancy dishes. He pulled it open, maneuvering his wheels this way and that, figuring out how to bring his little face in close to the musty dark interior while making room for the wide swing of the cabinet door. He looked inside. He snatched up a little shot glass, turning it over in his hands, all while I sat on the floor taking pictures and beaming like my heart would burst.

It was the first time my 11-month-old was able to act on his curiosity – the first time he had the means to act on his wonder.

It was the start of a grand new chapter in my son’s life.

simeon1

But that was years ago. And babies get bigger and blankets fray. Teddy bears lose their stuffing, and wheels that once fit start feeling a bit too snug. Simeon had a good run with those wheels, but a few months ago, we knew we were at the end of the road. His legs are so long now that his feet almost touched the floor. The seat was too tight, and he preferred his big boy wheelchair. My husband and I went back and forth. Maybe we should keep it a few months more? His feet don’t quite touch the floor, they just almost touch the floor. Maybe his sister can use it? But we knew it was time.

So I messaged a fellow spina bifida mom, made the arrangements and headed to the FedEx store.

The man behind the counter set Simeon’s chair on his scale. He told me how much it would cost to ship and pack. He took my credit card and passed me a receipt to sign. “Thanks, you’re all set,” he said, giving me a little wave of dismissal.

And I just stood there with my mouth bunched up and my eyes wide and watery and my voice all pathetic saying, “You’re sure you don’t need anything else? I mean, you’ll make sure it gets there OK?”
I ran my hand along the foamy seat and felt the bumpy wheels under my palm.

“It’s just that… it’s really important to me.”

Here’s the thing about my son’s mobility device: sometimes, it feels a bit… alive.

Alive like something full of memories and joy and trouble. Alive like exploration and adventures. Alive like banging into walls and wheeling into ankles and chasing your dad down the driveway. Alive like crying in front of the FedEx guy, telling him to please take care of this thing that helped my son open a big wooden cabinet and grab a shot glass – this thing that took his curiosity and turned it into action.

I know in my brain that Simeon’s wheelchair isn’t actually alive, but way down deep in my heart, where my memories live and the FedEx guy can’t see, I totally believe it is. And one of the great things about being alive (and things that become real, like wheelchairs and Velveteen Rabbits) is that each chapter leads to another.

So we’ll turn the page and say farewell, old pal. Best of luck on your next adventure.

simeon2

The Velveteen Wheelchair now resides in California with our pal Maddux.

maddux

You can follow Maddux’s adventures on his blog and Facebook page. You can learn about making your own Bumbo Wheelchair here.

maddux2

“‘Real isn’t how you are made,’ said the Skin Horse. ‘It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but really loves you, then you become Real.’

‘Does it hurt?’ asked the Rabbit.

‘Sometimes,’ said the Skin Horse, for he was always truthful. ‘When you are Real you don’t mind being hurt.’”

— Margery Williams, “The Velveteen Rabbit”

This post originally appeared on What Do You Do, Dear?


Find this story helpful? Share it with someone you care about.


Related to Spina Bifida

Why This Drawing Is Just as Important as the Medications for My Daughter

This drawing looks like an illustration from a children’s picture book. The spunky heroine scores the perfect pair of shoes! Some may wonder why shoe shopping would be part of a children’s story. A bit materialistic? And what’s all that stuff on the girl’s head? The girl in the story is wearing feathers and bows [...]

To the Doctor Who Claimed My Son’s Autism Was a Social Construct

When I came to you for a behavioral consultation, my son was 4. He wasn’t making eye contact. He threw tantrums at restaurants and parties when he became overstimulated. We boycotted all loud events. He had difficulty communicating how he was feeling. His fine and gross motor skills were delayed, and he wasn’t gaining skills [...]

6 Ways to Build New Support When Facing an Invisible Disability

Battling an invisible disability, especially for an ongoing period of time, can bring about many losses, limitations and changes none of us would choose to face. It can be even harder to bear the adjustments when friends and family don’t seem to understand what we’re going through or why the condition isn’t getting better. Sadly, [...]

To Anyone Considering Working With Young People With Mental Illness

Dear doctor, psychiatrist, occupational therapist, nurse, manager, health care assistant or soon-to-be any of the above, So you want to work with young people with mental health problems? Or maybe you already do. Either way, welcome to the wonderful world of child and adolescent mental health services. You’re likely to be, or have been, met [...]