The "W" Word

Photo of a young woman and two young men wearing blue graduation caps and gowns.

I stood on a stage yesterday before more than 2,000 people from 39 countries and pretty much admitted to them all that I am not the smartest mother on the block.

I completely confessed to some of my worst parenting.

I wish I could say I was exaggerating.

I wish I could say anything except the truth.

See, for years, I wouldn't allow the word wheelchair to be spoken in Benjamin's presence. I called it the W word, and insisted we speak in code if it became necessary to use the word at all -- something I frowned on in principal!

I can remember the day it started as clear as the day it happened:

Benjamin was trying a different gait trainer -- a walker with wheels and a hip belt that attached him to the walker. We were taking advantage of the nice temperatures in our Minnesota home before the snow came, and so he was walking outside. Lynn, our precious wonderful physical therapist, looked at me and said it might be time to talk about wheelchairs.

I bristled up before she finished the sentence.

"Don't say the W word in front of me. And DO NOT say it in front of him!"

I wasn't using my sweetest tone.

For me, a wheelchair meant limits. 

A wheelchair meant closing the door to walking.

And closing the door to walking meant different. We would be different.

I was petrified of the W word. It made me physically hurt.

The W word was an absolute statement that we were disabled. And the disability was not going anywhere. 

I had not one single clue on how to progress past that fear.

Two guesses who did:

Benjamin's physical therapist at the Mayo Clinic (yes, we had a ton of PT plus a ton of OT every single day, every single week.) was working to get him from the stroller to his walker. She urged and coerced, and prodded. And finally he was out of the stroller and into his walker. Only, he was facing backwards.

Kim: "So what are you going to do now?"

Benjamin didn't even take a breath before telling her: "Well, I guess I'll do the hokey-pokey and turn myself around!"

My son was bright, smart, articulate, and so funny. And I was forcing him to enter every single room too exhausted to shine.

I knew it was time to talk about wheelchairs.

When we went to try one out, my sweet boy – always intuitive – looked up at me and said, “But Mommy, I walk. I don’t need that.”

I wanted to scoop him up and run out of there but before I could he noticed the joystick and a smile lit his face like I had never seen before. He wanted to try one!

The moment he realized he could move around his own space AND talk at the same time, he smiled even bigger than he had when he saw the joystick.

See, I was completely blocked by my own paradigms. I was wrapped up in how a wheelchair made ME feel. I was worried -- in a way only a Southern mama can be -- about how things would LOOK to the rest of the world.

I was a terrible mother.

Because for Benjamin:  A wheelchair was a key to freedom. A wheelchair meant he could roll into a room and still have plenty of energy to entertain all around him.

A wheelchair meant he could keep up with his friends.

A wheelchair meant he had the stamina for the school day.

He could graduate high school. He could travel the world. He could make friends, have fun, LIVE life!

So often, we enter the journey of parenthood with all manner of ideas and paradigms for how it will look. And dear mercy, even if our children are NOT born three months early and DO NOT have Cerebral Palsy, the road is very rarely what we expected. 

A wheelchair was not a failure on Benjamin's part.

A wheelchair was not a last resort.

A wheelchair is a tool that helps Benjamin in an area where his body has a deficit. It doesn't define him anymore than the glasses I wear for my body's deficit define me.

Far more important than the fact that he rolls through life -- the fact that he writes in a creative voice that looks effortless. The fact that he speaks off the cuff with insight, wisdom, and an empathy for all around him. The fact that he is a fiercely loyal friend. And a caring, loving son.

It is time to spread the word -- walking is not the end all, be all. It isn't.

Finding your path to being a kind, loving, contributing member of society -- oh that is far more important than whether you walk, crawl, or roll through life. 

I wish my young-mama self had known that.

Because for Benjamin:  A wheelchair was a key to freedom. A wheelchair meant he could roll into a room and still have plenty of energy to entertain all around him.

Carol Shrader