Why I'm Not Ready for My Son to Use a Wheelchair

I’m at an emotional crossroads with our youngest son. I knew this day was coming. I was prepared for it, yet I’m prolonging it.

Melissa's son.
Melissa’s son.

Our son has PMM2 CDG (also known as CDG 1a), a metabolic disorder that affects nearly every part of his body. His muscle tone is severely affected as he cannot sit unassisted, crawl, or stand alone. He has come leaps and bounds from where he started, and we are hopeful someday we’ll be able to cross those accomplishments off of his list. But for now, he’s completely dependent on me.

I carry him everywhere. Out of his crib. Down the stairs. Into the car. Out of the car. Running into the store to grab one item. Into his big brother’s school. If it’s quick, I carry him. We do have a stroller made specifically for children with special needs, which we absolutely love. We load it up and use it when our trips are long, when my arms can’t carry him.

But as of late, something is changing.

The quick trips are getting challenging. My arm is burning and aching. His uncontrolled movements are causing my grip to loosen. The arching of his back and meltdowns while carrying him are becoming dangerous. His nearly 30-pound three and half-year-old body is getting hard to juggle. As I ice my arm each night, I am beginning to realize what I’m doing may not be working.

I was prepared for this day to come. We have the tools. I keep going back to the day of our diagnosis when his neurologist said he may not walk and would likely need a wheelchair. We heard her; we knew this was going to be a part of our lives. Prepared and ready are two different things.

I’m not ready. I’m not ready to set him in his chair for the quick trips. I’m not ready to say I can’t do this anymore.

To be honest, the wheelchair part of the equation isn’t what brings me to tears. What bothers me the most is, I was going to carry him as long as I could.

With each passing day I’m realizing his wheelchair may need to be an everyday part of our lives. Running into the library to drop off the books. Ordering a sandwich at the coffee shop. Bringing packages into the post office. It’s difficult for me to do it anymore without assistance.

With tears streaming down my face, it’s hard to admit I’m struggling. My body hurts and it’s not going to get any easier. I know his body is only going to become more difficult to manage. Getting his slippery body out of the tub currently is like a well executed magic trick. Balance here, hold here, set him down as quickly as you can. Caring for him is going to come with more challenges.

I remember sitting in that office, staring into our son’s big eyes when he was eight months old, thinking this day was so far off.

My arms would carry him as long as I could.

I’m afraid “as long as I could” may be here.

It might be now and I’m not ready.


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