I am watching a child lose his independence for the third time

My son Charlie has recently been unable to get into his power wheelchair on his own, and I know I am watching him lose the ability to ambulate, as I did with two of my other sons.

Charlie, 15, like his brothers Max, 20, and Rowen, 17, lives with Duchenne muscular dystrophy (DMD). I also have four other children.

Max walked until he was 17, when he fell getting ready for bed and broke his leg. He never walked again. In the months leading up to his fall, he had lost the ability to get into and out of his wheelchair on his own, along with the ability to get up from a seated position. He started spending more time in his chair. Rowen stopped walking at 11 after falling in the backyard. He broke his leg and never walked again. His loss of ambulation was sudden, literally happening overnight.

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It’s not easier the third time around

We knew this change was coming. During a recent appointment, the physical therapist said the way Charlie was getting into his chair was becoming a fall risk.

Having been through this twice before is not helping me process my feelings any better, but it does help me know how to adjust to the day-to-day, practical caregiving side of Charlie’s loss of mobility.

My husband and I had been encouraging Charlie to go to the nurse’s office or to try a handheld urinal when he needed to go to the bathroom at school, but because he could still get into and out of his chair, he continued to go to the student bathroom. I know he knew he was losing strength, but he wasn’t ready to admit that he needed to make a change.

But now that he can’t get out of his chair on his own, he had to come up with a new plan.

Max hadn’t wanted to go to the nurse’s office, either, but he was able to use a urinal on his own, so Charlie said he was willing to try that.

We spent Sunday figuring out where he could store a urinal in his backpack. All we had was a large urinal. He practiced using it, but I also ordered a smaller urinal that Max had used. It would be easier to conceal, and his peers wouldn’t notice it in his bag.

Making the changes was a success for Charlie, and his week at school went well for him.

My heart, however, still goes out to my son. I feel wounded. I’ve lived through the loss of ambulation twice before, but I’ve never watched Charlie lose it. It’s hard to see him endure so much.

The amount of grief I feel as a mother of three sons with DMD is mounting, and I know it will only increase.

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