Realizing my oldest son with Duchenne has become a young man

I hope my columns haven’t sounded repetitive lately. I know I’ve mentioned more than once that my oldest son with Duchenne muscular dystrophy, Max, fell and broke his leg almost four weeks ago. But I continue to learn, adjust, and come to realizations that inspire my column.

In many ways, Duchenne is always like that. At diagnosis, at changes in ambulation, at changes in heart function or pulmonary health — the newness is all-encompassing and changes me, my family, and my sons forever.

And right now, I’m learning to see Max as the young adult he has become right before my eyes. I’m so busy as a mom to seven and a caregiver to my three sons with Duchenne, managing both the household and my children’s medical care, that I sometimes forget to stop and really see Max. If I had done this, I would have realized that, at 17, he’s not the little boy he once was.

I want Max to be able to come back from breaking his leg and recover fully. I hope he regains the same level of ambulation he had before the injury, which meant being able to walk in the home and having independence in the bathroom. Although I knew his days of walking were nearing an end, I wasn’t, and still am not, quite ready for them to end so abruptly.

I’ve been pushing for his local doctors to allow him to get back into the pool as soon as possible for aquatic therapy. If an ambulatory boy with Duchenne breaks his leg, it’s recommended that they practice bearing weight and walking in the water as soon as it’s safe. I’ve been pushing his physical therapists and neuromuscular team as well, but I’m afraid I’m not making a difference, and by the time he gets in the pool, it will be too late.

Recommended Reading

February 17, 2023 Columns by Betty Vertin

In the wake of trauma, I’m finding joy in what I can give

Letting my son make the decisions

I keep talking to Max about walking again. He always replies that he wants to, but he’s not in a rush. The injury still hurts him a little, and he doesn’t seem scared about not being able to walk again. What bothers him is having to keep his leg straight, which, for a power chair user, means keeping your footrest up all day!

When I told Max that he’s handling this all so well, he said, “Mom, the only thing that’s changed is my mobility.”

I replied, “That is more than most people could handle.”

All he said was, “Mom, it’s just what it is.”

That little conversation caused me to take a deep breath. Max is not in a rush. He’s prepared to accept whatever he needs to accept. And sometimes, I think Max is ready to be done walking; he feels safer. I’m afraid he says he wants to walk again because he thinks it’s what I want to hear. His heart is that big. He loves me so much that he would try again just for me. But I love him too much to let him do that. I don’t appreciate that I might have put him in that position.

Max is a young man. He can talk for himself and make decisions on his own. Although he’s not a typical 17-year-old in many ways, he is in some.

This includes being old enough to lead the decision-making process regarding his physical therapy and ambulation. Of course, his dad and I will always be there for him to share our knowledge and help him decipher information, but he is mature enough to make decisions about his own care.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.