My son had a horrifying fall and may never walk again

I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12.

Rowen stopped walking three years ago at the age of 11, after he fell and broke his lower leg. Of course, we did everything we could to encourage fast healing, as we had hoped Rowen would be able to walk again because he was young. He learned to take a few steps with help from my husband, Jason, and me, but he can’t walk independently.

That was a hard time for me, as I grieved everything Rowen was losing. I even lost a few people who were close to me because they couldn’t understand my profound grief.

In hindsight, I could see how much happier Rowen was in his chair. He started to participate more fully in our family and at school and began to find activities he enjoyed, like going for walks on nice days.

All of these things came from the security he felt in his chair, with no worries about fatigue or falling. And with the energy he saved by driving instead of struggling to walk, he went to more places and tried more things. Rowen’s quality of life improved when he stopped walking, which made it easier on my heart.

After parenting Rowen as he went off his feet, I thought it would be an easier experience with my other sons with DMD, Max and Charlie. I was wrong.

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Tragedy strikes

I am writing this column at the end of a tumultuous 24 hours. Monday morning started like most. We were all a little sleepy and still wishing it was the weekend. Jason got out of bed first, as always, and started waking our younger children to get ready for school. I got up, poured some coffee, and got busy preparing breakfast and packing lunches. It was our regular school-day routine.

Then I heard Max yell, my younger daughter, Mary, scream, and Jason gasp. The combination of sounds, especially my husband’s, made the hair on my neck stand up. I knew something was terribly wrong. I ran from the kitchen, dropping a bottle of ranch sauce.

Max was lying on the floor crying and scared. He had fallen. At that point, it registered in my mind that I had heard a pop. I blurted out, “I heard a pop. Oh, my God.”

Max yelled, “I felt a pop. This is bad.”

We went into crisis-management mode. I didn’t know we had one of those, but we do. We got Max up, stabilized his leg, gave him ibuprofen, and quickly finished getting the rest of the kids loaded up and off to school.

I stayed home, helped Max stay comfortable, and started planning the next steps. We decided on the hospital rather than the doctor’s office. We got our emergency information card from Parent Project Muscular Dystrophy, made sure we had an updated list of medications, and were out the door as soon as Jason got home.

A series of X-rays confirmed that Max had a step-off fracture on the end of his femur, and an examination made the ER doctor very suspicious of ligament damage to Max’s knee. So we have a follow-up appointment with an orthopedic surgeon to see what else is going on and how to move forward.

Suffocating grief — again

Max will probably never walk again. He was in a late ambulation stage, and we all knew it was a matter of time — less than a year — before he would stop walking entirely. I had hoped it would be his decision to do so, and that he would know he was too tired and stop. I never wanted a fall or a traumatic injury to be the deciding factor.

We are in the beginning stages of starting again — relearning how to help Max in every way. He is wearing a brace nearly as big as his leg, can’t bear weight, and can’t bend his knee. He is in pain, and it is hard for us to lift and transfer him because it hurts when he moves.

I was wrong — I thought it would be easier watching my second son go off his feet. It’s actually more challenging than the first. It is soul-crushing.

I haven’t cried in front of him yet, but plenty of tears have streamed down my face.

We will figure this out. We always do. But I’m taking a day to be angry and sad and grieve for the life that my son knew when he could still walk. Because his life changed in the snap of a finger, I’m sure we will find the blessings, but today I am not looking.

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.