My son had a horrifying fall and may never walk again
DMD disease progression leads to a traumatic leg fracture for this columnist's son
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.
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.
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Fernando de Querol
I can only send you tons of support, and our prayers. We can´t find an explanation for this, God knows.
They need you, and they need your husband. I also have an MD (not Duchenne) and the last time I fell down the doctor said that walking was over for me. Well, he was wrong then. But it will come, sooner or later. My sister is in a wheelchair and I will be.
For the time being, love is the only cure. And you have plenty of that.
This is very sad news. It must be dreadful watching this happen to your children it made me very very sad to watch my own brother over the space of about 2 years lose his mobility and fall repeatedly I used to be so nervous for him every time we went out but of course there was nothing I could do and he was fiercely independent. Now my my Becker muscular dystrophy is beginning to affect ME. I have a heart problem with heart failure and cardiomyopathy but now when I go out or even around the house I'm anxious about falling over and hurting myself. I'm struggling to hold on to what mobility I have a user rollator all the time I'm but I do worry at an accident is just waiting to a care and I fear as lack of mobility very much. My brother's plight and NY own make me very angry. There are no blessings with this horrible disease.