A memory reminds me I can be brave in the face of DMD
A columnist feels empowered after reflecting on a trip to LA with her boys
A couple weeks ago, as I was looking through social media, a memory from several years ago appeared on my timeline. I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. In May 2019, the boys and I traveled to Los Angeles to have muscle biopsies done as part of a study they were participating in.
It was a stressful week. My husband and I had planned to take the boys together, but we had to change plans at the last minute, and I went alone.
I had traveled by car with the boys on my own before, but never by airplane. It’s not easy to travel with one wheelchair, so you can imagine the struggle of having three little boys with three mobility scooters. It was tough.
When we arrived, the car service that had been arranged for us sent two vans, expecting me to send one of my young sons alone in the second van in a large city with a perfect stranger. On that day, it was all I could do not to cry. I made them put the three scooters in one van, and I traveled in the other with the boys.
But, like everything we do with our three sons with DMD, it was an adventure. I was exhausted on that trip, but the boys, who had never been anywhere like Los Angeles, wanted to see the sights. They were adamant about going to Hollywood and doing all the touristy things.
But we were at least 45 minutes from Hollywood, and I had no car. When I think about it now, I wonder what in the world I was thinking, but I said we’d go. We ordered an Uber, and after chatting through the app with the driver, he confirmed that he could get us there with the scooters. However, there was no guarantee we’d have the same luck on our return trip.
Still, we saw the sights and ate a great meal. The boys took a picture with a Freddy Krueger look-alike, and we stopped to take photos with all the stars on the sidewalk that had names we recognized. We have so many memories from that trip, most of them happy, and I’m glad we did it. And after talking with a few different drivers, we did end up finding a ride back to the hotel. Of all the things the boys experienced, what they remember most is how friendly that driver was.
Reminders of my bravery
When I think about the trip, I remember being brave. Trust me, I was scared and nervous — a small-town Nebraska girl in LA with three boys with DMD! But I didn’t let the fear or nerves stop me from taking the boys on a grand adventure.
Since that trip, their disease has progressed. The first half of this year has been especially difficult.
My oldest son, Max, fell and broke his femur. He has since stopped walking. Shortly after, as we tried to transfer him from a car to his wheelchair in the rain, his cartilage tore away from his rib. For him, it was painful, but for his dad and me, it was a reminder of how fragile our sons are.
Additionally, as I shared in a recent column, my middle son, Rowen, has experienced so much disease progression that he’s losing function and is no longer strong enough to help with transfers.
I know that living with DMD is not easy for my children. As a parent, it’s hard to watch what the disease is doing to them. And there have been days in recent months when I have cried and been frustrated and even questioned my faith. But as we adjust, and I accept what is becoming our new normal, those days are fewer.
When the memory of the boys and me in LA popped up, I remembered that I am brave. I’m scared and anxious, too. But I am brave enough to do this, no matter how hard it is or how many unknowns there are, because I love my sons. And I know we will have more adventures together.
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