7 tips for traveling alone with my 3 sons who have Duchenne

I am traveling this week with my three sons who have Duchenne muscular dystrophy (DMD): Max, 18; Rowen, 15; and Charlie, 13. The four of us are in Denver for three days of clinical trial appointments and one day of cardiology appointments.

Other Duchenne moms are often surprised that I can travel with my nonambulatory sons, Max and Rowen, by myself. Although Charlie travels with us and uses a power wheelchair, he still walks and maintains a high degree of independence.

Because I have seven children, it’s tough for both my husband, Jason, and me to leave our home in Nebraska and travel with the boys to their medical appointments in Colorado. If we did, we’d either need to find a third caregiver for our other children at home, or take the other kids with us. Trust me, no one wants seven Vertins sitting in an exam room all day — not me, not the doctors, and not the kids.

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Furthermore, as our children get older, it becomes harder for them to miss school and other commitments. This week, our daughter Mary, 9, has softball practice, piano lessons, and church activities. Our son Chance, 16, has baseball practice and two games. They couldn’t get away, and we wanted at least one parent to be there for them, so we divided and conquered. Jason and I take turns between who stays home and who goes to appointments.

People are right to assume that traveling with three boys with Duchenne as a single parent is challenging — perhaps even more so for me, because I’m not as physically strong as my husband. Thankfully, we’ve learned some tricks that make it easier.

My top strategies

1. I travel with a Hoyer lift so that it’s easier for me to transfer my sons in and out of their wheelchairs. We drive a massive van, so the lift fits, along with all three boys and their power chairs. Bringing the Hoyer along makes a huge difference.

2. When I book a hotel room, I’ve learned to specifically request a bed the Hoyer lift can fit under.

3. Food doesn’t fix everything, but it makes things better. Maybe this is a no-brainer, but we’ve had plenty of experiences where we failed at keeping up with meals, and “hangry” (hungry and angry) boys do not mix well with long days at the hospital.

With three sons with DMD, appointments run all day long. We are often the first family to arrive and the last to leave. Our appointments almost always run behind schedule and into one another, so even if the itinerary shows a lunch break, we likely won’t get one. I buy groceries and pack a lunch for the boys and me that we can eat on the go.

Breakfast can be tricky, too. The boys like to sleep as much as possible, and because we always have early appointments, they won’t get breakfast at the hotel. But we often get to the hospital before the cafeteria opens, so I wake up early and bring them breakfast in the room so they can eat quickly without sacrificing sleep. I also pack granola bars and other breakfast-type foods in our backpacks.

4. I pack extra phone chargers and battery packs. The boys spend a lot of time on their phones, which prevents them from getting bored or fighting with one another, which makes my life easier.

5. We keep a loose itinerary. I like to do fun things during medical trips, but the boys get to call the shots. For example, we plan to go to the zoo today, but I’ll wait to buy tickets until our day at the hospital is over, in case they’re too tired and want to stay in.

6. If the boys are tired, I want them to rest. But I get bored sitting in a hotel room, so I make sure to pack workout clothes. The guys are old enough, and they all have phones, so I feel comfortable leaving them in the room to go do a 45-minute workout. It keeps me refreshed and reduces my stress.

7. It’s OK with me if we are late. If it comes down to being punctual or being 10 minutes late so that I can get a second cup of coffee, we’ll stop in the hotel lobby for another coffee. We did that this morning, and guess what? We still had to wait 20 minutes for our trial team once we arrived. I often tell the boys that the medical staff can’t start the appointment without us, and I’m always right.

A little bit of planning goes a long way. But mostly, I don’t sweat the small stuff. I let the boys rest when they need to, and I don’t let them get hungry. There’s no magic to it; we’ve simply had time to figure out what works best when traveling alone with the boys.

Note: Muscular Dystrophy News Today 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.