I’m traveling this week with my three sons, who have Duchenne muscular dystrophy (DMD): Max, 18; Rowan, 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 mothers are often surprised that I can travel alone with my immobile sons Max and Rowan. Although Charlie travels with us and uses an electric wheelchair, he still walks and maintains a high degree of independence.
With seven children, it is difficult 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 would either have to find a third babysitter for our other children at home or take the other children with us. Trust me, no one wants seven Vertins sitting in the exam room all day – not me, not the doctors, not the kids.
Also, as our children get older, it becomes increasingly difficult 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, practices baseball and has 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 alternate who stays home and who goes on dates.
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. Fortunately, we’ve learned some tricks that make it easier.
My best strategies
1. I travel with a Heuer lift to make it easier to get my sons in and out of their wheelchairs. We drive a massive van so the lift fits together with the three boys and their power chairs. Taking Hoyer with him makes a huge difference.
2. When I book a hotel room, I’ve learned to specifically ask for a bed that can fit the Hoyer lift 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 can’t handle feeding, and “hangry” (hungry and angry) guys don’t go well with long days in the hospital.
With three sons with DMD, appointments last all day. We are often the first family to arrive and the last to leave. Our commitments are almost always behind schedule and overlap each other, so even if the itinerary shows a lunch break, we probably won’t get it. I buy groceries and pack a lunch for me and the boys that we can eat on the go.
Breakfast can also be difficult. The boys like to sleep as much as possible and since we always have early meetings, they will not get breakfast at the hotel. But we often get to the hospital before the cafeteria opens, so I wake up early and bring breakfast to their room so they can eat quickly without sacrificing sleep. I also pack granola bars and other breakfast foods in our backpacks.
4. I pack extra phone chargers and batteries. The boys spend a lot of time on their phones, which keeps them from getting bored or fighting with each other, which makes my life easier.
5. We maintain a free route. I like to do fun things on medical trips, but the guys decide. For example, we plan to go to the zoo today, but I will wait to buy tickets until after our day at the hospital is over in case they are too tired and want to stay.
6. If the boys are tired, I want them to rest. But I get bored sitting in a hotel room, so make sure to pack workout clothes. The boys 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. I’m fine if we’re late. If it comes down to being punctual or being 10 minutes late so I can have a second coffee, we’ll stop in the hotel lobby for another coffee. We did this this morning and guess what? We still had to wait 20 minutes for our trial team after we arrived. I often tell the guys that the medical staff can’t start the meeting without us, and I’m always right.
A little 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 starve. There is no magic in this; we just had time to figure out what worked best when traveling alone with the boys.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. 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 doctor or other qualified health care provider with any questions you may have about a medical condition. Never disregard professional medical advice or delay seeking it because of something you 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 stimulate discussion on issues related to muscular dystrophy.
