Traveling with Duchenne: A 6-Week Cross Country Road Trip

A diagnosis like Duchenne can force you to do things you may never thought you’d be doing. Good things, and difficult things. A diagnosis changes you. It influences the decisions you make, and often can require a bit more of you, both physically and mentally.

My husband, myself, and our four kids (Hans 8, Otto 6, Fritz 4, Ingrid 2) currently find ourselves on a month long cross country road trip. Four weeks ago we loaded up our mini-van in Arizona and headed east; stopping for a week in Nebraska, then Ohio, then Connecticut, and now Wisconsin. We then plan to see South Dakota, and Wyoming, before rolling back into our home state.

As our van treks through cornfields, or up and down mountainous terrain, and I soak in views that are so different from our normal, I can’t help but to wrestle with gratitude. Wrestle, because I know the Duchenne diagnosis of our third son, Fritz, is the reason we are on this trip. The combination of out-of-state doctor appts and the opportunity to attend some Cure Rare Disease Fundraisers is where such an idea, and kinda a crazy one at that, was born. Only then to be fueled by the prognosis of Duchenne. Knowing time is not something we have a lot of, equipment for Fritz is limited at this stage, we can often feel this obligation to take advantage of every opportunity to make memories. So here we are, 70+ hours in the van half way through an incredible adventure. 

I wrestle though, because I will never be grateful for Duchenne. I can’t be. What it does to my son and other boys is far from okay. But as we cruise down interstate 90, I am filled with gratitude; grateful for the places we’ve been, the people we’ve met, the perspective we’ve had, all the while knowing Duchenne is ultimately what took us to these new places to meet these new people. In the end, I know Duchenne has forced us to view life with a different lens, and while it’s not something I’m grateful for, I want it to bring just as many good things as it does difficult ones, which is why we said yes to such an adventure in the first place. 

Anyways. As stated before, Duchenne changes things. 

So below are some things we’ve found helpful as we roadtrip with a young boy living with Duchenne.

Tips for Traveling with a young kiddo living with Duchenne

FIRST AND FOREMOST. We refer to every trip as an adventure, NEVER a vacation. The term adventure sets our bar of expectation at an appropriate height, and helps us tame potential frustration that will naturally occur when traveling with 4 kids!

We also are very intentional and constantly redirecting our focus to be in the NOW, living presently. We have found that if we give too much thought to the idea of: “would these experiences now even be possible in the future?” or “how would a trip like this 5 years from now look different?”  steals joy that deserves to be had now. We travel to make memories together, now, to make the most of the time we do have, now, so we do all we can to redirect any thoughts we have about anything other than that!

Medicine: 

-We use a weekly pill organizer and set it up every Sunday.

-Setting an alarm on our phone helps remind us each morning to give Fritz his medicine as we are out of routine and changing time zones.

-We make sure to bring plenty of extra medication and store all of his medicine in an extra little travel bag that we often set next to a coffee maker, so we see it and remember right away in the morning.

Diet

-No added sugar + low sodium: we do our best to keep to this while traveling, but we also know its not the end of the world if we have a bad day here or there.

-Instead of driving through Mcdonalds, we often will stop at a grocery store and pick up fresh fruits, veggies, cheese, and other various healthy alternatives for creating a little picnic on the go.

-When driving, we always bring a travel ice chest and travel ice packs so that we can keep fresher food at a proper temperature. This also helps when we opt to do a small grocery run, instead of a fast food stop, so we can keep snacking on and use it for more than just one meal as we travel.

-I also have purchased reusable snack bags that we use to “dish” things up on the go. 

-Some of our favorite low sodium + no added sugar snacks for the road are:

-String cheese

-Berries, Apples, bananas

-Cut up Peppers

-Carrots

-Pirates Booty

-Plain Cheerios

-tortillas + peanut butter

-These snacks also make great additions to a meal when Mcdonalds is the only place to stop, we can get by with a burger or nuggets, and eat some things from the list above to help add a little balance.

Equipment:

Kids Car Seat footrest: this footrest of amazon has helped make life in a car seat for many hours at a time more comfortable for Fritz. 

Freeloader Carrier: This kids carrier holds up to up to 80lbs. The sleek and light design makes it very easy to pack, taking up little room. Having this on hand allows us to explore a lot more because we aren’t dependent on paved paths for a stroller/wheelchair. (Use code fritzandfriends10 for 10% off your order PLUS 10% will be donated directly to Fritz&Friends)

Stretching:

-At home we have a pretty consistent bedtime routine that typically starts with stretching. However being on the road obviously makes this more difficult as most routines are out the window. So we try to get creative, finding windows of opportunity here or there to get a stretch in. Wrist stretches really can be done anywhere!

-Rest, or down time is a priority, even as we travel. We know that Fritz, and really all of us, benefit when we take time to rest. It’s kind of a quality over quantity approach to our adventures. As we plan our days we are intentional about not packing our days full with one activity after another. We typically plan activities for the mornings and make sure we use time after lunch for resting. Whether it’s a nap, reading books, watching some tv; we build in time to our schedule so Fritz, and all of us, can rest. This time can also then be used as a window to squeeze in some stretches.

We know Duchenne changes things, but more than anything we want it to fuel what we do instead of prevent us from doing!

It can take a little extra work, and sometimes add a little extra stress, but I can honestly say there has never been a trip we have regretted taking!