Theme: Travel

• Viajar con complejidades médicas pediátricas
• Necesidades médicas al viajar
• Viaje en avión
• Viaje en carro
• Embalaje
• Alojamiento
• Vacación cerca de casa

Theme: Travel

Traveling with a child with medical complexity can be challenging but with extra planning, a family vacation can be a memorable and enjoyable experience. Planning a vacation (and experiencing one) can strengthen family relationships. This guide offers practical advice on choosing a location, what and how to pack the medical supplies your child needs, tips for traveling by car and airplane, and what precautions to take should your child have a medical emergency while on vacation.

Theme: Travel

Summer officially begins on June 21st, and many of us are already making our summer travel plans. Our family will be traveling up and down the West Coast to visit friends and celebrate weddings. When he was alive, my son Colson was an intrepid travel companion with me and his daddy Jacob. Together, we visited many beautiful places in Oregon, California, Utah, Arizona, New Mexico, and our incredible home state of Washington. These trips were never relaxing, because serious childhood illness doesn’t take a vacation. However, they were often rejuvenating, because we were able to share new places and experiences with Colson, introduce him to important people in our lives that he may not have met otherwise, and create beautiful memories. Whether you’re planning a staycation close to home, or braving the roads and skies to go farther afield, here are a few considerations for your journey.

Check-in with your medical team: Colson’s specialty providers were always super supportive of us taking him on adventures, and we always made sure to check in with at least one of them about where we were going and what we planned to do. Often, they gave us things to consider based on where we were going. For example, when we took Colson to Santa Fe, his pediatrician helped me think of ways to help mitigate potential elevation sickness for him. It’s always helpful to have another perspective on our kids!

Have an emergency medical letter (or Anticipatory Symptom Management Plan): If you don’t have one already, request an emergency medical letter from your child’s provider. This is a brief document that explains your child’s condition and what responding personnel must do (or not do) in the case of a medical emergency. We had multiple copies of Colson’s emergency letter nearby at all times: in our car, in his bedroom, and in his diaper bag whenever we left the house. It gave me great peace of mind, especially when we were far from home. Speaking of…

Know where your nearest hospital is and how long it would take to get there: This may seem like common sense, but I’m not going to lie: I didn’t really think about this until we were in the middle-of-nowhere Arizona, driving with Colson from Sedona to the Grand Canyon. He was having multiple seizures a day at this point. It had been a long time since we’d seen another car on the road, cell-phone coverage was spotty, and I realized that if Colson had a medical emergency, I would have no idea where to go. This didn’t feel great and made me realize how much I took for granted having his regular hospital twenty minutes away from our home. (If you are traveling by car, check with your insurance or rental car agency about accessible roadside assistance options and be sure to specify if your child has mobility equipment).

Bring extra meds everywhere: Do the math on how much your child will need of each medication to cover every day and night of the trip. Then bring a few extra days’ worth – just in case. We often used our extra meds to either re-dose those that didn’t stay down and were very grateful to have them on hand when a flight home was canceled, and we ended up staying an extra day and night on a trip to New Mexico. Beyond packing extra for the trip, bring extra doses if/when you go out on daytime excursions during your trip, to allow yourselves as much flexibility in your timing as possible. And don’t forget the rescue meds. (If you are traveling by plane, the Transportation Security Administration allows you to bring the medications you need when you travel, in the quantities that you need – more on that here. You can also consider getting extra support to navigate the airport via TSA Cares.

Consider shipping items ahead of time: I know of families who would ship cartons of formula for tube-feeding to their final destination ahead of time, so that they wouldn’t have to lug it around in their car or on the plane. You could also do this for non-critical supplies like extra g-tubes or chuck pads, etc.

Have a back-up power supply for any critical equipment: If you have a feeding pump or cough assist or other equipment that requires electricity, see if you can get an extra charger to have on hand, just in case.

Don’t push yourself, or your kiddo, too hard: There’s an inevitable sense of pressure that comes with any travel adventure. You’re spending time, money, and energy – all incredibly limited resources as a complex caregiver – to do something special with your family. But your desire to have fun and make memories shouldn’t supersede your need for self-care and your child’s (likely) need for consistency in their caregiving routine. When we traveled with Colson, I had no illusions that he would deviate from his wild sleep patterns, so we didn’t plan any activities before early afternoon. Identify one or two high-priority activities for your family on your trip – the things you most deeply care about getting done in this place you are going. And then just let everything else emerge, leaving yourself and your child plenty of white space to rest or recalibrate as needed. 

Take pictures: Enough said. You can never have too many.

Jacob and I went to Yellowstone National Park last summer for a large family reunion. It was a trip we were supposed to take with Colson – something we had been planning on before he died. And while I was heartbroken that he wasn’t there with us to enjoy the splendor of our world, I was deeply grateful that we had made time and space to explore with him while he was here. Much of that exploration was in our own backyard – within driving distance of hospital and home. And all of it was wonderful. 

See CPN’s comprehensive Guide for Traveling here, with helpful forms and tips.

Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson. Colson, impacted by mitochondrial disease since birth, inspired Liz to face the complicated aspects of his life through writing and advocacy. Liz serves as a family advisor at Seattle Children’s Hospital, and is a volunteer ambassador for the United Mitochondrial Disease Foundation. She is committed to helping families find the information they need to help them live well in the face of life-limiting illness. You can find Liz on Instagram @mrsliz.morris

Theme: Travel

Traveling with a child with medical complexity can be challenging. But with a bit of extra planning, it is certainly doable! Join CPN, our partners at Brades’ Place and a panel of parents to learn tips and tricks to create your own roadmap to a memorable family experience. Learn about:

• Choosing a destination that works for your family
• Documents to prepare and take (many templates included)
• Packing dos and don’ts
• Tackling airline and car travel

Theme: Travel

Theme: Travel

I met my future husband Sherin in a London pub, hours after returning from India, and three months after fleeing the U.S. to avoid attending law school. I was getting ready to return home to Michigan in August 1991, having just arrived back in London after two weeks in India. But after a few dates with Sherin, I decided that I would stay a little longer in the UK, after all. This eventually turned into a year, with even more travels to Germany, the Netherlands, Belgium, Portugal, and France, until I was forced, by my visa limits, to return to the U.S. But I really knew by then that I would not go to law school.

We married in 1994, and I became a psychologist, which I always knew I wanted to be. We lived in London until 2001, until our first daughter Lucy was 3 and when I was pregnant with our second child. It seemed the right time to move closer to family, as our own family was growing. In July 2001, Ben was born in Pontiac, Michigan, in the same hospital my mother was born 57 years prior.

Sherin and I had spent 10 years traveling together (Indonesia, Saudi Arabia, all over Europe), and the last three with Lucy, who we took to India and Egypt. We didn’t expect our lifestyle to change with Baby 2. But Ben started exhibiting signs of what would eventually be named Schwartz-Jampel syndrome, a rare neuromuscular disorder, days after his birth. We did travel throughout the U.S., but our journeys took us to top hospitals in Ann Arbor, Baltimore and Boston, to figure out his diagnosis and to start a life of consultations and complicated medical procedures and surgeries. We managed fun trips whenever possible, carting respiratory and walking equipment and even ordering oxygen for long plane rides as needed, including back to London in 2004 to visit friends. However, a trip to San Francisco in July 2007 almost made us stop traveling forever.

First, one of our bags was lost. While I always tried to distribute durable medical supplies throughout our bags, this time there was one bag that held more stuff, such as tracheostomy suction catheters, than others. When we found out it was this bag that was missing, and which may or may not arrive on the next flight three hours later, I nearly fainted. It did arrive, and we managed to carry out our family vacation. On our return to SFO, however, TSA agents—despite one of the busiest, longest lines I had seen in any airport—made me remove the hip-to-ankle leg braces that Ben was wearing before I could walk with him through the metal detectors. While removing Ben’s shoes and clothing in order to take off these braces, while Charlotte, our youngest child at 20 months old, screamed to be held and hundreds of other travelers watched, I thought “I am never, ever doing this again”.

For four years, we didn’t step foot on a plane. This pained me, but I was steadfast. We purchased a wheelchair accessible van in early 2009, and from then on, if we wanted to travel, we did so by car, to Washing ton D.C., Orlando (with many stops along the way), Montreal, Maine, New Hampshire, Michigan, New York, Ohio and Pennsylvania. We even figured out how to spend a week at Sandbridge Outer Banks, near Virginia Beach, renting a beach wheelchair from a local company who delivered it to the house we were renting. It was hard to find enough fun things for Ben to do at the beach—city travels are more his thing because he loves learning about history and he prefers being inside (glaucoma and certain medications make sunlight pretty difficult for him to bear).  Yet we knew that some of our family’s travels needed to focus on our active, outdoor loving girls.

But after Sherin’s mother died, he felt the pull of Germany, and really wanted to take his now older children to see his mother’s homeland. I adamantly refused. There was no way I was going to suffer further humiliation and discomfort by airport security. He was patient in his attempts to change my mind, and finally, I acquiesced. To my complete delight, I realized that now, in 2011, traveling abroad was an easier, more disability-friendly experience than we had ever experienced in the United States. Ben was treated with respect. Accommodations were made for equipment, medicine was tested without fuss, and we were not rushed along. Lucy and Charlotte were escorted by friendly staff. People smiled. And no bags of equipment were lost, and no equipment was broken. I was finally able satisfy my hunger for travel, with all of my children in tow.

Since then, our family has tried to make one international trip per year, to England, Iceland, Norway, Switzerland, France, Italy, and yes, back to Germany. To some, this may seem decadent, but the cost is nearly the same as that of traveling in the U.S. when you rent a home through AirBnB or VRBO and are then able to eat two meals at “home”. We look for flights many months in advance and compare prices before settling on a deal. And with lower cost but reliable airlines like Norwegian (which we have flown twice), you can fly to Europe for the same as a flight to California (but we all know I’m not flying to California again). We never fly a U.S. based airline when going abroad. They have broken equipment on the way to other states, including during a short 1.5 hour flight to Detroit. We just can’t trust them.

Our experiences in these countries have been almost always welcoming, but Rome was tough. We knew it would be. Luckily Lucy, who was by then 16, was strong enough to help us lift Ben’s wheelchair, and we visited the Vatican museum in the early part of the trip before we were exhausted (the “accessible” Vatican tour means you miss most of the sights. Why travel all that way and not see all that art?). The walk upstairs/walk downstairs route of the Vatican tour was exhausting and must be for thousands of people each year. It’s not a wonder that we never saw one power wheelchair throughout Rome—it would never work, without curb cuts or over those crazy cobblestones—and the manual wheelchairs we did see often suffered hardships (we witnessed two men trying to put a wheel back on a man’s wheelchair).  But Ben, a Latin student, really wanted to go. Ironically, one of the oldest places in Rome, the Coliseum, has an elevator. But that can’t be said for most Roman sights.

Ben was also the force behind our Iceland trip, asking to see the Northern Lights. He requested to go in February one year, before major spine surgery. If you can stand sideways rain, you will love Iceland in February. It was indeed spectacular, and beautifully accessible, and whose body won’t benefit from the geothermal 104F degree silica springs? This was pure heaven for someone with a neuromuscular disorder. For a country of 300,000 people (200K in Reykjavik), Iceland has made universal design the hallmark of their land outside of waterfalls and volcanoes.  Ramps are seamlessly built into town squares and busy streets. If you don’t have an eagle eye for accessibility—which one gets after being with a loved one who uses a mobility device– one would never notice them.

We never thought we could top Iceland’s accessibility, until we visited Oslo and Bergen. It was the first place where we did all of our city travel by foot, boat, train, or bus. Without asking for special treatment, train conductors, captains and bus drivers would spot us in a crowd and escort us to the front of the line, allowing us to board before others. We were in travel heaven.

But in April 2017, we traveled to Berlin, Sherin’s mother’s birthplace. We had visited other parts of Germany on our previous trip in 2011—the Black Forest (not accessible), Freiburg and Konstanz (both gorgeous and fairly accessible). I’ve now termed Berlin the world’s accessible capital. Having rebuilt most of its city over the last 30 years, the people of Berlin have made their entire, extensive S-bahn and U-bahn train system nearly 100% accessible. The trains line up nearly perfectly with the station platform. Elevators are present at all but a handful of stations. And it was hard to find an inaccessible location anywhere. I found myself thinking of now 15 year old Ben’s adulthood. Could this be his prospective home? He’s a German citizen by birth through Sherin, and he speaks German fluently. This country, which committed the most unspeakable acts 75 years ago, might just be my son’s future.  

Traveling with Ben has allowed us to really experience a country’s and a culture’s attitudes towards its most vulnerable citizens. Psychologists often talk about “helping behavior”, which many countries we have visited exhibit through accessible planning and kind citizenship, thereby creating a culture of inclusiveness.  Nothing about traveling with physical and medical challenges is easy, but if you want to travel outside the U.S., you can’t go wrong in Northern Europe. Our girls would love to travel to tropical, adventurous places and they wonder why we can’t plan those kinds of trips. Accessibility is the answer, of course, and it does sadden me that a trip to Costa Rica or Mexico, with its challenging terrains, seems impossible. But Ben, who also studies ancient Greek, would love to visit Athens.  Sherin and I honeymooned in Athens and the Greek Islands. We backpacked through Santorini, Samos and Paros. We can recall that accessibility is not a hallmark of Greek design. Can we make it to Athens with Ben? Whether it is Athens, Costa Rica or Mexico, we should probably try to go, and soon, before we and Ben get older.