Rare Parenting: Traveling with Chronic Illness and Children

By Elizabeth Paddock

It’s that time of year! School is out and summer is in! For many people, summer is the perfect time for a family vacation. We are no exception. Because of my illness I stay at home and my husband is a teacher, so for two glorious months every summer we are a two-stay-at-home-parent family! We use to take big trips when my husband got out of school for the summer. We’d sublet an apartment in Los Angeles, pack enough stuff to last us six or eight weeks, and off we’d go! As my illness has progressed, travel has become increasingly difficult. Our trips have become shorter, our transportation and destinations more carefully selected, and we have to do a lot more planning ahead. But it doesn’t mean we can’t enjoy a summer trip.

Sure, traveling with a chronic illness AND children in tow is a challenge, but with some extra planning and careful consideration, you can still enjoy a special getaway with your family! Here are some tips and tricks we’ve learned along the way:

• Plan ahead. I know it seems silly as most people already plan ahead for the big things. But I’m talking about the little things- the things healthy people take for granted and just don’t have to think about. Have you looked for bathroom stops along your route? Did you search for any restaurants that might cater to your dietary needs? Have you selected flights that work with your medication schedule or your children’s nap schedule? Does your hotel have a refrigerator for your medications or special foods? Look in to everything you can ahead of time!
• Consider an extra set of hands. Depending on the trip, you might want to consider inviting Grandma and Grandpa, a sibling or a friend. My parents and mother-in-law are often happy to accompany us on big trips. We get the benefit of extra help and they get to enjoy special time with their grandkids. Making memories with extended family can be a win-win for everyone!
• Check your insurance and look for local doctors. Always check with your insurance to know your coverage when out of network. For those with rare illnesses, it never hurts to try to identify a doctor local to your destination who is familiar with your diagnosis. Facebook support groups and pages such as Global Genes can help you connect with people local to your destination. I always travel easier when I know I have some kind of medical contact wherever I will be going, just in case.
• Be sure to refill all of your medications before you leave. Make sure you have plenty of medication to cover any delays in returning home. Talk to your pharmacist about getting insurance approval to refill early if necessary. Also talk to them about what to do in case of an emergency as most chain pharmacies have locations throughout the US (Plan ahead- find the pharmacy you’ll be closest to at your destination!) If flying, be sure to take ALL of your medication in your carry-on and have them in their original bottles to avoid any delays when going through security.
• Pack wisely. Let’s face it, packing for a vacation with kids is no easy feat! But throw in a chronic illness and now it is really quite the challenge. From medications to medical equipment, you might have lots of extra stuff to pack. So pack wisely. Keep the things you need accessible in a small bag kept by your seat in the car or in your carry-on. Save things you know for certain you won’t need while traveling to be buried in the trunk or as checked baggage.
• Keep a travel bag AND an emergency bag. Most airlines let you bring a carry-on and a purse-sized item on board. Use one as a travel bag and one as an emergency bag so you don’t get stuck sifting through bags of kid snacks and toy cars while searching for your medication!
• The travel bag: This is a staple for ANY parent traveling with children. Pack enough healthy snacks to make sure the kids are covered in the event of delays or a missed meal. Pack a change of clothes for everyone in the family- because who knows! Also pack a handful of gallon sized-zip lock bags to have if you end up with a sick kid or as a place to store wet or dirty clothes. And then fill the rest of that bag with entertainment- books, toys, crayons, papers, headphones, enough to keep your kids busy! Movies are a favorite go-to for keeping kids busy while driving or flying- but the rule in our family is no screens for trips under three hours- so we always stock up on new coloring books, sketch pads, a fresh box of crayons or colored pencils and a few new songs on iTunes!
• The emergency bag: This will vary depending on your illness but should include medications, any necessary medical equipment, and paperwork that clearly states your illness, your medications, contact information for your doctor(s) and family members, and what to do in case of an emergency. Traveling or not, I keep a folder labeled “In Case of Emergency” in my purse at all times with this information. Make sure it is easily accessible for your spouse, travel partner, or anyone else in case of an emergency. Also, be sure to pack any safe snacks and plenty of water in your emergency bag.
• Check your airline’s disability policies ahead of time. When booking airline tickets, most airlines have a place to click to identify special needs such as if you will be bringing medical equipment or will need a wheelchair to get to and from the gate. Look into these policies and be sure you understand them so there will be no surprises at the gate. It doesn’t hurt to print them out in case you have to reference specific policies once at the airport.
• Use assistive devices! Your family vacation is no time to prove how strong you can be. If you don’t usually use an assistive device like a walker or a wheelchair but such a device would make things easier for you- use whatever you need! If you are flying, be sure to call the airport or your airline to arrange for a chair to be there for you when you arrive and call ahead to destinations to see what devices they have available for rent. Check with museums and theme parks as well!
• Give yourself extra time. Always! My husband loves to squeeze in as much as possible when we travel. I get it, and I wish we could still travel like that. But between my illness and the kids, I always have to allow for extra time because I never know what might come up (and something always comes up!)
• Relax and enjoy your vacation! You’ve planned ahead and you’re fully prepared, now it’s time to relax and enjoy! Focus on staying present and in the moment with your family. Travel and special trips are difficult for many of us and we may not get to do these special things as often as we used to or as often as we’d like to. So put your phone down, let go of as much stress and worry as you possibly can, and enjoy the time with your family!!!

What are your tips and tricks for making travel with a chronic illness easier? Please add to the list if you have a special tip that helps you enjoy vacations with your family!

About the Author |  Elizabeth Paddock is a mother, wife, and writer from southeast Michigan. With a master’s degree in clinical social work, Elizabeth has been a stay-at-home mother of identical twin boys for the last six years which has allowed her to focus on her family and her health. Elizabeth has a primary diagnosis of Mast Cell Activation Disorder along with secondary diagnoses of Postural Orthostatic Tachycardia Syndrome and Joint Hypermobility Syndrome. For more information on mast cell disorders, please visit The Mastocytosis Society at www.tmsforacure.org.