By Bethany Hildebrandt
Hi I’m Bethany Hildebrandt and I am a “veteran” disability mom. You never get things totally figured out, but my 16-year-old daughter has cerebral palsy, so we’ve been parenting through medical complexities for a while now.
My husband and I have been married for 18 wonderful years of joy and grief. In addition to our 16-year-old Kaylee, we also are parents to Eli who is 8 and Madilyn who is 4. I mean I guess most people would like to travel right? It gives you an escape from your daily routine and a break from constant responsibilities. No one deserves this more than a special needs family. We countdown to holidays, we countdown to special occasions, we absolutely countdown to vacations and it’s all because we want something exciting to look forward to that keeps us from dwelling on the hard days.
Of course, disability parents have lots of hard days, which is why I think it’s so important for families like ours to prioritize travel. Unfortunately, we probably, as a disability community, travel less than anyone. I know it can feel daunting or impractical, especially when there’s so much equipment, medication and stuff to take. There are many variables and what ifs but my goal is to encourage you that it’s worth it even though it’s not easy. There are not many things in our lives that are easy anyway so we’ve learned how to do hard things and this is just one more thing we can learn to do for our happiness. I know it’s easier just to stay in the zone of caregiving, but if your child is cleared medically, a getaway can be very healthy for your mind, emotions and soul.
Travel doesn’t have to mean a continent away. If you’re ready to embark on one of your first trips as a special needs family, begin with a day trip to a local aquarium or museum. Spend the day and see exactly what items would be required for you to be away from home for an extended period of time. Assess possible obstacles you could be presented with. Determine what type of schedule is sensible while away from home. See where flexibility can be allowed and where it cannot.
Once you’re confident in being away from home, try an overnight stay in a neighboring town. Sleeping away from home is quite different when it comes to medical complexities. That’s why starting out small and seeing what works and what doesn’t is smart before you try being further away from home. I like that, while hopefully unnecessary, you have the option to go home at any time when you stay locally. This allows you to see another layer of packing needs and schedule adjustments when you stay overnight in a new environment.
I have found in travel planning, one of the most difficult aspects is finding destinations that are suitable and accessible. Unfortunately, most websites don’t elaborate on accessible accommodations or inclusive attractions. The best way I’ve found to navigate the lack of information is to follow other special needs families who travel on social media to get their recommendations. I use blog searches and watch video walk-throughs when possible on YouTube. Sharing our experiences in the disability community is super important in empowering fellow families.
In all my research and experience, Disney World has been the most accommodating destination for us. They are world-class when it comes to inclusion and accommodations. It seems as though we can most closely replicate what we do at home at Disney World, and there is an overwhelming amount of staff willing to aid us. They truly do accommodate all types of needs including mobility, sensory, communication and more. They’re actually trained to be aware and seek out families like ours to assist and spoil them with fun and gifts. They call that Pixie Dust. The employees, called cast members, are even required to take classes on how to serve families including disabled guests.
A close friend who previously worked at Disney World said they were taught this concept, “Special needs families come to Disney to escape the daily struggles of a difficult life and we are here to make it as magical as possible and carry just a little of the weight while they’re at Disney World, however we can.”
That is literally the dream for a medical family! I absolutely recommend Walt Disney World or Disney Land if you’re wanting to travel with your disabled family member. You can also apply for Make A Wish, which is an organization that grants wishes to chronically ill children. Many wishes are spent at “the happiest place on earth” where they have an entire campus devoted to medical needs families (Give Kids the World).
Even with a list of struggles to overcome, it’s still important to me that we travel together, that we bond in shared experiences. I want my children (all three) to enjoy the beautiful childhood I had, that included travel. I want to see things freshly through their eyes and listen as they describe experiences and sights. I want to allow our family to be removed from the heaviness of daily routine and transplanted into an adventure that makes them forget any hardship we regularly endure. I want Kaylee to feel included in all things, all places, in as many ways as possible and I want my typical children to see that nothing stops their sister from having a full life.
Our lives may be very different from most, but it shouldn’t keep us from enjoying God’s creation and the wonders that are a drive or flight away. There are plenty of reasons why a medically complex family would skip vacations, but maybe you should fight for it anyway. Don’t write it off as impossible without entertaining options. Having a plan, a back up plan (and a just in case plan LOL) and enlisting loved ones to come along when possible can truly make travel feasible for nearly anyone.
It’s not easy, but it is worth it! And for those of you currently in survival mode—of course, traveling isn’t front of mind, but a time will come when you have your bearings and may feel ready to try new experiences. When you do, take a trip! Make memories! Enjoy life beyond limitations and when possible—share the journey with others!
Find Bethany on her website or visit her IG at: https://www.instagram.com/bethany.hildebrandt/?mibextid=Zxz2cZ