You’re Stronger than you Seem

by Laura Schmitt

“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - AA Milne” Christopher Robin says to Pooh Bear, as they sit side by side. This bear of little brain may not ever bounce high like Tigger, or soar like Owl, but he is always a source of love and strength for the entire hundred acre wood family through his constant simplistic loving nature.  Pooh, fluff protruding and stitches popping, manages to pull together an unlikely cast of characters and hold them with the most important strength of all...love and friendship. If we looked at Pooh Bear, we may only notice a worn stuffed toy, but if we focus on the heart of the character, we can find ourselves tumbling into a wealth of strength that bounces and soars. It is because of this bit of magic that we all learn to look deeper while we search for surprises in the world of Disney. Like Pooh Bear, my oldest child hides an extraordinary strength that others will not see by looking with their eyes, but anyone who knows her will experience and appreciate what that really looks like.

10 years ago, a Mom, Dad, 6 year old girl and her 4 year old sister visited Walt Disney World for the first time and during that visit, the 6 year old marveled with astonishment at how large Piglet was in person, and how lovely it was to run through the hundred acre wood in real life. All smiles, gasps of astonishment, and laughter, we delighted with such extreme during that first visit that we went back to Walt Disney World 9 times in the decade that followed. Life brought us many changes during that time period, and the most notable for my daughter was the introduction of her disease. Our daughter was diagnosed with Ehlers Danlos Syndrome (EDS), a disease of the connective tissue that affects the entire body. For her, this meant a deterioration of her joints and daily shoulder dislocations that have progressed to hip subluxations and fainting. Life has turned upside for all of us as we try to smooth all paths for a child who could no longer bounce her way through life.

As EDS has claimed more and more of our child, we found that in Disney World, the magic is ‘one size fits all’. When she could no longer walk, or ride jarring rides, or stand for long periods, we found that in the parks, and with a wheelchair, she could still be that strong little bear who delighted at a towering Piglet and lit up at the site of a real life castle. Disney offers it magic to everyone in the same loving and inclusive way that Pooh Bear embraces Piglet. He doesn’t look at his frightened little friend and think “this won’t be for you”. Instead, he stands by him and they travel each path together. Disney manages this is by allowing access to disabled people through cleverly designed park spaces, handicapped entrances, and wonderfully trained cast members across the parks. The system for transferring to and from a wheelchair is as graceful and easy as stepping in and out of a ride when working with the incredible cast members.  Even the entertainment comes in bursts of spectacle geared for any body ability. There are new amazements to enjoy, experience and encounter with every new trip to the parks.

Planning for a visit Magic Kingdom over a very busy spring break, we plan ahead and go into park for an advanced dining reservation before park opening. This helps our daughter by letting her avoid that large and incredibly frightening crowd upon entering the park. We glide from a wonderful breakfast straight to the honeypots that tour us through Pooh’s magical storybook, and laugh the whole time.  I don’t know if she remembers her early years of story time on my lap, as we read this very adventure day after day, or if she her own readings of AA Milne are fresher in her mind, but I watch the words falling from the pages and marvel that we are back in the story, again.

Because the park is flat, and the lines allow the width of her chair, it is easy for us to navigate with her confined to her safe space. From that ride, we move on to other family favorites, all accommodating for her abilities, such as Haunted Mansion, Philharmagic, Pirates of the Caribbean, The Laugh Floor, and more. If she has enough energy to stay into the afternoon, we watch the parade from the safe wheelchair designated space roped  off by cast members, and maybe even enjoy some dairy free root beer floats from Main Street.

It can be hard for a bear of little brain to “think, think, think”, and in the stories, we find Pooh frustrated that he can’t remember what he set out to do. For my daughter, it’s hard to see eyes on her for being in a wheelchair. She feels like people are judging her, or wondering what is wrong with her, which from natural curiosity, they may be. You see, she can stand up, and walk for a bit, and everything will look completely normal. She does not look like she has a disability. What others can’t see if that as she freezes and grimaces, her shoulder has slid out of it’s socket, or her hip has subluxated partially out of it’s socket. She concentrates on putting it back where it belongs without further injury, and this happens so many times each day, we have given up keeping count. Another thing they cannot see is the blinding, burning, and sometimes numbing pain. Because May is Ehlers Danlos Awareness month, I wanted to share this with our fellow Disney fans. Like us, you may embrace the parks, the movies, the magic, and we may even see some of you at Magic Kingdom on a day in the near future. I’d ask that you remember that not all disabilities are visible.

Despite the pain and struggle my little bear faces each day, she shows remarkable strength. She doesn’t know it. She meekly thinks of herself as a scared and timid little piglet, in many ways, but the fact that she perseveres through pain, dislocations, and fainting sessions, and keeps moving forward is enough to make me cheer for her every day, “You're braver than you believe, and stronger than you seem, and smarter than you think.”! At Disney World, where she is included in all aspects of the magic, her laughter soars and her smile bounces throughout our time away. The magic in the air is almost healing, in a way, because she seems lighter and happier where it is so easy to be immersed in good times with family, and old storybook friends.  There is no cure for Ehlers Danlos Syndrome, but we keep hoping that the marvels of medicine will come up with something in her lifetime. If Disney taught us anything it’s that anything you can dream can come true, so we keep raising awareness, dreaming big, and savoring our magical moments together whenever and wherever we find them.

10 years after their first visit to Walt Disney World, a Mom, a Dad, a 16 year old girl and a 14 year old girl are heading back to their favorite, inclusive, and magical place. The very first thing they will do is stop in for breakfast and a hug from their favorite storybook friends at Crystal Palace. You may even see them as you go about your own magic sort of day. You can be certain that “wherever they go, and whatever happens to them on the way, in that enchanted place... they will always be playing. - AA Milne”

Publication link from AllEars as Guest Blogger.

Walt Disney World with Ehlers Danlos Syndrome

I'm curious to hear from you if you have tackled this park with the concern of joint dislocations on getting "bumped" in the crowd. Also, I am curious if a ride has been too rough at a park like this? We have been to Walt Disney World many times.  We avoid the thrill rides and we take long breaks and stop to smell the flowers, but the last time we went we required a wheel chair. I found that this allowed kiddo to participate much longer and it gave her a safe space. When just walking, she can't get very far before her hips, knees, and ankles are too fatigued and with her current and ongoing shoulder instability, the fear of getting bumped is a worry. Please comment with your experiences. I would love to hear how you navigate the "World".
:)

Here are some of our family tips and tricks that we have picked up along the way:

• Go early, take breaks, and don't do it all. The way I figure it, anything we don't cover on a trip is a good reason to go back! It isn't fun if you over do it, and we so often find magic in the unplanned moments in Walt Disney World.
• Go on "green" days. Sites like EasyWDW and Undercovertourist give you advice about which parks are less crowded on which days, and I find that is a good way to travel the parks.
• Use a wheelchair, ECV, or stroller if needed! If walking is not an option for you due to instability of joints or other Ehlers Danlos complication, then take that tool and use it. Also, the extra space it provides you will serve as some protection from getting bumped in the crowds. 
• Wear good shoes. This should be obvious, but orthotics and support are essential when doing walking on a trip like this! Don't let fashion trump smart footwear in this instance.
• Plan ahead. It is very helpful to know what route you will take, what basic rides you want to do, and to schedule your FastPass Plus options in advance. Have meals booked in advance so you have spaces to sit down and rest. We find the long, slow, Disney meals to be a wonderful break from a busy morning or afternoon at the parks.
• Bring ice packs in a small cooler, or instant ice packs. Know where the med care centers are (on the map), and bring required medications in properly labeled containers. Bring any supports you may need.
• Don't park hop. Some may disagree with me on this, and I will say that the exception will be if you go to a park in the morning, take a nice afternoon break at your hotel, then do a second park for a show that night. That is OK, but going from one park to another is adding a lot more walking and travel to your day. I generally plan a day with the minimal amount of back and fourth travel. We will spend a Magic Kingdom afternoon break at a close by monorail resort for a long, slow meal, and a rest by the water before going back to a park. A swim or nap at the hotel is also good. By running from park to park during the day, however, you can wear yourself out just in the process of getting from transportation to the first ride, so I do advise avoiding that when you can.
• Get plenty to drink, stay hydrated, wear sunblock, and follow all the general precautions that would apply to anyone traveling at Walt Disney World.
• Avoid the rougher rides if you can't handle the jostling. For us, the thrill rides are out because our kids are scared of them, but even if they weren't scared, I know my oldest couldn't ride a rough roller coaster, safely. Luckily, Disney has many sit down shows, calm rides, and simple experiences that are still magical without the jarring. 
• GAC card, do you need it? That varies from person to person.  We have not felt the need to use one. When you have a wheel chair, the staff at Disney knows what to do with you and they don't need to a GAC card. If you have a unique accommodation that needs to be made, then it may be right for you. 

So, an average morning for us is to get up early, go to a park before it opens and be among the first in line. We hit our favorite rides, in order that makes sense, and we utilize fastpass plus. We stop for breaks, snacks, shows, or a long lunch. Generally, we are ready to leave the park shortly after lunch and take a break at our resort, or at a restaurant. We can then go back to a park for an early evening show or a few rides with fast pass. Our kids can't make it up to the late shows and they haven't made it up past 9pm on any Disney night in the past few years, so we are early to bed and early to rise. If you are the opposite, you can adjust accordingly.

 As for those unplanned magic moments, there truly are many reasons to go slow. The themes at Walt Disney World are what make such a difference. By going slow and looking at the details, you can uncover magic that is often overlooked. Talking to cast members is often fun and enlightening. I remember during one of our first trips, a cast member noticed our daughters love of reading and she came out of her store and brought a story book. She sat down and read my daughter a story right there in the park, and while that may not sound like much, for my little bookworm, being told a story in that setting with a smiling member of the Disney team was a very rewarding moment. During a different trip, my youngest was so tired, she fell asleep on my lap on a bench. I sat and watched the people go by, saw the show in the distance, and just enjoyed a beautiful day. Once, we stopped to visit the dolphins at the Epcot aquarium and they came right to the glass an interacted with our kids. There are so many moments of surprises and fun that we never would have planned or enjoyed had we been focused only on the rush from point A to point B.

Want to read more? Here is a published article on going through Walt Disney World in a Wheel Chair with EDS. Click here to read . 

Does EDS affect your digestive system? Add travel into the mix and no doubt you have concerns. We have posted many of our meals and photos of the foods we've eaten in Walt Disney World as well as Disneyland online, here. Everything we eat, due to allergies, is gluten free and dairy free. Disney does a great job catering to allergies and diet restrictions due to health issues. Click here to read more.