Day 14 of 1 A Day in May Raising Awareness with Tay
Day 13 of 1 A Day in May Raising Awareness with Tay
Day 12 of 1 A Day in May Raising Awareness with Tay
Day 11 of 1 A Day in May Raising Awareness with Tay
Day 11 features a guest zebra...my 14 year old niece Nikita! She shares her own drawing and sentiment to help raise awareness in May.
Click, copy, and share! My niece, Nikita, joins the ranks
of sharing her one a day expression of what it's like to have EDS in
addition to sharing her artwork. If you would like to use these for your
own web page awareness, you are welcome to copy and share. We know not
everyone with ehlers danlos syndrome has the same struggles or symptoms,
but this may speak to some of you. Check back for more days, and we'll
do our best to put up 31.
Day 10 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks of sharing her one a day expression of what it's like to have EDS in addition to sharing her artwork. If you would like to use these for your own web page awareness, you are welcome to copy and share. We know not everyone with ehlers danlos syndrome has the same struggles or symptoms, but this may speak to some of you. Check back for more days, and we'll do our best to put up 31.
Day 9 of 1 A Day in May Raising Awareness with Tay
Click, copy, and share! My 14 year old Zebra is going to join the ranks of sharing her one a day expression of what it's like to have EDS in addition to sharing her artwork. If you would like to use these for your own web page awareness, you are welcome to copy and share. We know not everyone with ehlers danlos syndrome has the same struggles or symptoms, but this may speak to some of you. Check back for more days, and we'll do our best to put up 31.
Day 8 of 1 A Day in May Raising Awareness with Tay
Day 7 of 1 A Day in May Raising Awareness with Tay
Day 6 of 1 A Day in May Raising Awareness with Tay
Day 5 of 1 A Day in May Raising Awareness with Tay
Day 4 of 1 A Day in May Raising Awareness with Tay
Day 3 of 1 A Day in May Raising Awareness with Tay
Day 2 of 1 A Day in May Raising Awareness with Tay
1 A Day in May Raising Awareness with Tay
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.
Publication link from AllEars as Guest Blogger.
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