I’ve Got No Strings

“I’ve Got No Strings to hold me down
To make me fret, or make me frown
I had strings, but now I’m free
There are no strings on me

Hi-ho the merry-o
That’s the only way to be
I want the world to know
Nothing ever worries me”

Oh my sweet, sweet son, Gabe.  He truly encompasses this song.  Never one to truly complain unless he is in immeasurable pain.  He was born with a condition called joint laxity.  To sum it up, his joints are very loose, making him extremely flexible.  While that is great in some ways, it isn’t great if it affects your hips, knees, ankles, and feet.  At this point, in his nine years, Gabe doesn’t require full leg braces, crutches, or a permanent wheelchair.  We have gone to therapy for six of his nine years.   Before I get too far ahead of myself, while Gabe was born with this condition, we didn’t “know” he had THIS particular condition until after a trip to Disney after he finished first grade.  Up to that point, Gabe spent time in physical and occupational therapy from the age of 1 1/2 to 6 1/2, being released at the end of Kindergarten.  At that point, we thought his only concern was tight heel cords, and after intense therapy for four years, he was finally in the normal range of motion.   He was released to go and play like any other child was able to.  Running was always difficult for Gabe, but he could still do it.  Now….let’s fast forward a year to the end of first grade.

It wasn’t until we did Disney last summer, when this Disney momma jam packed an entire day of walking and events,  that we realized just how much pain Gabe was consistently in.  He has a very high pain threshold, and never, ever tells us he is “hurting”, because, fortunately for him, he doesn’t experience pain until it is just unbearable for him.  But at that point, we have to find a way to ease his pain immediately.   We were at Disney for a week, but by the end of the second day, he was hurting pretty badly, and I knew we had to just slow way down and take things easy for him, allowing more frequent breaks than what a family would normally take during a Disney trip, making sure he had time to stretch out his legs and feet and plenty of time to swim (which is REALLY good for him).  By the end of the trip, he was tired, but no more so than what a normal 7 year old would be.

We returned home for our summer, and Gabe didn’t complain the rest of the summer about his legs or feet hurting.

We took a Labor Day trip to Disney with my mother, and it was upon that trip that we realized this problem was more intense than before.   Even though we scaled back on walking, since we knew it helped him during our last trip and because my mom has had knee surgeries , it still wasn’t enough.  He began to fatigue so much quicker than he had in the past.  I knew something was different than before.

When we returned from our trip, we called his therapy center to make an appointment with his orthopedic specialist.  We would have to wait two months to get in.   But during the waiting period, they gave us some suggestions on how to help him until we could meet with his doctor.  When our appointment finally came, we realized his leg flexibility and range of motion had actually begun to regress, which is why the pain suddenly came fast and furious.  This was the appointment when we were told that he had a more intense problem than first detected, and sometimes it just takes kids growing up, putting more weight on their frame, and becoming more active before some of these things become a concern.   During this appointment, he was fitted for night splints and orthotic inserts for his shoes.  It was a new beginning for us, as we would spend the next four months trying to figure out the right plan of action for him that didn’t create more pain, but in the end, we did.

We had to wait six more weeks to start therapy, and once we started in February of this past year, we jumped right in.  Gabe has always had absolutely wonderful therapists who are incredibly knowledgeable and tremendously kind to him.  After two months of therapy, lots of loosening and tightening of his different splints and orthotics,  in April it was discovered by his specialist that he had joint laxity, and from that point, everything began to make sense.  We began using a different type of orthotic, one that supported his ankle, foot, and arch better.  Walking became so much easier for him, and he didn’t fatigue as easy.  During the time of trying to figure things out, he would be completely exhausted two hours into the school day.  Thankfully, Gabe went to school where I teach, his classroom was right next door to mine, and his teacher is one of my best friends.  We worked very well together to keep Gabe as pain free as possible.

At the end of May, it was time for a week at Disney.  I had been in heavy discussion with his therapists about what would be best for Gabe and we all agreed that we should NOT cancel the trip, he should enjoy himself, and we should rent a wheelchair.  I called Disney directly and asked for their recommendations.  They gave me several suggestions and from there I truly just chose one to call.  I called Best Price Mobility and not only were they incredibly friendly and knowledgeable, but they made me feel very at ease regarding a situation that I knew nothing about.  We spoke on the phone a couple times before we arrived at Disney and each time, I never felt that I was an “annoying customer”.  They truly have great concern for their customers.

They had Gabe’s wheelchair ready and waiting for him at Bell Services when we arrived at the Polynesian that afternoon, and of course, in true Disney style, it was wheeled right up to him and he was helped into the chair and made to feel like a king.  He was even given a lei from the front desk.

Every single fear that I had about his mobility was taken away from that point on.  He was completely comfortable and EVERY SINGLE DISNEY employee that we encountered made all of us, but especially him, feel that he was the most important person in the room.  They opened doors for us when we couldn’t, they always spoke to him or made jokes with him, they kindly asked people to move in order for him to get through, and we were never treated as a nuisance when we had to get through restaurants or character interactions due to his wheelchair.  Gabe could walk on his own, and he did when necessary.  But to keep his fatigue down, we pushed him when possible, and he would exit the wheelchair to go onto rides, take pictures, go swimming, etc.

Many people have asked me questions about how we maneuvered through the parks, the monorail, the resorts, dining, and extreme crowds with a child in a wheelchair.  Honestly, it wasn’t a lot different than when we did it with a stroller as far as being difficult on my end.  The wheelchair itself was extremely easy to use and Gabe could move himself if needed.

As we got onto buses (which wasn’t often, I will be honest, as we stayed on the monorail loop), we very simply got in the handicapped line, and when our bus approached, we were seated first, where they strapped Gabe in, speaking to him, making sure he was ok.  They always offered me a seat first, but I always chose to stand next to him.  Someone else could use my seat.   Then, we were always assisted in getting off the bus, using a ramp getting on and off the bus.

The monorail line was pretty much the same.  They had a separate line for handicapped individuals, and we often would share with strollers.  They would seat us first, then strollers, and others, again, using a ramp.  I would stand with Gabe if the monorail was crowded, he would lock himself down, and we were off.

Getting in and out of elevators was pretty simple, and most were large enough that we were able to turn fully around inside of them.

Bathrooms were the only area of “concern”, yet it made me say several times, how much true respect I have for those who live this life everyday.  While there is plenty of room in the bathrooms, I really wish there was a way to invent an automatic door, which could be deactivated once inside, as this would make things a lot easier for the handicapped.  That was the only struggle we had, and luckily, he had me to help him.  Cast members that were near the restrooms, or even other guests, would help us.  It wasn’t a nuisance, but it made us realize how difficult others really do have it when it comes to a very simple task such as using the bathroom.

Swimming was easy for him as well.  We would push the wheelchair up to the pool, go into the handicapped accessible area, park near where we were laying our things, take off his orthotics, and Gabe would walk the short distance over and step into the pool!  There was always a cast member near our pool, who could assist us getting inside the handicapped accessible door.  If I haven’t said it enough, the cast members were fantastic.  Never a frown, never a complaint, always willing to help.  Every single experience was amazing.

When we would come to rides, we would either park it in a designated area, or he would remain in his seat for spots that have handicapped seating.  I always let them know that he didn’t “have” to stay in his seat.  I know that there are true handicapped people who need spots and I don’t want to pretend for one minute that he deserved their spots over them.  However, cast members would assure me that he was totally fine and everyone that needed a spot was taken care of.  Fastpass + rides were never a concern because he didn’t have to wait in line long, and again, we would park the wheelchair and walk to the fastpass line, or we would remain in the wheelchair and a cast member would take it to the ending spot.

The time that I really saw how amazing Disney treats those with mobility concerns was when we rode rides where we didn’t have fastpasses and the lines were LONG.  Really long.  They have designated paths for wheelchairs, and while we still had to wait in line, it wasn’t as crowded, we had room to get through the line with his wheelchair, and there was always a cast member or two willing to cut up with Gabe.  They would always ask us if he could leave his wheelchair for the ride, which we said yes, and they would take us to a certain point where we would wait, where again, another cast member would come over and speak to us, mainly to Gabe.

Gabe was never obnoxious about this.  That isn’t his personality anyway.  To know Gabe, is to know, that he is the child who apologizes for his mom having to push him in a wheelchair, for us having to go slower because of him, for us not getting to race to the front of the line because of him.  What he doesn’t realize is that because of him, we take things in so much better.  We see life at a slower pace, but we appreciate life for the beauty of the moment.  We don’t rush.  We enjoy each other and each thing that we do together.  If we miss something, oh well.  There will be something else waiting on us that we probably would have enjoyed even better.  We do things for each other.  We are kinder to each other. BECAUSE we slow down.  It was glorious.  It made me truly appreciate all the extra effort that Disney puts into treating everyone as if they are the only people in the park.

One particular moment that I think of, when I think of this past trip this summer, was when we were at Hollywood Studios.  We had about an hour until Fantasmic, and needed a filler.  We strolled over to see if we could make the Toy Story Mania ride.  As we were walking and pushing over, a family cut us off, causing me to have to yank Gabe’s wheelchair to the side.  Yes, we were walking slow, but not turtle speed slow.  I ended up bumping into a sweet young lady, and said I was sorry.  She just smiled at me and said it was ok.

When we got to Toy Story Mania, that family that cut us off was near the front of the line, and we were at the end, realizing that we couldn’t wait 50 minutes in line because we would miss our fastpass for Fantasmic.  We made a decision to leave and just as we were turning around, the girl I bumped into returned to me, with fastpasses for our family.  She was a cast member, said she felt bad that we had been “knocked over” and wanted to offer us something to help.  Of course, I cried.  I thanked her repeatedly, and asked what I could do for her.  She said nothing, except to enjoy them.

So we did, and we got right into the Toy Story Mania line, used those fastpasses, where I made sure to tell the cast members what she had done for us, asking them to please find a way for their supervisor to know what she had done (they assured me they would, they knew who she was), and we completed what was probably the most magical ride of the night.  My heart was full.  It is the true spirit of Disney magic.  Pay it forward people, it never hurts.

When our week was over, we left our wheelchair at Bell Services again, and Best Price Mobility picked it up for us. We were charged exactly as we were quoted.  It was the easiest process possible.

That is my experience with using a wheelchair at Disney.  I know there are thousands upon thousands of others.  But hopefully this one will help answer some questions that some of you might have regarding how easy it is for those of you who may have mobility concerns.  And just like little Pinocchio, Gabe has no strings tying him down.

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