April 26, 2016

Tut Tut it Looks Like Rain

Our family became reunited once again on our final Orlando day with the arrival of Alan.  He ferociously shoveled for hours to get out of this. . .

to get here. . .

The kids and I settled into the Contemporary Resort and eagerly prepared an arrival party for him and welcomed him to our wild adventure.

Now we were to begin the vacation plan that we had intended from the start - before the snow storm made me resort to super spontaneous Plan B.

With Alan's arrival came the arrival of rain.  The clouds hung over us at Magic Kingdom all day and refused to blow over.  We didn't let that stop our fun.

We started the day extra early for a well-timed breakfast reservation at Belle's Castle before the park opened.  We timed it so that we would be leaving the restaurant about 30 minutes before they let in the general crowds, but started running the rides for us so we had a couple easy rides on the mine train coaster.  I love my brave 6-year old keeping her hands up the whole ride!

We repeated the whole process of moving the aforementioned 81 pound 55" rag doll -- but now he was cloaked in a slick super soaked poncho, which made the job even more difficult.  It was a relief to now have the Big Guns (in the form of Alan) doing the work for Lance and I!

Half way through our day, Bridger started having some seizures, so I headed over to our familiar stop at the First Aid center while Alan took off with the other 4 children to not let Bridger's medical needs stop their fun.  On the way there, in between seizures, Bridger was screaming for a balloon.  We waited in line and excitedly talked about which balloon he wanted to choose from the enormous bundle in the hand of the Disney worker. I went to purchase a balloon for him and realized I didn't have cash on me and they didn't take credit.  Oh. Snap.  They directed me towards Guest Services where they thought I could make a charge there for one.  Working against the clock for Bridger's need -- both those of his limited patience for a balloon and his medical needs that I needed to attend to, I raced (still in the pouring rain) to Guest Services and explained my situation and asked to place a charge or at least give them a promissory note or leave my license with them until I was reunited with my husband who had the cash to repay.  The kind Guest Services worker gave me a coupon for a free balloon and with the brightest smile, and wished Bridger a Magical Day.  When I told a very sad Bridger that the pink coupon was a ticket for his balloon, every muscle stiffened with joy and he let out an excited shout.  True to form, I started crying in gratitude.  Simple gesture.  A coupon for a balloon.  But for me it was everything at that moment.  Bridger chose his balloon and clung to it with utter delight as we made our way to the First Aid center where Bridger laid on the bed and I took care of his little body.  He let his body shut down (which it needs to do when this happens) and we spent the next 3 hours in the little room of that center.

I was sad thinking about the others having fun and my wish that we could be doing so as a family.  We haven't ever had a trip to the Magic Kingdom that hasn't included me spending at least a couple hours with Bridger in the First Aid center.  At the same time, I am so grateful to Disney for being so accommodating and assisting with our medical needs that allowed the fun day to continue for the rest of my family instead of us having to end our day.  They even had an adult size medium brief (aka Bridger diaper) that Bridger could use since I had left the spare in the backpack with Lance.

After several hours, Bridger and I exited and met up with the others, who, despite their ponchos, were soaked to the bone but smiling still.

We did a few more rides together, had a few more treats, jumped in a few more puddles and then called it a day as we checked Orlando off of our list and prepared for the fun that awaited us the next day.

Want a teeny hint??


Magic Kingdom.

Our Magic Place.


It has been in the past, at least.

Bridger's greatest love in his life is Disney World's Magic Kingdom.

Our greatest love is watching Bridger's unfiltered expressions of joy radiate out of every muscle fiber of his body while at the Magic Kingdom.

The five children and I took Bridger's service dog, Ty, to board at the Canine Companion for Independence Orlando regional center and to have himself a doggy vacation romping and playing with a few dozen other identical super amazing golden labs and off we went to continue our adventures a la Disney.

Magic Kingdom was different this time.

We hadn't been there for two years.  And in those two years Bridger had gained 30 pounds and 9 inches.  That makes a very big difference.

Most all of the rides at Magic Kingdom require transferring out of your wheelchair and a 81 pound, 55" rag doll with spindly legs prone to tangling presents a challenge.  Further complicated by the fact that I was still recovering from major surgery with restrictions not to lift and the recommendation from my doctor that I not even be going on this vacation for at least another month.

Calling upon the help of my 14 year old son, he and I awkwardly threaded Bridger's body in and out of Dumbo, the Honey Pot, the Mine Train. . . 

We were completely exhausted within an hour of being there.

Also changed from our last visit was Bridger's sensory system.

It is much more rigid now.  We had lots of "chewy" time.

He did not want to go on most of the rides that he previously loved.  Being the wonderful mom I am, I forced him.  I was sure that if I forced him that he just might like it a little bit.  And though I was completely wrong each time, that didn't stop me from trying again.  Oddly enough, although we would put him kicking and screaming on the ride, and burrow his head into my chest and simultaneously cover his ears during the ride, those were the rides that he talked obsessively and excitedly talked about the rest of the day (and beyond) -- still claiming, however, that he still did not like them and didn't want to go on them again.  Go figure.

He is so not happy here.

Holding him upright so he doesn't fly out, while covering his ears and maintain my posture as it is being whipped around turn after turn is actually quite difficult.  

To the other children, it was fabulously fun.  We had bought one of every fun treat that caught our eye and split it 6 ways (and then split Bridger's 1/6th between us one he decided to refuse it or gag and retch on his attempt to try it) and sampled our way through the park.  Lunch time, however, is my most efficient moment.  We have learned from past experience that the crowded eateries are no place for our large footprint and Bridger's strained sensory system.  Sights, smells and sounds do him in.  Under the wheelchair we have tucked a small cooler and the kids line up in a row while I kneel at the head and chuck Lunchables, yogurts and water bottles down the assembly line.  We have the art of easy lunching down pat. And before anyone has time to detect their tire feet, we are on the move again.

The characters were always the highlight to Bridger, and Bridger was a highlight to them.  Mickey was especially magically motivation, as Bridger rose out of his chair and walked to Mickey - one slow unstable step at a time.  Mickey kept telling Bridger how proud he was of Bridger and that night as he went to bed, Bridger reminded us over and over that Mickey was proud of him.

They even seek him out in the parade.

I have learned to be careful as the characters always go immediately towards Bridger who dominates the time with them while everyone stands behind him and observes the interaction.  I often times hold Bridger back, much to the confusion of the Cast member ushering us forward, and have Eliza go ahead and have her special time with the character first before her brother enters the scene and dominates the attention.

The scariest moments of our day came when we let Eliza and Bridger drive their own cars.  I don't know which was scarier -- having this beside me. . .

Or having this little face barely peeking over his steering wheel from behind me. . .

Everyone left happy, but Lance and I left a little less happy.  I don't want to be a Debbie Downer about Disney, but an 80 pound 55" inch rag doll had made it lose some it its magic.  We were beyond exhausted from the physical, and also the emotional care for Bridger that day.  I left with the firm conviction that we would never be back.

And that made me sad.

Disney and the beach -- our only two vacations we have found that are not only accessible-ish, but also ones that the completely exhaustive nature of managing Bridger on a vacation is almost balanced by the joy that is yielded from such.

Luckily, time has a way of erasing the less than pleasant memories and making everything wonderful -- and looking through the pictures of our fun day, it feels magical still.

April 25, 2016

Blog Jam

Why is it taking me 3 months to summarize a 10 day adventure that happened in January?

Blog Jam.

I have a rule that I impose upon myself.  I cannot continue on writing until I have finished covering what past musing I felt to write about.

And this thing called Spring happened -- and Spring looks like a ball point pen threw up all over my calendar.  So there has been no time for gathering photos and putting together the larger blog post summarizing our special adventure that would then free me to write about the little daily morsels of our life.

So coming to you in one big blog dump tomorrow is the remainder of our Florida Adventure.

My apologies if it feels like drinking from a fire house.  But rules are rules.

April 11, 2016

A Special Thank You

Several years back, when we were at a previous trip to Magic Kingdom in DisneyWorld with our family circus, we were using our Guest Assistance Pass to bypass the long line of the Small World ride.  Just as we were entering, a lady who was holding the hand of her child that was dressed from head to toe in every souvenir possible, holding a large balloon with remnants of a chocolatey Mickey Bar spreading the circumference of his lips, yelled out to us in a volume for all to hear, "We would sure love to skip the line too!!!"

I slowed my step, took a deep breath and thought of my day.  I would sure love to be standing in line with her, too, I thought. 

Bridger had just completed a 30 minute epic sensory meltdown before we attempted to enter the Small World ride, which was similar to the complete screaming tantrum that started our day when we had to wait for over an hour for the boat that was wheelchair accessible to come to our dock from our hotel, watching all the people behind us in line hop aboard the 3 non-accessible boats that came by in the meantime. It was the same total meltdown he had every time we passed by the Peter Pan ride -- all 5 times because he wanted to get on, again, and my other children couldn't bear to ride it a 4th time.  Which was not as severe as the full body tantrum he had every time we had to get off a ride when we received a mighty bruise or two as we carried him kicking and screaming off the ride because he had so much fun that he didn't want the ride to end.  The quiet times we found in our day were the moments I tucked behind a shop to tube feed Bridger, or the quiet times I had in the First Aid center that afternoon while Bridger was having seizures.

So after my fellow Disney mom hollered to me for all the crowds to hear, I continued pushing Bridger's wheelchair forward with the rest of my family following and thought of my mental trade to her.

I would give a million dollars if I could stand in that line with my child standing next to me holding a balloon with ice cream smeared on his mouth and wait.  A million? No, double that. . . triple that even.

I would give ANYTHING if I could stand there with you.  For every day I live in the hospital that you live at the park, for every night that I am awake that you are enjoying blissful slumbers, for every moment I am scrubbing vomit out of clothes that you are scrubbing dirt stains from baseball uniforms. . .  please, don't begrudge me the one brief second that my life might be a bit easier than yours.  Because I promise you the minute we get off this ride, it will return to impossibly difficult again.

And THAT is why I love Disney.  They don't begrudge special families of that moment.  They go out of their way to make us feel as many moments of "easy" as possible. 

There are only two vacations that we have found thus far that our family can do.  The first is the beach, the second is Disney.  We are so grateful that Disney makes it possible for our family to have a vacation that everyone can enjoy {enjoy being a very relative word in the life of Special}.  Disney is magical for us.  The extra "benefits" (like alternative lines) make it possible for Bridger to enjoy the park, but those perks also hold another kind of magic.  Those perks serve as compensation to my other children.  My other children are keenly aware of the extra difficulties in their life because of having a brother with special needs.  So when they look at the long lines they would otherwise be in and follow their brother into the alternative entrance, when they enjoy their front row visually impaired seating next to their brother and when they enjoy their reserved parade seating. . .

they thank him.

Those magical Disney moments are when they think they have the best life in the whole world, because of Special.

This moment I captured on camera during our last trip is just after Bridger and I left the Guest Services office with our Magic Kingdom tickets, where the Disney agent had just loaded on a dozen blank Fast Pass+ entrances to any ride to all of our tickets for the day.

His siblings enveloped him with a great big hug and said, "thank you, Bridger!"