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A Night To Remember

On The Outside Looking In

All of my life, I have been on the outside looking in. I am the one in the room that always stands out and most probably, the only one 'beeping'. Yes, I am well aware of how my physical disability is rather apparent, and no, I do not view myself as a person 'with' a disability, that is just a small part of who I am. However, from time to time, I have those moments where I just feel extremely disabled and medically fragile. I call them my "bad disability days," as those are when things are just spinning out of control and when we are "just spiralling off in all directions," said best by Dan Levy. Day 1, Night 1 in Miami definitely was just one of those days...



PediStat: Servicing Team Peri Since 2010

Where did we leave off, oh yes...PediStat once again came to the rescue with a humidification chamber we left behind in NY. In layman's terms, I am extremely prone to drying out on my ventilator so I often use what is called an "HME" when outside of the house to provide humidification for my lungs. But, when I am at home or in a hotel room, I use a humidification chamber filled with sterile water. You are welcome to the complementary medical lesson. PediStat truly deserves all of the credit; my lungs thank you.


This is where things start to get really interesting...in between my dad running up and down to the lobby to get my emergency Starbucks order and medical equipment, we had to transform the hotel room into our makeshift ICU. Granted, we did destroy the room in under five minutes (new record, might I add), but that is just what happens. Here's how it all went down on Night 1:


Night 1: Accessibility Horror Stories

1) Got stuck in an elevator lift for an hour of my life that I will never get back. Called engineering, but then my dad busted me out. It is worth noting that this has happened on several other occasions on this trip fraught with disaster, but we did not solve the mystery until Day 4. That's a story for a different time.


2) My parents got locked out of my hotel room. We had two connecting rooms, and who knew, the connecting door automatically locked. So while I am binge-watching Emily in Paris, my dad is running around in circles in the adjoining room, panicking while my mom is literally jumping over balconies and debating whether or not to smash a chair into the glass balcony door. When my mom realized that she most definitely locked out of my room (leaving me unattended), she ran like a true marathoner to the lobby ten flights down (twice as the key would not open the door), shoeless and maskless. My mom is not a runner, but in dire situations, she springs into action. Mind you, I had no idea that any of this was going on at the time. I was just grateful for a little peace and quiet, my phone was on silent, and everything was great.


Kudos to my dad, who used his credit card (thank you, Home Depot) to use his Queens/New York skills for successfully breaking into my room. Yes, I was still alive at that point and quite happy to be on my own. In my defense, I just did not understand what all of the commotion was about and just wanted to be in Paris with Emily, wondering if I could possibly pull off that trip.


Lesson of the Night

The question is, why did it take three hours for my mom to calm down after her feats of strength and mobility, and why could I not travel to Paris? I questioned a lot of things that night, mainly if I, in fact, still was very disabled and why I always feel so trapped in these types of situations. The next day, we were delirious space cadets as a result of these never-ending series of unfortunate events. We replenished our fuel with a steady dose of piña coladas poolside (non-alcoholic, of course, for me as I am on way too much medication).


It truly was like a Sex and the City episode (but no sex, no New York City) one that is too cringeworthy that you can not just seem to turn it off because your eyes are glued to the screen. Oh, and if any major hotel chains happen to read this, please warn families before the automatic doors so that the kerfuffle that we experienced never happens to any other unsuspecting parents of a 'disabled' child. It was like a bad horror movie, and only now am I hearing all the details of how it all went down.

 

Next Up: Poolside Tales, More Elevator Drama, More Poolside Drinks, Wheelchair Sled Pushes, Et al.


This is #TalesofWanderlust by Peri. XX






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