Last week I was faced with handling the moment we realized Disney world wasn’t the happiest place on earth for a child dealing with the day to day struggles of life with narcolepsy.
Imagine if you had a beautiful bouncing baby girl that slept all the time. She didn’t really cry or fuss when she was awake unless of course you woke her up while she was napping. Imagine how warm and fuzzy you feel when you look at this angel sleeping and then imagine this same baby being a 5ft 3inch tall eleven year old.
This is what life is like with a child with narcolepsy
For months we planned this amazing trip to Disney world for my daughters 11th birthday. I had several blog posts and Multiple “pin” worthy titles for my Pinterest page for this trip preplanned and packed! I had done my monthly meal prep. We were on point with our budget prior to leaving home and in mind we were ready to have an amazing vacation!
Nothing could have prepared me for Hurricane Matthew and what followed!
We were prepared to depart Atlanta on Wednesday, October 5, 2016 and the news reports showed this category 4 hurricane reaching Florida on that Thursday! Tuesday night I made the decision not to leave for Disney until the storm had passed. Great job in planning, heart breaking for the child that had been counting days for over a month.
We arrived on Saturday and just walked around downtown Disney. While hurricane Matthew had passed over and left no visible damage to the Disney empire I had no idea a storm was brewing in the midst of my vacation party.
We all got up early Sunday morning, had breakfast at the hotel and hurried along to catch the shuttle to the Parks. We were so excited! Well 3/4 of our party was. The warning signs were there. My daughter wasn’t excited. She wasn’t like a four year old going to see Mickey! I saw the signs. I ignored them. I rationalized in my head once she sees Cinderellas castle everything will be perfect!
Boy was I wrong…..
Our visit to Magic Kingdom was anything but magical. My daughter cried more then she laughed. She was miserable. She had a migraine. She came close to having a panic attack. She was hot. She was frustrated. She was surrounded by thousands of strangers laughing, screaming and playing! Her sensory levels were on overload! She fell asleep every single time we sat down.
Now I’ve experienced my daughters narcolepsy issues before. We homeschool so she’s with me 24/7. I’ve dealt with headaches, migraines, sleeping spells, sensory overload and attitudes all at varying times. I do believe this is the very first time I got every single negative side effect at one time. I assure you this was a Category 4 storm in her life. She has absolutely no control over her emotions and her body’s way of coping was to shut down every chance it had.
Yet I continued to try and make this the best vacation ever. I didn’t listen to that voice in the back of my mind that said screw this let’s go back to the hotel. I didn’t listen to my mom-tuition that said hey screw the cost of the ticket your kid is more important. I didn’t listen to this tug on my heart every time my eyes got all watery cause I had zero control of what was happening to my kid. Nope we kept on trucking standing in 2 hour lines for a 30 sec thrill ride followed by 2 mins of her saying that was awesome! Two hours for 3 mins of satisfaction…….
Another Mom Offered some help.
But then on day two some of my blogger friends caught us at the beginning of our day and let me know about the Disability Services Pass!
While the daytime of day two was amazing those evening hours proved no match for my daughters condition. She got sleepy during Fantasmic! We wouldn’t let her sleep. Then she got a little restless. This meant we had to walk back to the car which woke her up (that sleepy window of opportunity was passing). Our family stopped and grabbed dinner then back to the hotel. At this point she was wide awake! This is when the flip side of what we deal happens. Now she could NOT go to sleep. She was up until about 4 or 5am.
The rest of the family has gotten up and had breakfast. Everyone has to find something to entertain them for a few hours because waking her up prior to her sleeping for at least 8-10 hours will equal another day like day one of our trip. Thankfully we can access the Disability Services Pass each day of our trip which cuts our wait times to a minimum but our vacation sits on hold until her body resets itself.
Biggest mom lesson I’ve learned:
Narcolepsy doesn’t care where you take it. Not even Disney World can change our everyday reality.