Expectations and Vacations just really dont mesh...and then you add kids... and then you add Duchenne.
Need I say more?
We thought it was a great plan. It sounded so amazing, to go on a trip, with all three kiddos, on a plane to another state, a trip we would never be able to go on in the reality of our life, but it was made possible by one of the most amazing organizations, Make A Wish. We thought it was a great plan. It sounded SO amazing...
It all started on the day of our departure, Jax woke up with 102.4 fever and after being up all night packing, a fever was the last darn thing I had emotional capacity for. But here I was, on the phone with the after hours nurse trying to determine what I should do. Tylenol and Motrin it was..and out the front door we went.
Then our pick up car, a super cool limo, got stuck turning down our dirt road, so we had to carry all our kids, luggage and crap to the end of the road. We made it to the airport, made it thru security, two wheelchairs, a stroller, 4 backpacks and a carry on of medical equipment and medicine. Jax coughing like a crazy person, my voice disappeared and Mason fell on the freaking moving walkway...but we were doing it. Determined. Going on a vacation. Three kids, Duchenne, and my unrealistic expectations. We are warriors. Right?
The flight was awesome, kids were awesome. Seriously, I was feeling like I could have been the best mom ever...because they just sat the whole flight and watched their Ipads. Even Gracie, slept most of the way. She was like a pro flyer. I was impressed with myself. And a few of the other passengers helped inflate my ego a bit also. It felt great, I am not going to lie. ;)
We made it to Florida. Holy humidity. Holy hot. Holy the worst weather ever. You see, I expected a cool breezy, 80 degrees, with mild humidity and cool evenings...HA!!! Have you been to Flordia? I dont blame you if you havent, I'd encourage you not to bother. Its gross.
Not only was the weather less than expected, the airport was a complete nightmare. Like I mean, the worst nightmare you could ever have, multiplied by 10. Communication failed, when we arrived we had no one to help us...Blaine had Jax on his shoulders while pushing Mason in the wheelchair, and I was following behind with 4 backpacks, a carry on, with a now screaming 1.5 year old hanging sideways out of a crappy umbrella stroller thru a HUGE airport with horrible signs and no one in sight who could maybe help us. Mind you, Jax was coughing like crazy, with a fever and I still had NO voice. Good times.
After a good hour or so being lost in the airport, we finally found where we needed to be, found our luggage and found the car rental place.
Whew. Those darn expectations.
We made it to the most amazing place to stay. Its called "Give The Kids The World" and that place alone, was worth all the airport crazy. It was amazing. Expectations, exceeded.
Then it was time for Disney World. I am not sure how it got the nick name "happiest place on earth" but I am pretty certain that phrase has a lot to do with my super high expectations. And boy oh boy, expectations and Disney World dont mesh...especially when you add three kids and then add Duchenne. Just picture it, one motorized scooter, a wheelchair, and a stroller trying to get thru hundreds and hundreds of people. On top of one sick kid, a voiceless mom and a mostly crying toddler. Need I say more?
The week pretty much continued as assumed above...it was long. It was hard. and it probably wont happen ever again. And that is a hard reality...the reality that it is just too hard to go on a simple family vacation because not only do you have the normal, crazy traveling stuff you also have to pack Duchenne. And it freakin sucks.
I joke, I laugh, I do try to make light of it all...that's what I do. But in all honestly, this trip was a real eye opener for me and for Blaine and even for our boys. This was truly one of the most difficult weeks we have ever had. And there is really only so many ways to make the best of something, when the reality of it is just so hard.
I often wonder what our life would look like at this very moment, if Duchenne was not part of it...I hate what I see. Because its so much better than this.
And then I hate that I hate THIS life.
And then I hate my expectations. Because just like not meshing with vacations, they dont mesh with Duchenne either.