As I’m making final preparations for our upcoming Disney World trip with Adrian I’m thinking about how things will go. I want to be able to say the trip was ‘successful’. But then I need to define what success looks like.
The last trip we took 5 years ago was difficult. We were with many family members and we were trying to be flexible and go along with what everyone wanted to do. Adrian was less flexible than we’d hoped.
I came back black and blue up and down my arm. He pinched me hard enough to bring tears to my eyes more than once that trip.
There were several outbursts in public. He even reached out and pinched a stranger – hard.
He banged on the window of the rental car so hard we had to wonder if he’d break it. He broke parts of his wheelchair.
He pinched himself and pulled out his own hair.
When you put it all together like that it seems pretty ‘unsuccessful’. And it definitely felt that way at the time. So what needs to change this time to say it’s better? Do we need to have no public outbursts? Does he need to not pinch me? Does he need to not injure himself? Do we need to have 100% peaceful car rides? If the wheelchair returns in working condition, have we succeeded then? Is it still success if we get all that but have to use the ’emergency’ meds every day?
I’ve gone out of my way to plan everything on this trip to maximize success. We’re taking Adrian alone and we’ll only do exactly what he wants, when he wants it – to the best of our ability. We’re staying in the place where he’s most comfortable and where we don’t have to worry about how he’s affecting other guests. We’re renting the car so we can have immediate transportation any time we need it. We’re going at a time when the crowds are the lowest… there just isn’t much more I can do to make this go as well as it can.
But in a way that makes me all the more nervous. Because if this doesn’t work, if it’s not a successful trip, then I have to face the reality that it may be many years before we’ll be able to try again. And, quite honestly, that would simply break my heart.
So here I am.
Still trying to define a ‘successful’ trip.