For my family, vacation consists of tons of people in close proximity, heat waves, babies eating sand, and powerful undertows that threaten to drag our children out to sea if I don’t grab them quickly enough. I have multiple sclerosis, so you can guess how close I’d have to be in order to be “fast” enough.
After reading that opening line, you can tell how I feel about vacation. The sad part is it’s the one thing my family looks forward to all year.
Vacation for someone living me living with multiple sclerosis is tricky. I can’t do heat. Heat can be very harmful for people with MS. In fact, in the late 1800’s it’s how they diagnosed people with MS. “The hot bath” test. Ugh!
For years I’ve been trying to think of ways to get through it. For them.
The most genius vacation hack came from Zoe, my daughter. We all know I can’t I run or use the baby jogger anymore. I keep it because they both grew up in that baby jogger. I spent days running with them strapped to it, when I was strong. Maybe I want it around to remind them of who I was when they were young? I’m never letting go of it.
Zoe suggested we take it for strolling things back and forth to the beach and then “mommy can hold on to something.” It was the most genius idea. Oh and it’s always awesome when we pass someone who hunches over to look at our darling baby and coo, and it’s sandwiches and a cooler. They end up flinching instead. Now, we never go on vacation without it.
I always do little vacation hacks like this. I always have frozen bottles of water everywhere– despite being against frozen plastics (not healthy). I knew ice on my neck would help me and when it thawed I could drink it. I dressed in layers so if the heat went up, I disrobed. I went to the beach as early as possible before the sun was at its worst and prayed that they’d be tired by the time it got really hot.
But my disease has progressed since and I just can’t do the heat wave holidays. I can’t do it and you know what – I don’t want to. And I’m not apologizing. MS isn’t something I did to my family. It’s something that happened to me, happened to US. It just recently it hit me that I want a vacation too. I live a grown-up, REAL, crazy, serious, stressed out life WITH a disease while parenting. I think I am entitled to a little time away. Maybe there’s an age we hit where we just feel like we’ve paid our dues?
It hit me - my kids have shown me how to be creative, I’ve written a book about it! Shame on me. They have shown how to include me, to adapt, to build a bridge when we had to figure out how to get around the MS reality and play. If we made that book happen, we could make this happen. We were all getting a vacation. It was time I hack BIGGER.
I found a camp ground just off the island we always visit. We got a cabin right next to the pool. It’s shaded. It has golf carts for people (like me) who have mobility problems. When the kids and their dad wanted to drive over the bridge to the shore – they do! If it’s cool enough and early enough, I go with them. Then at night, they head to the boardwalk they love on the island, and I take some mommy time to myself to lie down.
Since I started “hacking” our vacation, my kids have discovered fishing and nature. They’ve met new friends. They’ve played ping pong in the air-conditioned lodge for hours, right next to our cabin. AND, it’s cheaper, and I’ve gotten to be there for all of it!
There are little hacks you can do to get through the heat, to try to escape it, to save your energy and do what others want. AND then there are bigger things, like changing the location. Camping near the island was a great compromise, one that taught my children that sometimes when you compromise you can discover you kind of like the in between better!
We learn so much more from compromise than we do from always getting our way – there are priceless lessons you can’t hack your way through. For the record, they only left the campground once last year, and I was the most active I have ever been on a vacation. Compromise has been our best hack yet.