Traveling with a Child with Cerebral Palsy: Hard but worth it
When you have a child with special needs no one hands you a book and says, "Here's everything you need to know."
Or at least not exactly.
When Sage was diagnosed the neurologist gave us a giant packet with "resources" websites we should visit, phone numbers we should call, non-profits we should know about. It was one of the most overwhelming things I've ever held in my hands. It wasn't very helpful.
There are a lot of moments when parenting Sage is truly a delight, even easy, and then there are moments when I completely spiral. When my worst self comes out and I begin to panic about the future, about how I'm going to parent her, about all that she may not be able to do or experience.
I had one of those moments towards the end of our time in Kauai.
We had a good but exhausting few days lugging Sage and all of her necessities around the island and then on our last night we went out to dinner. It was a good dinner, nothing too eventful, but we had to carry the wheelchair up some stairs multiple times during the short outing and as we got back in the car I thought, "We could never do this with her power chair or if she was any bigger."
Then I started to think about the rest of the trip. Many of the activities seemed as if they would be completely impossible to do if she were bigger or in her power chair. I started to wonder if we would be able to travel with her at all in the future? Could this be the last time we bring her to Hawaii or on a big trip like this?
I thought about how she didn't fit on the changing table in public bathrooms anymore and the way she screamed in the airport when I tried to change her diaper on the too small surface and ended up trying to change her diaper with her standing up. It was not a good moment for either of us.
I thought about how much my back has hurt lately from her being home more while out of school and me being the primary person lifting her. How much worse will that get as she grows?
The full weight of so many unknowns came rushing down on me in one instant. New grief and loss I hadn't yet considered came rushing into my focus, hollering for my attention. A loss of freedom for all of us to go wherever we wanted to go as a family together, the prospect of family trips she wouldn't be included in.
Already our second trip this summer will not include her because I knew it would be too much for her to come along. I had always known there would be those occasional trips that wouldn't include her, but in that moment I wondered if travel, especially by airplane, would eventually be ruled out completely. When we got her power chair I asked the therapist who was fitting her about traveling and taking it on an airplane and they were startled by the question. I remember the way they looked at me and how I had to repeat the question. In the end they assured us that it could be checked and you could fly with it, but it was clear people typically don't do that a lot.
All of these thoughts poured through my mind in a spiraling instant.
"Are you ok?" Bryan asked as we got back to the car.
"No. I'm spiraling." I whispered back trying not to alert the rest of the car full of people. He gave me a knowing look and put his arm around me. We didn't say more then, but we would talk about it later.
The next day, Bryan came bounding back from checking us out of our hotel room calling out, "Hey, wanna go to Maui?"
I laughed and shoved the last of our suitcases in the rental car, "You're funny."
"Your dad just texted asking if we wanted to extend our trip and go to Maui."
"Oh, you're serious. Was he serious?" I closed the car door and picked up my phone to see the text.
"I don't think he would have asked if he wasn't."
The next hour would be a whirlwind of indecision. Can we do this? How do we do this with Sage? Do we have enough food and medicine to even consider? We're exhausted already from the trip, do we have enough energy to even consider? We can't do this. Can we?
Within an hour we had thrown all our reservations to the trade winds and followed an old motto we used to say when we were first married whenever we were unsure what decision was the right one: "Just make that decision the right one."
And we did.
We did the unpredictable and extreme and uncertain thing even with a child with special needs and it reminded me that we can.
Yes, traveling with kids is hard and exhausting. Yes, traveling with a kid with special needs is even more exhausting and stressful. But it is doable. It can be figured out.
I don't know what it will look like to travel with an older child with cerebral palsy. I've never done it. I don't have a manual telling me how to do it or what to expect. Even if I did it would probably be pointless because each child is so different. But we can do hard things. We can figure it out as we go. And it is worth it. Always worth it.
Grace and peace,