Happy almost end-of-summer everyone! We had a very fun and busy few months, which included lots of swimming, hiking (for mom, anyway) and travel.
We spent three weeks traveling to Minnesota, stopping to visit family and friends along the way. While it was mostly awesome, there was definitely a shift in how we can accommodate Gus away from home.
We have worked hard to make our home in NH a place where he can go anywhere he wants easily. We bought our property because the land is very flat, and the main floor is the majority of the house, with no steps to get into the house. We have made minor accommodations, like adding a bedroom for him on the main floor, but other than that (and trying to keep the house picked up so he doesn’t trip over objects) it’s a safe place for now.
When we leave home, it’s a different story. Sometimes it feels as if we are entering a minefield. Houses and restaurants with steep steps just to get in the front door…hotels w/o elevators, no bathroom on the main level (he did a lot of peeing outside), hills that he cannot walk up OR down, fun things like go-carts and boats to climb into become a major source of anxiety. And these few things are just the beginning. Isabel and I can still carry him upstairs (not Steve because of his back surgery).
There was just a lot of stress among the fun. And that is our new reality as Gus’ Duchenne progresses. We have to think really hard about our next trip. We need to make sure everything is accessible BEFORE we go and we need to think really hard about what is realistic for our family.
One (of the many) bright spots was when we were visiting good friends in Wisconsin. Abe was SO excited because they had a trampoline. . .but my heart just sank. A trampoline is a total nightmare for a kid with DMD — they want to jump so desperately, but it’s impossible. It looks SO fun, but they can’t do it. And here is what happened: Our older kids and the kids of our friends figured out that they could sit Gus in the middle of the trampoline, surround him with 2 or more kids to hold him and keep him safe, while the other kids bounced them! He had a BLAST, he was included, and my faith was renewed.
This is Duchenne. . ..you feel as if your heart is breaking for your child for the 100th time, and then people step up, they have compassion, they solve problems, and they make your child feel normal — even if it’s only for a short time. It’s priceless.
We are so close to our goal with Everest to End Duchenne! Please consider giving to this campaign so that we can fund more medical research to keep our boys walking longer and living stronger than ever before!