I’ve been thinking about this post for years. For so long I didn’t write it because it was too hard to write. It’s one of the biggest heartbreaks that I’ve experienced as a disability mom. Maybe I waited to write this post until I was able to find the positive within it.

One of the hardest parts of having a disabled child means splitting up. Of course, many families divide and conquer. But we aren’t supposed to divide family vacations. We aren’t supposed to decide who gets to watch our daughter’s hockey game that night and who has to stay home. Half of us aren’t supposed to miss big friend or family events while the other half picks up the caregiving at home. Sure, some of this may happen when the kids are young, but not when they’re 10 and 12.

This summer I took our daughter, Eliza*, to my cousin’s lake house in New Jersey. We were ALL invited and encouraged to go, but the logistics of bringing my son, Asher, were too cumbersome. Where would he sleep? Would he even sleep at all in a new environment? Would he be safe near the water, the stairs, the thousand random things lying around that he’s not supposed to touch?

At home, our house has been adjusted to keep our son safe—enabling us to step away to brush our teeth or make lunch while he roams around. When we go anywhere outside of that zone, we lose those safeguards. Instead, there are unlocked doors with basement stairs, breakable objects that aren’t ours, and distractions that keep us from fully being able to watch our son. Not to mention the exhaustion that comes along with travel and the hyper vigilance of keeping our disabled child safe. There is no “turning off” on vacation. In fact, caregiving becomes immensely more demanding when on the road.

With all that in mind, I took my daughter to the lake house in New Jersey without my boys. It was a wonderful trip. She had a blast and I got to bond with her without distraction for nearly a week. She told me it was her favorite part of the summer. While I hated being without my son and husband, I loved the joy it brought my daughter and the bonding opportunity it gave us.

A few months later, my husband, Jack, took Eliza on a trip while I stayed home with Asher. This time, I wasn’t sad. I was excited. I got to spend time with my little man who absolutely loved the attention, and Eliza got another fun trip with her dad this time. Everyone was happy.

While it would be nice to do everything together as a family, especially the big events, I’ve had to accept that’s just not feasible for us. We have to make decisions based on our capacity and protect our energy so we can avoid burn out and be the best parents possible for our kiddos. It doesn’t mean we never attempt a vacation (In fact, we took one this summer – but that’s for another post!). It just means we have to pick and choose carefully what we all do together.

At the end of the day, we are still making amazing family memories, even if they don’t fit the image we had at the start of this wild and crazy journey.

*All names changed for privacy purposes