Bubble

One of the downsides to vacation is that it is a strong reminder that you normally live in a bubble. A huge, comfortable, happy my-child-with-special-needs-isn’t-so-disabled bubble. Then you go on vacation and remember that you are the parents of a severely disabled child. It hits you like a battering ram right in the heart.

After the daily poop incidents, the major poop incident, not being able to navigate the terrain like we want to, not being able to do some of the things we want to, having to endure the endless open-mouthed stares, daily clean up of pee-soaked bedding, navigating with Olivia’s wheelchair/stroller, it gets to you.

One day we decided to make it a beach day. We packed up everything we’d need for a whole day at the beach and headed out. I’m not really sure why it ended up so poorly; if it was because we were at the halfway point of vacation and were tired or what, but Matt lost it. Olivia was trampling sand castles, sitting on strangers’ towels, running into strangers and neither of us could relax. When something like that happens, you realize that you never get to relax. Not really. That it’s like having a toddler forever. The bubble bursts and it hurts. Terribly.

Matt rarely loses it. He hardly ever has bad days when it comes to having a daughter with a disability. When he does, it feels like a knife is stabbing me in my heart and that I might throw up. It also feels glorious at the same time. Because I feel the same way and it’s always nice to know you’re not alone. Even in a marriage, when you think you share everything all the time, you don’t. I don’t always tell Matt when I’m feeling down about raising Olivia. I don’t want to bother him with it most of the time. Or we never have two seconds alone together, let alone the hours we would need for the conversation and the emotional outpouring that comes with it. When you reveal your feelings, sometimes it makes them extra real. But I’m always thankful when we do share these deep, dark feelings. Always.

It was a rough two days after the beach. We were hurting, deeply. Matt took the boys and went minigolfing and out for ice cream. He spent the day exploring little fishing towns and antique shops alone. I took the kids to the pool and escaped into my Kindle. We talked when we could and gave each other emotional support like we always do. I felt that invisible but strong bond between us grow even stronger. Eventually we felt better. We pulled ourselves together and went whale watching. Olivia sat on the boat, enjoyed the view, oohed and aahed over the whales and we got over it for the moment.

It hurts. It hurts bad. I am always thankful that I can find the positive and focus on that instead of the hurt. It’s never easy, but we do it. And I’m always thankful to have such a wonderful partner by my side.