Why We Dance in the Rain as a Family With a Child With a Disability

When my kids were younger, I was that momma — the one the neighbors talked about. On warm, rainy days, you could find me and my kids outside playing in the rain. Many of our neighbors are senior citizens, and they found our rain dances entertaining. For my kids, it was pure joy. For me, it was a reminder that you don’t always need sunny skies to find happiness.

I love this quote from Vivian Greene:

“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”

Dancing in the rain is something our family does both literally and figuratively. When you’re parenting a child who has disabilities, storms can roll into your life frequently. Our daughter’s developmental delays and medical complexities have created all kinds of storms for us. There’s been the tornado of whirling stress that comes with an unexpected illness and hospitalization. We’ve faced long monsoon seasons of trying to navigate tense IEPs, struggling to get my daughter the therapy services she needs. Dealing with insurance can feel like trying to drive through a blizzard, where the visibility is low, frustration is high and the paperwork piles up like a foot of heavy, wet snow you must plow through.

I’ve learned that if I always wait for the storm to clear before I look for joy, I miss out on too many opportunities for happiness. I don’t want to limit myself to only being happy when conditions are just right. My choice to dance in the rain impacts our entire family. My daughter faces enough medical challenges; she doesn’t need my anxiety and frustration about the storms around her to add to her load. And I don’t want my kids who don’t have any disabilities to grow up in a home where everything revolves around the challenges their sister is facing or the stress I am feeling as a parent.

So, we’ve all learned to grab joy whenever and wherever we find it. It has taken me a long time and a lot of practice to let go of my anxiety so I can be in the moment. Even when my medically complex daughter is healthy, I have to make a conscious decision to stop being hypervigilant. And when she’s ill, it takes even more mindfulness to remain optimistic and open to joy. An even bigger challenge is that sometimes I have to squelch the idea that it’s wrong for me to seek happiness when my daughter is struggling.

A focus on choosing joy, even when we’re in the middle of a storm, shouldn’t cause feelings of guilt. My kids deserve a mom who is committed to navigating the storm and finding chances to dance rather than a mom who is always completely overwhelmed by the conditions. It might take a lot of mental reminders, but no matter how big the storm is, learning to dance in the rain benefits me, my daughter and the rest of our family.