I grew up in a home that was always clean and welcoming. My mom decorated—and still does—for every holiday. It often looked like a picture out of a decorating magazine, but still comfortable. There was a place for everything and everything in its place. We were taught to pick up after ourselves. We all helped clean the kitchen after dinner, so it was ready for the next morning.
That’s what I wanted my home to be like. I did well keeping the house together and decorated before kids. Once our oldest was born, it started going downhill. Having kids changes your life. Having a child with a disability changes your life in ways you never imagined. A perfect, spotless house just doesn’t seem that important when your child has medical challenges.
I tried to keep it all together for a while. But after a couple of years, the laundry stayed in piles longer. The dishes stayed in the sink longer. The mail stayed on the table longer.
At holiday times, I put out fewer decorations. This past Christmas, we didn’t even put up a tree! We went to my parents’ house for the holidays--they had the decorations already done.
Sometimes I feel guilty. Sometimes I think I need to try harder. But for the most part, I’m okay downsizing on the decorating. As far as the cleaning, we have someone who comes to clean once a week. It helps so much. The house might only stay picked up for a couple of days, but at least it’s clean for a little while!
My life certainly doesn’t look like I thought it would. A perfectly clean house all the time would be nice. But it’s not my reality. I spend my time and energy taking care of my two boys who both have disabilities. Staying on top of their needs—their doctor appointments, therapy appointments, school appointments—is a full-time job. It’s also much more important than making sure my house is spotless!
Raising children with disabilities is challenging. Get ideas and information in the Family Support section.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.