I think “guilt” is permanently etched into the fine print that comes with being a mother. But when you have a child with special needs—my four-year-old daughter, Syona, has cerebral palsy—the guilt-ridden questions require their own extra carry-on baggage: Did my body fail my child? Are we doing enough therapy? Should I be a stay-at-home mom or go back to work?
Two years ago, I decided to go back to work, and I haven’t looked back. I work for a great organization that supports young kids and youths with multiple special needs. I’m lucky my colleagues understand the extra challenges that come from managing a schedule for a child with special needs. I work with smart, dedicated people who I learn from every day. I enjoy my time at work and love what I do.
However, there are still times when “mom guilt” rears its ugly head. A couple of weeks ago, I took a day off when Syona had a P.A. Day. It wasn’t a matter of convenience—I’m lucky to have retired in-laws who enjoy spending time with Syona. I just simply wanted to spend the day with my little girl. I’d been working long hours recently and hadn’t been able to spend as much time with her as usual. I craved some alone time with her. That’s why I had what I like to call a “stay-at-home mom” day. These days are reminiscent of the time I spent with her after I decided not to return to work outside the home after my maternity leave. We ate, played, tidied up, ran errands and ended the day with soccer practice. It was perfection (and in case you’re wondering, yes, I was absolutely exhausted).
The guilt came up again as the school year ended last month. We were lucky to enrol Syona in some great camps for the summer, but I caught myself feeling guilty about working. Maybe I should be spending the summer days making memories with Syona, I thought. But then something funny happened—she enjoyed her first week of camp, and then the second. I expect the trend will continue. In the same way I enjoy spending my days with my engaging, dedicated and smart colleagues, Syona enjoys the company of other kids.
I always say that Syona has completely changed my perspective—I think that happens to everyone when you have a kid, but when your child has special needs that change is even more exponential. You slow things down, appreciate the little things in life and experience the joy that comes from spending time together.
The best part of my day is coming home to a sweaty, sunscreen-streaked, slightly sticky kid who tells me all about her day at camp. The fact that she asks me about work and what I did that day makes me realize I really have nothing to feel guilty about at all. After all, memories are made around the clock.
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary preschooler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.