My five-year-old daughter, Syona, has decided what she wants to be for Halloween: a butterfly. This may not seem like much, but it’s an exciting milestone for our family. Syona’s decision was based on a book she brought home and the fact that her class hatched two butterflies in September. She was excited to go out shopping with her grandparents to buy her costume, which includes glittery wings.
A few days after her costume was purchased, my husband, Dilip, and I realized we have no idea how Halloween is going to work this year. Syona uses a wheelchair due to her cerebral palsy. Since most houses have stairs leading up to their doorways, it means we’ll have to lift her in and out of her chair each time. This is neither practical nor good for our backs. Another conundrum: If we take Syona out in her wheelchair, then she can’t wear her butterfly wings because they’ll get squished when she sits. She is at such a tricky age: small enough that we can still lift her yet big enough that it will eventually drain us. Down the road, when lifting her is no longer an option, we’ll likely create our own awesome wheelchair costumes.
I see other parents with children the same age as Syona and it seems so much easier for them. The kids have more mobility and, as a result, more independence. They can walk on their own, feed themselves and get their own drinks from the fridge. But for us, there’s no break, and things aren’t going to get any easier—in fact, they’ll only get harder as Syona gets older and bigger.
This realization presents me with a tough pill to swallow when it comes to parenting a kid with special needs: Our lives are so very different from most other families we encounter. I know every family has its own set of challenges, but when it comes to major annual events—like Halloween—I can’t help but realize how much our family experiences are directly impacted by Syona’s special needs. It’s not good or bad; it just is what it is.
We’ve decided to go trick-or-treating in Syona’s cousins’ neighbourhood in the hopes that their neighbours will have fewer stairs to climb. We’re considering carrying Syona in a backpack, baby-carrier-style. It’s not an ideal or even permanent solution, but it will do for this year. Instead of focusing on the challenges to come or worrying about next year, I’ll enjoy this Halloween with my beautiful little butterfly.
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary five-year-old with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.