Special needs

Special needs: It doesn't mean my child is unhealthy

Even though her daughter isn't able to run around with other kids, one mom argues that it doesn't mean her child is unhealthy.

1Anchel

Anchel knows that, even though her daughter can’t run around like other kids, Syona is healthy and happy.

Over the weekend, a friend shared this Huffington Post blog with me. In it, writer Sarah Watts describes how she felt after a receptionist at her doctor’s office used the phrase “as long as they’re healthy and running around” when talking about whether she had a gender preference for her baby. Six months pregnant at the time, she’d only just learned that her unborn son had spina bifida. Watts describes the feeling of a “hot knife of grief in the belly.” I imagine this feels similar to the kick to my stomach I felt a few weeks ago when contemplating my daughter’s future.

The blog post got me thinking over the weekend. But don’t get me wrong, I get it. You wouldn’t wish for a child that was unhealthy, right?

But here’s the thing. Despite the fact that Syona has cerebral palsy and doesn’t “run around,” I consider her 100-percent healthy. Yep, you heard me. In my eyes, my kid is healthy (OK, well, except for the cesspool of germs and viruses that come with the early years. Seriously, what kid gets a cold when it is almost June?).

Syona has a number of challenges: her mobility, how she uses her hands, and she takes longer to talk. She uses a walker, a wheelchair stroller and a special seat for some basic daily activities that most of us take for granted. She needs us to help her eat and relies on us to help her move around from place to place. She even needs extra support to play with toys most of the time.

Read more: What it’s like to have a child in a wheelchair>

However, we’ve been discharged from most of the clinics we spent much of our time at in the early years at SickKids Hospital in Toronto. While I was (and still am) grateful for the support we got, there is nothing that beats my favourite phrase from some of Syona’s doctors: “She’s doing well. I don’t think we need to see you anymore. But you can call us whenever you need anything.”

Some of our day-to-day tasks can be a bit tough. Eating dinner takes extra time, giving Syona a bath and carrying her up and down the stairs takes a big toll on my back. But it is just our life. And I love it. That extra time at dinner? Well, we get to have some great conversations. And the fun Syona has in the bath is often the highlight of my evening.

When I was pregnant with Syona I don’t think I uttered the phrase “as long as it’s healthy.” Having an unhealthy child wasn’t even on my radar. In retrospect, the way I thought was almost arrogant—I was low-risk, took care of myself, was the “right” age (whatever that was)—so my expected outcome was a healthy child. It was so expected that I never once even considered that my child could be unhealthy.

But when Syona was born, she wasn’t healthy. She was medically fragile in her very early days, and we weren’t quite sure what the outcome would be. The things that made Syona “unhealthy” were life-threatening. And although her diagnosis and challenges now are life-altering, they are no longer life-threatening. For that, I am ever so grateful.

In your opinion, what make a child healthy or unhealthy?

Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.