Special-needs parenting: I worry my daughter will die

I never understood the meaning of a "semi-charmed life" until I had my now-four-year-old daughter, Syona. She was born with serious health challenges and, in an instant, the blinders came off. That moment—more than any other in my life—taught me that bad things can happen to good people. Like really, actually, just happen out of nowhere.

We'd faced challenges before, but nothing that was literally life-threatening to someone my husband and I dearly loved. My child’s life hung in the balance and I was so keenly aware of this fact I didn’t ever ask her doctors if there was a chance she could die—because I already knew there was. My pregnancy was uneventful and I was considered low-risk—the odds were in our favour, until they suddenly weren’t anymore. And it all came as a shock.

After a few weeks, Syona was deemed healthy enough to leave the hospital. She'd defied the odds and was released well before anyone expected her to be sent home. Around the same time, my mom was being tested for breast cancer. She was young, healthy, took care of herself and, in my mind, there was no way it could possibly be a positive result. I was wrong. She moved quickly through the process of surgery, recovery and, eventually, chemotherapy and radiation. The odds played a trick on me, and our family landed on the "wrong" side again. Luckily, she’s OK now.

While all this was going on, we were dealing with the fact that Syona had suffered some brain damage that could lead to serious, life-long implications. But I reasoned with myself that, again, the odds were in our favour—there was no way we would land on the wrong side of fortune three times in the same year. And again, I'd made an incorrect assumption—we learned that Syona had cerebral palsy. While we needed time to process and accept our new reality, I knew it wasn’t the worst possible thing that could have happened to us. The worst thing was that we could have lost her. But that didn’t happen, so life was good.

As we settled into our new life, I realized my perspective was forever changed. Yes, we appreciate the little wins, and she brings us much joy—but now we know that bad things can happen.

Last week, Syona had her Botox treatment again. We choose to have her go under general anesthesia because the process can be painful, although I'm keenly aware of the risks that come from going under. Syona has undergone the process several times, and she's been OK afterward. Yet each and every time we go through this, my mind can’t help but go those dark early days of her life. I always worry that she will be the one cautionary tale that lives at the back of every parent’s mind. I worry my daughter will die.

Yes, it’s a dark thought. It's so dark. Part of me dreads even writing these words. But I realized that I needed to share this publicly after I recently confessed these thoughts with some close friends whose kiddos undergo the same procedure. They all felt the same way I did.

When you’ve landed on the wrong side of the odds, you know that bad things can happen at any time. But it also can't be the only thing our family life is about. There is so much more. So when those negative thoughts threaten to take over, I take a breath and look at Syona and all the beauty and joy I'd be missing out on if I let the darkness take over.

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.

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