When my daughter Syona was diagnosed with cerebral palsy three years ago, my husband Dilip and I knew we had to redefine our vision of the future. The experience of parenting this exceptional little girl has certainly changed our world and there are a few truths about our experience that I imagine many other parents of kids with special needs will find relatable.
1. I’m overscheduled: I never wanted to be the mom who shuttled her kid from one lesson to another, every day of the week. But our special-needs life includes a lot of specialist appointments. I’m organized because I have to be. Google Calendar is my best friend. Yet, despite all my best efforts, there are times where I'm left scrambling or discover I've double- or triple-booked myself.
2. Disposable income is a thing of the past: Last week, I was telling a friend that our weekend mornings consist of therapeutic horseback riding and physiotherapy. Her response was, “Wow. Your life must be very expensive.” It is. Whatever income isn’t spent on paying the bills goes towards therapy or other adapted recreation activities/equipment for Syona—and the majority of these activities aren't covered, or are only partially covered, by the government. Still, I'm grateful that we have enough to meet our needs.
3. I read insurance policies cover to cover: All those health benefits that didn’t seem so important before I had a child are usually maxed out before the snow thaws for spring.
4. I really, really want you to say "hi": Parenting can be lonely. When you're on a playground and your child is the only one in the wheelchair, it can feel even lonelier. Not because of your child’s disability, but because people don’t talk to you. So please, reach out.
5. I don’t want you to shush your child: When your child asks a question like, “Why does she need a wheelchair?” or “Does she talk?” please don’t shush him or her. When you shush your child, you are teaching them that disabilities are something that shouldn’t be talked about, or are something to be ashamed of. Instead, help facilitate a conversation between the kids directly if they're old enough or with the help of a parent.
6. I want more time with my friends: Because I'm so overscheduled, it can be tough to carve out time with my friends. The friends that stick around and are strong enough to pick things up where we last left them (even if we haven’t connected for months) are the ones I really appreciate.
7. Small gestures mean more than you think: In the past week I’ve had a friend drop off ice cream because I was having a tough day, another friend pick up a microwave popcorn maker because she knows I love popcorn and yet another friend take over wheeling Syona when she was having the kind of epic meltdown only a four-and-a-half-year-old can have on the way home from the park. All of these gestures show kindness and love that leaves me with happy tears. They also make me feel less alone. I'm lucky to have some incredible friends.
8. I'm tired: Many kids with special needs have issues with sleep, leaving many parents with sleep issues of their own. I think it’s a pretty universal truth: we're all tired.
9. I have less of a filter: My vulnerability is highly visible and this makes some people uncomfortable. But it also means I feel great joy in the smallest of victories or pleasures.
10. My life is like yours: I have fears, disappointment, overwhelming love, happiness and humour in my life, the same as any other parent. My daughter can push my buttons and fill a part of my heart that only she knows exists (sometimes simultaneously).
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