Cerebral palsy: Life after diagnosis

I had the incredible honour of speaking to families at the Grandview Children’s Centre last week as part of their “Life After Diagnosis” panel discussion. Grandview is the only children’s treatment centre in the east end of the Greater Toronto Area that offers specialized programs, outpatient clinical treatment and support to thousands of children and youth with special needs and their families.

The panel discussion was an opportunity to bring families together, share experiences and, most importantly, help people realize that they weren’t alone.

I had the opportunity to kick off the session by sharing our story. And I began by reading the blog post I wrote for Syona’s one-year anniversary of being diagnosed with cerebral palsy. I then focused the rest of the session on how I dealt with Syona’s diagnosis and the things that helped me.

My hope was that it would inspire people and remind the families who attended the session just how strong they were — despite the fact that none of us feel we are strong 100 percent of the time. Disclaimer: I am nowhere near qualified to give advice. Heck, on most days I’m not even a well-adjusted person, but this was me sharing my personal journey… so far.

Here’s how I told them I’ve dealt with — and continue to deal with — Syona’s diagnosis:

• This is personal. I dealt with Syona’s diagnosis in my own way, and still do. Dilip dealt with it differently, as did other members of our family. Everyone deals with it in their own way and it is important to realize that is OK and to respect the process.
• I don’t live in sadness. It’s OK to have down days, weeks, even months. As I said before, it is a personal journey. You can be down or angry for as long as you need to. I was (and still am on occasion). But don’t live there. It is not your permanent address. Realize that you can and will come out on the other end. And if it is all too overwhelming, get help.
• Count on people. Spend five minutes with your partner at the end of the day just talking. You can talk about whatever you want — you, your kids, your day, whatever — just talk. And if you’re a single parent, talk with a family member, friends, whoever… just talk. And accept help. I do all the time. I don’t think it makes me weak. I think it actually ends up making me a stronger parent.
• Make diverse friends. I found friends who have children with various diagnoses and abilities, in addition to friends who have “typically developing” children. It means that Syona will grow up surrounded by people of all different abilities. It also provides us with an amazing support network.
• Life will be different, but it can still be as incredible as I always dreamed (if not even more so!). Being a mom to Syona is teaching me to be my best self. That’s a powerful thing.

Following a short break there was a panel discussion with several mothers who are involved with Grandview. They shared their very personal and diverse stories with the families who had gathered. The audience then had a chance to ask questions and share their own experiences. All of the parents who shared their stories and asked questions were so inspiring. They were honest. They were open. They were a community — a community that I am proud to be a part of.

Grandview’s mission is “inspiring possibilities for children and youth with special needs.” I have no doubt that the families I met last week will do everything in their power to inspire their kids and countless others that are in the community. I know that they left me inspired.

And when it all gets to be too much — because that does happen — cancel your appointments, get rid of your to-do lists and play with your kid. Spend some time doing your favourite things. Because, before they are a diagnosis, they are simply your kid.

What “life after diagnosis” advice would you share? What helped you through your child’s diagnosis?