My husband and I live about 60 kilometres outside Ottawa in a country spot that is lovely except when we have to get to an Ottawa hospital quickly.

On a weekend in early June 2015, I was in my office in the city catching up on some work. Initially, I wished that I was at home enjoying a weekend off, and then suddenly I was very glad to be in Ottawa.

I got a phone call: our older son, then 24 years old, had a tonic-clonic seizure and was in the Queensway Carleton Hospital. I could get there in 15 minutes rather than 45. Two years later, I got a similar call at my desk: Our younger son, who was then 22 years old, had had a set of tonic-clonic seizures. The trip to the Ottawa Civic Hospital took 10 minutes.

Both times, my husband and I were shocked. Our kids were seizure-free during their childhoods, so for them to be diagnosed with epilepsy as young adults was frightening and bewildering. They have continued to have seizures—some of which we have witnessed—and we’ve all found it challenging at times to make sense of this transformative change in our lives.

I want to be available to help our kids navigate a serious condition while finding healthy ways to manage my anxiety about their well-being and not taking control. Sometimes I succeed and sometimes I fail.

The Epilepsy Ottawa team has been a source of strong support and information for me. I had a lot to learn about epilepsy and, with their Clinic to Community program, I now have a better vocabulary and can have easier conversations with our kids. Just knowing that I’m not alone and can ask for help has been very comforting, especially because my role in our kids’ healthcare is clear: they are in charge, not me. Sometimes I’ve felt powerless and “freaked out”, so having a professional to talk with takes the pressure off my kids and gives me a safe space to share my sense of fear and concern.

I’ve also seen how Epilepsy Ottawa has helped my children. Both of our sons have completed the UPLIFT program, where they got support and they could support others. I’m grateful that they had such a positive experience. As a result, I relaxed a bit too; so it’s a win-win for everyone.

I often say that living with epilepsy is not for the faint of heart. Certainly, as a mom, I find seizures very hard to watch. I am grateful, however, that as a family, we work together to make sure that everyone is well cared for and healthy. And, without a doubt, the professionals in our lives, including the Epilepsy Ottawa team, have helped me to better support my adult sons in their journey with epilepsy.

Thank you so much!
Martha