Australia, Cairo, Canada, Cerebral Palsy, Epilepsy, Family, Love, Memories, Michigan, Our Son, Parenthood, Personal, photo, Seizures, Sleep, Stories, Toronto

Sebastian, Epilepsy, and the Firefly Garden

4692941251_47d5311bdf_oWhen Sebastian was just two he had an ambulatory EEG. He had to have a box with a bunch of wires which were attached to his head, sit on top of his head. Although they put gauze and tape on it, it kept falling off. This was our attempt at keeping it in place. 

Sebastian is now six and a half years old. When we were living in Cairo he was first diagnosed with epilepsy -almost 5 years ago – while we were visiting family in Australia. Being told that your baby (already diagnosed with cerebral palsy) also has a seizure disorder is completely overwhelming.

Dear Sebastian,

Today – the last day of the decade- you were diagnosed with epilepsy. Who has time to think back on an entire decade when we sometimes struggle to take one day at a time? A storm blows in; big, grey clouds eat up the blue sky. Patches of white shine as the sun struggles to hold on to her last day of the year. We’re waiting for the rain. But I feel like it’s already pouring Your great-grandma died three days ago. Her heart finally gave out as she struggled for breath. Here we are, half a world away, where time was only allowed to stop for a moment. Here comes the thunder rolling in and breaking the silence. I wonder if it will wake you. As you laid sleeping in my arms, exhausted, I prayed for a long, restful sleep. You need it; seems your seizures are caused by lack of sleep. Systematic tonic epilepsy. Just like your CP. Its own special name (Dystonic Cerebral Palsy). While our family in Michigan floats through their days as they bury grandma, we struggle to learn about the new medication you must take. The rain begins to drop, cool on my arms.

We left Australia with bags full of medicine. Medicine I didn’t trust wouldn’t hurt my son. Medicine with pages of side effects and no doctor to monitor them. Although Sebastian’s EEG showed seizure activity, there were no seizures. Yet. The medicine was a preventative measure but when I called the International Hospital in Cairo in search of a doctor, they referred me to a doctor in London. An ocean away. We decided to monitor Sebastian closely without giving him the medicine. We also decided that we needed to move.

Read more excerpts of letters to Sebastian and memories of our journey with epilepsy here on the Firefly (Community) Garden blog, a place to connect with other families, friends, and therapists working with kids with special needs. ‘Firefly Garden is a supportive community of mums, dads, brothers, sisters, grandparents, experts and professionals (from all over the world) helping each other solve the daily problems families like ours face.’