Parenting A Child With Drug-Resistant Epilepsy

The inaugural meeting of Nights of Sharing was held last night at Epilepsy Toronto.The frigid temperatures and the ill health of some children meant it was a small--but mighty--group with lots of time to ask questions and share stories. Richard and I were happy to spearhead the group and to share our 30-year journey of raising a child with drug resistant epilepsy. From the feedback we received parents with recently diagnosed children are eager to learn from the wisdom of parents who've gone before them. I guess that makes us the old parents and they the young parents! Still, we who've been through it want to offer guidance and share what we've learned on what is a difficult--sometimes horrible--journey.

I've even been asked if we could videotape the sessions so that parents from outside Toronto can participate. Sometimes I forget how lucky we are to live in a large city with lots of resources. One young Mom came from Niagara. I'm so glad the meeting was helpful to her.

The next meeting is scheduled for Thursday April 25. The topic hasn't been decided but we received many good suggestions about what parents want to know, including: the pros and cons of using cannabis to treat seizures, Vagal Nerve Stimulation surgery to control seizures, how to get the most out of doctor's appointments, how to protect your marriage, how to stay strong, and how to deal with family and friends. If you'd like to attend, please register by email: katie@epilepsytoronto.org

Sunshine on a cold winter's day at Scarborough Bluffs.

Comments

Did This Happen To You Too?

I have a confession to make: Ever since COVID-19 struck, I’ve found it difficult to read even the best of books. I love nothing more than hunkering down with a fabulous read but last year my mind darted all over. I couldn’t sit still and I couldn’t focus on any book. Did this also happened to you? By the end of the year I had a stack of fourteen books on my bedside table all crying out for me to continue reading them. In the living room there were another twelve books and one or two books in the car. I tried to read them. I really did. Books have always been my escape but there was no escaping COVID-19 and the horrific stories of sickness and death. It didn’t help that my two eldest sons, John and Mike are both General Medicine Internists working in hospitals on the frontlines. Or, that my husband is working with Toronto Public Health. Fear took over. I gathered the books I’d started and put them all downstairs on my read-one-day shelf . I decided I’d wait until the New Year,...

My Current Favourite Book

I'm so glad today is the last day of February. For a short month it was long and brutal! I can't wait for the snow, the cold and the grey to vanish. Usually I go for a long walk three to five times a week, but not this month. It has either been too cold or too icy. On the upside, I've had more time for reading. This year I've recorded in my Book Lover's Diary the title and author of each book I've read and I've rated each book with one to four stars. My Mom gave me the diary in 2000 but this is the first year I'm dutifully recording every book I read. So far I've read eight books, or almost one a week. Six of the eight are non-fiction: Becoming , by Michelle Obama; A Smell of Burning, A Memoir of Epilepsy by Colin Grant; Educated , by Tara Westover; Walk It Off, A Memoir by Ruth Marshall; Intrepid Soul, A Memoir of Returning Home , by Leanda Michelle and Women Who Walk With Wolves , by Clarissa Pinkola Estes. The two fiction books wer...

Nancy Figueroa Writes

Search This Blog