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

Reading, Writing, Epilepsy and More...My First Blog

As a young girl my greatest loves were newspapers and books. I dreamed one day I’d be a newspaper reporter, and one day I’d write a book. At 21, I graduated with my degree in journalism and worked at newspapers in Collingwood, Barrie and Oshawa, but the book eluded me. Not any more. Four years ago I made time to follow my dream. In my little downstairs office I’d set my timer for 60 minutes and allow the words, the feelings and the memories to flow. With two 60-minute intervals a day, the words weren’t always pretty, but they were on the page. Today—following memoir writing classes at Ryerson, a graduate certificate in creative Writing from Humber College, working with an amazing editor, and countless hours of pouring my heart on the page—I’m ready to birth my 327-page baby. Seized—A Memoir of Epilepsy, Complications and Love , explores my journey with my son, James, who since birth has suff...

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...

Tristan Thompson and Epilepsy Toronto

My son James loves basketball. Guess I should have known he’d agreed to go with me to Thursday’s Amari Thompson Soiree in support of Epilepsy Toronto. Amari’s big brother—NBA superstar, Tristan Thompson of the Cleveland Cavaliers—is honourary chairman of the evening. You bet, James wants to attend! I’ve always thought Epilepsy Toronto and the epilepsy community in general, needed a strong, well-known personality to help raise awareness and funds for those with epilepsy and their families. Along came Tristan, thank goodness! The Canadian citizen, who grew up in Brampton, partnered with Epilepsy Toronto to host the soiree in honour of his 11-year-old brother, Amari. Like James, Amari has suffered seizures since birth. Tristan, who calls Amari, “the greatest motivational force in my life,” acknowledges that not every family dealing with epilepsy has had his good fortune. For this reason he decided to do what...

Nancy Figueroa Writes

Search This Blog