My name is Lorrie, my daughter is an artist and so much more, she just happens to have Epilepsy.

I can honestly say, looking back at the early years before her diagnosis at age 8, I don’t remember her first seizure. I remember she was sitting watching tv, and suddenly, her cheek started to shake and there was drool. I’d never seen this before, never heard of Epilepsy, scary moments for sure. The ambulance rides to the hospital, doctors talking in a medical language I didn’t understand, worried about my daughter. The not knowing, feeling helpless as a parent, you want to do everything you can to protect your child, but how? when you’ve never heard of the word “seizure” before.

In the early days of and after the Epilepsy diagnosis, my daughter could not talk when she experienced a seizure, she described it to me as ” having a band-aid ripped off her tongue.” There were no warning signs before a seizure you just never knew when or where the next one might occur, and with my daughter’s type of seizure, no Epilepsy monitoring device would work. Every day and even still to this day, it’s a guessing game. no seizure dog or comfort animal would be able to detect a seizure either.

All the trips to the doctors, specialist appointments, tests such as EEG’s, etc., finding the right meds and proper dose for my daughter’s specific type of seizure, the constant documentation/journalling, hoping to stay one step ahead, was what I would compare as a parenting game of Whack-a-mole, always needing to be prepared for what may or may not pop up.

In My daughter’s teen years, her seizures changed, add on top of that a diagnosis of Photosensitive Epilepsy, having to learn how to protect and teach her (While learning myself), to guard her eyes due to the possible seizure trigger from flashing lights etc., even a movie theatre screen flickering, could and did cause my daughter to have a seizure. Navigating Epilepsy and its side effects has never been easy for my daughter and our family, but we push forward.

There is a quote ” Epilepsy does not just affect the person experiencing the seizure, it affects the entire family.” This is so true.

When we are having a good day, I like to write on my blog, share my story or my thoughts on different websites, do media interviews if I’m asked, and attend support groups on Zoom or Instagram lives, I never want to stop learning. I enjoy crafts, listening to music, watching sports or a favorite cooking show, and hanging out with my family and friends.

Talking about my parenting journey has never been easy for me, but who will hear me, if i am silent?

Being an ambassador for Purple Day and advocate for creating much-needed Epilepsy Awareness is an honor, which I don’t take lightly.
if my tiny voice can help raise awareness to something that needs more voices, globally, if I can reach even one person, then I know I’m on the right track. Through the many mistakes I’ve made on my parenting journey, are very valuable life lessons I’ve learned and hoping to share with others when the need arises.

I’ve always questioned in my mind “Why did this happen to my child? ” I may never know the answer, but she will always have my support and is not a burden.

My goal through my experience is to
– Empower
– Encourage
– inform
– educate
– support
– listen

Lorrie Forseth

The Canadian Epilepsy Alliance/ Alliance Canadienne del’Epilepssie is a Canada-wide network of organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families. We achieve this through the provision of support services, information, education, and public awareness.

 

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