My Epilepsy Story and How It Impacts My Children
By Brooke Boynton
I had what most people would consider a normal childhood. I was a cheerleader, had a lot of friends, and a great family. In my late teens something changed. I started having what I called “weird feelings.” At first, I ignored them, But at age 22, I was working my shift as a
bartender and the next thing I remember was waking up in a hospital because of a seizure. I was sent home the next day with no diagnosis and told that I would be fine. A few weeks later I had a grand mal (tonic clonic) seizure at work. This hospital stay included EEG and MRI testing and a referral to a neurologist. That is when I received the epilepsy diagnosis.
I was prescribed anti-seizure medication; however, the grand mal seizures continued a couple of times a year and partial seizures occurred daily. I knew that I needed to practice self-care and improve my sleeping habits to manage the stress in my life.
In 2014, I got married and had my first baby girl. Life was good until the seizures started again. Sleepless nights and the stress of being a new mother caught up with me. On a beautiful afternoon while driving my daughter to play in the park, I had a seizure and crashed my car. That was a life-changing moment!
To control my seizures, my neurologist thought I might be a good candidate for brain surgery. In December 2016, I had my right amygdala, hippocampus and some of my right temporal lobe removed. My seizures were finally controlled but now I live with something far worse…short- and long-term amnesia. Those pieces of my brain that control memories were gone!
The worst part is missing those big moments in motherhood like my daughter’s first words and first steps. At the time, my husband took lots of pictures and told me stories, but I never remembered.
In 2018 I had my second daughter. I tried going back to work, but being a mother meant lack of sleep which brought back my seizures. And being a one-income family of four became a financial challenge.
A friend told me about JoshProvides, and they changed my life! I found a group of people who knew what I was going through. Never any judgement…just support from others. Tips on how to take my medication on time. Suggestions on how to deal with stress. And most importantly, the knowledge that there is some place I can turn to for help.
As a mother, I will always be there to support my daughters the best I can, but I’m not able to do things that other parents take for granted like answering questions from your children, “Do you remember my first gymnastics meet? “ “When did I take my first step?” “What was my first word?” At 11 years old my older daughter understands why, but my 6-year-old gets frustrated and confused when I ask her if she’s brushed her teeth ten times.
JoshProvides has been our lifeline. Thanks to the support of a generous donor, I have funds for my anti-seizure medication. I can access rideshare programs to get to my medical appointments. And medical service grants have helped me with my doctor’s visits.
It can be a dark and lonely place when you can’t remember the joyful times. Thanks to JoshProvides, I know that there is hope and support for me and my daughters.
