What is it like to be a parent of a child with epilepsy?

We became parents nearly 8 years ago to our beautiful daughter Kaitlyn. Every new parent cliché came true that day. Over the next nine months we began to see that Kaitlyn was not acting like children her age. She was not reaching her developmental milestones and exhibited signs that appeared to seizure-like-activity. Her pediatrician swiftly sought an EEG and our concerns were confirmed just a few hours later. Experimenting with the right medication and doses began that night. For the next 4 months, Kaitlyn would continue to seize countless times throughout the day.

It was in those moments that our journey as a parent of a child with epilepsy began. We slowly began to compartmentalize our parenting. On one hand, we focus Kaitlyn’s health, her medications, doctors, therapies, diagnoses etc. Then, on the other hand, we have to block all of that out. We focus on Kaitlyn…Kaitlyn’s smile, Kaitlyn’s abilities, our marriage, our family, and our friends. If we do not compartmentalize, we end up going down a very dark, unpredictable road. Will Kaitlyn always have seizures? Will Kaitlyn be able to drive on her own? Will we always worry about Kaitlyn’s safety? We can’t predict the future, so we must constantly remember to take life with Kaitlyn one day at a time.

It wasn’t always easy to talk about our precious little girl seizing. Once we became more comfortable and accepting of her diagnosis, we were more open with sharing her experiences. We’ll never forget an interaction during the Magnolia Run/Walk for Epilepsy in 2011. A family with a newly diagnosed son desperately asked us about our experiences. It was the simple act of opening up and talking with another family going through the same journey that we found unexpected comfort. We found comfort knowing we weren’t alone.

As our children get older, we’ve been very open with Kaitlyn’s health. A benefit of being open about Kaitlyn’s epilepsy is acceptance. We don’t want Kaitlyn to feel ashamed of having seizures. This is our driving force for our participation in the Epilepsy Foundation of Georgia’s Magnolia Run/Walk every year. We participate with family, friends, and loved ones from every part of Kaitlyn’s life. During the event, Kaitlyn is surrounded by people who love, support, and accept her for exactly who she is. That is our hope for her entire life – that she can be exactly who she is and know that she is loved and accepted no matter what.

If you are walking a similar path with us, remember –
Talk openly about seizures.
Celebrate what your child CAN do.
Live life one day at time.

Josh, Allison, Kaitlyn, Brooke and Cory Bacon