Lily’s Voice: A Parent’s Perspective
My daughter, Lily, was diagnosed with Epilepsy at one and a half years old. All I have ever wanted for her is happiness, and, of course, good health, and being unable to make her well has been the greatest struggle of my life. Nothing can prepare you for the twists and turns brought on by a diagnosis like Epilepsy. It has no predictable trajectory, no stages or steps you can follow except to ‘brace yourself’ for the whirlwind of appointments, medications, tests and fears. As a family, we have learned a lot about managing life with Epilepsy and we are continuously learning to navigate being a parent to a child with Epilepsy who at such a young age often needs her parents to be her voice.
Lily is now almost six years old. In the last four and a half years, these are some of the things I’ve learned as a parent:
1. The first time your child has a seizure it might not look like a seizure (especially if you have limited experience with seizures). You might not understand what is happening in the moment, but you will know it is serious. Lily’s first seizure is etched in my memory forever (every tiny detail), and I have never felt more scared or helpless as I did then. That memory stops my breath, and I freeze with the same fear every time I recall that day.
2. Fear is normal, and it serves a purpose – especially when you’re responsible for a little human. I have learned different ways to stay grounded. Do whatever keeps your grounded: practicing mindfulness, deep breaths, chocolate, sunshine, coffee, or anything else that brings you peace. Do those things often, or as often as you can, even if in small amounts.
3. Not all seizures are alike. Before Lily’s diagnosis, I thought all seizures were convulsive – but a seizure can also look like a sudden drop to the ground, a blank stare, confusion or even laughter. It depends which part of the brain is affected.
4. One of your biggest fears as a parent will become losing your child to a seizure. This fear can be debilitating and overwhelming at times. The thought “this could be the one that doesn’t end” will probably cross your mind despite the hundreds that have stopped on their own.
No matter how many seizures you witness, each one is scary and unsettling. It doesn’t really get easier with time and experience – you just learn better ways to manage those feelings and cope with the uncertainty over time. Find support if you need to: friends, family, a counselor, or your local Epilepsy organization. I have personally sought help from all these sources at one time or another.
5. You will become intimately familiar with the signs or little behavioral nuances which signal a seizure is looming. For Lily, we know at least a day in advance based on her mood and her eyes – which is an important survival skill when your child isn’t able to tell you they feel “off.”
6. You would give anything to trade places with your child when they are sick. I have bargained with God so many times to give it to me instead so she wouldn’t have to endure the countless MRIs, PET scans, MEGs, EEGs, bloodwork, hospital admissions, medication upon medication, side effects, missed school and events… Epilepsy is so much more than “just a seizure.”
7. My daughter is the absolute strongest little human in the world. She is beautiful and happy, sweet and kind. Epilepsy does not define her, and I will not let anyone else define her by her challenges. We are her advocates, her voice.
Children are extremely, if not THE MOST, resilient creatures who rebound from trauma and sickness with incredible emotional agility, courage and spirit.
8. And finally, I have learned Epilepsy is a serious neurological disorder with no cure. There is a desperate need for more research, funding and awareness to find better treatments and to dispel the myths. My responsibility as Lily’s mom is to be a voice (her voice) in our community to educate others and to support organizations which raise money for more research and services for people with Epilepsy and their families.
It might sound like a tough job – to do every possible and necessary thing to keep your child safe and well day after day. And to be honest, it is. Managing Lily’s challenging care needs has changed me in good ways and in some not so good ways (hellooo, anxiety). On the tough days, I try to remember to be gentle on myself and lean into our support network. But overall, I am tougher and stronger because Lily inspires to give my best and to be strong, and because she needs me to be her voice right now.
We will continue to fight alongside our amazing Epilepsy Warrior and believe for a cure!
From Troy
I just wanted to share a few words, to provide you with small bit of insight into a part of Lily’s Journey with Epilepsy, from my point of view.
Lily was diagnosed with Epilepsy at 1.5 years old, which was around the same time I met her. I had worked with Lily’s mommy for a while, and we had become good friends. I always heard of Lily, and interestingly enough, my first time meeting Lily was at the Janeway Children’s Hospital as I brought coffee and treats to Kristen on behalf of our co-workers at the adult hospital that we both worked at. I remember Kristen asking me if I wanted to meet her. I clearly recall walking nervously into her hospital room. Lily was in the crib-like hospital bed, with big bright brown eyes and short brown hair. She was sleeping, but woke as I entered and started looking at me probably thinking to herself “who is this guy?” Fast forward five years later, and Kristen is my wife and Lily is our world.
Since that time, Lily has had many procedures, tests, medication adjustments, and even an out of province trip to Sick Kids Hospital with her mommy and me by her side. Throughout her journey, she has endured so much. There have been many tears, sleepless nights, ambulance rides, appointments and hurdles that we never knew we would face, but Lily’s resiliency, strength, positive attitude has inspired many and keep us motivated. We have been so blessed to have amazing support from Kristen’s parents, and my parents are always a phone call away.
Sadly, Lily’s seizures still happen, and we live on edge each day knowing that a seizure is going to happen. We hope one day there will be a cure, but until then we will continue to advocate, raise awareness, and support our little Epilepsy Warrior.
I love you so much Lily Belle
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.