4 Lessons My Child's Epilepsy Taught Me

Epilepsy has changed my life. There are days when epilepsy is a nasty monster haunting my dreams, clawing at my soul. He’s laughed at me while I lie awake at night. He’s sneaky, relentless and violent. Epilepsy challenges me. He’s filled me with self-doubt. He’s questioned my strength. Epilepsy and I wage war. I will not succumb. I will grow out of this struggle. Epilepsy has taught me some important lessons.

1. Create a nurturing circle of support.

When my son’s first seizure struck in the early morning, I had no idea what was happening. I called 911, and the operator told me, “You need to calm down so we can help your child.” And they did. The EMT team and the staff at two hospitals coached me through the most gut-wrenching 48 hours of my life. Since that seizure almost four years ago, our circle of support has expanded. It includes not only specialists and service agencies but also the dedicated staff at my son’s school and the compassionate people in our local community.

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I built this circle of support to care for my son, but I also soak in their love. We all need to surround ourselves with this kind of light, open ourselves to others’ compassion and sustain those relationships that encourage us to become our best selves. Remember that one plus one is often greater than two.

2. Carry a big purse.

The neurologist who diagnosed my son’s epilepsy also showed me the MRI of his brain. Although the technology behind this imagery is fascinating, I was in shock. She then instructed me that I must always carry an emergency medication in case a seizure raged for more than five minutes. Later a different type of seizure emerged, and the doctor added a second emergency medicine. On long days I also carry three bottles of daily medication and syringes so I can administer doses in a timely fashion.

Recently my school principal told the faculty that the the police dogs would be visiting our school.  I clutched my big purse and said, “I carry drugs.” If I dump out my purse at any given time, I may also have crayons, comic books, a deck of cards, my journal, a favorite type of tea or a bottle of essential oil. My mammoth bag gives me space to carry treasures, and they remind me to carve out moments to nurture myself. What gifts can you give yourself? Take exquisite care of your soul. We all deserve to savor simple joys throughout the day.

3. Ride the wave.

My son’s epilepsy was well-controlled for 18 months. Then the storm surged again. I consulted with the neurologist. She adjusted his medications. I held my breath anticipating the day when all would be calm again. My life became unglued. I scribbled page after page of notes in my seizure log. I took an extended leave of absence from teaching. When will they fix this?!

Six months later the neurologist explained that my son’s epilepsy is intractable, meaning they’re uncontrollable. This is our new normal. I cannot brace myself and wait for the seizures to disappear. We travel this life with epilepsy. We sail through the peaceful moments with gratitude and acknowledge the power of chaos. Epilepsy is not my enemy to control. It is my experience; I need to grow. We are human. We feel a panorama of emotions. We breathe in our wild experiences. This is our journey.

4. Chase crazy, big dreams.

Here we are dancing with epilepsy. Sometimes it’s dangerous. Tomato soup plus a seizure equals second degree burns. It’s often clumsy. My son spills water, clunks into furniture and drops the cell phone. Some people have auras, unique sensations prior to seizures. Not my child. A friend suggested researching service dogs. Some dogs are trained to smell chemical changes before seizures. They alert their owners and protect their loved ones during events. My son disliked dogs. He shuddered at loud noises and dreaded anything that was too rambunctious. Fundraising with the service dog agency demanded thousands of dollars. This idea was too crazy, too big. Or was it? We played with sweet, gentle dogs, and they’ve won my son’s heart. And generous souls have donated every single cent needed to transform this crazy, big dream into our reality.

There’s a freedom to facing adversity. We can forget the shadows. We know them so very well. We can reach out towards the enchanted future. There’s magic within all of us. We must always keep hope.

I’m not the same person I was the morning my son had his first seizure. I’m wiser. Remember to surround yourself with light. Soak in love, and let it comfort the tired parts of your soul. Be open to the healing grace that others shower on you. Be mindful of the simple things that resonate with your heart. It may be a cherished note from a friend, a gorgeous flower or a luxurious lotion. Carry these gifts with you, and they will help you find your center. They will remind you to linger in a peaceful moment just a little longer. Be brave when you dance with darkness. Dazzle it with your beauty and laughter. Hold onto your best self even when demons haunt you. Listen to your wild, lavish dreams. They may be as simple as an idea that frequently bubbles up until you’re ready to grab it. Embrace your aspirations, and try to enjoy the adventure.

Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.