Parenting a child with epilepsy: Living life with normalcy while waiting for a cure

Gregg LaPenna’s 10-year-old son, Lazar, died last weekend at his Little League baseball game in Lido Beach. Mr. LaPenna is from Long Island, as I am. He is a baseball coach, as I am. His son had epilepsy, as does my daughter.

I am devastated for the LaPenna family. They have lived the nightmare I dreaded for a decade, as my daughter Anna endured thousands of seizures, eventually bringing her health to a dire spiral, and requiring emergency brain surgery.

It took a few years since the worst of Anna’s crisis for me to write about being a parent of a child with epilepsy. The persistent terror, vigilance, exhausting pursuits of treatment upon treatment, and all that comes with witnessing epilepsy’s debilitating effects on one's child, can leave a parent feeling almost irresponsible if you focus on anything else. How can a parent do the things he loves — for me, that’s writing and baseball — when my child is much more likely than the general population to die suddenly, suffer depression, or commit suicide, at rates that have increased in the past two decades?

There are written accounts of epilepsy as old as 3,000 years. Yet, it remains a thing many people know little about. It has been called the “Invisible Disability,” because it is often quite hard to detect in the over 50 million people diagnosed worldwide. Until a seizure hits, that is, as it did Lazar on the ballfield, as he ran the bases, smiling at his father.

Lately, I have been working with epilepsy awareness groups, foundations, alliances, health networks, and hospital fundraisers devoted to someday finding a cure for epilepsy. In Lazar’s story, however, we find parents who were giving him the life he wanted right now, the life he deserved, the life that can feel so inaccessible to epilepsy patients, and their parents.

Awareness of the need for a cure is vivid and constant in those who live with epilepsy, and it drives important efforts to find that cure. But the LaPennas also had an awareness of a child’s need for normalcy while we wait for that cure — their need for chances to live like other children, to swing the bat, get a hit, and round the bases.

For Lazar, it was baseball. For Anna, dance. In 2018, her seizures were coming daily. Her treasured annual dance recital approached, and I refused to let her perform. She insisted, and I said no, you will fall down. You will get hurt. You will traumatize yourself and everyone else. Anna fought. My wife overruled me. Anna went and danced. I refused to attend. It was one of the great failures of my life. I failed to see that my child needed this, because it may have been her last chance to have it.

When I imagined Gregg LaPenna watching his son falling on that field, and imagined Lazar’s mother discovering what happened, my only hope was that somehow they will know that they are heroes. They gave Lazar his normal life, with its glorious moments, like his run up the baseline, his season’s first hit, triumphant, joyous, and in defiance of this insidious condition.

We must raise awareness not only to support those seeking a cure, but also those providing patients the life they deserve right now, while they still have the chance.

This guest essay reflects the views of Marc Palmieri, a playwright, baseball coach for Next Level Baseball, and assistant professor at Mercy College in Dobbs Ferry who has a book coming in August about his daughter's struggle with epilepsy.