What is it like parenting a child with epilepsy? What is it like having epilepsy?
Those feelings and experiences can be hard to define. Because the truth is, they change.
Some days, living with epilepsy feels like: routine. On those days, epilepsy takes a backseat place in our daily life. We automatically pull supplements, load syringes with medications, and administer/take them with out a second thought. Our daughter will have her regular, waking petite mals, but be able to quickly re-center and move through her morning routine. She’ll mention her seizures only in passing, to explain her temporary confusion during a conversation, pick up where she left off, and move on. I’ll be distracted enough by other responsibilities and joys in my life, that my stomach will barely register it’s normal “grief clench” over her seizure status, as I auto-reach for her elbow to steady her through an absence.
But, on grace days, living with epilepsy feels like: the last day of vacation. “Grace days” are the terms our family gives to days immediately after we’ve had to administer a rescue medication, due to clustering, status episodes, or grand mals. On grace days, we may see only a few seizures, or maybe even none. For those few hours, life may feel nearly normal again- except for the knowing. Knowing that it is a temporary reprieve. Knowing epilepsy hasn’t really gone, that it’s just been subdued for a short while. It’s the feeling you have on vacation, when you’re still at the beach but it’s raining. You try to relax and enjoy your final free moments, even though work is waiting for you tomorrow. You try to let the happiness of the vacation trump the sorrow of knowing it’s going to end. Grace days feel like that. Sometimes we succeed at making the most of those days, but other times, we spend the day repairing and grieving. Because every one of these grace days has been “bought” by a rescue medication. Every grace day of seizure relief follows directly on the heels of epilepsy’s most hellish days.
And, on it’s worst days, when we’re timing convulsions, rescue meds in hand, and holding our breath as our daughter’s breath is taken from her, praying for it to stop, living with epilepsy feels like: dying. Dying to hopes and dreams. Dying to plans. Dying to expectations. Dying friendships. Dying family. Dying hope. In those moments, despite our best efforts, epilepsy is winning again and it takes all.
However, some people coping with epilepsy say that, to them, epilepsy feels: normal. Often these are people who have born their seizure disorder from birth, and the families who care for them. When you’ve never known anything else, or it’s been so long ago that your memory can no longer recall seizure-free living, epilepsy begins to feel normal. My daughter may one day feel that way about her seizure disorder, as the years roll by, but I don’t think I’ll ever feel that way.
There’s a difference, to me, between learning to cope with a disorder in my child’s life (to the point where everything that’s wrapped up in what it means to “cope well” feels routine), and defining that acceptance/coping as “normal”. Words have meaning, a pastor friend was fond of emphasizing. Feeling that life with epilepsy is “normal” is not the same as feeling it is “routine”.
Because I know normal. I lived a happy, normal childhood. Maybe that’s why it’s been a surprise to me, since we began this epilepsy journey, how many healthy families want to equate their own lives with ours, with cutesy phrases like, “But, what is normal anyways? None of us are normal” and “None of us are promised a next day”. Listen, dear people. It’s a rare moment when a colloquialism is an actual encouragement to someone living through a life valley, and ones intended to “level the playing field” between the life experience of a healthy family/child with that of ones battling life-threatening disorders are ignorant and insulting.
Here’s a truth I wish folks could understand. It’s awesome to have healthy children. It’s awesome to have sick children. It’s awesome to have any child at all. But, that doesn’t mean all children and all family life is the same. There is no need to normalize someone else’s difficult life experience in order to relate to their pain. All that is necessary is to be present, to listen, and to love. Living with epilepsy has taught us that it is a rare, precious, jewel of a soul who’s able accomplish these non-simple tasks. This is why, when we’re with others, living with epilepsy can feel: isolating, lonely, and absolutely aggravating.
Because of epilepsy, our family has been given a gift. No, I don’t mean the disorder itself. I mean the spotlight and pedestal it has brought with it. Because we can’t hide it, epilepsy has become the means by which others who are suffering allow us into their lives to grieve with them, care with them, and speak life. Epilepsy is a podium from which we can shout a message of compassion and hope. We understand deep pain, experientially. We understand loss. And, we understand how faith lifts us up. Although there is no current cure for epilepsy (and many other ailments), there is hope in God for a life well lived and a future with Him. There is hope for the weary, sick soul, burdened ceaselessly with daily pains: His name is Jesus, and knowing Him makes Every. Difference. He is the one thing epilepsy CANNOT take from us. For this reason, living with epilepsy feels like: having a purpose that’s divine.
You’ve just read about how living with epilepsy feels to us. How does living with epilepsy (or your current life pain) feel to you?