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Searching for the Silver Lining of My Daughter's Seizure Condition

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My daughter is on the autism spectrum disorder. Two years ago, at 13, she developed a seizure condition. There are no positives to seizures, but as they have become part of our routine — or part of what throws it off — I am stretched to find an upside.

When I shared this thought with a friend she asked, “Exactly what upside pops to mind?”

While it may sound cliché to find the best out of a bad situation and “to turn those lemons into lemonade,” the reality is, what choice do I have?

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There is no predicting when a seizure will occur. They seem to have no rhyme or reason. There are certain factors that can contribute to them — sleep deprivation, dehydration, low blood sugar — but largely it’s out of our control.

As many parents do, I learned early on how little control I have over our children’s movements. They roll, they crawl, they pull to stand and they’re off testing limits. At 12 months my oldest son stumbled into a coffee table requiring what seems the “rite of passage ER visit” and eyebrow stitch. At age 2, my second child swallowed a bright pink ball of Borax based putty. Poison control was not impressed.

And when it comes to my youngest, a preemie prone to chest infections, my husband and I logged countless hours in a steam shower willing the croup away. As parents, I believe we do everything we can to follow directions. We pad, secure, and buckle the kids. We dispense the antibiotics and chicken soup. We cheer on their small bodies — but deep down we know it’s out of our hands.

Seizures can hammer that lesson home with a mallet. When something takes hold of your child from within, terror can grip you to the core. I have never felt so helpless as I did watching Erin’s fingers and lips turn blue during her first grand-mal. I was convinced we were going to lose her and there was not one thing I could do about it.

I turned her on her side as she continued to convulse. I prayed for it to stop but could not stop thinking, so this is how it ends. What felt like an hour later (probably closer to two minutes), her breathing returned to normal. Were she not lying in a bath tub, she looked as though she might be napping.

What I thought was the end, was really just the beginning of a new chapter with Erin. Over the years, we’ve learned to navigate an ever shifting terrain of unexpected phone calls, behaviors, responses to medications and social situations. Really, the only thing we’ve grown to expect is the unexpected.

I believe children can condition parents to adopt this mind frame. Kids don’t always conform to a schedule, they don’t move as fast or as fluidly as we would like. They don’t sleep, they won’t get dressed, they have meltdowns and bloody noses just as you’re racing out the door. You miss the bus, the class, the appointment, the party. Miss after miss, though you realize it doesn’t matter.

At the same time, perspective can be hard to come by as a parent. A friend’s son recently lost a middle school championship basketball game and my friend was bereft. He understood this was a completely irrational response, but parenthood can be a very irrational endeavor at times.

When you have a child, you are handed a stranger for whom you would lay down your life and whose emotions will always serve as a barometer for your own. Their arrival establishes a new world order. It’s as if that baby comes with a camera lens which intermittently zooms in and pans out over and over again. At least this has been my experience.

We can control everything. We can control nothing.

The very definition of a good day can transform. What it means to be happy, what we value and prioritize, all can take on a new meaning.

The onset of Erin’s seizures forced us to slow down, to take it one moment at a time and to see every seizure-free day as a small victory. It’s also helped us to appreciate how very fortunate we are.

Epilepsy was not categorized as a neurological disorder until the mid 19th century. Historically it was considered “The Sacred Disease” because people were thought to be invaded by demons or spirits. If we lived years ago, Erin would be looked upon with suspicion; a social outcast. With understanding comes acceptance, and for that we are grateful.

More so, we are thankful medicine has helped to reign in Erin’s seizures. They now occur less frequently and have been limited to the lesser focal or petit-mal. This is not the case for all people.

Just a few days ago, I heard that a friend’s 19-year-old daughter passed away. She had lived with a life-long debilitating seizure condition. My heart broke for all this mom had been through. Surely there is no positive to any of this, I thought, reeling it all back, until I found myself sitting in a packed church listening to that mom deliver a eulogy about silver linings.

She spoke with passion and grace about the many lessons her daughter taught her. Her daughter could not talk and could not walk, but she could love and she could smile. “She had a beautiful smile,” she said through tears and a smile of her own. Her daughter redefined hope and happiness for all who knew her, for that, her mom was grateful.

Her gratitude and joy reminded me that whatever life hands us, we can hold, care for and enjoy our children as long as we can. We can’t control the when or why or how, but we can react with strength and love.

Maybe that’s the upside, the silver lining.

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Thinkstock image by vadimguzhva

Originally published: May 19, 2017
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