My daughter was born with an autism spectrum disorder. Two years ago, at 13, she developed a seizure condition. This was not an ideal trajectory.
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 comes to mind!?”
While it may sound cliché to find the best of a bad situation, or “turn those lemons into lemonade,” the reality is what choice do we have?
There is no predicting when a seizure will occur. They have no rhyme or reason. There are certain factors that can contribute ― sleep deprivation, dehydration, low blood sugar ― but largely it’s out of our control.
As parents do, we learned early on how little control we have over our children’s movements. They roll, they crawl, they pull to stand and they’re off testing limits. At 12 months, our oldest son stumbled into a coffee table requiring the rite of passage ER visit and eyebrow stitch. At age 2, our second swallowed a bright pink ball of Borax-based putty. Poison control was not impressed.
And when it comes to the youngest, a preemie prone to chest infections, my husband and I logged countless hours in a steam shower willing croup away. Parents do everything we can to follow directions. We pad, secure, and buckle them in as tight as we can. 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 hammer that lesson home with a mallet. When something takes hold of your child from within, the terror grips 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 halt the ticker tape from scrolling: 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 would have 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.
Generally speaking, all children 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 you would like. They don’t sleep, they won’t get dressed, they can’t find their socks, 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, you gain perspective and realize it doesn’t matter.
Perspective, for a parent, though, still can prove elusive. A friend’s son recently lost a seventh grade championship basketball game and my friend was “bereft.” He understood this was a completely irrational response. But parenthood is an irrational endeavor.
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. We can control everything. We can control nothing.
The very definition of a good day transforms. What it means to be happy, what we value and prioritize all take on new meaning.
Our daughter’s autism has ingrained in us an appreciation for what many overlook. Erin marvels at the everyday ― the sun “smiles,” trees “dance,” the birds “tweet, tweet, tweet” ― and it’s hard not to smile and marvel back.
The onset of epilepsy only reminded us to take it in one moment at a time and taught us to see every seizure-free day as a small victory. It’s also helped us to appreciate how very fortunate we are.
Autism and epilepsy were not classified neurological conditions until the mid 20th century. Not long ago those who lived with these disorders were looked upon with suspicion and often socially outcast. There were no days, months or colors of support. With understanding and awareness comes acceptance, and for that we are thankful.
We are also grateful that 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.
I recently learned that a friend’s 19-year-old daughter passed away. She had endured a life-long debilitating seizure condition. This young woman and her mom had been through so much. Surely there is no positive to any of this, I thought ― until I found myself sitting in a packed church listening to that mom deliver a eulogy all about silver linings.
She spoke with passion and grace about the 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,” her mom said through tears and a smile of her own. Her daughter redefined hope and happiness for all who knew her and for that her mom was grateful.
Her gratitude and joy reminded me that whatever life hands us, all we are ever empowered to do is to hold, to care for and to love our children for as long as we can. That we can’t control the when or why or how, but can respond with strength and love ― and always look for silver linings.
Maybe that’s the upside.