My father is a storyteller. It’s an unshakable part of his identity. He was born that way, with an infectious laugh and Sicilian hands from his mother that gesture wildly when he gets to the exciting parts.
Sometimes, he tells me the story of our family. He met my mother in high school when he saw her across the church at the Catholic school they attended. They were married at twenty-one. In 1988, they had my oldest brother Jack, and they marveled at how he laughed so hard when my mother mopped the kitchen floor that tears streamed down his face. Thirty-four months later, they had Jon. They loved how his ears stuck out from the side of his head awkwardly, like he came straight from Santa’s workshop. Thirty-four months after that, with a shock of red hair, came Lydia. And it was good.
But six months later, Lydia had a seizure. For the next twenty-seven years, she would have many more. The worst, my father says, was a week in 1996, when their little girl, who had beautiful red ringlets and loved to sing the Barney theme song, had a seizure that wouldn’t stop. That day, my parents were almost certain that my sister would die.
They took a Flight for Life in a helicopter to Loyola Medical Center in Chicago, where they spent the week in the pediatric ICU. I know from the way my father’s hands hang limp at his side when he tells this part that it had to be the most harrowing week of my parents’ lives. He says he can still hear the sobs of other parents huddled around neighboring hospital beds whose children weren’t as fortunate as Lydia.
Since then, Lydia has been on countless treatments, none of which have worked to completely suppress her seizures. There was the ketogenic diet, in which my sister was only allowed to eat fat – no sugars whatsoever. For her third birthday, she had Barney balloons, a tasseled party hat, and a stick of butter with a candle in it for a birthday cake. At age five, doctors opened her chest to insert a vagus nerve stimulator, a device that sends electrical impulses to the brain when swiped with a magnet. My mother counted one day and found that Lydia had been on at least twelve different medications. On Lamictal, my father remembers how she seemed to change overnight, how she suddenly had no interest in the baby blanket she always carried around, and how he and my mother were sitting on the porch one day when Lydia started screaming and screaming and they didn’t know what to do. They couldn’t do anything. At some point in her teenage years, Lydia stopped eating, had a feeding tube placed, and shrank from a hundred-sixty to ninety pounds.
Soon, my mother may have another medication to add to the list. A few years ago, she heard about a drug that had worked wonders in certain cases of epilepsy for other families: marijuana. In children with the same disorder that my sister has, patients had sometimes seen a reduction in seizures by almost half.
Here is the problem: unlike other drugs, this one’s a federal crime. There is a law in Wisconsin that, in theory, legalizes medical marijuana for children with epilepsy. The caveat is that you can only get it if a doctor prescribes it to you, and doctors can’t prescribe it unless the FDA gives them permission to, which will only happen if the federal government reclassifies marijuana.
While my mother found a way to acquire CBD, an extract from the marijuana plant with no hallucinogenic properties, THC, the hallucinogenic part, could potentially provide more help as a seizure suppressant, as well as reducing the aggression and appetite suppression that come as side effects of my sister’s other medications. But when the bill semi-legalizing CBD was passed, lawmakers made it clear that they were in no way supporting this other component of marijuana.
As parents who would do anything for their sick child, this puts my mother and father at an uneasy crossroads.
****
When I am five or six years old, I wake up in the bedroom I share with my sister and find her staring across the room at me. She smiles, but it’s not like her usual smile, which is goofy and lopsided. Her red hair falls in ringlets around her pale face.
“Good morning, Abby,” she says, and I stare at her curiously, my tired eyes wide.
“Good morning?” I say. Lydia has never talked to me before. She has hardly said a word to me before, other than “chicken,” which she parses out a syllable at a time like a toddler when she’s hungry.
She pats the space beside her in bed, right in front of her Winnie the Pooh pillowcase. “Wanna read a book with me?”
Too excited about the prospect to question her newfound abilities, I hop up next to her. For a long time, we take turns reading through our favorite Winnie the Pooh books, laughing so hard when Piglet accidentally sits on a balloon and pops it that we worry we’ll wake up Mom and Dad.
“Mom and Dad!” I remember, suddenly, in the midst of the story. “Come on,” I say, tugging on my sister’s hand, “we’ve got to show them you’re better!”
I run into the hallway, my eyes filling at the thought of how overjoyed Mom and Dad will be to see that Lydia’s okay now. As I am halfway down the hall, something stops me. I see their closed door in the early-morning darkness, the dim light filtering through the crack in our bedroom door providing just enough illumination to make out the hazy outline of their door frame.
At this moment I open my eyes. The sun filters through our silky purple shades a soft lilac color. Across the room, the shadow of my sister’s chest rises and falls in her sleep. The silence crashes over me, weighs down on my chest.
I lie in bed for what feels like hours watching how the shadows change with the rising sun, until Mom comes into our room to get us ready for the day. I say good morning to Lydia when Mom wakes her up, and she looks past me with a goofy smile.
****
Fifteen years ago on a day in early April, as the air was just beginning to warm up from a long winter, a little girl was born in a house an hour away from ours. The little girl’s name was Lydia.
Much like our Lydia, she suffered from a rare epilepsy disorder that caused her to have multiple seizures every night while she slept. She loved to rock in her rocking chair and play with toys that lit up when she touched them, and one of the only things that could comfort her was her mother’s voice singing “You are My Sunshine.”
Her mother, Sally, was a fierce advocate for Lydia, and after trying medication after medication with no progress, she stumbled upon CBD oil. She knew she had to get it for her daughter, so she knocked on the doors of politicians, called news outlets, and told anyone who would listen about what this drug could potentially do for her child.
Sometimes, Sally remembers, she would sit in the quiet darkness of her daughter’s room and sing to her. “We’re going to make it. We’re going to do this,” she recalls telling her daughter in an interview with the Milwaukee Journal Sentinel. “Mom is never going to give up.”
The law Sally advocated for passed in May 2014, but the caveats about doctor’s prescriptions made CBD oil almost impossible to acquire. A month later, on Mother’s Day morning, Lydia died in her sleep before she ever had a chance to try it.
“I kept thinking to myself we’ve just got to buy Lydia some time, we’ve just got to buy her some time,” Sally told the Milwaukee Journal Sentinel later that month. “And I guess we didn’t buy enough.”
****
I still remember my mother calling me a few years ago on the walk back to my dorm room after class. “Well, Abby,” she said as I picked up, “what do you think about taking a trip to Colorado this summer?”
In Colorado, there are three brothers who ensure the purity of the marijuana they grow. They take care that their product has as close to the same amount of active drug per milliliter as possible, which my mother worries about because Lydia has always been so sensitive to changes in medication. Some of her friends have people grow it locally, she says, but she worries about the purity of those samples. Lydia’s doctor trusts these brothers, and so my mother trusts them, too.
We discussed the details of picking it up and smuggling it back across the border. Some of her friends have done it, she said, and they say as long as you don’t get pulled over, nobody will ever know the difference.
My mother, as far as I know, has never done anything remotely risky in her life. The eldest of four siblings, she was the one who kept everyone in line, who made sure everyone was doing the right thing. She is quiet, sweet, and quick to help when our elderly neighbors need rides to the doctor’s office, the church needs volunteers for a coat drive, or her father needs his bathroom cleaned; she loves watching House Hunters International and Hallmark Christmas movies.
As we talked, I found something thrilling about this prospect, about committing a victimless crime out of fierce love—something Robin-Hood-esque about imagining my mother staring down the law and saying, “Yes, arrest me, then, for the crime of wanting my daughter to live.” There is a pride and a heartache in knowing she would bite and scratch and claw and spit in the face of every single person standing in her way if it meant there was a chance that my sister would get even a little bit better.
I imagined us driving to Colorado, the sun shining in my sister’s red hair. She loves the feeling of the wind howling across her face, so we would roll down the windows, and she would throw back her head and laugh. I imagined us in the mountains, where we would breathe fresh air and buy THC oil and on the drive home, I would imagine a world in which I wake up and Lydia does not have seizures anymore, and she asks me to read with her, and I bound out of bed and run to tell my parents. I would think about sunshine, and how it feels to be so close to it, and how the warmth would ache on my skin; and in the back of my mind, I would think about how even in the mountains, the sun is still so very far away.
