More
In honor of CURE Epilepsy’s third annual virtual event, “Unite to CURE Epilepsy” which debuted last night (but you can still watch whenever is convenient for you!), I wanted to share a personal story from our epilepsy community. Tracy Molnar responded to my call for guest blogger submissions, and I am thrilled to share her experience with her daughter, Lemon. Her vulnerable essay is a sincere reminder of what we are fighting for and how important this community is to each other.
A string of dates gave me some of my most memorable life’s events: college graduation, wedding, births of three children, miscarriages of two, job changes, and new homes. But it was a day in November 2013 when my world was transformed, and I transitioned from “normal” wife and mother. On that day, my daughter had her first known seizure, and we were thrust into a new life of EEGs, ambulances, MRIs, medicines, side effects, neurologists, surgeries, and on and on.
My daughter, known as Lemon, is a force to be reckoned with. She has more attitude and spunk than I can even explain. My husband and I affectionately refer to her as “More”. With her, she brings more zest, love, life, smiles, and also more confusion, attitude, stress, frustration, and unknowns. Throughout her ten years of bringing ‘more’, Lemon has also added more diagnoses. A diagnosis is sometimes just a string of letters making a word. And sometimes those words can also bring comfort as well as a new family of people I never knew I needed and a reassurance of “oh that’s why…”.
The medical obstacles are beyond challenging: watching seizures happen, waiting for the next to happen, seeing a spinal deformity bring on incontinence. These things suck. A fellow Epilepsy mom told me early on “epilepsy is a soul sucking beast” and I can never get that description out of my mind.
It fits.
It hurts.
It’s oh so crippling real.
Sometimes I feel like my soul is sucked out daily while waiting for what’s next. Or when searching for answers to well-meaning questions like “oh, was this seizure a bad one?” What am I supposed to say? “Oh no, this one was a real hoot. We laughed and laughed.” …Probably not helpful.
What’s also not helpful? Adding in mental struggles on top of the medical struggles. It turns out that people are OK and even sympathetic to a seizure or surgery. But if your child has manic breakdowns, OCD episodes, autistic ‘movements’, aggressions and massive mood regulation issues? Well, that’s just not socially acceptable or fun for others to be around. But I’ll tell you what it is to me…it’s lonely in ways I can’t even being to explain. I can be surrounded by people and feel lonely. I can have visits from friends, receive texts, go to lunch with someone, you name it, and still feel profoundly alone, like I’m the last person left on the planet.
Instead of wondering what Lemon learned today at school, we’re hoping she doesn’t have a seizure or an episode where she screams and hits and gets sent home. Instead of deciding what to buy for a classmate’s birthday party (if she gets invited), we make up excuses of why she can’t go because she’d never tolerate the noises or change in routine. Instead of looking towards what college she’ll choose, we’re wondering what type of group home she’ll need. At times, the loneliness consumes me.
But then God sends me a friend from one of those new families I gained. Or a kind look from a stranger or a teacher who understands, or is at least sympathetic. Or our Lemon gives me the biggest, most soul connecting hug. Or Lemon’s brothers grab Lemon’s seizure medications without even being asked. Or my husband reminds me that the waves will keep coming, but we just need to keep surfing them together.
Our lemon has brought out the ugliness in people: the lack of understanding, the harsh statements that she doesn’t belong, the stares. But she’s also brought out the best in others too. Like the time a school aide told me, Lemon makes her a better human being. That’s what I hold on to. I know there will be other jerks in our path. But for Lemon, I need to ignore the heartless assholes and embrace the love and sweetness and breath of fresh air that she brings me and so many others. Together, we will surf. More waves. More surfing. More love. Repeat.
You can follow or connect with Tracy at:
https://instagram.com/tracymolnar
https://www.facebook.com/tracy.k.molnar
If you would like to be featured as one of my guest bloggers please feel free to send me a pitch or your writing to info@kellycervantes.com. Topics must be in line with past Inchstones by KC topics including: epilepsy, medically-complex life, rare disease, disability, loss, grief, adoption, etc. THANK YOU!
