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6 Ways We Define Epilepsy in Our Family After My Son’s Diagnosis

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My name is Becky, and I’m a clinical social worker who lives in rural Minnesota. More importantly, my husband, Jake, and I are the proud parents of two rowdy boys: Quinn (age 6) and Gabe (age 5). At 2 months old, Gabe experienced his first seizure during the middle of the night, numerous seizures thereafter, and within the year was diagnosed with epilepsy. By the following year, providers were able to determine that the type of epilepsy he had was genetic in nature, specifically caused by an abnormality on the SCN1A gene, and called Dravet syndrome.

Gabe’s would experience a seizure every two to six weeks, and while considered “infrequent” in the epilepsy world, they were severe in nature and would not stop once they started. At age 3, Gabe was placed on a medication regimen that has significantly decreased the frequency and severity of his seizures.

Fast forward to today. November is Epilepsy Awareness Month! As we bring closure to our fifth year celebrating Gabe and all he brings to our lives, I also reflect on the experiences, life lessons and opportunities epilepsy has played a role in, in our household.

When a person genuinely asks, “What is epilepsy?” or “How is everything going now?” there is so much that swims through my head. I struggle to think of a response that could be considered socially appropriate in the context of “small talk.”

In our family, epilepsy means:

1. Navigating a world of “specialists,” “procedures,” and “medical coverage”: It is learning the role of occupational therapy, physical therapy, speech, neuropsychology, neurology, behavior analysts, gastroenterology, geneticists, immunology and sleep pathologists. It is understanding the purpose of MRIs, EEGs, ultrasounds, X-rays, spinal taps, routine lab draws, annual reviews, positive support strategies, communication devices, fine/gross motor exercises, range of motion, picture schedules, and sensory exposure interventions. It is knowing when one needs a prior authorization, primary versus specialty referral, physician’s statement, or external review. It is learning if necessary medications are available at the local pharmacy, metro location or a different country. It is thanking God every day that I went to school for this and wondering how others learn to navigate these systems with limited assistance, as I continue to have significant difficulties after seven years for formal education.

2. Finding the value of “the village”: And learning the positivity that humility and being humble can bring! It is being grateful for the friend who sits on our couch in the early morning hours, calling others to offer support, after you have spent the night in ambulances and emergency rooms. It is allowing others to rearrange your entire day’s schedule, offering notices for cancelled meetings and informing others. It’s grandmothers who religiously drive your son to/from his twice-weekly therapy sessions, held in a town 30 minutes away. It is listening from a bed while you snuggle your precious baby, and others are cleaning your kitchen, folding laundry, vacuuming, and cooking meals.

It is watching your friends follow your peanut throughout your home with watchful, second-mothers’ eyes to ensure he is safe as he climbs atop bunk beds, shelves and into sinks, exploring the world. It is a childcare provider who, I believe only by the grace of God, brings forward a perfect complement of life experience, love, knowledge and patience each day so I am able to feel comfortable going to work every day. It is a primary care provider I am able to call for any concern day/night, who genuinely cares about our family as a whole. It is a team of community responders who know Gabe, remain vigilant to respond if needed, and who have offered excellent care and advocacy time and time again. It is educators who take the time to learn as they provide creative effort to teach, with a focus on inclusion and relationships. It is our community who genuinely cares and checks in, while at the grocery store or gas station.

3. Falling in love with your partner over and over, for reasons you never would have anticipated: After 17 years together, it’s getting to observe that the characteristics you fell in love with were only a baseline, and that his protective nature, intelligence and compassion will multiply by 100 when it comes to meeting the needs of his family. It is watching him snuggle in his bugs, countless times throughout the night, with patience, love, hugs and kisses. It is watching him repeatedly pick up thrown objects, clean up messes, and wrap up our Mr. in a hug after a meltdown. It is being able to support one another when the other needs lifting, and synonymously catching one another’s knowing eye when daily successes are a means to celebrate.

4. Observing that sibling relationships are just that: There are days where they love one another, and for a brief second, can be observed resting their heads on one another’s shoulders while watching a movie. On other days, they are seeing who can give the other more bruises. It is watching them develop their own type of communication. Seeing Quinn attempting to teach Gabe language: “Watch my mouth, Gabe. Tree! Tree!” It is knowing that our 6-year-old knows what a seizure looks like, and is comfortable remaining calm and getting help. It is having faith that we are raising two humans who will genuinely understand that different is not less.

5. Learning what it truly means to place your faith in a higher power: It is knowing that when you have not an ounce of “control” left, there can be peace in knowing “someone else has got this.” It’s understanding that in a split second, you may no longer get to make decisions or take pain away. It’s watching helicopters fly your child to a different location, while you must drive to meet them an hour later. It’s standing to the side while spinal taps and bone-drilled IVs are administered in emergencies, without sedation. It’s holding your baby’s hand before it goes limp, as white medication is pumped into their arm, to make the seizure stop or prepare them for a procedure.

6. Having the opportunity to be a part of another person’s growth, and firmly understanding he will be who he will be: He is Gabe — our watchful, focused, curious son. He’s our alarm at 6:30 a.m. every day, who is sure to communicate that breakfast better be on the table in 10 minutes or else. He is walking proof that words are not necessary to get a point across. He is an Adele lover and “Hey Duggee” fan whose favorite snacks are Cheetos, M&Ms and Dum Dums. He’s a daily reminder that cognitive screenings and behavioral diagnosis are quantifiers for benefits/services — not a reflection of one’s potential and capabilities! He’s a professional rock-thrower, pop-finder and Grandpa’s swimming partner.

Gabe shares his interests by grabbing your hand and bringing you to sit with him as he puts together puzzles, navigates Netflix on a smartphone or plays with his computer. He is the guy who will gently place his palm on the side of your face to direct you to what he would like you to see. He is a flirt who kisses the back of girls’ hands before waving goodbye, and who offers goodnight kisses before motioning you away as he turns to sleep.

So to end where we began: “What is epilepsy?” “How is everything going?” The typical Minnesota answer you may receive is, “It is what it is. Has its ups and downs, but overall things are going great! Couldn’t be prouder, and we look forward to each day that is offered to us.”

For additional information on Dravet syndrome, you can go to the Dravet Foundation’s website.

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Image via Thinkstock Images

Originally published: November 16, 2016
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