When adversity hits: how one family copes with a child’s health concerns

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ad·ver·si·ty

/ədˈvərsədē/

noun

difficulties; misfortune.

COVID-19 reshaped our society. Millions more Americans have turned to food shelves and rely on unemployment checks for support. For many, finding the money to pay rent and put dinner on the table can be extremely stressful. 

It’s these moments of adversity which ultimately make us stronger. Knowing that you passed these hurdles will help you overcome future hardships, whether they’re financial, mental, physical or emotional.

Unfortunately, overcoming adversity was something I faced at a relatively young age. My mom, Pat, died when I was 17. She was diagnosed with cancer in August 2003, and before October ended, we said goodbye. Her loss left a dark hole in my family. I experienced a crash course on how to juggle emotions during my senior year of high school.

My dad suffered a stroke when I was 24. We didn’t know if he had a health care directive, so I made the difficult choice of whether we should keep him on life support. We decided to say goodbye. 

When I was 28, I was diagnosed with epilepsy. I was working when my first seizure occurred, and the grand mal seizures came from nowhere. Epilepsy does not run in my family, so it was a surprise.

Through all this, I learned that it’s not a question of if adversity hits, it’s when. And when misfortunes happen, you need to go one day at a time. You learn to celebrate minor victories.

I also discovered you can’t let life pass you by. Make the most of what you have and who you have. No matter what happens, you still have the ability to achieve greatness.

Living the definition of adversity

Through my time volunteering with the Epilepsy Foundation of Minnesota, I have heard incredible stories of families who overcome adversity, despite the hardships and hurdles they face every single day.

Carrie Buck, her husband, Chuck Semrow, and their son, Cody, live the definition of adversity. When Cody was two years-old, he experienced his first seizure in the middle of the night. He was taken to the emergency room, but was sent home. 

“About 10 months later, he had what appeared to be another seizure in his sleep, arms and legs rigid, head tipped back, and making a noise like he was choking on something,” Carrie recalls. “This time though, he didn’t have a fever, didn’t stop breathing, and regained consciousness after it, so I thought it was just something else that he was doing in his sleep.” 

Fast forward four months, and Cody experienced another episode. After a visit to a primary care doctor and a neurologist, he was diagnosed with epilepsy. “We sat stunned,” Carrie says. “There was a young man at church who had epilepsy. He wore a bandana around his neck to catch drool, shuffled when he walked, and was largely nonverbal. My husband and I both had the same thought, ‘That’s what’s going to happen to Cody?!’”

Originally, Cody’s childhood epilepsy was a diagnosis doctors thought he could outgrow. Three years later, an MRI reading identified a structural defect in part of his brain called a focal cortical dysplasia which meant he will never overcome epilepsy. Later, Cody was also diagnosed with a second, rare type of epilepsy and has tried five different medications, one which actually started causing seizures.”

“Cody’s seizure frequency worsened a few years ago. He went from usually one every couple of months to six seizures in three weeks, at which point his doctor said it was time to start surgical assessments,” Carrie says. 

Despite years of seizures and electroencephalograms (EEGs), one of Cody’s seizures was never caught on an EEG, which helps confirm the origin of the seizure. For five days, doctors forced sleep deprivation and reduced medications to witness a seizure. Unfortunately, nothing noteworthy was captured. 

“There is nothing predictable about epilepsy, and since it is so individualized with dozens of reasons someone might have a seizure, there is no clear, one size fits all approach,” Carrie notes. “Despite extensive education and experience, even the experts can’t say for sure what will happen in the future for Cody. And that has maybe been the hardest part of epilepsy. There are so few answers and so many unknowns.”

Also on Give Me The Mike…

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How to overcome adversity

The journey with epilepsy trained Cody and his family in dealing with the COVID-19 pandemic. “We have had to make many changes to our schedules and expectations of what we can do, both socially and in service to others,” says Carrie. “We live within those parameters and understand sacrificing a night out, like sacrificing going to school right now or running quickly to the store for something, is just what we need to do. We have a very different ‘normal’ from most people, and most people now have a very different ‘normal’ from their old lives. This is for a purpose, though, and keeping that in mind can help. It is the new normal for now, not forever.”

Through the journey, Carrie has learned to be thankful for every day. “I write in a gratitude journal every morning at least three things from the previous day that I am grateful for, even if it’s something as simple as the really loud cardinal singing in my backyard. As a family, we also say every night what we were grateful for from the day. Cody has been grateful for his pillow and blankets and bed. That might sound foolish or forced to an adult but we really are fortunate that we have those things.”

To keep perspective, Carrie has posted ‘Gratitude Tuesdays’ on her Facebook page several times since COVID-19 hit. Her first post was how she was grateful for a home in which her family can shelter in place.

Music plays a big role in her family. “When we drive somewhere, even just a few minutes away, we play music. We listen to songs that bring us hope, that are uplifting, sometimes songs that make us cry when that is what we need,” Carrie says. “During some of the worst days of epilepsy, I had music playing on both floors of our house so when I went to the basement, the same song was playing on the radio that was playing upstairs in my kitchen. I have found when I don’t sing, it’s too easy to get stuck inside my head and that’s often a depressing or angry place.  When I sing, I have hope and don’t feel so alone.”

And it is completely fine if emotion overwhelms you. Carrie says, “On those really bad days, when I just can’t stop crying or reach out to someone else, I try to give myself some kindness and just accept that’s where I’m at today. I try to rest. I try to let go of expectations of what I should get done, let go of guilt about not getting enough done, or not reaching out to someone the way I think I should. Some days you just can’t do more than survive. And that’s okay.”

“The adversity we have experienced from battling epilepsy has tried to take away our joy. It has tried to diminish life, our enjoyment, awe, and gratitude for it. It has tried to make the future scary and dark. It has also made us stronger.”

Carrie continues, “Adversity makes you think it will win. Sometimes it does. It also makes you think you are alone. If you are alone in adversity right now, reach out. Now. Reach out to a family member, a friend, a coworker, a church, any of the incredible social service agencies the Twin Cities are blessed to have, a support group, your child’s teacher, a neighbor.” 

“If you are actually surviving the pandemic relatively well, reach out! Reach out to someone not as fortunate as you are. Donate food to food shelves or money to any of the social service agencies in the Twin Cities or a local church. Check on your extended family, friends, and neighbors. What we have learned in all of our adversity is to ask for help when we need it and to offer it whenever we can.”

Together, we will get through this adversity and whatever else may come our way.

One in 10 people will experience a seizure in their lifetime. The Epilepsy Foundation of Minnesota provides great resources for those who have experienced seizures and families who face the adversity of an epilepsy diagnosis. Connect with them at www.epilepsyfoundationmn.org.

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Read how I adapted after losing both parents before I was 25 and being diagnosed with epilepsy.

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