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How My Children's Febrile Seizures Affected My Mental and Physical Health

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My son was only 18 months when he had his first seizure. We were at the doctor’s office at the time and I remember leaning against the wall, hyperventilating and sobbing. We were fortunate to be at one of the safest places possible, but considering the situation, our fortune was pretty thin. I felt so little, so useless, and most of all scared. Wonderful medical staff tried consoling me and clearly explained more about febrile seizures, stressing they were harmless and wouldn’t pose any kind of a serious health problem. The truth is, I already knew a little about this condition because when I was younger, I had seizures, too.

According to my parents, it was not pretty. Whenever my mom was questioned about my seizures, she would act nervous. “The worst time” she would utter. And then, she’d refuse to talk about it much more. “I don’t want to be reminded” she would cleverly end those attempts at conversation. The thought of my mom saying those things, who was not alive at the time I had my son, made me extremely paranoid and anxious.

Every time my son would have a seizure, he’d stop breathing and required oxygen. It was a pretty scary ordeal that could at any given moment turn into an even bigger nightmare. I feared that more than anything. Thankfully, my son pulled through each and every time. He was a fighter and stronger than I ever imagined.

When we welcomed our second child, a little girl, we were ecstatic. My happiness lasted for a moment, but it quickly faded when I found out my daughter had the same condition of complex febrile seizures.

My mind got foggier by the minute and I lived in constant uneasiness and fear. I started developing all kinds of phobias. I feared playdates, dirty hands, germs, public play areas, museums, restaurants, farms, pools, swings, dogs and pretty much every little kid who came close to us. I examined our family friends studiously to make sure they didn’t look sick. I even made my dad wash hands while I watched. I disinfected our house daily and carried disinfectant wipes, gel and a lotion anywhere I went. Those who knew me well kept reassuring me that my kids would be fine and told me to relax a little. That was so easy for them to say, I thought. And at times, I was offended because my friends had no idea what our lives with seizures were like. They had no clue what it meant to be at the hospital biweekly or how helpless you’d feel after your child couldn’t breathe on their own, once again. How those long and multiple seizures could cause all kinds of permanent health issues. They couldn’t possibly understand what not sleeping seven plus days in a row meant, but still be a fully functioning mom, wife, friend, cousin, business partner — a broken woman. And what true desperation felt like: when you sense a cold or a virus coming and you start anticipating another seizure. Another hospital stay. Another week from hell. And you know it will happen, but you have no idea when. So you don’t sleep. You don’t eat. You just wait. And then you hustle.

After each one of these episodes with both kids, I started having all kinds of health issues. Sometimes, I wouldn’t be able to get out of bed. At other times, I’d have debilitating back pain, excruciating migraines, stomach issues, insomnia, only to name a few. So when the kids were not at the hospital, I was. We took turns, and if it wasn’t so serious, it would be comical. After a few real deal health scares, I realized something has got to give. I finally acknowledged my anxiety has gotten the best of me. It was controlling my every emotion and every breath. I was tainted with panic and dizziness, with emptiness and lack of strength, with drainage of positivity and love. I was not myself any longer. But at least I managed to recognize my problem, so I could seek help.

Eventually, I found many ways to force myself out of my own detrimental mind. I had to get up from the rock bottom and change the way I look at all things. I asked myself whether I wanted to live and see my children grow and I knew I did. I still had that yearning for life. I still had that drive to initiate a positive change in the present moment. I dreamt of simple things: watching sunsets, drinking coffee with friends, visiting vineyards, walking barefoot with my husband and kids on the beach. I was ready to fall in love with life once again, but in order to do that, I had to fall out of my illusive mind. I had to meet the world on the other side of fear where awareness and acceptance bring inner joy and peace. And after getting over many hurdles, I did that.

The road still remains challenging and rocky, but every minute flows with more ease. I can feel life in every smile I see, I can find bits of beauty in all flaws and imperfections. Every chance I get, I try to practice stillness. I am unconstrained by anxieties and fears and I stand up proudly, because I feel finally free.

Getty image by Electra-K-Vasileiadou

Originally published: July 21, 2018
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