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The Day Seizures Enter Your Child's Life

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I recently read an article on The Mighty in which various people expressed what it feels like to experience a seizure. I read them all with tears in my eyes. Three years ago I knew nothing about seizures. I knew nothing about meds used to control seizures. I knew nothing about first aid for an individual experiencing a seizure. If I’m being perfectly honest, I probably would not of been able to recognize one.

This all changed on June 22, 2014. My daughter was 3 years old. We were on a vacation in Maryland with extended family. We had a pretty low key day at the cabin. She had eaten like she always did, had a good nap and was generally happy. I was walking with her outside the cabin while dinner was being prepared, and I noticed her walking was a little more unstable than usual. I asked her if she was tired and wanted me to carry her back to the cabin, thinking Little Miss Independent would say no. She said yes and put her hands up. By the time I got her inside and to my husband, she was barely keeping her head up. She was staring off to the side, not talking, not moving, and her coloring seemed a little off.   

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I heard sirens long before I saw the ambulance flying down the long driveway. I watched as paramedics scooped her tiny body up and put her on a gurney and immediately started their work. I heard questions and suddenly wasn’t sure the answers. I grabbed her “baby” — her one comfort item other than her thumb — and watched her loaded into an ambulance. I followed the directions the paramedics yelled at me and sat next to her. I was afraid to touch her. Her purple shorts and gray shirt with the word “LOVE” across the front were now covered in vomit. The child that 20 minutes earlier was walking next to me holding my hand and giggling was suddenly motionless and unresponsive, and I had no idea why. In that ambulance, as we pulled away from the cabin with our son and other family members preparing to eat dinner and keep things “normal” for the kids, I looked up at my husband for the first time and met his eyes filled with tears. What was happening to our daughter?

One of the paramedics broke the silence and asked if she had a history of seizures. Seizures? No. Seizures? And that began our first official lesson on seizures. Not all look the same. Anyone can have them at anytime. You can have them and not even know it. We would have more information thrown at us in the next 72 hours than in four years of college. We would learn the triggers for her seizures are unknown so they can occur at any time. A doctor would tell me I would never sleep the same way again — I learned this was true that night. We would learn about daily meds and the need to track her weight and height to stay ahead of possible seizures. Carrying her emergency meds everywhere we went would become a habit. We would learn that explaining what her seizures “look” like is impossible, as we have a hard time recognizing them ourselves. We learned our schedule would become very fixed to ensure proper amount of sleep. We would learn not to deviate too much from her calm daily life.

Our life changed that day. 

The possibility is always there. We are always watching her movements, calling her name when she is too quiet in the backseat, and at times pulling off the side of the road when she does not respond, and trying to anticipate when the seizure will sneak up and rock our security. As time passes post seizure, you begin to relax, but the fear of what may be lurking minutes away is never gone. Ever.  

We have gone through seizures with her that required taking her to the hospital four times. The most recent seizure was just over a week ago after nine months seizure-free. And in one night that calm of possibly finding the right combination of meds was erased again.  

To try to explain what happens when your child is in the throes of a seizure and surrounded by doctors and nurses trying to wake her up is impossible. You learn to ignore the “what ifs” at the time, but somewhere in your mind you are begging, pleading with your child to please just wake up. Please. Once the seizures stop she goes right into a deep sleep. And the next phase of waiting begins. You watch her. You go up to her ear and talk to her. You play her favorite music right next to her head hoping that will open her eyes. You might even pinch her just to see if she will move. And you wait. Usually 6-8 hours later she finally opens her eyes, and you realize for the last 7 hours you’ve been holding your breath. You wait for her to say something — anything to truly know she has come back to you.  And you begin the count the days at first, then months, hoping that this time the seizures are gone for good.

We had no choice. I never knew this level of helplessness until June 2014. You have no control over this evilness, and you say you won’t let it control you and your life, but it does.  Every day it is always a possibility. Seizures do not take holidays. The do not cooperate on vacations. They do not care that your child already has so much to overcome on a daily basis.

Others will tell you to relax and not worry so much. They will remind you that you can’t control it. You can’t stop it. You have to have a “normal” life. You know this is true. But you also know you don’t want one more time of seeing your child loaded into the back of an ambulance. You don’t want to sit in next to them, headed to the hospital wondering if you missed a dose of meds or if you should or shouldn’t have given the emergency meds. You don’t want to wonder if she can hear you or if she is scared or if she knows what is happening. You don’t want to stand in the doorway of an emergency room with a social worker handing you a box of tissues as two doctors and six nurses stand over her trying to bring her out of the darkness she is currently swimming in. You don’t want another time sitting next to her bed waiting for her eyes to pop open, waiting for her to finally say one of the many silly phrases she thinks are so funny.

And most of all, you don’t want to admit after it is all over and she has come back to you, that at some point, she may not come back from that place the seizure takes her to. Because that is more than you can bear.

Elizabeth's daughter sitting in front of the Christmas tree

Originally published: January 17, 2016
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