This Is What Life Is Like When Your Child Is Prone To Seizures

It had been a long week. My 18-month-old daughter woke up one morning with her first stomach bug. She had been the epitome of health her whole life, and I figured it was finally her time to catch a virus. She threw up once or twice a day for what seemed like forever until she started to seem better. Finally! I thought. Now life can go back to normal.

If only I knew how wrong I was.

The next day I woke up with that feeling. The feeling that I was about to vomit. And so began the longest day of my life.

After an excruciating day of puking, I finally felt well enough to get out of bed. Still nauseous and groggy, I was drinking ginger ale with my toddler standing in front of me. She was playing with the condensation on the glass. I was talking to her when suddenly she started looking right through me. Then, as if in slow motion, she fell backwards to the ground.

I was confused. It didn’t dawn on me what was happening. I picked her up and realized she was seizing.

I screamed for my husband to call 911 and held her in my arms as she shook violently. Her eyes were rolled back in her head, and her breathing was erratic. She was making gurgling noises and was completely unresponsive. My husband beside me with the phone, I was yelling our address to the emergency operator, begging for them to hurry.

I had never been more scared in my life. After what seemed like an hour, our sweet girl stopped shaking and fell asleep in my arms. My husband and I cried.

“This had to have been a febrile seizure, right?” I asked my husband. I knew they were common in toddlers who had fevers. That had to be it.

Once we made it to the hospital, my daughter began screaming, and she continued to do so for hours, having what appeared to be absence seizures in between. But she had no fever.

It has been six months since that day. One more grand mal seizure, two normal EEGs, and countless absence seizures later, we are still in limbo without a diagnosis.

I always thought it would never happen to me or my child. Until that week, she had barely had the sniffles, and now I am the mother of a child with complex health issues. Nothing prepares you for that. Nothing prepares you for having your child seize in your arms. Nothing prepares you for the tests and the medications and the hospital visits with your toddler.

At night, I lie awake and worry. I worry about another seizure. I worry about the further tests she will have to endure and what they will tell us. I worry about the future and how her health will be. Will she grow out of this? Will she still be having seizures when she’s a teenager? Are the seizures why she is speech-delayed? What are the long-term effects of the medication she is on? Will we ever get a diagnosis?

I don’t have the answers to any of those questions. There is so much about this that I don’t know and may never know. But I do know she is strong. She is brave. I wish I had half of her tenacity. I have never met a child so strong-willed, which has been a struggle for me during her toddler years, but I’m sure will be a useful trait when she’s an adult. She is a tiny badass who will beat every obstacle in her way. I can’t wait to see who she becomes. Seizures won’t stop her.

In the meantime, I will worry. I will wait. I will keep advocating for her and doing everything in my power to try to get all of the answers to my many questions. I will take it one step at a time, taking a page from her book and being the badass mom she needs me to be.