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My Fears About Being a Mom with Epilepsy

epilepsy

Because I have epilepsy, I had decided that, when the time came to have children, I would be adopting. This was compounded by the fact that I was on a medication that was high-risk to take while pregnant. But, when I had a spiritual realization that I would give birth through my own body, my husband and I made a plan: I would have to transition medications before getting pregnant.

My greatest fear in life, until that point, was that I would have a seizure. The medicine transition was like walking through fire; I was petrified. I had been seizure-free for five years. I held the thought of that baby in my head: the reason I was doing this. I put Post-It notes of ideas I had of the child: holding onto my finger, smiling up at me. The five-week transition went smoothly and, eight months later, we were allowed to start trying. 

When we got pregnant, we worked with a high-risk OBGYN at the same hospital as my neurologist. In the beginning, I had blood tests all the time and had to increase my medicine incrementally to keep up with the increased blood in my system. I drew strength from the ultrasounds. He would kick around and make us laugh. I marveled at how this little boy, who wasn’t even born yet, had already inspired me to look directly into my fears in order to bring him into our lives.

As I anticipated labor, I had the good old-fashioned womanly fear of pushing a kid out of my body. I was anxious about seizing during labor due to hyperventilation, a method they use to test for seizure activity. Ironically, once I was in labor, I was less concerned about having a seizure. With an epidural in, I wasn’t hyperventilating and I was able to sleep, which relieved some body and mental stress. I was startled to discover I trusted myself to get through it. I focused on my not-so-little son who, after 31 hours, finally popped out.

And there he was. My treasure. The reason that I had done it all. The one who had spent months kicking my right ribs and had lodged himself in my left hip flexor. The one to whom I had sung songs night after night, who I had whispered to, who I had patted. There he was, wrapped in a blanket, in my arms with my husband admiring him next to me. He who had helped me grow such courage, such sheer force of will to bring him into existence. It had happened. I had done it. And I hadn’t had a seizure the whole time.

The next several months flew by. I tried to sleep as much as I could so that I didn’t lower the threshold for a seizure. We adjusted the medication dosages per the doctor’s orders. I got blood tests done.

We watched our son become a little person. I felt so strong; I had conquered my fears and had had a child at the same time. I couldn’t wait to tell him about it when he got older.

And then it happened.

After two years of planning, transition, trying, pregnancy, labor, delivery, and post-partum without one…I had a seizure. I had re-started my birth control several weeks earlier; it had crossed with the new medication and I was sleep-deprived from an emergency room visit the night before with my son. I had not been told about the drug interaction possibility. Irrationally, I was disappointed that, even though I’d faced my fears, I still hadn’t made the epilepsy go away.

Since then, I have struggled to accept that I am a mom with epilepsy. That means I could have seizures while I am with my son (and now my daughter, too) and it means one of them could inherit it. I kept my epilepsy from my children, in the hopes that they wouldn’t be frightened of me or my vulnerabilities. While writing this article, I finally found my courage and explained my epilepsy to my 4-year old in age-appropriate terms. I was stunned by how easily he took the news, the questions he asked (if during a seizure my brain didn’t work a little, did that mean I was dead?) and how safe I suddenly felt, having told him.

I hate that I am not infallible; in my head, as a mother, I should be. But I made it through the pregnancy and the first talk. Hopefully, it will get easier from here.

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