Just when I thought life couldn’t get any harder, I became pregnant with my second child. This was not unplanned, mind you, and I was not upset. My first pregnancy had been very easy – one seizure in nine months, a slight uptick in meds, the labor was long, but it was a first child, so what did I expect? I just knew that this second pregnancy would be the same: a long respite from ever-increasing seizures and then an increase and decrease of the medication back to pre-pregnancy levels. My neurologist and I had this all figured out.
My brain had other plans. We spent this second pregnancy playing catch-up as I had more and more seizures: seizure would happen, the doctor would order levels, the doctor would order an increase in medication, another seizure would come, wash, rinse, repeat. By my fifth month, every doctor on my team – my OB/GYN, my neurologist, my GP – said that I had to stop working. Litigation is too stressful for you and the baby, they all said. Reluctantly, angrily, bitterly, I closed my practice and came home.
This pregnancy was more than six years ago and my seizures are still uncontrolled. But since then, I have learned some things about being a parent with epilepsy that make my days a little bit easier. I hope that perhaps at least one will help at least one of the parents who read this post. Let me first say that I see you, I hear you, and I understand the challenges you face each and every day.
Gather some form of support.
Having epilepsy requires needing extra hands on deck, especially when you are a parent. You need someone to pick up and take the kids to school when you can’t drive, and you need a shoulder to cry on when another tonic-clonic seizure sends you to the ER (and someone to make dinner when you are throwing up because of an attempted medication change gone awry). Theoretically you could do it alone, but I have gathered a (mostly) finely-vetted team who understand what my limitations are and where I need help. These include my husband, a few of my friends, some family members and some of my children’s classmate’s parents. My main challenges are getting the kids to and from school, which is twenty minutes away by car, getting the groceries done (although, thank you Instacart), and needing someone to help during the evening if I am out of commission. My Seizure Squad are superheroes that don’t ask too many questions but try their best to help. They understand that even if I look fine on the outside, my brain may be about to freak out any second because of lack of sleep and I still don’t have a car. The wider your practical support network, the better, but you really only need one, as long as that one is reliable. Throughout COVID, my husband has been my one, but now we are reeling others back in as vaccines roll out.
Cut yourself a break.
This one is so easy to say and so hard to do, isn’t it? I swear that if I hear “Give yourself a little grace” one more time, I’ll probably punch a wall, but it’s true. You are not expected to do everything perfect all the time. Or even most of the time. Or even ever. You know what is perfect? Good enough is perfect. Had a seizure and don’t feel up to making dinner? Great! Kids of all ages love breakfast for dinner, and you probably have some cereal in the pantry. Your partner is a grown-up (at least age-wise) and can fend for him or herself for a night while you rest in the dark of your room, sleeping, trying to sleep, or unapologetically binge-watching ‘Bling Empire’ or falling down whatever YouTube rabbit hole lifts your spirits you while you recover from your brain basically exploding.
The kids are alright.
Children are resilient. They may be scared when you have a seizure, but seizures can be scary things to witness – even when they are not tonic-clonic seizures. Speak openly to them about epilepsy, educate them, ask them questions about how they are feeling. I have found the more open that I am with the kids about my seizures, the better. Although epilepsy is a part of my daily life, my kids don’t think about it much anymore. When I go out for a walk with my nine-year-old, he asks if I have my rescue meds and then off we go. Lately, he has not even been doing that. I have left my family for over five weeks twice in the past four years to have testing done at different Level 4 epilepsy centers and, you know what? The kids were okay when I came back. No long-term damage done. Even if they have to do a little caretaking (which my kids do sometimes), even if they are exposed to stressful situations (which my kids are sometimes), your seizures are out of your control and they will learn to live with them. Talk to them about epilepsy early and as often as you feel the need. One last time: the kids are alright.
Remember that it is not your fault.
Part of being a parent with epilepsy, I have found, is the sense of guilt – What am I doing to my kids? I have to give up breastfeeding for sleep? Why can’t I do more? Shouldn’t I have a job? I’m missing breakfast/a bike ride/dinner again? As a community of parents with epilepsy, let’s take a collective deep breath and remind ourselves that this is not our fault. We did not ask to have epilepsy. No matter how mild or how severe, seizures intrude on our lives in ways we cannot control. And this is not your fault. Stress is a huge trigger for seizures, so try to let go of the stress that surrounds any guilt you may carry and just do what you can do.
Feel your feelings.
Mental health can take a huge hit when you have epilepsy. Depression and anxiety are common comorbidities that doctors don’t always discuss with their patients. If you are feeling anxious, depressed, or are noticing any other mental health issues, find someone to share your feelings with: your partner, a trusted friend or family member, a therapist, and definitely bring it up with your GP and neurologist. It is difficult to be an effective parent if you can’t get off the floor or are crying for “no reason” (a.k.a. severe depression) throughout the day. Take the time to figure out what you need to feel better. Sometimes just talking about it to a friend or therapist will be enough, sometimes you may need meds. (I know, I know – more medication? Ugh.) Consider this step a duty as a parent to your children. Your feelings are completely valid and there are a lot of ways to help get you through the darkness to the light.
Self-care can fall behind when you are a parent, but with a seizure disorder we have to take some time to put ourselves first, to treat ourselves kindly, to lower our expectations of ourselves as parents without guilt. I see you, parents with epilepsy. I hear you. And you are not alone.
About Sara Staggs
She is a writer and former attorney who lives in Portland, Oregon, with her husband and two children. Her work has appeared in ChangeSeven magazine, In Parentheses, and Tiny Seed Literary Magazine. Chat with her on Twitter @SaraStaggs or on Instagram @sara.staggs. Sara’s debut novel Uncontrollable is coming out in May 2023.
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