GUEST WRITER: Laura Potgieter's Advice for Moms of Children with Epilepsy
Every parent has their own challenges to overcome and gifts to celebrate during their child’s unique upbringing.
Our guest writer’s little boy is an Epilepsy Warrior, and she has a message for you if you or someone near and dear to you can say the same.
Elana
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TO THE NEW EPILEPSY MOM…
I recognise that look in your eyes. It’s a chaotic mix of fear, anguish, confusion and maybe a little bit of hope that this is all just a bad dream. Perhaps you are still in the hospital beside your baby’s bed, standing back and letting the doctors work and waiting helplessly while the doctors try to stop the seizures. If it’s not your first time, you are anxiously watching the monitor and waiting for the next seizure and for them to stop that one in time with some Ativan. You know that your angel child can’t really hear you – he is totally out of it – but you want to hold him and reassure him yourself. But there are so many doctors and nurses working on him, and no space for you. The hospital smells clean and disinfected. You’re holding your tears back and running through every possible option through your mind as they perform more tests. Maybe you are feeling broken, having just received your child’s diagnosis. Maybe you are ready to curl into a ball and hide because it all feels so overwhelming. I’ve been there. I’m still there sometimes.
When my 3½-year-old son had his first seizure, our world turned upside down. It happened so fast and was totally unexpected. I arrived at the hospital to find my baby naked, totally unresponsive, hooked up on every machine imaginable and heavily medicated. His diagnosis was not cut and dried – many things needed to be ruled out. After countless tests and MRIs, an EEG and another MRI, we finally reached his diagnosis of left temporal lobe epilepsy. We were relieved. Still, I felt alone, scared and confused. I didn’t know what to do or who to turn to. I knew I had to avoid Google and just be calm for my baby boy. He needed reassurance and love. He had his first seizure on 19 June 2019 and was diagnosed on 21 June 2019, which is the start of Epilepsy Awareness Week in South Africa. I felt all of this was a sign – maybe that he will be okay, maybe that he will be an advocate for his illness, or that I will be. If you look at epilepsy through the eyes of an alien, you will notice that most of the day your child is unaffected by seizures. He can run and jump and play without seizures stopping every action. He can draw, go to school and participate in most activities.
So why is epilepsy so devastating? For most parents, it is not the physical challenges of epilepsy that are the problem – it is the emotional challenges. Seizures last minutes or less, but worry about the next seizure can last a lifetime. For most parents, it is the daily, unrelenting worry about the next seizure and its imagined consequences that make epilepsy so difficult. Epilepsy is not so much a physical disorder as it is a disorder of anticipation.
As a parent, you already know it. The emotional impact of unrelenting worry about your child being harmed physically or socially by seizures cannot be underestimated. Worry is exhausting. It draws away the emotional energy required for the other parts of your life. It disturbs your sleep. It complicates family relationships. It chases away feelings of happiness and satisfaction with life. It also drives you to do better, learn more and find joy in every moment with your loved ones. Parents who live under such circumstances live lives of quiet desperation, but they also live lives of heroic proportions, in my opinion.
Either way, here are the things that I wish I had known at the time:
1. You are not alone
I know that you feel alone and I know that it seems like no one understands – they don’t. Many people will give you advice and tell you that they know someone who had it or a celebrity who excelled regardless of it. No one really explains the journey, the pain, the frightful fear every moment of the day, or the medicine: Remembering to give a little boy of 3½ years medicine on time, three times a day, every day!
2. Build your team
The old adage about needing a village to raise a child will become especially true. There will be doctors, nurses, therapists, and paediatricians. (You’ll notice that I wrote every one of those in the plural. That was on purpose.) Relationships with your child’s teachers and babysitters will grow to a whole new level. Take the time to talk with your team until you have your questions answered – every single one of them.
3. Ignore the idiots
People will tell you that garlic or lemons or copper bracelets (or my personal favourite, CBD capsules) cured epilepsy for their father’s cousin’s friend’s co-worker. In my experience, it is better to roll your eyes than punch them in the nose. Try not to explain that your child is a child and you will give them the best medical treatment that they need, not some herbal remedy and a pocket of hope!
4. Breathe
Whatever you need to do to be okay, do it. It may feel selfish to leave your child right now just so that you can get your nails done or go to the office or have your hair coloured. It is not. Your child needs you to take a break so that you can come back refreshed enough to be the advocate that they need right now.
Sometimes being an Epilepsy Warrior’s mom isn’t easy. I have different fears and unique challenges to overcome.
I know you didn’t want this. I know that you’re afraid. Believe me when I tell you that the sun will come back out at some point. So give yourself some grace, reach out to the moms and dads who have gone before you, hug your baby and just keep swimming.
Laura Potgieter