Parenting With Epilepsy – Staying Afloat

It’s late afternoon and I am starting to get that sinking feeling. The air around me is becoming thick and heavy and everything suddenly seems much further away.

I try to focus on my surroundings, digging my fingernails into my palms in a desperate bid to cling onto consciousness. But I soon know that I have drifted too far and it is no longer possible to swim back to shore.

All I can do is surrender myself to the current. Let it drag me down and toss me about in the waves until I am eventually washed back up on dry land by the tide.

In my last moments of hauling my head above water I check to see my daughter is sitting safe on the floor. I push the door closed so she cannot leave the room.

Then I lie down next to her and plunge into the abyss.

Woman walking along a beach with crashing waves
An epileptic seizure is a powerful force that sweeps you off your feet (Nursery Whines)

I was diagnosed with epilepsy when I was 14. The seizures started for no explicable reason, accompanied by crippling headaches, and after a string of tests could find no abnormalities, epilepsy was the only explanation.

Daily medication was prescribed in various forms and doses over the years to keep fits to a minimum and life went on.

Every now and again I would wake up in an ambulance and roll my eyes apologetically at the paramedics as I struggled to regain control of my language. Gradually I would remember my name and date of birth and be able to explain I was epileptic and there was no need for me to waste any more of their time or take up a hospital bed. My next of kin would be called and I could discharge myself into their care and go home to sleep it off.

I think of myself a bit like a computer. My software crashes and I just need to be switched off and on again so I can reboot.

I am very lucky. My seizures are fairly infrequent – an average of about one a year. Some people with epilepsy suffer multiple fits every day.

Getting pregnant took a little bit of extra preparation. My neurologist discussed lowering my medication and the increased risks to me and the foetus either way. I took extra folic acid before I even conceived, and waited nervously for that first scan when any severe neural tube defects would reveal themselves. But I was very fortunate once again and the pregnancy went smoothly.

Woman sleeping in hospital bed with newborn baby
Seconds after I held my daughter for the first time I suffered a seizure (Nursery Whines)

I had my first seizure in just over twelve months about 10 minutes after my daughter was born. I was surprised when I came round and the doctors all seemed to be taking it so seriously. My condition was known and I’d just endured hours of physical labour with no sleep. They were talking about giving me all these drugs to stabilise me, when all I needed was a good rest.

My body adapted quickly to nursing and I found I was able to clock up at least six hours sleep a night in between feeds. Life went on.

I had my second seizure after my daughter was born when she was 11 months old. We were alone in the house.

I felt the waves washing over me, tugging at my consciousness and I took her upstairs to change her nappy in a bid to stay in the present.

When I came round on her bedroom floor she was patting my head and peering at me inquiringly with a pleading smile on her face, asking for reassurance. She knew something was not quite right, but she wasn’t sure what.

I hugged her close and smiled back – all I was able to do for a while.

Woman and girl paddling on a beach
It’s not just me who gets cast adrift anymore (Nursery Whines)

It never really mattered when it was just me. When that sinking feeling started I could just relent and let it take me. As long as I didn’t hit anything hard on the way down, I knew I would always float back to the surface eventually.

Once, in my job as a showbiz reporter, I came round on the red carpet at an awards ceremony. Pharrell Williams towered over me in his huge hat as the interviews continued while I lay on the floor on a pile of coats. Life goes on.

Except now there is someone else cast adrift with me. When I go under I have to make sure I am leaving her in a safe place until I return.

I take care of myself in order to be anchored for her, but I still worry what will happen to her when I get swept away. How can I keep her safe when I can’t even keep my own head above water?

But just my daughter’s very existence keeps me kicking and fighting to stay afloat.

Woman in swimming pool holding hands with child in arm bands sitting on side
If I can’t keep her on dry land I must teach her to swim for herself (Nursery Whines)

She is not the life raft I cling to, for fear of dragging her down. But she gives me a mark on the surface to swim back up towards.

She is my beacon in the storm.

One Messy Mama
The Pramshed
This Mum's Life
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14 thoughts on “Parenting With Epilepsy – Staying Afloat

  1. What an inspiring post, so amazing hearing how you have dealt with it. It’s reassuring to know you have a slight warning when you feel a seizure coming on so you can ensure everyone around you is in a safe environment. I dont know much about epilepsy but it certainly makes you think. Nicky xx #bigpinklink

    Liked by 1 person

  2. Karen Lowe

    As a fellow epileptic I know exactly how you feel. I was told by one GP it would be highly selfish to even consider pregnancy whilst having Epilepsy. My first child was an accident, the result of my ‘safe’ medication interfering with the pill despite claims it wouldn’t.
    How do we cope? We just do. It gets easier as they get older but I hate them seeing me like that…..

    Liked by 1 person

    1. That is awful. I am so sorry a doctor made you feel that way. The lectures of the dangers of pregnancy and the emphasis on folic acid and contraception from the moment I was prescribed anticonvulsants meant that for a long time I thought I couldn’t have a child unless I came off my medication. For such a common condition I feel it is not talked about enough. Thank you so much for reading.

      Liked by 1 person

  3. Holly

    This is a great article. I’m pregnant with my first child and worrying about the reality of looking after a baby. It’s great to hear a positive experience, thank you.

    Liked by 1 person

    1. Congratulations on your pregnancy and all the best with becoming a mother. I found the Pregnancy Diaries on the Epilepsy Action website really helpful and reassuring to read when I was pregnant. And if you are considering breastfeeding, breastfeedingnetwork.org have a drug information contact address where you can speak to a health professional about the latest studies into your medication and its effects. And if you ever want to ask any questions, please feel free to email me though the contact page on this site.

      Like

  4. Beautifully written and very interesting to hear how you cope with epilepsy as a parent. Thank you for writing about how difficult it can be, it clearly isn’t easy. Thanks for linking up to #BigPinkLink 🙂 x

    Liked by 1 person

  5. I had no idea you had epilepsy, I’m glad you shared this with us. You wrote this so beautifully, I love how you used the waves as a metaphor for when you go under it really visualises how this must feel. I’m sure it must be very difficult yet you still seem quite positive about it all which I admire. Thanks so much for sharing with #StayClassyMama!

    Liked by 1 person

  6. Wow. This is very inspirational and beautifully written. The fact that you know when you will have a seizure and are able to make sure your daughter is safe before the seizure starts is wonderful. You really do seem so positive and deal with the situation so well. You really are inspirational and your daughter is lucky to have you. I take my hat off to you! ☺ #fortheloveofBLOG

    Liked by 1 person

  7. Jane

    So beautifully written, I almost felt like it was my story. I can identify with so much of what you said. Unfortunately I don’t get any real auras before a seizure. I’ve had epilepsy since I was a little girl and now I have a gorgeous little boy who is just about to turn 1. Parenting with epilepsy can be done, but sadly some people don’t realise it. Thank you for sharing your story.

    Liked by 1 person

  8. Oh lovely this is such an inspiring post to read, and it’s good that you have plans in place on how to manage your daughter should you have a fit. It’s scary, but it sounds like you have the right strategies and people around you. Thanks so much for linking up at #fortheloveofBLOG. Claire x

    Like

  9. I applaud your strength. I would be a nervous wreck- but then again you learn to live with what hand you are dealt I suppose. Thank you for this insight and for linking up to #globalblogging

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  10. I love how you have written this post, you share so much insight and calmness in what must be a frightening experience. I could not imagine what must go through your mind when your little one is around and a seizure begins. Thank you for raising awareness and for sharing with us! #globalbloging

    Like

  11. Debbie Dickens

    Good morning All
    I have been reading your comments re pregnancy and epilepsy. I could do with some help regarding this matter as I am an epileptic too.
    Please can any of you email me directly so I can ask for opinions / help.

    Thanks

    Regards

    Debbie
    debbiedickens79@gmail.com

    Like

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