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.

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.

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.

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.

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.