Epilepsy: proving the wrong

A mother talks about her experiences of parenting with epilepsy to Shanta Everington, Commissioning Editor.

I had a car accident when I was six months old, which resulted in five fractures to my skull. The doctors said I wouldn’t live past three and had no chance of a normal life. I proved them wrong.

I failed my school exams because of my epilepsy but I always had an ambition to work in a law firm. I went back to college to achieve my diploma and worked as a civil servant and for a legal firm. I can’t work now because my health has deteriorated.

Now I am happily married with a family of my own. Our daughter is four years old and she is a year and a half ahead in her development. We are a very strong family unit and we’ve always promoted positive thinking.

When I was 16, I told my dad that I wouldn’t bring a child into the world unless I could support him or her adequately. He was upset because he thought this meant that I wasn’t going to have children.

A year into our relationship, my partner and I both had the same dream about a daughter with blonde hair and blue eyes. We got engaged and I fell pregnant. People’s reactions were quite scary and I was frightened because I’m a very realistic person but I'm also creative. My fiancé said it was my decision whether to have the baby but I wanted it to be a joint decision.

I couldn’t come off my medication when I became pregnant. I had to have a lot of tests because of the risk of things like congenital heart conditions and spina bifida. We didn’t know if our daughter would be OK right up until she was born. There were lots of complications and I had to cope with the knowledge that she could have been stillborn right up until the end. It was a very difficult time.

The medical staff were all very supportive and I had a consultant neurologist on stand-by. Our daughter was born weighing 5lbs 1oz. She was so tiny that my husband was frightened to hold her! We shed tears of elation when she was given the all-clear and found to be perfectly healthy.

Making assumptions

Our daughter is a bundle of fun. She has a fantastic relationship with her dad. My mother-in-law is very supportive, although she was sceptical at first and wondered how I’d be as a mum. But she’s given me a lot of advice and help, and she baby-sits when she has a day off.

I have experienced discrimination as a disabled mother. People can be ignorant and make assumptions about my parenting ability based on my epilepsy.

When our daughter was a couple of weeks old, I had a visit from social services. The social worker asked me how I could justify bringing a child into the world. I wanted to get the social worker to see my world from my point of view so I asked her if she had children. She said yes. I asked her to close her eyes and imagine a scenario.

I asked her to imagine that she had a two-week-old baby. A couple of days go by, and the next thing you know, you wake up in hospital and you’ve been diagnosed with epilepsy. You still have a new baby to look after. You still have a husband and good friends. But now you have epilepsy too. So, what do you want to do: go to pieces and be traumatised – or get up and get on with it? The fact is that anyone can have epilepsy at any age at any complexity. It could happen to anyone.

Fit to be a mother

Yes, there are days when I can’t walk, when I am paralysed from the neck down and on oxygen. Even though my epilepsy can’t be controlled 100%, I believe in focusing on the positive rather than on limitations. I’ve been asked to coach children who have just been diagnosed with epilepsy to help them to come to terms with the diagnosis.

Having a mum with epilepsy means that our daughter is more empathetic to others. She would go over and help if she saw someone in need; she would stop and call an ambulance. She has all these positive attributes.

Having a serious condition like epilepsy makes you appreciate things that other people take for granted, such as the smell of flowers. All my senses go down when I am ill so I really appreciate the simple things when I am well. While I can walk and get out and about, I will take our daughter out and make the most of every day, and we do lots of things together as a family, such as visiting friends and going abroad.

I see my consultant every six months and take our daughter to see my epilepsy nurse every six months to satisfy social services that I am fit enough to be a mother. The consultant ensures that I am getting the best treatment and that the medication doesn’t make me dozy as I need to be alert and on the ball for our daughter.

Strangers can be shocked because all they see is my disability, not normality. Our daughter sees her life as normal. She is happy, thriving and confident. I had a very positive upbringing based on traditional moral values, which in turn I have taught our daughter. I feel this is the route to my success as a parent.

All I ask is that people don’t judge me without giving me the benefit of the doubt – that they don’t dare call me a bad mother because of my disability. Disability has made me a better person, more caring and compassionate, and this is something I have passed onto our daughter.

Life is precious. You can’t turn the clock back. You’ve got to live for today.

Name and address supplied.

Next: Epilepsy: pre-pregnancy planning