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Viewpoint: Dual account of disabled parenting

My name is Lisa-Marie Taylor. I am 35 years old, have been married to Simon for 14 years, and we have two children: Alysia aged 12 and Bethany aged 10.

The disabilities that I have are Myelomeningocele Spinabifida, Hydrocephalus and Arnold-Chiari malformation. Having these problems can often get me down as I get tired very easily, but I consider myself lucky as I do pretty much what the average person does with their life. At the same time, living with these conditions is not easy for any of us. They affect us all in a small way: this includes simple things like getting out of a low chair or a bath. Our children laugh at this and say “crank up the old granny!” which I guess is a front on their part to help them cope.

It may sound terrible, but when I was growing up I cannot ever remember wanting to settle down and have a family; my plan was to get my own flat and take my washing and ironing to my mum! But I met Simon at 19 and that all changed.

The build-up to the actual pregnancy was like a military operation. Before we got engaged, I wanted to have genetic counselling to see what the chances were of history repeating itself, so we were referred to Nottingham City Hospital. We were told that there was a 25% chance that we would have a child with a disability and I was advised to take folic acid before conceiving and until I was four months’ pregnant. Our families were a little worried for us; it was a big thing for us to go through, but they were very supportive. We saw lots of experts in special pregnancies and they were all really supportive too.

Alysia and Bethany have always been aware that I am different to other mums. Not that I look any different physically; I walk and talk like other mums. I just struggle a bit more than most. I have never kept my disability a secret from my children, who are a big help to me, both practically and emotionally.

The main effect of my disability is tiredness, and I am often grumpy and shout at the girls and everyone around me. I hope they know I don’t mean it! But when things get too much, the girls go to their grandparents so we can all have some space. My children do worry about me when I have an off day; they worry that I may have to go into hospital, but we have a good support network if that does happen.

I have been lucky with my friendships; all my friends listen to my moans and groans and are very supportive. When I have met someone new and then tell them about the health problems I have, they are very surprised as I don’t look as if I have lots of neurological things wrong with me.

The most helpful people have been my parents. Their support over the years has been brilliant, and the girls lift me up when I am down, which is also brilliant. I have sometimes met people who are negative and I was once told by a senior registrar that how it was at the time was about as good as it would get. I took on board what they said and have proved them wrong. That’s the sort of person I am: no-one keeps this woman down!

Children’s view

Alysia and Bethany talked about their mother’s disability and how it affects them.

Alysia said “It can be scary: when mum gets ill we never know if she is going into hospital and how long it is till we see her better again. I also find mum being ill hard work. She gets very tired easily so we help her”.

Bethany agreed that it was scary when her mum was ill, and added “But I still love her – she's my mummy”.

Alysia explained 2I was about eight when mum collapsed and was rushed into hospital. That scared and worried me; I didn’t know if mum would get better again”.

Bethany said "I remember mummy being poorly and wondering if she would get better”. “It has been harder for me and my sister growing up because not everyone has a mum who goes into hospital”.

Alysia continued “We always stay with our grandma and granddad when mum goes into hospital. They talk to us about mum’s illness, which is very helpful and means we don’t get so scared”.

Both girls said that they get upset when they see their mum struggle when she is having a bad day. They don’t like to see her in pain.

Alysia said “We don’t see our mum as any different to other mums. She treats me the same as my friends’ mums treat them. My friends aren’t bothered about my mum being disabled; they treat her like any other child’s mum. They look out for me when I am sad and when mum is ill they cheer me up”.

Bethany said “My friends ask if mum’s OK if they see that she is having a bad day”.

Alysia commented “Having a disabled mum hasn’t really been much different for us. We have still done swimming, dancing, gym club and athletics for the county. We have been in shows on the stage. Mum has always been there, cheering us on and putting us before how she was feeling. She may struggle a bit but we love her as our mum”.

Next: A pretty ordinary childhood