A Day in the Life of a Cerebral Palsy Mum
Desperate mum Alison Thorpe’s plea for doctors to remove her severely disabled teenage daughter’s womb has sparked an ethical storm. Fifteen-year-old Katie, from Essex, suffers from cerebral palsy and has the mental capacity of an 18-month-old. Her mother claims the “frightening” onset of menstruation would cause untold distress and indignity to her daughter.
Surgeons have agreed to go ahead with the operation but are waiting to clarify their legal position. One woman who knows exactly what Alison understands her heart-rending decision is Julia Stanger-France. Her eight-year-old daughter Hannah has had cerebral palsy since the age of 11 months following a cardiac arrest.
Divorced mum Julia, 42, from St Albans, Herts, is Hannah’s primary carer and it leaves her physically and emotionally exhausted. Here, Julia describes a typical day looking after her daughter…
Hannah wakes. I’ve already been up with her several times in the night. She has to be turned a few times and can be quite dribbly. She gets upset if she’s lying on a wet patch. Once a week I have a respite carer who stays over and tends to her.
But I still don’t get a full night’s sleep because every time Hannah wakes up, so do I.
I carry Hannah downstairs to breakfast. It’s getting harder to carry her now she’s older. I’m only 5ft 2ins and she’s 4ft and weighs three-and-a-half stone. I make her porridge for breakfast and have to spoon-feed her myself.
It takes about an hour because it has to be slow and steady. Hannah can’t move, she can’t feed herself, she can’t talk or walk and anything she eats has to be pureed or mashed.
My world came crashing down in April 2000. Hannah was born with a heart problem which we always knew would need surgery, eventually. But she suffered a massive heart attack and suffered severe brain damage. I knew she’d never be my little girl again. She didn’t even recognise me.
I brush Hannah’s teeth for her and get her dressed. I give her two choices of outfits and she uses noises to tell me which one she wants to wear. Sounds and eye movement are Hannah’s only ways of communicating.
She used to cry and scream a lot more, but thanks to the Hornsey Trust And Conductive Education Centre where she attends school, she’s been able to develop other less stressful ways of getting her point across. I know that in a few years’ time I’ll be facing the same dilemma as Alison Thorpe.
I firmly believe it should be the parents’ decision – no one knows a child better than them.
We arrive at school. I work at the Hornsey Trust, too, on the fundraising team so it’s very convenient for us both. It’s brilliant here and specialises in supporting CP children and their families.
They follow the same curriculum as mainstream schools but it’s coupled with speech and language work, occupational therapy and physio. Before, I was just a carer… now I feel more like a mum. But we’ve had to fight to get here. Parents of disabled children have to fight the whole time.
For wheelchairs, for therapy, for schooling. It’s exhausting. Parents of disabled children aren’t allowed to ask for the best. We have to settle with what it deems “appropriate”. And we have to battle to even get that.
School’s out and I take Hannah home. On a Monday it’s a rush because she goes to Brownies. We have a manic hour where I feed her her tea and get her into her uniform. She loves her Brownies uniform. Hannah is very competitive and motivated.
She longs to be independent and can get frustrated with life. Especially when she has her little buddies around at the weekend and she can’t follow them when they all run off to play.
I carry Hannah to the car to set off for Brownies. I pretty much do everything on my own. I’m divorced from Hannah’s dad and he sees her when he can. But the vast majority of the time it’s just me and her.
I stay with Hannah at Brownies so I’m there if she needs the toilet or goes wrong, but the other little girls dote on her. It would be so easy not to do things, to stay in the house and never go out. I wouldn’t have to put up with people staring and pointing. But I won’t stay in and hide. That’s not the life I want for Hannah.
Back from Brownies and Hannah likes to watch TV or a DVD before bed. Bedtime is a long, tiring process. I carry her upstairs to bathe her and wash her hair. I’ll make her a drink and put her down to sleep. She’s able to show me an affection, which is lovely. She likes hugs and kisses and when she puts her arms around me it’s wonderful.
I get ready for bed myself although I know I will not get a full night’s sleep.I rarely go out socially. It’s too expensive, but I don’t want to spend any time away from Hannah. I have super friends who offer to help out, but it’s a huge amount of work even to look after Hannah for two hours. If I do ever go out for dinner, Hannah comes with me.
I get to bed knowing I’ve got it all to do again tomorrow. No parent wants to see their child in pain, frustrated or unhappy. If I could have done anything to stop this happening, I would have. I never think “why me?’ but I often think “why Hannah?” It seems so horribly unfair. Yes, she’s hard work. Very hard work. But she’s an incredible little girl and I’m so proud of her. I feel lucky to have Hannah as my beautiful daughter.