That painful difference

Twins and disability

Yesterday’s Mirror told the story of twins Ava and Louie, born nine weeks premature, who both have cerebral palsy. Ava had surgery which now allows her to walk, and their mum talks of how heart-breaking it is when Louie asks if he too could have ‘magic legs’.

This story is close to the bone. Jenny and me were girl/boy twins. Like Ava and Louie, we were low weight, premature babies – born ten weeks premature at 3lbs 5oz and 2lbs 12oz respectively. But in our case the difference came before surgery – while Jenny had the cerebral palsy, I was non-disabled.

Jenny and me aged three.

Jenny and me aged three.

I can remember only too well the urgency of questions. As I toddler I’d ask our parents ‘What’s wrong with her?’ and ‘Why can’t she was walk?’ Looking back it makes me very sad to think Jenny never asked ‘Why can he walk?’

Although Jenny may not have asked, I know she always desperately wanted to do the things her brother could. I even remember her asking for homework from her ‘special school’ which prompted a phone call from her headmaster. Mum was firmly wrapped over the knuckles for supposedly pushing Jenny too hard. Years before, in an early  school report, mum and dad had been accused of trying ‘to normalise’ their daughter.

I also know only too well that bundle of emotions when a child with cerebral palsy goes to hospital for operations. Jenny had three in her early childhood. In her case, the operations were different, not involving her spine and, unlike Ava’s rhizotomy, were not seen as a definitive treatment.

The operations did stir up: hope – ‘will she walk?’; anxiety; and in the end, disappointment. Jenny’s first operation, an obturator neurectomy, when she was three, involved the cutting of a nerve to release muscle tension in both thighs. It was the only operation that worked in that Jenny was able to sit up straight. Her next operation, a couple of years later, was an Achilles tendon release to relieve the tension in Jenny’s right leg. It did not go well. The frustration and pain permeated the whole household. It’s the only time I can remember seeing mum cry about Jenny’s cerebral palsy.

Right now, the ‘magic legs’ is a very painful difference between Louie and Ava. There’ll be many more of these differences, not all of them painful. But differences aside, I hope the bond they share as twins is something they will both be able to draw on in facing life’s challenges.

Read the Mirror’s story here:
Little boy begs for ‘magic legs’ so he can walk like his sister but NHS won’t allow it?

Who can help?

Cerebral palsy is a term for conditions affecting movement and coordination. It’s caused when the parts of the brain responsible for controlling muscles get damaged or develop abnormally, usually at, shortly before or shortly after birth. In the UK about one in 400 people live with cerebral palsy. The main physical effects are muscle stiffness or floppiness, weakness, uncontrolled body movements and problems with balance and coordination.

The main agency working to support people with cerebral palsy and their families in the UK is Scope. In the US, cerebralpalsy.org.

For information and support on premature babies, visit bliss.org.uk

Contact a Family supports families of disabled children across the UK, whatever their condition or disability.

Sibs is a UK charity for brothers and sisters of disabled children and adults.

* I have no links with any of the organisations mentioned above.

About Ed Green

Writer and editor, Yorkshire bred, now living and working in Central London. This blog charts the writing of my memoir 'Twinned' - life with and without my disabled sister. It features disability issues, cerebral palsy, traumatic death, bereavement, twinless twins, guest posts, and throws in the occasional 'off topic' post.
This entry was posted in cerebral palsy, disability, family, human interest, lifestyle, memoir, premature babies, twins and tagged , , , . Bookmark the permalink.

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