Guest post: "The old me was frightened of disability - then we had our twins"
James Melville-Ross says his severely disabled 12-year-old twins have brought something wonderful into his family's life
Author, Two for Joy
Posted on: Thu 28-Jul-16 10:55:02
(18 comments )
As my wife Georgie and I prepared for the arrival of our twins, we spent days discussing who they would be like, what they might do with their lives and what our collective futures might hold.
But our excitement was cut short when the twins arrived early. Thomas and Alice weren't messing about with a few weeks here or there, they were properly early - more than four months - and they weighed just a pound and a half each. We joked that it was because they were so keen to meet their parents, but we were smiling on the other side of our faces when the battle began.
The doctor said they had a 20% chance of surviving - and if they did make it, there was a high chance they would be disabled. Alice had four heart attacks on the first night of her life. The next day. a power cut hit south east England and the machines that were keeping our babies alive cut out. Then, on day three, we were asked if we wanted to have Thomas baptised because doctors thought he was going to die within the next 20 minutes. It was a rude and shocking beginning to our lives as mum and dad.
The statistics seemed so overwhelmingly gloomy and the prospect of disability so terrifying, that I couldn't see how anything positive could possibly come from the situation. That's when I said it: "I think I'd rather they died than they were disabled."
The statistics seemed so overwhelmingly gloomy and the prospect of disability so terrifying, that I couldn't see how anything positive could possibly come from the situation. That's when I said it: 'I think I'd rather they died than they were disabled'.
Just typing those words makes my skin crawl now that the twins are happy, bubbly severely disabled 12-year-olds. And, of course, I now realise how deeply offensive that sentence is to anyone who has lost a child.
The diagnosis came a year and a half into their lives. The impact of those traumatic early days was that the twins would never walk or talk and that they had severe quadriplegic, athetoid cerebral palsy. It took us a long time to reconcile ourselves to the fact that life was going to be very different from here on in.
But I was young then and I hadn't yet had the wonderful experiences that I have now had with my twins. Like the time that Tommy and I ran in our local 10k together with 1000 other runners - me in my trainers, him in his wheelchair - and he slapped the bums of other runners as we overtook them. Or the night when I tucked Alice into bed and she finally said, after 10 years of trying, "I love you, Daddy". Or when Tommy got his powered wheelchair and realised that for the first time in his life he could disobey me and go exactly where he chose, rather than where I directed him.
There are two types of people in this world, those who get disability and those who don't. I have been both and I wish there were less people like my old me.
The old me was happy to support disabled people and full of admiration for people who dedicate their lives to caring for them. The old me was happy for my taxes to go to the most needy in our society. But the old me was also uncomfortable in the presence of disabled people, frightened of something embarrassing happening (even though it never did) and frightened of what a life like that must be like.
But that was then and this is now. I now see that despite the huge financial and emotional cost to our family and to society, these children of ours have brought something wonderful into our lives and the lives of those who come into contact with them.
They can't walk or say complete sentences, but they smile and they laugh and they love, which is actually quite a lot when you think about it. They are better human beings than I could ever hope to be. I just wish I'd met them sooner.
James Melville-Ross’ book, Two for Joy is out now.
By James Melville-Ross
Message withdrawn at poster's request.
Really loved reading this - thank you!
That is so lovely and your two darlings look full of fun in that picture. That book is for me.
Beautiful post, op.
As the mother of a disabled 3yo, who is 16 weeks pregnant with twins, I have been terrified at the increased likelihood of prematurity and disability. Strangely, this post has made me feel better.
I used to work at the same company as James. We didn't cross paths much but he always seemed a charming and friendly colleague.
I've started reading the book and it's beautifully written.
This is a book which I'll be reading. I work with profoundly disabled children and have learnt so much from them.
What a lovely post OP, and your children are just beautiful
Thank you for this and for sharing the story of your lovely family
What a lovely family picture. Thank you for sharing.
Lovely picture of your family and a very thought provoking post.
From the boards on MN it sounds incredibly hard for people with DC with disabilities to get good health, care and education services, benefits etc, the mother almost always has to quit work and care for the DC, and that these pressures and difficulties can be hard on parents' mental and physical health and relationships.
And it seems the man often buggers off!
As a mother of 2 one disabled 3 year old this made my heart melt , nobody realises just how much love a DC with special needs will bring and just hope happy it makes you when they hit a milestone you never thought they would! I was also like the old you before my DC was born and I'm ashamed of how I felt too , what a lovely beautiful family
I read the book last week. I couldn't put it down, it's lovely.
This beautifully articulates how I feel about my disabled 1 year old! Thank you for putting my feelings into words!
Dozer is right, most men do bugger off! Bastards
I'm glad you were a better person and love your children for who they are, because that's what we all do
Fabulous! Can't wait to read the book.
Beautifully written. The bum slapping occasion reminded me of a little girls with autism who ran down the aisle of a plane slapping the back of passengers heads simultaneously to the left and right hand sides of the aisle. It was a joy to watch.
I hope somewhere in the book it acknowledges how not everyone will or can experience this change of attitude, and that that is Okay.