The challenges and privileges of caring for severely disabled twins have been laid bare in an inspirational new book by a first-time Aylesbury author.
James Melville-Ross and his wife Georgie were devastated when their twins Thomas and Alice were born severely premature in 2003.
The pair only had a 20% chance of survival and on the first night Alice suffered four heart attacks, Thomas on the third night was found to have blood in his lungs and James and Georgie were told to have him baptised because he was likely to die.
But the twins survived, and James admits that the family found it hard to come to terms with their disabilities and limitations at first.
He said: “After nine months in hospital they came home, we were told that they would never walk and never talk and that they would need constant adult support throughout their lives.
“It was like a bomb going off in our lives, all the smug sentiments about the life we assumed we would have with our children went out the window.
“We really struggled to come to terms with the situation at first.
“It is very intense looking after them, at that time we were up every half an hour in the night, we still have disturbed sleep even now.
“But, over time you make your peace with it and that’s when the characters of these wonderful children start to come through, and we really started to enjoy them.”
Living in London at the time, James and Georgie searched high and low for the right school for their children.
And on finding Aylesbury’s PACE centre they fell in love with the school’s progressive approach and moved the family to Bucks.
James said: “We moved the whole family because of this wonderful school. The twins have made huge progress since they have been there.”
And James, who is an ancestor of Moby Dick author Herman Melville, decided that he would document the family’s journey in a bid to change perceptions about disability.
The communications worker said: “It has been a cathertic experience, the purpose is really to tell people that they don’t have to be frightened of disabilities. If you take the time to understand, you find that your life actually improves from the experience of knowing people like these extraordinary children.”
The book, entitled Two For Joy is published by John Blake Publishing and priced £7.99.