Books Down’s syndrome What happens when life doesn’t deliver quite what you were expecting?


the Label: a story for families

By Caroline White

Illustrations by Sandra Isaksson

Ivy Press Ltd 2017

£6.99 Proceeds to Mencap

This beautifully illustrated and written little book captures in a few pages a mother’s journey – from despair to joy – of having a son with Down’s syndrome.

In the opening page the author writes: “Here you were, my brand new, longed-for baby – and I didn’t want you.”

But next she asks: “How was it possible to love something so deeply, with so much longing, but at the same time not want it?”

She struggles to come to terms with her feelings – that the child she had borne would never fulfil all her expectations. A doctor had pronounced and he had been labelled.

One day a parcel arrives and before she can open it its label flutters away in the breeze. The parcel contains a book and she feels that at last this would give her all the answers she needs. But all the book’s pages are blank. Confused and upset, she puts it away with all the others detailing the problems she will encounter as her son grows up.

Milestones

Years later when her son had become independent, had a job and a partner and was leaving home, she retrieves the book and dusts it down, but now it is dog-eared and full of cuttings. They tell a very different story: the first day her son walked, his first word, the day he started school, the day he learned to ride a bike… in fact, all the usual milestones in a child’s early life.

Reflecting on those early years she realises how he had filled her life with a richness she had never imagined possible. She addresses him in the book: “You taught me so much and changed the way I looked at everything, You were the son I had always dreamed of and instead of dreading the future I was now excited by it”.

Unique life

The book without a label – that was the one she had been looking for. It told of a unique life they had shaped together, not the path they had been told  they would follow.

Her book describes the conflicting feelings mothers who give birth to a disabled child experience – that mixture of love, guilt and self-loathing – and gives them hope for the future.

Caroline White writes from her own experience. Her eldest son Seb was unexpectedly diagnosed with Down’s syndrome 24 hours after his birth. Iniitally devastated by the news she began to realise her view of Down’s syndrome was outdated and made it her mission to try to change attitudes that still surround the condition.

In 2012 Seb made history as the first child in the UK with Down’s syndrome to feature in a major high street retailer’s TV ad when he starred in Marks & Spencer’s Christmas TV campaign.