As our newborn, youngest daughter, just diagnosed with Down's syndrome, remained in the neonatal intensive care unit, I recall returning home one evening to a house that felt empty, too quiet, without her. She was a tiny fragile baby that somehow didn't yet feel ours.
She should have been here with us. Our, then, two year old older daughter, Mia, asked me, 'Mummy, why can't my baby sister come home? When can I hold her?"
That evening I typed the words 'Down's syndrome' and 'siblings' into the internet, searching for a book that would answer her questions in an age-appropriate way.
I wanted to explain to Mia why Mummy and Daddy were worried about the new baby, why there were tears, what would happen when baby Natalia had heart surgery and, more importantly, something positive and real we could read together that would throw me a lifeline of hope as well.
Five years on and I began earmarking notes, poems, drawings and messages that Mia left for us all, scattered around the house. Two in particular, written for her younger sibling, stood out. In a flash, I realised we had the basis for the book we had sought.
It would be another two years of collecting photographs and drawings and asking Mia questions to fill in the gaps before her first book was ready. Mia, now 10, is the proud author of 'I Love You Natty: A Sibling's Uplifting Introduction to Down's Syndrome', which she has written to help other children welcome a sibling with the condition.
Here's our Vine video clip of what's inside:
Launched this week to a flurry of media interest, a fun interview on local TV (where Mia was as cool as a cucumber, Natty hogged the camera and I sniffed back tears), the books are flying off the shelves.
To keep costs down we printed them ourselves, so our home has turned into a packing conveyor belt, with Natty putting the final florish of stamps on the envelopes. Do forgive us if they are a tad askew!
I am so very proud of my girls, both confident and changing perceptions everywhere they go, but more importantly I think the book puts the spotlight on siblings, so often taking less attention and time from their parents, so often with their own worries to deal with.
It's time to talk about siblings and attend to their needs, which is why I am so honoured that charity Sibs, who support siblings of those with a disability in the UK, have endorsed the book along with seven other charities.
When Natty was born, I worried about the negative impact on Mia. Now I see the most caring, thoughtful, sensitive ten year old I know, because of her sister, not in spite of her.
As Elizabeth Corcoran, Down Syndrome Research Foundation UK wrote for the book cover, "There is something magical about becoming a big sister. A BIG sister! Suddenly you have a little partner in play and the occasional crime. As an adult I can see how our relationship has been a ribbon through my life and its choices. Not because he told me who to become but because he helped me to know who I truly am."
I Love You Natty is available from Amazon at £5.99
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
Great idea! Well done Mia!
Fantastic. I have a sibling who is definitely in need of some of that confidence and a helping hand at the moment… I fear she is embarrassed by her ASD sibling and doesn’t know how to handle herself 🙁