THE BOY WHOSE BRAVERY KNOWS NO BOUNDS
Letter To Louis Alison White Faber & Faber €13.65
Alison White had prepared carefully for the birth of her first child. She would go into labour at home, head to hospital for delivery, then be back within six hours if all went well.
But at 32 weeks, a check-up ended in an emergency caesarean and Louis was born, eight weeks premature. Alison’s first sight of her son was in intensive care. Doctors warned her and husband Greg that he might not survive, but 99 days later, they were able to take him home.
It was the beginning of a long, hard journey. At 15 months, Louis couldn’t sit or crawl. He suffered from constant vomiting and screamed incessantly.
Slowly, his condition improved. He learned to sit, then to shuffle on his bottom. He proved to have perfect pitch and sang his first word – ‘Louis’ – in a music-therapy session.
As the years passed, a funny and determined personality emerged. When Louis reached puberty, his lack of a social filter could be mortifying, but his strength of will was extraordinary. Driven by his mantra – ‘Just try’ – he fulfilled his ambition to walk two miles along a coastal path. It took six hours.
But this is not a story of triumph. Rather it is a raw, painful and searingly honest depiction of raising a disabled child. Along the way, the family encountered the best of human nature: the unwavering support of friends, the kindness of strangers; humane doctors. But also the worst: the midwife who failed to spot Alison’s preeclampsia, the nurse who mocked baby Louis’s diminutive penis, and a disheartening catalogue of professional carers who failed to provide desperately needed help.
Intimate, sometimes heartbreaking and often funny, this letter of love is essential reading for healthcare professionals, politicians and anyone who wants to understand the daily reality of living with disability.