My daughter Ailsa Goodfellow, who has died aged eight, was unable to sit, stand, walk, roll over or even support her head – yet she succeeded in transforming the lives of those who knew her.
I was a documentary maker and my partner, Scott Goodfellow, was working in communications for Unison, the public service union, when Ailsa, our first child, was born. Twelve hours after her birth, at St Thomas’ hospital in London, she had a fit, and a week of tests ensued. On the Monday her father and I were told “she may just be a little longsighted”, but by Friday it was clear that her brain had failed to form properly and we were advised that her notes should be marked “not for resuscitation”. We were told that she would never know us, and would probably need ventilating and a feeding tube. Reeling from this devastating diagnosis, Scott and I wondered if we could love her and even considered leaving her in the hospital.
Ailsa herself put paid to those notions. In her cot in the special care ward, although seemingly incapable of voluntary movement, she managed to press her cheek against her soft toy. She loved being cuddled more than anything and her little body would curl into your shoulder like a fern. Abandoning her was not an option, so we went ahead with a plan worked out before she was born, to move to a remote farmhouse in France. Scott went freelance and we settled in Languedoc.
Throughout her life, Ailsa endured life-threatening fits, chest infections and chronic respiratory distress. In conventional terms she made no more progress than a two-month-old baby. Yet her achievements, despite her almost complete lack of autonomy, were triumphs of the human spirit. One day, against the odds, she began to smile. She hated being left out and knew how to work a room – smiling at everybody in turn. Perhaps because Ailsa knew no past or future, when she smiled at you, time stopped for you as well.
When local childminders refused a disabled child, Ailsa found her own carers: a local couple, Frédérique and Michel Beaufumé, who became her second parents. She made many friends in our tiny French village and received invitations to swim in the mayor’s pool – unlike us who, as outsiders, did not.
At six, she learned to laugh. Not long after her eighth birthday, she was joined by a brother, Hamish, and sister, Rosie; she thought their crying was like her squeaky toys and, unlike her parents, loved to listen to it. And just a week before she died, suddenly, of a pulmonary embolism, we realised she loved the sound of drumming; when we banged pans together, she would demand more, with excited cries.
She inspired me to write a novel, The Mouse-Proof Kitchen, based on her life, which was published in 2013. By then she had become our teacher, demonstrating how to live with courage, patience and joy – and proving that the essence of humanity lies far deeper than mere development.
Ailsa is survived by Scott and me, by Hamish and Rosie, and by her grandmother, Audrey.
