‘My daughter has helped me to redefine perfection’
We already had a three-yearold daughter and an 18-month-old son when my husband James and I discovered we were having twins, and we spent the rest of the pregnancy panicking. We lived in a small flat in London at the time, though my main worry wasn’t space, but how I could be a good mum to them all. But the silver lining was knowing the twins were a boy and a girl; we’d have two of each – the perfect family.
At first, everything went smoothly, but shortly after the delivery, the midwife sat beside me and held my arm. ‘We think the girl twin has Down’s syndrome,’ she said quietly. I was stunned, it was like someone had punched me in the face. My ultrasound scans during pregnancy were normal and I hadn’t had prenatal tests that can detect Down’s, assuming everything was fine.
As the midwife tried to reassure us, I could barely breathe for guilt. I felt this was all my fault – I’d been greedy, wanting more children when I already had two perfect ones. James was also in shock and sat next to me in silence.
At the time I knew nothing about Down’s syndrome and I was filled with deep sadness. What kind of life was my little girl going to have? But mostly I was terrified that the demands of caring for a disabled child would cast a shadow over our family.
Later that day, our older children, Elizabeth and Kit, arrived at the hospital, bouncing off the walls with excitement. I felt crushed. They didn’t know that from now on, I’d never have enough time for them because their little sister Tilly would always need me more.
I realised later I was also grieving for the family I thought I was going to have. But that night in hospital, as I looked at my baby girl, snuggled nose-to-nose with her twin brother William, I knew that she needed me and James unconditionally and that we would never let her down.
Tilly is now two and a half, and for the first two years she was like any other baby. It’s only now that there is a developmental gap between her and William. He is more mobile and chattier, while Tilly is a bit unsteady on her feet and has speech therapy, which involves using signs to help her communicate. Seeing her delight when I understand her brings me such joy. Plus James and I have learnt to celebrate the milestones she does reach, rather than count how far behind she is.
In the early days, I imagined that I could somehow fix everything and make Tilly ‘normal’. But now we would never want to change her. Whether she is cheekily pinching biscuits from William or clapping furiously when Strictly Come Dancing is on, she is who she is – beautiful, determined, funny, joyous. My heart bursts with love for her.
I recently began explaining to the older two that Tilly is different to most other people. Before I could finish, Elizabeth said, ‘But Mummy, everybody is different.’ She was spot on. Looking back to my reaction when Tilly was born, I realise how ignorant I was about disabilities. James and I assumed that her life would be half-lived – how wrong we were.
We still worry about what opportunities Tilly will have as an adult, but most kids with Down’s go to mainstream schools and right now I just love how close she is to her siblings, especially William. They are still happiest sleeping next to each other and whenever she cries, he fetches her special teddy.
Last year, we moved to Cornwall so the children would have more space, and we are getting ready for our first Christmas in our new house by the sea. Being Tilly’s mum has taught me that acceptance and love matter above all else – no one is perfect and no family is perfect either. But sometimes, when all four of them are charging around on the beach together in their own chaotic but loving gang, I think it’s about as close as it gets.
James and I assumed Tilly’s life would be half-lived – how wrong we were Left Kit, William, Tilly and Elizabeth