#ONE­DAY

The Sunday Telegraph - Stella - - CONTENTS - By Rachel Steven­son

‘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

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