Down’s Syndrome, my daughter and me

August 1, 2011 by
UPDATED: Read the update >   Family   1 Comment

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IN CONVERSATION WITH:  Susan Jamson, 60, a mother of three and the press/ PR officer for Chickenshed, the theatre company in north London. She lives in High Wycombe with her second husband Keith, a financial adviser, and her youngest daughter Emma, 27, an actor who has Down’s syndrome. Here Susan describes how Emma has inspired her:

 

WHEN friends talk about retiring, downsizing or travelling, free of responsibility and financial worries at last – the nest empty, sure, but tidy – I laugh ruefully. I have never been so busy and can see no prospect of change.

Ever busy: Susan and her gorgeous daughters

Not only does my job for Chickenshed Theatre mean long days and late nights, but at home, I’m on call as much as any young mum. The fridge is often empty when I get home, the washing mountain huge, and I have to hide my favourite clothes and makeup to prevent them getting ‘pinched’.  Meanwhile my wonderful husband Keith, whom I married five years ago, tries to ensure my life is peaceful, happy and perfect but understands he can never whisk me away for a mini-break; even planning to go to his office party means organising someone to ‘sit’ weeks in advance. When I married my first husband Peter, and had my first child, Kathryn, 33 years ago, I really thought I would be a house wife and a mum forever. Yet now I spend my work life dealing with journalists and press releases, handling stars such as Jeremy Irons and meeting famous people.

And then at home, it’s me, Keith and Em – my lovely, talented daughter, whose Down’s syndrome first seemed to threaten everything I held dear.  In fact, the condition that I have fought to stop defining who she is, has ended up defining me and shaping my life into so much more than I ever dreamt of.

Despite two smooth pregnancies with Kathryn, and then Natalie, now 31, I knew straight away Emma was going to be different. By 12 weeks, I was convinced she would have Down’s syndrome – it sounds ridiculous:  I just kept seeing people with the condition (which is caused by a stroke of genetic fate – an extra chromosome 23) everywhere I looked. My GP was reassuring, but when Em was delivered prematurely, hospital staff saw immediately my instinct had been correct. When I was told – to my shame (and now something of a family joke) – I went potty. Had I not been hooked up to a drip, I would have left the hospital. I didn’t want to see her again. I didn’t want her. For four hours, I refused to eat, drink, talk or see anyone. I felt angry and trapped.

I only agreed to breastfeed if I didn’t have to hold or look at her. As soon as I could move my legs, I went home and I left Emma behind. For the next four days I drove in and out of hospital every four hours to silently, furiously, feed my baby. One nurse said: ‘This child is from God – Emma will change your life.’ ‘Rubbish,’ I answered. ‘She’s going to be adopted.’

At home, I read every book I could about Downs to get my bearings:  it was all so negative.  Somehow that gloom began to have an effect; I resented the lack of hope or expectation. And the next day I snapped:  wrapping Em up in a hospital blanket, I took her home. A stream of doctors, social workers and psychologists followed – all desperate to tell me what she wouldn’t do or achieve. I refused to accept it.

If she wouldn’t eat, I persevered.  When she had trouble sitting up, I found a physio who devised a support so she would learn to. They told me children like Emma would never be able to jump. I bought a trampoline. I refused to let her be treated differently and fought the system every inch to get her into mainstream education; I remember camping out at the council office in Aylesbury to demand meetings. I was told she would struggle with speech but Emma’s language came on in leaps and bounds: no wonder, I talked to her morning, noon and night – everything I saw or felt including my worries that Peter had found another woman.

Em was six when we got divorced. I was worn out. And then I heard about Chickenshed where everyone is welcome. Emma had always adored role play; she couldn’t believe it when she was invited to join the cast, like her sisters – just one of the gang. The journey was an hour each way, but for me, listening to my three daughters chatting in the back on equal terms about their day was so special it was worth it.

Emma meeting the Queen in 2012

The theatre became my haven, too.  When the girls needed to be there for long days of rehearsal and performance, I stayed, stuffing envelopes, answering phones. The organisation was young and informal, so I found myself ringing up the local paper to suggest they reviewed our shows, and then speaking to editors and columnists on national newspapers and the BBC as our shows were staged in the Royal Albert Hall. I’ve since handled international publicity for tours of Ethiopia and Russia. And the learning curve was sharpest when Princess Diana became our patron. She was pals with Emma; we treasure the photos we have of them together. Honestly, I still pinch myself some days.

Meanwhile, my girls were growing up; I’ve never worried about Emma – she’d see her elder sisters go out with boys and stay out all night on occasion, and promise not to be ‘so silly’. But it’s painful too – I know she dearly wants to fall in love, get married – it’s what she craves, and I am hugely sad for her that it may very well not happen. She says, ‘Boys see the Down’s Syndrome before they see me.’ It makes her shy and vulnerable.

I never imagined anyone would take me on either. But a few years ago, I joined an online dating club where I met Keith.  We went for a drink, and I lied – I said I had no baggage at all. I was worried he would see the Down’s syndrome before he saw me. I confessed all on our third date, and Em was thrilled when we got married, and was a hugely proud bridesmaid. Since then, Keith has proved a loving stepfather and husband. Would I like more time just with him? I’d be lying if I said I didn’t. And conversely I know that Em would like more independence. She could move out to sheltered housing but I suppose I am holding her back more than anything. She is so trusting, and I fear her being used or taken advantage of. We must learn to let children go, but it’s not easy at any age.

I have made plans for the future so she will always be cared for; Em doesn’t like to discuss it and I can’t bear the thought of losing her – nor dying before her. That nurse was right, 27 years ago, when she said Emma would change my life; I just didn’t realise how much better it would get.

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UPDATE Em is in the team delivering workshops with Tottenham Hotspurs about the Olympics to schools across Tottenham. Her next big show will be Sleeping Beauty – Dream On which opens on 28 November.


 

About the Author

Victoria Lambert has been a journalist for more than 20 years, and specialises in health and medical matters. She writes for the Telegraph, the Times, the Sunday Times, the Guardian, the Mail and the Mail on Sunday. She contributes to Saga, Geographical and First Eleven magazines – where she is the agony aunt.

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One Comment on "Down’s Syndrome, my daughter and me"

  1. Louise Pryor May 30, 2012 at 10:19 pm · Reply

    How nice it would be if every parent of a Down’s Syndrome child could read this. Thank you, Susan, for the inispiration.

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