With Emmerdale showing a storyline where a couple choose to abort their unborn baby with a pre-natal diagnosis of Down Syndrome, our editor Kathryn shares the positives of bringing up a child with Downs.

Many parents of children with Down Syndrome find it really quite painful knowing that so many people would abort a baby just because they get this diagnosis. The shocking statistic is that 90% do. And those with DS find it even more distressing. Brave Heidi Crowter, a young woman with Downs, is taking the government to court on the laws that allow those with this diagnosis to be aborted up to birth¹. It is to be heard by the High Court.

As well as the evil of taking life that is not ours to take, these people are missing out on so much love and goodness. In my experience, having a child with Downs has enriched and blessed my life, not diminished it. And my daughter loves life.

In my experience, having a child with Downs has enriched and blessed my life, not diminished it.

Early days

Emily has just celebrated her 14th birthday. I have to say it was a shock when she was born, as the diagnosis was unexpected. There were a few scary moments that day too, as she barely survived the birth. But once she decided she was going to hang on to life (with lots of excellent care from the medical professionals), she has been larger than life. She entered the world with a bang, and has loved being the centre of attention ever since!

I think it must have been put on my notes that I didn’t want screening because any baby God gave us would be loved by us. So no health professional ever questioned whether we would keep her – which has not been the experience of others. And we’ve never had to put up with pitying glances or comments – I’m simply blind to them. I’ve always been proud of my daughter, and people can see it. Emily was our first baby, and I loved to show her off. She has been loved by friends and family, and welcomed by the church community with open arms.

Not without trials

Certainly, there have been times that have been tough. When her little brother was born one year after Emily, I struggled, as Emily was distressed whenever he cried (he cried a lot). But friends and family rallied round, and Emily got funding to go to nursery two mornings a week, which really helped her to learn to socialise, and brought her on leaps and bounds.

We’ve had to work through several medical issues; things which, once under control, just become part of our routine, such as the gluten-free diet that she needs to follow.

Invaluable support

There was lots of support available. Emily has a good paediatrician, a Muslim who shares our pro-life views. We joined a toddler group for children with learning disabilities, where we made friends for life, including the girl who has been Emily’s best friend ever since they were little, going right through school together. We got financial help through Disability Living Allowance and Carers Allowance, which enabled me to be a full time mum through those crucial early years, which both my children benefitted from enormously. The financial help meant that I could be more selective of work that fits around my children’s needs. Emily and her best friend shared a support worker throughout their time at mainstream primary school, a worker who became almost a second mum to both girls. The school was supportive and welcoming. Emily now takes a taxi each morning to a special school, which she loves.

I believe that not only should a society be judged on how it treats the most vulnerable, but also on how it learns from them.

We’ve had to adapt, of course. Family cycle rides are done with a tandem, as her balance is poor on a bike. Eyesight difficulties mean we make sure she has large text to read, and other adaptations. Being willing to adapt is so important, but we have to do that in different ways for anyone we love.

I’m here, and I can talk!

Emily enjoys reading to herself on her e-reader, given to her by a friend at church, which allows her to enlarge the textAs I mentioned, Emily has always loved to be the centre of attention. In class when she was young, if she came back from going somewhere, she would enter the classroom and announce, arms open wide, “I’m here!” She loves dancing now, taking part in a dance group for teenagers with disabilities (though like many things, that has stopped during the pandemic). She’s also great at gymnastics, having attended a mainstream gymnastics club since she was five. She can do things I could never do; she’s incredibly strong and flexible. She also loves books and reads well, and still delights in playing with dolls.

We always laugh, because when she was little, it was a while before she learned to talk. For the first three years or so, we used to pray that she would learn to speak. We’re often tempted now to pray that she would shut up! She talks so well (and so much), and very clearly.

She has always enjoyed church, and in particular loves worship. She inspires others at church with the way she worships God with abandon, never worrying what other people think.Emily was very proud of achieving her gymnastics awards

Learning from Emily

Some people when thinking about whether to go ahead with a pregnancy when there has been a Down Syndrome diagnosis often wonder about quality of life. Life for a child with DS is what you make it. Emily really enjoys life. Developmentally she is behind her peers, but that doesn’t stop her enjoyment. In some ways, it enhances it. Her enthusiasm for everything is infectious. Attending a party for one of the teenagers in her school, friends and I marvelled at how much they were all enjoying themselves. Compared to ‘normal’ kids their age, they were all free from self-consciousness, truly enjoying the time spent with each other. Not worried about whether they were cool or not. Not criticising each other’s appearance, but accepting each other, and dancing the way they liked.

In reality, those of us without learning disabilities have so much to learn from those who do. I believe that not only should a society be judged on how it treats the most vulnerable, but also on how it learns from them. Let us learn how to care for those who have learning disabilities, but let us learn too the lessons my Emily teaches me – embrace life, love and worship God with enjoyment and abandon, and never forget how special you are.

Endnotes

1 Woman with Down’s syndrome’s landmark case against UK Govt over discriminatory abortion law to be heard by High Court, Don't Screen Us Out, 18 October 2020