A World With Down’s Syndrome

Here’s a post I wrote back in 2017, originally for a friend at Christian Today, and re-published by my friend Emma on her excellent blog.

It’s been reported again recently that ‘Iceland are close to becoming the first country where no-one will give birth to a child with Down’s Syndrome.’ This was explored last year in Sally Phillip’s documentary, ‘A World Without Down’s Syndrome?’ that brilliantly highlighted the various complex issues relating to pre-natal testing. I’ll not re-trace those steps here (see Glen Scrivener’s blog for an excellent summary); instead, let me share some lessons I’ve learned from parenting a child with Down’s Syndrome that may aid reflection. 

1. Greater awareness can be life-saving

When we discovered at the 20-week scan that it was highly probable our third child would have Down’s Syndrome, I was terrified – simply because I didn’t know what to expect. I didn’t know anyone with Down’s Syndrome, I had no understanding about care for the disabled, and I even avoided people with disabilities because I didn’t know how to interact with them. I also didn’t know if I would cope.

Of course, this fear is not exclusive to disability. How could any of us cope with the demands of parenting? All children have needs, and all parenting is a journey into the unknown! Yet I often wonder how much of our fear of Down’s Syndrome is driven by lack of awareness. It’s often cited that 90% of those in the UK who receive a positive result from pre-natal tests for Down’s Syndrome choose termination. The question I would love to see researched is how many of that 90% knew or had prior interaction with a person with Down’s Syndrome, or indeed of any disability. I’m sure there are many others out there like me, whose fear of Down’s Syndrome is fear of the unknown. 

If this is the case, it can be addressed comparatively easily. How do we overcome our general fears of parenting? We ask questions, we read books (the broader the better), we spend time with other families, and while our fears may not be completely subsided, we conclude, ‘Well, if people have gone before us and managed, maybe we’ll be OK too.’ That’s what we found, and while our daughter’s needs are considerable, I can’t begin to describe the extent to which my fear has been eclipsed by joy. 

2. Quality of life is often found in the things we don’t want

Sometimes people choose to terminate a pregnancy because Down’s Syndrome is not something they want for their children, and they would rather “eliminate their suffering”. But this highlights some very problematic underlying beliefs. First, neither choosing a ‘healthy’ baby nor rejecting a baby with disabilities guarantees a life of less pain.  Second, it is at best misinformed and at worst offensive to claim that people of Down’s Syndrome live a life of suffering. Our daughter certainly has significant health concerns; in the last five years we have got to know people from a remarkable variety of professions, from cardiologists to opticians, from occupational therapists to educational support officers. But she delights in her daily existence. She is the happiest, most content person I know. Who are we to say whether her experience is one of suffering, or that the world would be better off without Down’s Syndrome?

Third, we must always examine our hearts and consider if our desires for our children are actually desires for ourselves. I confess that mine was. I didn’t want my daughter to have Down’s Syndrome, because I wanted an easy life. I deeply regret that now, and I’m profoundly grateful for all that I’ve learned about fullness of life from our daughter. So far in her short life she has taught me more about compassion, patience, forgiveness, acceptance, the refusal to take oneself too seriously and the danger of pretence than I have ever learned from anyone else. She has shown me that the good life is not found in comfort and ease of passage, but can be found in hardship, sacrifice, and in having an extra chromosome.

3. Loving support can be life-changing

Because of our society’s mixed attitudes towards disabilities, parenting a child with Down’s Syndrome can be very isolating. The church must respond to this challenge as part of its mission. As well as engaging in public argument there is much we can do to help practically, and it is worth considering how your church can get alongside adults and children with extra needs. Befriend families and include them in your social life. Help single mums with their endless responsibilities. Listen to people’s stories, without condemnation or assumption. Make your Sunday gatherings welcoming to people with disabilities; compile a one-on-one care rota (not always as hard as you might think) to enable carers to participate more fully. Encourage those not of the Christian faith in your community who are doing good, and find ways of partnering with them. Consider fostering and adoption: one of the most moving accounts I’ve heard is of a family who chose specifically to adopt a child with Down’s Syndrome – that’s really understanding the issues at stake. Imagine if the vision of Home For Good became more a reality, and the effect that would have on the wider community as churches cared for orphans with all types of disabilities and none. If we truly believe that people with conditions such as Down’s Syndrome are made in the image of God, that under His common grace they are all a gift to society, and that He uses those in His church to bring others into relationship with Him, then we must do as He commands, and (to paraphrase James 2:14-17) ensure that our public arguments are accompanied by local action. 

4. Tears of joy can be infectious

When another local mum who has a daughter with Down’s Syndrome heard that our daughter had been born with the same condition, she wept with joy for us and the life that lay ahead of us. At the time I was perplexed by this reaction. I simply couldn’t understand it. But now, I absolutely get it. When I hear of others who give birth to a child with Down’s Syndrome, I weep with joy myself. What a privilege for them, and the people around them, through hardship and much laughter, to experience even a glimpse of the fullness of life God offers us through the persistent ray of sunshine in their midst. 

Published by kennyrobertson

I'm sceptical I'll last at this, so I'm not going to tell you anything about myself until I've got into the habit...

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