A changeling is a fairy, troll or elf left in a cradle in place of a human infant stolen by the fairies. The alien creature exchanged for the lost baby has a deformed appearance or strange powers. Often the changeling child is abandoned, abused or drowned. Medieval European culture is full of stories like this.*
I had come across these legends decades ago, while studying for my degree in English literature. Considering myself to be a sophisticated modern person, I had dismissed them as superstitious nonsense. But after having Martha, the idea of the changeling came back to me. Now it had a new resonance.
As I have mentioned, imagining that I had adopted my strange-looking baby was a useful coping strategy in those early weeks. This is not so very different from the idea of the changeling: this infant is not mine. The perfect baby I had expected has somehow been stolen from me. I have been left in its place with something I am struggling to accept. Maybe this sense of distance is a necessary part of the journey. Before I could wholeheartedly accept the damaged child in my arms, I had to grieve the loss of the perfect one in my imagination.
Visceral shame at bringing a disabled child into the world lurks deep in our cultural psyche. This is something we struggle to admit nowadays. I was unable to tell anybody about my dark thoughts of smothering Martha. But maybe these impulses came from a powerful collective undercurrent that few of us can own up to.
Pretending that the different child is not human may have provided a justification for the practice of infanticide in earlier times*. It is undeniably true that children with disabilities, even when greatly loved, can place a strain on the resources of both their families and the wider society. Even today UK law allows termination of pregnancy up until birth where the baby is expected to have a disability such as Down Syndrome**. At the time of writing, this controversial provision is being challenged as discriminatory in the English courts by a young woman with Down Syndrome***.
A detailed discussion of these issues is outside the scope of this book, which is intended to focus on my personal experience. But I would encourage you to give these difficult questions some careful consideration.
Asking ‘Why?’ when things do not go as expected is a natural human response. It is one of our great strengths, fundamental to science, learning and discovery. But sometimes we cannot find easy answers. We know nowadays that children with Down Syndrome are not fairies or elves; they have an extra chromosome. But that does not explain the deeper question why such things happen at all.
I was brought up in a Christian family. As a teenager, testing out beliefs for the first time, I once asked my Dad how God could allow children to be born with disabilities. Surely that was completely unfair, when the children had done nothing to deserve it? My father said he thought God allowed this to teach people to be more compassionate as they cared for the weaker members of society. I disagreed. How could anyone justify the suffering of innocent children just for the sake of making other people kinder? And besides, not everyone treated disabled people well anyway.
Growing up, I retained my faith. I didn’t really solve the problem I had posed to my Dad, but I dismissed it somewhere into the background. It didn’t directly concern me anyway. If pushed, I might have fallen back on the argument that God only gives people the problems they are equipped to cope with. Without actually articulating it, I think I had a vague idea that Adrian and I, as a good Christian couple, were blessed by God with healthy children, almost as a reward. God was good. He was looking after us. Everything was fine. And besides, I was much too busy to worry about theoretical stuff like that.
So Martha’s arrival was a huge reality check. Suddenly the questions were real. Why had God allowed this to happen to me, to us? And why did other families have children destined never to walk or talk, to require devastating quantities of care, or to suffer and die at an early age? Could I still trust God? Was he good? Did I even believe in him at all?
When faced with existential threat, our immediate response is usually fight, flight or freeze. Where my Christian faith was concerned, I froze. I didn’t stop believing as such. I even carried on regular attendance at church and Bible study groups. But inwardly everything was on ice. I couldn’t pray. Nothing made much sense. I suppose I just waited. I didn’t know what else to do.
I rejected platitudes. There are plenty of them out there. Some well-meaning people like to tell you that God only gives special babies to special parents. I’m sorry, but I don’t think so. I honestly did not believe (and still do not) that Adrian and I were particularly well equipped to care for a disabled child. And even if we were, many families are not, but still get disabled babies anyway. My more recent experiences as a midwife and health visitor have confirmed that, many times over. I have witnessed mothers tangibly unable to cope with the children they already have, pregnant again with severely damaged babies.
Some people tell you that you are lucky to have a child with Down Syndrome. You have been given an angel, a special gift from heaven. It is like winning the lottery, they say. Now this one is complex. Today, with hindsight, having traversed a lot of rough ground, I can honestly say that I believe Martha is one of the greatest blessings of my life. But that belief has been reached at a price. And a great deal of that price has been paid by Adrian, our other children and by Martha herself. I don’t think anyone else has the right to tell you your disabled child is a special gift. Perhaps it is something you can learn for yourself, painfully and over time.
Some people say there is no real problem. Children with Down Syndrome are just different, not worse. There is an oft-quoted poem, ‘Welcome to Holland’, which tells you having a disabled child is like going on holiday to Holland instead of Italy. Someone will inevitably send you a copy if you give birth to a baby with Downs. But I feel this ducks the reality. Children with chromosomal disorders do have something wrong with them. It is a defect. People are not supposed to be born like this. And I had to face that fact and own it before I could begin to move beyond it.
That doesn’t mean I think we should not care for people with disabilities to the utmost of our abilities. It doesn’t mean their lives are not valuable, beautiful, priceless. It does not mean they do not have remarkable gifts for themselves and others. But a disability is still a problem. Trying to pretend otherwise mocks the real day to day struggles and disadvantages faced by millions of people with disabilities and their carers. Don’t tell me it’s simply different. It is both more and less than that.
My faith remained frozen for much of Martha’s first year. I will share more about that in later chapters. But I would like to close this one with a beautiful haiku by the seventeenth century Samurai poet, Mizuta Masahide. For me it incapsulates the way we have to experience real loss before we can begin to see any benefits:
Barn’s burnt down.
I can see the moon.
* You can read more about changelings here: https://en.m.wikipedia.org/wiki/Changeling
** Abortion Act 1967, Section 1(1)(d) https://www.legislation.gov.uk/ukpga/1967/87/section/1
***Heidi Crowter is an inspirational young woman and well worth following. You can read more here about her court case:
Karen Lawrence is an author and mother of seven living in Billericay, Essex, United Kingdom. Letting the Light In is Karen’s personal account of having a baby with Down Syndrome. It will be published in book form in the autumn of 2021. You can read more of this story and more of Karen’s other writing at her website, http://karenlawrenceauthor.com
If you would like to receive further instalments of Letting the Light In delivered free to your inbox, please sign up at http://karenlawrenceauthor.com/join-the-mailing-list/
Karen’s first book, Finding Your Calm Space: Thirty-One Ways to find Calm in a Crazy World is available from Amazon at https://www.amazon.co.uk/Finding-Your-Calm-Space-Thirty-One-ebook/dp/B08NZ1W9QY/ref=sr_1_3?dchild=1&keywords=finding+your+calm+space&qid=1606147885&s=books&sr=1-3