Christmas was approaching fast. Martha would soon be one year old. Outwardly we were doing ok. Martha was robust and thriving now. We were enjoying a busy round of weekly classes and therapy sessions together. She laughed and ate solid food. All her siblings adored her.
No longer did I consider giving Martha away; I loved her like part of myself. And gradually, over the course of many months, I had come to accept her diagnosis. I had stopped half expecting Doctor Shah to call and tell me it had all been a mistake. I knew in my heart that she had Down Syndrome, and that it wasn’t going to go away. And I knew she belonged to us.
I still balked at pictures of teenagers and adults with Downs. It worried me that I still felt something akin to revulsion at their flat faces and heavy-set bodies. I used to look through publications from the Down’s Syndrome Association or our local Downs support group, searching out the most ‘normal’ looking faces. Maybe it will be all right, I tried to reassure myself. Maybe Martha will turn out looking like that one. Please not like that one on the next page with the tiny eyes and the mouth lolling open.
But then one day I had a small breakthrough. It came to me as I was wiping food from Martha’s sticky little face, kissing her cheeks as she giggled.
I only have to love my own child.
That is enough.
No one was asking me to look after all the children in the world with Down Syndrome. I didn’t need to love them all. No one expected that of me. All I had to do, right here and now, was to love this one child with Downs, right here in front of me.
And that was easy.
I already loved her.
It felt like a revelation. The cloud of guilt that had smothered me for months began to soften a little. And after that moment, when I stopped trying too hard, the feelings of fear and distaste at other people with Downs just went away. I had been imagining that my own child would somehow turn into a monster, when in fact she was simply herself. All those others were just themselves too. There was no huge burden on me to look after them. And actually, especially when you met them in the flesh, they were all beautiful in their own unique way.
There is something instantly recognisable about a person with Down Syndrome. I knew the first moment I saw Martha that she had Downs. Our race memory, our remarkable ability to read human faces, knows the signs. It is hardly surprising that this stirs up strong emotions.
In the past people with visible disabilities might have been singled out for abuse or exclusion. I am delighted that UK law now protects people with disabilities from discrimination. Many times we have relied on this to get Martha the support she needs. But I also believe it is important to be honest about our deep-rooted gut responses. Disability still makes many people feel uncomfortable.
A visible disability is both a blessing and a curse. Martha’s physical appearance, combined with her diagnosis shortly after birth, has opened many doors. Specialist educational interventions, discounted tickets at tourist attractions and friendly smiles from strangers have all readily come our way. I will never forget the wonderful lady at the London Aquarium who took one look at Martha’s face and sent us straight to the front of a heaving hour-long queue! We were lucky. Children with undiagnosed conditions, or those who appear ‘normal’ but behave otherwise, often experience much greater difficulty getting the help and understanding they deserve.
But on the flip side, people often make the unwarranted assumption that Down Syndrome is a blanket definition. There is a widespread view that people with Downs are essentially all the same. They can be viewed as another species, a bit like puppies or kittens.
‘Ah they’re so cute.’
‘These children are angels.’
‘They’re always happy, aren’t they?’
‘Ooh a little Downs! You’ve got a little Downs! You’re so lucky.’
In reality people with Down Syndrome are as diverse as any other group of people. While they may have many of the particular physical traits which characterise Down Syndrome – the flattened facial profile, shorter fingers and eyes that slant upwards and outwards – people with Downs predominantly resemble other members of their own families. The range of intellectual ability within the spectrum of people with Down Syndrome is as wide as that in the general population. And people with Downs experience the same hopes, desires, emotions and frustrations as anybody else.*
Martha has most definitely never been an angel. And she is not always happy. She can be infuriatingly stubborn, grumpy, miserable and downright sulky. She pretends not to hear me if I make an inconvenient request. And her deviousness at getting her own way defies description. She is a unique individual. She is a human child, with her own complex web of strengths and weaknesses. She is herself. She is not, and never has been, ‘a Downs’.**
I loved Martha, dearly and devotedly. But there was still a bitterness inside me. As Christmas drew near, I thought about all those families I had encountered in the past year with broken, damaged children. I remembered them as we decorated the house for the coming festivities. We unpacked the nativity set I had hand-sewn years ago when Petrok was a baby. Here were Mary and Joseph, and here was baby Jesus in his manger. Weren’t they supposed to be the perfect family?
What would it have been like, I wondered, if Jesus had had Down Syndrome? Could God’s special baby have been anything but perfect? I wasn’t sure if it was blasphemous, but I imagined a stable scene where all the characters had those unmistakable marks of Down Syndrome on their faces. Mary, Joseph, the angels and shepherds, yes and even Jesus too, all with flat faces, little ears and slanted eyes. If I were an artist I would have painted it. I wasn’t sure why, but to me it seemed beautiful.***
I kept pondering this picture in my mind over those days. The face of a baby with Down Syndrome, and the human face of God. There was a mystery here. It felt as if a key was being fitted into a lock, somewhere deep inside me. In this season of gifts and new hope, something was being released.
*You can learn more about the diversity of people with Down Syndrome here:
**The language we use when talking about people with disabilities is important. I may not always have got it 100% right in this book, but I am doing my best! I think the most important thing is to remember that people with disabilities are people first. Disability should not define anyone. You can read about a recent project to encourage respectful and helpful language when referring to people with Down Syndrome here:
***There is a Flemish painting depicting a nativity scene where one of the angels and one of the shepherds have the features of people with Down Syndrome. You can see it at the top of this blog. This picture is very dear to me. I have a copy on the wall of my study.
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