Telling people about Martha was difficult. I felt acutely that I was at the same time imparting good news – ‘we have a new baby girl’ – and bad news – ‘but she has Down Syndrome’. How was anyone supposed to react to that? I couldn’t even work out how to react myself.
People’s responses varied. Some acted as if they hadn’t even heard the Down Syndrome bit, as if there wasn’t a problem at all. That made me feel as if they thought this was easy, trivialising my grief. Others piled on the sympathy until I felt guilty. After all, most of the problems so far had been inside my head. Maybe I really was making a fuss about nothing very much.
To their credit, almost everyone congratulated me on my beautiful baby. But was she really beautiful, or were they just being kind? I had spent so much time staring at Martha’s features, trying to work out whether or not she looked like someone with Down Syndrome, that I honestly had no idea. Until I saw a baby who didn’t have Down Syndrome. Then it was obvious.
I found it very difficult to be around other babies of a similar age. When I saw their big eyes and high, rounded foreheads I made instant comparisons with my own small and sub-standard looking infant. Other people’s babies were more solid, more reactive, lively and smiley. I assumed their mothers felt sorry for me, although they never said so. Although I had six healthy older children of my own, I burned with unspoken jealousy towards these other parents with their normal babies. How dare they take their fat, alert bundles of joy for granted?
Other babies were everywhere, mocking me with their robust health and their rapid development. When I went to church there always seemed to be a baby in the next pew, wide-eyed and cooing. I queued up to receive holy communion behind families trailing sturdy toddlers and hefting huge infants. I swallowed what was supposed to be the bread of life with bitterness and sorrow in my heart.
I remember exploding with anger some months later when we received a Christmas letter from my sister-in-law. Martha’s cousin was just a few months older, and her mother wrote with cheerful maternal pride:
‘She never seems to stop talking these days. We are amazed that she has learned so many words so quickly.’
I swore, loudly and furiously. Then I ripped the letter in half and stuffed the pieces in the bin. Martha, eleven months old by now, seemed unlikely to speak for years, if ever.
On another occasion I took Martha to a toddler group. Two mothers were comparing notes, as mothers do, fretting aloud that their babies, both aged around a year, were not yet walking independently. Again I felt irrationally angry that they should be having this conversation within my earshot. Didn’t they realise my baby wouldn’t walk until maybe age three, or even later? How could they be so insensitive? Struggling to hide my emotion, I went home early. I didn’t go back to that group again.
When my other children were small I had enjoyed taking them to various baby and toddler gatherings at local church halls or in the homes of friends. It had been a much-needed opportunity for me to socialise and drink coffee with other mums while our little ones rolled around and played with toys on the floor. Mothers need other mothers, and I was no exception.
But with Martha I found I couldn’t cope with these groups. No one ever said anything unkind or turned me away, but I knew I didn’t belong. I hated the awkwardness of telling other mums that my baby had Down Syndrome. But equally I couldn’t bear wondering what they were thinking about my slow, undersized child if I didn’t say anything. Just like in the hospital, I felt as if I somehow cast a shadow over the other happy parents. I was a jinx, a blight, an unwelcome reminder of how close we all sail to disaster. No one ever suggested such a thing, but I felt it deep in my gut: mine was a cursed child, a primeval shame.
The obvious alternative was to seek out other parents of disabled children. This is where the local support groups came into their own. I was put in touch with other parents of children with Down Syndrome. It was helpful to compare notes and hear other families’ stories, but this could sometimes be an emotional minefield too.
Inevitably, the other parents were all carrying stresses and anxieties of their own. And hearing about their children’s progress, or lack of it, could be challenging. I tried not to look shocked when someone told me her twelve year old son had only just learned to write his own name. This was a reality check I wasn’t ready to deal with.
And sometimes their children seemed to be doing better than mine. If it was difficult comparing Martha with normally developing babies, it was far worse seeing another child with Downs of a similar age who seemed to be streets ahead of her.
In reality, people with Down Syndrome, like all people, have a wide spectrum of personal strengths and weaknesses. Another child might walk much earlier than mine, but be much later to start talking, for example. But in these early, hyper-sensitive days I was easily distressed by any suggestion that Martha might be falling behind even her Down Syndrome peers.
I discovered that the parents of children with Downs are a diverse group of people, just as you might expect. Just because someone has a child of a similar age with the same disability, this does not necessarily mean they will become my new best friend. We might turn out to have other things in common and get on like a house on fire. Or we might not. Some of these contacts fell naturally into the background of my life. But over time I have made a few wonderful friends with disabled children. These people who genuinely ‘get it’ are a great support. I am deeply grateful for their enduring friendship.
I was greatly helped by a local centre providing support, information and regular groups for the families of children with special needs. SNAP* in Brentwood was a lifeline. At its bright and airy premises we discovered regular groups for children and parents, beautiful toys, a chilled-out sensory room, a library, support for siblings, helpful advice, and friendly staff and volunteers always ready to offer a cup of tea and a listening ear. I started to go there at least twice a week. Here at last was a safe space where I felt accepted with my funny baby.
A friend who has a child with Down Syndrome described this experience as ‘finding our people’. To begin with, meeting other parents of disabled children felt very much like joining a club I had never wanted to belong to. But it was such a relief not to be the odd one out here. Singing ‘Old MacDonald had a Farm’ with the others, and watching Martha enjoy the colourful light-up rattles, I smiled and began to relax. Maybe things weren’t going to be quite so bad.
At SNAP I also became aware of other children with special needs and the huge pressures on their parents. Some children didn’t obviously appear to have much wrong with them, or at least not until you witnessed their behavioural problems. Others had heartbreakingly profound disabilities, or life-limiting conditions. My dark cloud of self-pity began to lift a little as I realised that Martha’s problems were actually quite minor compared to the challenges faced by some of the other children. Here was a whole world of sorrow and courage, tragedy and positivity. I had never had to engage with it before. Now it got me thinking and asking questions. Lots of questions.
*SNAP stands for Special Needs and Parents. You can learn more about this wonderful charity in Brentwood, Essex at their website:
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, https://karenlawrenceauthor.com
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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