Warning: some people might find some of this content disturbing.
I went to some dark places in those early weeks.
Outwardly everything looked fine. I cared for my new baby and my six other children with my usual efficiency . Everyone got to school or nursery on time. Everyone was neat and tidy, their clothes washed and ironed, hair brushed, teeth cleaned. Breakfasts were eaten, packed lunches made, and there was a home-cooked meal for the family each evening. The house sparkled and shone. The baby was fed, changed, cuddled and kissed. I did all the things I knew how to do so well. But under this shell of competence my mind and emotions were in chaos.
I was fortunate to have a lovely and caring health visitor* who came to see me and Martha at home once a week for the first couple of months. She used to weigh and measure Martha, ask me how I was feeling and make time for a quick chat. Usually I told her I was ok. But on one particular morning I could no longer hold in my misery. While Martha lay on her colourful blanket on my spotless kitchen floor, my words went wobbly:
‘It’s just that … everything’s just so rubbish all the time. I feel so, so … horrible.’
I sat down at the table in tears. She didn’t say anything. She just held my hand. She held my hand while I cried, and I will be forever grateful for her kindness. Never underestimate how those small acts of compassion can make a difference. I will remember her hand holding mine for the rest of my life.
I told the health visitor I kept thinking about giving up my baby for adoption. Despite Adrian’s assertion that Martha was ours to keep, and despite my own strong maternal love for my child, I couldn’t let go of this idea that maybe we should give her away. It was because I felt guilty and trapped. Down Syndrome seemed like a black chasm that I had blundered into by mistake. I had to find a way out. I couldn’t accept it.
‘Do you want to give her up?’ asked the health visitor doubtfully.
‘No. Not really. I don’t. I love her. But I’m worried about my husband, my family…’
Martha made a little sound and I gathered her up in my arms.
‘You handle her so very lovingly’, commented the health visitor. ‘I can see that you care for her deeply. Why don’t you talk to your husband about it?’
I didn’t want to give Martha away. It would have broken my heart. But the thought kept returning.
There was something worse too. Something I didn’t talk about to anyone. Sometimes I thought about killing her.
I don’t think I would ever had acted on these thoughts, but I had a recurring fantasy of smothering her with a pillow. Martha was tiny and weak, and I knew, physically, it would be easy enough to do. In my lowest moments, when I was alone in the house with Martha and the future seemed bleakest, I imagined doing it. Obliterating my problem.
I was a Christian and a Catholic. I had always declined antenatal screening for Down Syndrome in all my pregnancies because I had been certain I would never want an abortion. And yet here I was thinking about murdering my living, breathing child.
I very much doubt I could have done it; my cornered mind was searching for any and every possible escape route like a rat in a trap. I remember thinking that I would very likely go to prison if I killed my baby. In itself that didn’t feel like much of a deterrent. Emotionally, irrationally, the prison in my fantasy didn’t compare with the prison I believed I was already inhabiting.
Probably the biggest protective factor was my profound commitment to my six other children. I might not mind about going to prison for myself, but I could not contemplate depriving them of my care. And when I thought about the adoption idea, I knew I could never, ever tell my other children that I had given Martha away because there was something wrong with her. What would that do to them and their sense of security? It was unthinkable. Impossible.
I genuinely loved Martha. I breastfed her and sang to her and rocked her to sleep in my arms. I kissed her and caressed her tiny feet. I bathed and changed and dressed her with tender care. I researched her condition and sought out the best help I could find. I kept every medical appointment and worried over her weight gain. And I told no one at all of my darkest, most terrible thoughts. They might have taken her away from me, and that would have been unbearable.
Bizarrely, thinking about giving Martha away led me to one of my first emotional coping strategies. Even as I contemplated offering her up for adoption, I realised that I was exactly the sort of person who might choose to adopt a baby with Downs. In fact, if I had adopted her I would actually feel rather good about myself, instead of this all-encompassing sense of failure. In other words, the problem wasn’t that she had Down Syndrome; it was that I had given birth to her.
This was a revelation. Rationally I knew that Down Syndrome is a chromosomal condition that happens unpredictably and by accident. But in spite of this knowledge I felt terrible guilt that my body had brought a damaged child into the world. My mind repeatedly ran back over my pregnancy: that time I ate seafood, going for a long walk on a hot day, the time I fell down the stairs. I had to keep reminding myself that Down Syndrome was determined at the moment of conception; nothing I did while pregnant would have made any difference at all.
But the mind seeks reasons. And sometimes we have to play tricks with our minds, just to keep them quiet. So I pretended to myself that I had adopted Martha. I was not a defective mother of a broken baby. I was a noble and generous person who had chosen to take on a disabled child. It wasn’t true, of course, but it helped me.
I was also helped very much by an older friend with a mentally disabled son. This woman understood what I was going through. She had been there.
‘I never thought it would happen to me’, I told her. ‘And I feel so guilty about that. Why did I think everything would be all right with my baby?’
‘Of course you thought your baby would be all right’, she replied. ‘We all do. We are hard-wired to think that. How else would the human race continue?’
I took great comfort from those words. It was not my fault. I needed to hear that.
And as the weeks rolled by, slowly, and with the help of good people, my mood began to lift a little.
*A health visitor is a specialist nurse or midwife who supports the health and wellbeing of young children in the community. Sadly the scope of health visitors’ work in England has been much diminished in recent years due to changes in commissioning and funding. Our health visitor was a great support to me at this crucial time.
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