Page 36 - SEN106 SEN Magazine May-June 2020

Bringing up a daughter with learning disabilities has been the ultimate lesson in life, writes mum Samantha Bowen Learning from Lucy I wasn’t present at the time of my daughter’s conception; I was recovering at home 12 miles away from the IVF clinic when she was being “created”. And yet the bond was there from the start, a strong committed love willing her to bloom and come to life, to reach her full potential as a human. I sometimes wonder if this distant connection helped build my resilience for the road ahead. I have certainly had time to reflect on what the terms “full potential” and even “human” mean to me since then, and I’ve had long battles with my inner self over both. She stole the room’s attention before she was returned to my body. A TV monitor fixed to the wall in the IVF theatre room displayed her in all her naked glory, as she divided in front of our eyes from a two-cell embryo into a four-cell one. We were told this was something very few IVF parents ever got to witness but her next trick took my breath away. On implantation into my womb lining, the ultrasound monitor glowed as a bright white spark flashed on the screen. I gasped in amazement, taking it as a sign that she would live, and a couple of weeks later, I was not surprised to learn that our fertility treatment had finally worked. Unicorns We had absolutely no idea at the time though, that the reason for this struggle and indeed for Lucy’s slow embryo growth was an unbalanced translocation of her chromosomes resulting in a unique diagnosis. As admired and mysterious as “unicorns” are, giving birth to one was uncharted territory, with no-one able to offer any prognosis or even advice. There are no syndrome groups to join, no national days to celebrate and in the absence of understanding comes judgement and guesswork from others. This started very early on for us, about an hour or so after her birth. Lucy and my husband had been whisked away to the special care baby unit, leaving me alone on the maternity ward. A paediatrician stuck her head through a gap in the curtains around my bed and declared, “I think there is something genetically wrong with your baby”. Still under the influence of the morphine given to me during my C-section, I mutely asked We have had several doctors wrongly assume Lucy’s diagnosis on appearance alone SEN 106 senmagazine.co.uk 36 Learning disability