Upside Down WDSD
The Day our World Turned Upside-down... and beyond!
A blog post from our models Francesca's mummy Melissa. For #wdsd
Wednesday 14th May 2014. I remember it as if it were yesterday. Every detail, every feeling. I dropped 6-year-old Alexander at school and walked home with Elizabeth, aged 3, who was picking flowers along the way. I was 38 weeks pregnant and was starting to feel niggles that I suspected were the early signs of labour. I called husband Alan at work to let him know that I might need him home. I had an antenatal appointment that afternoon although I wasn’t sure I’d make it back home afterwards so I packed my overnight bag as I waited for Alan to arrive home. Appointment done we went to a nearby park as I was certain baby wasn’t far away. My parents were collecting Alexander from school and Alan’s parents were primed to collect Elizabeth when needed. As my labour progressed and my waters went (at the park, yay) we headed to the hospital and arranged for Alan’s parents to meet us there. I was triaged and admitted onto the labour ward fairly quickly and it wasn’t long before our baby arrived into the world. We’d not found out the sex of baby so that was our first surprise, a second little girl had joined our family. We didn’t have a name for her to begin with, we had a boy’s name ready to go but just hadn’t been able to agree on a name for a girl. The moment I laid eyes on her I knew something wasn’t quite right, it struck me just how different she looked to our other two kids. I asked Alan if he thought she “looked funny”. He pressed me to explain what I meant but I couldn’t bring myself to say the words. He said to me “You think she’s got Down syndrome, don’t you?” I asked if he did too, to which he replied “Well I knew what you were talking about”. We raised our concerns with the midwife, who initially said that she couldn’t see it and perhaps baby was ‘just a bit squashed from being born’ but agreed to contact the on-call paediatrician. In the meantime, Alan had googled the signs of Down syndrome; flattened nasal bridge, sandal toe gap, epicanthal folds. We ticked them off one by one, studying our new arrival closely and comparing her to internet images and descriptions. It was a while before the paediatrician made it to us but by that point, we’d decided that she did have Down syndrome; the paediatrician said it looked quite likely that she did too but it would need to be confirmed with a blood test. I spent much of the next few hours crying. We phoned family to let them know baby had arrived and break the "bad news". I didn’t want to tell other people that she was here, I didn’t want to tell them that she had Down syndrome. I don’t know why but I felt ashamed of her, of the Down syndrome, I was overwhelmed by these huge feelings that I just couldn't make sense of. I decided in that moment that I needed to tell someone, I needed to experience people's reaction, and so called one of my good friends; I could barely get my words out through the sobs but when I finally blurted out the words “she’s got Down syndrome” her reply was just the perspective I needed: “Oh my god woman, is that it? I thought she was dead!”. She went on to say something about being in Holland but that didn’t register and was something I came to understand later on when I was given the story ‘Welcome to Holland’ (Emily Perl Kingsley). Despite the new perspective I’d been given, I slept very little that night with the worry over what the future held for us and our little girl. The images of the future I saw were bleak. I was in a side ward by myself when all I wanted was company and someone to talk to. Whenever the midwives checked in on me, I wanted them to stay and talk, to listen to me and allay my fears but they didn’t, they didn’t have time and the pity they felt was written all over their faces. I told one midwife that did stay a while that I thought the baby had "ruined my perfect family" and promptly burst into tears because I obviously didn’t mean it and was already fiercely in love with this baby girl. The following day we decided on a name and ‘baby’ became Francesca. We introduced Francesca to her big brother and sister – we told them she had Down syndrome but, in that moment, it didn’t matter to them, all they knew was they had a new baby sister and she was perfect! Bloods were taken and tests done, the result confirmed on the Friday as we sat having lunch in Wetherspoons; I cried again as it meant the last tiny slither of hope that she didn’t have Down syndrome was gone. In the early days I was careful who I told about Francesca’s Down syndrome, I didn’t want people feeling pity towards her or us; the friends who were amongst the first to know were great and said nothing more than "congratulations". The first of our friends to actually meet Francesca, and the first person we’d had to tell face to face of her Down syndrome, just looked at her and said "she’s beautiful, congratulations". These small gestures, people marking her arrival just as they had done our other kids meant so much, way more than those friends would ever have realised. Francesca is now 4 (almost 5!) and when I look at her, I cannot believe the sorrow and shame I felt in those early days. I still can’t talk about those first few days without getting upset; I feel ashamed, not of her but of how I felt towards her diagnosis. Society's view towards those with Down syndrome is such that there's a stigma attached to having a baby with the condition and that shapes the feelings of many new parents. Francesca is amazing, I wouldn’t change her for the world. She’s brought such joy and laughter into our lives and given us fantastic opportunities that we never would have had without her! She’s so determined and feisty, she knows exactly what she wants and how to get it (usually with the help of her big brother and sister who she has wrapped around her little finger).She’s started full time school, she’s settled in brilliantly and is really keen to learn, she’s counting and reading and making loads of new friends. She goes to dance classes and has recently taken her second set of exams and now rehearsals for her first show are in full swing. In the last year alone she’s won a national competition to become the face of a luxury childrenswear brand, starred in the viral ‘carpool karaoke’ video, 50 mums | 50 kids | 1 Extra Chromosome, which led to being invited to attend a UK film premiere (remember those fantastic opportunities I mentioned), signed to fabulous modelling agency Zebedee Management and modelled for brands such as ELC, Mothercare and My First Years!
The views people have of those with Down syndrome are slowly changing as more and more brands choose to have models with Down syndrome represent them and we're proud to say we're a part of that. Zebedee are leading the way providing representation for previously underrepresented people, with a whole range of differences and disabilities, not just Down syndrome. They're challenging opinions and smashing stereotypes with ground-breaking campaigns; most recently with the stunning collaboration with The Radical Beauty project for WDSD19. The reality of life having a child with Down Syndrome is far from what I’d feared in those early days and I want others to see that too. There are challenges and more appointments than I’ve ever had to deal with previously but the positives massively outweigh that. If me now could speak to me then I definitely wouldn’t have wasted any tears. Down syndrome is not be feared it is something to be embraced, valued and celebrated!