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Becoming a Mum: Entering the unexpected
Maxine, is a mum to two beautiful children. Her daughter, Sophie, was diagnosed with Down Syndrome at birth, which came out of the blue to their family. She shares an honest account of her journey of becoming a mum, how she felt at the time of Sophie’s birth and the unexpected joy that her life now has.
Through our Journey to Parenthood series, we are exploring various paths to parenthood and the journey of parenthood itself. Showing different perspectives of how there is never a straight-forward route and going through tough times, especially as a Mum, can be completely overwhelming and present us with the unexpected.
Becoming a mum has changed me to my core; but in totally unexpected ways – in fact ‘unexpected’ has been the theme of it all.
My first pregnancy was a bewildering ectopic. The zapping of that determined zygote and the removal of one precious fallopian tube significantly diminished my hope of ever becoming a mum at all.
Thankfully, 2 years later, I did give birth to our son, Ben, and his arrival brought as much relief as it did joy.
The unexpected diagnosis
His baby sister arrived 3 years later. I’d let my guard down by then and was dreaming up the usual expectations of what my new baby would be like. I was lulled into a false sense of assumption by an easy conception, straight-forward pregnancy, text-book delivery and healthy baby…but, then… a shock. An unexpected diagnosis at birth…Down Syndrome.
Although a blood test was yet to confirm it, it was already announcing itself through her physical features: the almond shaped eyes, the little flat facial profile, the gap between her toes. I panicked. I was terrified.
At the time I knew nothing about T21 (Down’s), but my emotions thought they did. They responded from a place of exaggerated horror and gross ignorance. That I had not got the daughter I was expecting was an understatement; this baby felt other, alien even; this baby tumbled short of my expectations.
It seemed like only dreadful news for me and somewhat of a life sentence for her. I was thrown into despair. I felt monumental grief; a profound loss; a tangible detraction; an angry denial. I did not want this. This was not what I had expected and far from what I had signed up for.
But, of course, it was exactly what I had signed up for. I had actively chosen to be a mother and I had just given birth to the precious baby girl I had been carrying for nine months. I had been expecting her. Waiting at home for her was a room filled with toys and beautiful baby clothes, and a big brother all primed to greet her. It was only her extra chromosome that I had not anticipated. And this diagnosis of Down’s should not have altered anything. The parental creed that had been growing as steadily as the baby inside me remained the same: my job was to welcome her, to love her, to raise her and to enjoy her. But, in those early weeks, everything felt off balance. I was lost and overwhelmed, certain that I could not cope with what life had just handed me; certain that I did not want to.
Down Syndrome is not the taker I thought it would be
Looking back, I can hardly believe my negative reaction to Sophie’s diagnosis; it seems totally absurd to me now. But, my expectations of Down Syndrome had been absurd, entirely based on fear and stereotypes. I had assumed that having a baby with Down’s would result in a huge detraction, that life would be deficient thereafter. I had Down Syndrome down as a taker – it had taken away the typical baby I had been expecting; it had taken away my ability to rejoice in my baby girl, and it stole my belief that I could be a good parent to her. I assumed it would go on to take away Sophie’s ability to access and enjoy the world for herself too. I was completely wrong.
Down Syndrome has never taken anything from me; it has given me a new appreciation for the variety, value and complexity of human life. Sophie herself has only ever enriched me in the way every child can.
For Sophie, her Down’s is simply a part of who she is: for now, she’s unaware of it but is set to be unphased and undeterred by it.
I’ve no desire to idolise or romanticise parenthood. Being a parent is hard work, with or without a diagnosis. A child with additional support needs requires additional support. There is extra to be done between those developmental ‘milestones’ – a word, incidentally, I should ‘throw out’ according to advice I was given from a woman who has Down’s.
Sophie owes us nothing, but gives in abundance of her affection, her humour, her enthusiasm, her curiosity and her sense of fun. She is so much more than a diagnosis. She is in the same business as every other thriving 4 year-old: learning, exploring, discovering delighting. She attends mainstream nursery, weekly swimming classes, and several play groups. She loves story books, painting, watching ‘Peppa Pig’, setting up endless teddy bears’ picnics and jumping on her trampoline with her brother. She is living life to the full, with the support that we put in place for her as and when she needs it.
An undiscovered community
Her Down’s has brought me into a community of parents/carers that, previously, I did not know existed. Having a child with additional needs means automatic membership into an unofficial parenting club that trades in understanding and shared experience, reaching beyond empathy. Many of these people are like family to me and I feel certain they will be lifelong friends.
We have found Edinburgh to have plenty to offer for Sophie’s development and enjoyment. We feel privileged to be part of ‘The Very Inclusive Play Club’, for example, that runs weekly at Inch House Community Centre for pre-school children with additional support needs. Sophie benefits immeasurably from its structured and creative sessions – there is so much scope for hope and potential. ‘The Yard’ is another haven for us, providing a safe and stimulating environment that is entirely inclusive, offering as much to Ben as it does Sophie.
Everything else we do in a week looks very much like any other family’s schedule. Down Syndrome is not the main event; it is very much background. It is neither good nor bad – it just is.
Ultimately, Sophie is a just little girl with the same unique potential as any other little girl. And, I am just a mum – a very proud mum, conscious of how lucky I am to have both Ben and Sophie in my life. Each is a unique individual and neither has a future that anyone can predict accurately.
Yes, Sophie’s diagnosis was unexpected but isn’t this the very nature of life?
If you can relate to this story and would like to connect with other parents in your situation, our Dribble Facebook Community is full of advice, support, chat, events and much more to meet other Scottish families. We also try to take the online offline too by arranging some Dribble events, including our monthly Breastfeeding Meet-up.
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