“YOU’RE IN MY HEART”

My name is Ann Yates, and I am both a midwife and mother of a woman with Down Syndrome.

Rosa brought a new perspective to my life when she was born. I didn’t know much about Down Syndrome beforehand, other than superficially. I didn’t know any people who had Down Syndrome, though if I had sought information to learn about it, I’m sure it would not have been difficult. I simply hadn’t given it much thought.

Rosa 

At the time she was born, the reaction of the people in my life was profoundly sad and negative. Everyone was so disappointed because she had Down Syndrome. The only people who were positive and encouraging were other families who had a family member who also had Down Syndrome (DS).

It’s important to understand that Down Syndrome is not a disease or an illness, It is an entirely random act of nature, resulting in an additional chromosome. People with DS have a variety of fairly-obvious (and not so obvious) features that are not inherently a bad thing – and to many, this is actually a bonus rather than a deficit. Our own biases and preferences determine whether these features are desirable or undesirable. At birth, few people discuss the wonderful qualities many people with DS have, choosing to dwell on what they believed would be a limited life course. A geneticist told us that Rosa would have a life expectancy of no more than 25 years, which was complete rubbish. Rosa now lives in a flat with other young people, travels on her own – sometimes internationally – has employment, and is completely able bodied: she can dance like Lady Gaga, goes to social events, has many lifelong friends, and uses the internet to keep in touch with everyone.

“Rosa is completely able bodied, she can dance like Lady Gaga”

When Rosa was born, some well-meaning people tried to reassure me by explaining how ‘loving’ she would be. I hated hearing it. I didn’t want ‘loving’, I wanted normal. But I soon learned how limiting the word ‘normal’ is. Having a child with Down Syndrome really challenged my understanding of what a parent means when they say that they just want their children to be happy and fulfilled. For conventionally ‘normal’ people, such happiness is conditional on predictable achievements, like finishing school, going to university, getting a driving license or becoming a high-income earner. For many parents, being proud of our children is conditional on another set of rules; one in which we unwittingly limit the potential of our children. Looking back now, Rosa achieved far more than we were ever led to believe she would and still amazes us with her zest for life and ability to overcome challenges.

Rosa has one of the most magnificent personalities of anybody I have ever met. People with DS are truly are some of the most genuinely happy people on the planet. They are not preoccupied with status or pretension; they simply express what’s on their minds. Rosa will often say to me randomly, ‘You’re in my heart.’ Wouldn’t that blindside you to hear from a friend? And yet, when she says it, I know that this kind of generosity and affection is completely natural. Most people just don’t express it as openly. Of course, her lack of filter can sometimes lead her to say embarrassing or taboo things, but her intentions are never malevolent. Even this comes with its own upsides: the magic of loving someone with Down Syndrome is that you learn not to take yourself too seriously.

Ann Yates with her daughter Rosa

Like many with Down Syndrome she was  often misunderstood. Not valued. Judged. Scorned. Shunned. Excluded. Mocked. Bullied. Pitied. And all of these things happen at the hands of people who should know better. Some of the most bitter injustices are caused by the lack of information and choice given to mothers, and the overarching influence of a society that does not see any value in people with Down Syndrome, who only see these beautiful souls as a burden and something to be hidden or avoided.

Parents who have a prenatal diagnosis of Down Syndrome often don’t  have time to learn much about it before making the decision about whether or not to terminate a pregnancy. Sadly, it is not uncommon for those who counsel and support mothers who have learned that their baby has Down Syndrome to bring their biases into the conversation, whether they mean to or not. Many health professionals are ignorant about the reality of living with Down Syndrome, and so their care can be prejudicial towards the families who are weighing their decisions.

My wish is that the world could be more inclusive. We, as midwives, need to recognize our own inherent biases and emotions – often quite negative – towards people with Down Syndrome, and then put these feelings aside in our practise. A midwife can easily impact the decisions a family makes without meaning to. If a mother feels in some way that her midwifery or medical team have a value judgement about the foetus that she’s carrying, she may act on that rather than her own inclinations. Many families live to regret decisions made under this kind of pressure – those who abort without full information, and also those who continue a pregnancy they might not have had the capacity to support. How does one decide which lives are worth living and on what basis?  In some countries all foetuses with Down Syndrome are aborted and many others are close to 100%. If an entire country expects women carrying foetuses with Down Syndrome to abort – and even the medical community implies that this is the universally correct decision– how likely would a family be to terminate even if they really wanted this child? The old fashioned word for this is genocide.

A midwife who pressures a reluctant family to terminate a foetus with Down Syndrome is just as wrong as a midwife who refuses to support a woman who makes the difficult decision to abort. We as health professionals need to remove our personal biases from the decisions being made by other families to provide high-quality care in all circumstances. We must sensitise ourselves to the possibility that a family might choose to carry on with pregnancy in the knowledge their baby will have Down Syndrome, and consequently connect them with people who are supportive, positive and empowering. We can’t underestimate our own influence.

Rosa with her loving brothers – “they give her value, strength and love. 

We live in a world that is not perfect and our striving for perfection sees us eliminate the most perfect things about humanity. People with Down Syndrome are perfect in their own completeness, because no matter the circumstances, they possess the most beautiful human qualities that the rest of the world lacks. Rosa’s compassion and love for other people is so genuine and so heartfelt that you actually want to be like her; her company brings out the best in people: their kindness, their self-esteem. She will tell you 10 things that are nice about you for no reason at all. The lack of malevolence in people with Down Syndrome is quite outstanding.

Rosa has taught me to appreciate that she is perfect the way she is. Knowing her as we do now, nobody in the family would ever change her, and many families in similar circumstances feel the same way. There was an expectation that having a child with Down Syndrome would turn our lives upside-down, but she actually gives more than she takes. I have learned patience, courage, advocacy, humility, fear, strength, truth, generosity, forgiveness, trust, sorrow, joy, laughter, and mostly unconditional love and I am eternally grateful that I am better person for being her mother.

Her life won’t be without problems, but neither will the lives of my other children, or even my own. I’m lucky she lives in a very inclusive world where people give her value and strength and return the love she gives them. She adds a great richness to life that we would never have experienced otherwise.