There are moments in life that prove to be pivotal turning points. Events, words, actions that change forever the course of our lives. Sometimes we are not aware of them. Sometimes we are all too aware.
The moment my husband asked me to marry him, his face at the end of the aisle as I walked up it, the moment I first looked into my newborn’s face, planting a kiss on the coffin in which my grandmother lay; so many precious and sometimes painful memories weaving the web of a lifetime.
But I will never ever forget that day in a Manchester hospital, in a small room off to one side, when M and I were told for the very first time that our unborn child was potentially disabled.
Of all the moments in my life that generated change, this moment stands out for all that it represents. Our first introduction to a parallel universe. A world, layered perfectly over ‘normality’ wherein those of us living with disease or disability (though I am loath to equate the two) reside. Life would never be the same again.
And sadly, life began again in battle. The battle to have our moral views respected – we asked them to not even mention termination; they offered it to us three times, even after the legal cut-off. The battle to have our medical decision respected – they could not accept that we would not risk amniocentesis. And the battle, that great battle, to push aside all their dire warnings of this risk and that risk and focus on the child growing inside.
By the time I went into labour we were already ensconced in that other universe even though at a 95% chance, the prognosis of Downs Syndrome was not certain. Months of ceaseless prayer and internet searches into DS and all that it might signify left me wondering what to exactly pray for. So many positives to balance the negatives. Then J was born. Straight into my arms and there he was – a wriggly, healthy baby boy with my red hair and my husband’s broad face, whose extra chromosome had bought with it a passport to another world.
And it is a beautiful world. People here value you for who you are, not what you can do. Race, colour, creed, age and class are all incredibly unimportant. People here are not afraid to talk about fear, or pain or loss. Strangers hold your hand. Friendships are deeper. We smile a lot, laugh a lot and get to celebrate so many milestones and achievements that pass others by.
And we learn a lot too. You learn to appreciate the words, gestures and expressions of everyone around you. You learn how to be a therapist, doctor, nurse, lawyer and teacher. You learn how to navigate bureaucracy and fend for yourself. You become an expert in your child’s disability. You grow a new, tougher skin but a softer, gentler tone to deal with those who don’t understand.
Now we know that the positives of DS do not balance the negatives. They completely outweigh them. Joy has taken on a whole new meaning. And so many are not just willing, but happy to help. We saw the worst of the NHS when we were expecting J. Now we see the best.
Life goes on in both universes. Life can be incredibly beautiful in ‘normality’. But the two together produce a richer tapestry, a more stunning landscape. For where there is light, there must also be shadow. Creating a masterpiece. Whose name is John.
sophiahc 