An open letter to every mum of a child with Down's syndrome

"It’s always your baby first, diagnosis second."
Claire Farrington15 February 2018

Claire Farrington’s two-year-old son, Theo, has Down’s. Since he was born she has been blogging to raise awareness of the syndrome and is speaking about her experience at an event in Olympia on Saturday. Here, she shares an email she wrote to a mother whose son had just been diagnosed with Down’s syndrome.

Unexpected news about the most precious thing in your life will floor the best of us. It’s inevitable that you will feel sorry, though you are told not to be, that this has happened to you. I spent many months feeling the anguish of seemingly being the only one among everyone else, who were blissfully unaware of how lucky they were to escape what had befallen me.

Like all new mums you’re flung into action, having to generate feelings towards a little one you have just met. At this point you probably know more about Down’s syndrome than you do your son. But this is only a matter of time. Your baby will shine through the diagnosis, almost like a trick you wouldn’t dare believe. Then one day you notice it is simply there in front of you: this smiling, loving mini-human.

Nobody wants a disability from birth. But ever since you saw the two lines on the pregnancy test stick you loved your baby, and you very much wanted one. Down’s syndrome does temporarily shatter that, but when the dust clears, it’s still there. Your baby first. The diagnosis second.

Right now, I know it feels it’s in control of everything, even your own happiness at a time in your life when you are meant to be joyous. I know why you are sad but your baby deserves as much love and protection as the baby who was a tiny bud of cells you discovered were yours to nurture when those two lines came into view.

What’s ahead of you is all those experiences you signed up for — the moments of electric mother-and-baby connection, bath times, first steps.

Claire Farrington

No baby does too much before five months. As developmental steps get larger, so do the gaps. I struggled with that, I still do, but so far, excluding speech, we’ve got there. You feel as if you’re getting back some of the celebratory side of parenting that felt so trampled over at the beginning.

You would never choose Down’s syndrome. It will make life more difficult for our children. They will always need a certain amount of scaffolding around them but some other children may need that too — their parents just don’t know it yet. I made the mistake of presuming naively that all those other parents who weren’t mourning over a Down’s diagnosis would have the polar opposite experience of perpetual happiness and carefree days.

Yes, we garner more attention as people see the Down’s syndrome — which I hated at first — but they also see a sweet baby. Our children will have to fight harder for everything, and so will we as their mothers, but I guess I can see now that this gives us a zeal we wouldn’t have had. But the only thing you are doing differently than you would have done if your baby had not been born with Down’s is feeling sad and not up to the test.

Your baby just happens to have an extra chromosome. He’s still your baby. The delight and love that are coming your way will bowl you over. Get ready.

The free talk about unexpected news and Down’s will be at The Best You Expo on Saturday; thebestyouexpo.com; mumonadifferentpath.wordpress.com

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