Dear Mama…A Guest Post For World Down Syndrome Day
A Guest Post For World Down Syndrome Day by Catherine
It probably seems that the world has ended. Somebody, possibly a midwife, or a consultant, has just uttered the words that no expectant mother wants to hear, “We think there might be something wrong…”.
Maybe your ‘foetus’ is missing a nasal bone, or their limbs are short, or, that crucial measurement at the back of their neck is wrong. “We think it might be Downs Syndrome…”. Each sentence ends in …, unspoken sympathy, hanging.
Everything is a bit blurry right now. You can hear them speaking but the words dont seem to be registering.
I’ve been there, in a downward spiral of numbers, sympathetic faces, ever increasing bad news, and honestly speaking, from 18 months down the line, this moment was as bad as it gets. There are trials ahead, its going to be hard, whether or not you choose to proceed, but nowhere on my journey was anything so shocking, so earth shattering as that awful moment. From here on in, you’re braced, prepared, ready, and its not so bad.
You are going to have to develop a thick skin, because words like “termination”, “disabled” “quality of life” are going to become words you are familiar with, tact and diplomacy, not so much. You are now the property of the consultants, specialists, sonographers, phlebotomists, midwives, and sensitivity isn’t always their strong point. Everyone you know, on hearing the news, will have an opinion, a platitude, a cliche and a piece of advice for you and most of them will be unwanted!
You are going to hear things like, “think about the future”, “what will happen to it when you die” “you have to consider your other children”. A LOT!
There will likely be tests. Quite a few. Amniocentesis, scans, blood tests, more scans…
There may well be more bad news. A heart condition, bowel problems…
Am I selling this to you? No? I’m sorry, stay with me!
What about if I tell you that in 6 months or so, you are going to meet a small human, who looks more than a little like you, who will rock your whole existense and who will render all of that other stuff nothing more than a minor discomfort?
It’s true. Honest.
We found out at our 12 week scan that it was likely that our 3rd child had either Downs, a heart condition, or both. It was horrible. Our teenaged children were there with us, and none of us really knew what to do. 1 in 5 were the odds, a trip to London and an detailed scan took those odds to higher than 1 in 3, and a CVS confirmed the diagnosis. Further tests confirmed a complete AVSD, a severe hole in the heart common in children with Downs. Our little girl would need open heart surgery at around 3 months of age.
At this point that thick skin I mentioned came in handy, those helpful opinions came thick and fast and even as a rookie, with google as her reference, I could tell that there is a lot of ignorance out there about Downs. Smile and nod became my default setting.
One small ray of sunlight during that awful time was the reaction of my teenagers. They showed a maturity far beyond their years and offered quiet, calm support, and a simple statement, “We dont care. She’s still our sister”.
It was a long 6 months, and I spent much of it worried for the future, frightened for my relationship and utterly terrified of this child we were getting. Would I love her? Would she be hideous? Which one of those slighty scary looking adults with Downs that I passed in the street would my daughter turn into? I cried a whole sea of tears and the two days prior to delivery, I sobbed non stop.
And then we got to the good part.
She was born one murky march afternoon, after a long induction and a short labour. Lucy. 7lbs of quiet beauty. And from the first second I held her, all that other stuff, the negativity, the ignorance, the terror, became irrelevant. Just like that, and I found a fierce new focus to my life! And I was IN LOVE!
A little fighter, she spent 10 days in hospital, had a feeding tube inserted, had never ending heel pricks, cannulas, monitors and rarely complained. She spent 10 weeks at home, tired and wan, medicated and struggling all the time with her own heart, whilst stealing everyone elses! From the first moment, her navy eyes had a smile in them, and once they locked onto you, you were lost!
At 12 weeks she had her surgery. Day 1, open heart surgery, day 2, off the ventilator, day 6, home on the train, with a wide smile and a pink crocheted crown on her head! Keeping the other travellers amused and earning herself a round of applause when I let on that she’d just had her heart repaired!
And she hasn’t really looked back. Developmentally, she is holding her own alongside her ‘normal’ peers, and every day brings a new achievement. Today, she learned how to sit herself up. Last week she learned the simple sign language gesture for milk. She brings light and happiness into our lives every day and ‘joyous’ is the word that sums her up most accurately. Her siblings adore her, her grandparents adore her, her Daddy and I adore her, the dog thinks she’s okay and this child has afollowing! At the supermarket, the GP’s surgery, the local cafe, on facebook, in the UK, in the US and in Australia, she has friends everywhere!
And she doesn’t just bring joy. Since we found out about her, she’s brought people. Friends. Other parents of children with Downs, who have offered patience, help, support and advice, health care providers with sensitivity and empathy, and most precious of all, other amazing little people, ‘afflicted’ with the same ‘disability’ who also bring nothing but joy and love to our world.
Anyway, what Im trying to say, Mama, is breathe. Because you can be okay. It might take a while, but things will get better, and life will be good. Although right now there is shock and sadness and fear, there can and will be light and joy and fun. Just hang in there!
All my love, Catherine.
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