~ THE ROAD LESS TRAVELLED ~

I got caught on the hop this week. I discovered on Tuesday that I was due to give a speech at Toastmasters the following day, and I had to come up with something in a hurry. I thought about Sam, my sixteen-year-old with Downs’ syndrome. In the four years I’d been in Toastmasters, I had not tackled the big issues. I’d spoken about all kinds of major things, but, I hadn’t had the courage to talk about Sam, and Downs’ syndrome, or anything about my life as a “special” mum. I still haven’t had the courage to talk about about my youngest son, who has Congenital Heart Defect, and the life and death surgery he went through twice at the tender age age of five. Similarly, I have yet to give a speech about my grandmother’s death, or those of my parents (both deceased within the last four years). I didn’t feel I could do them justice.

But, when Toastmasters asked me to do my first speech of the year, I decided the time had come to delve a little deeper and share more of my personal stories. In Toastmasters, they say that personal stories are the most powerful, they are the speeches people remember. I decided I would share the story of Sam’s arrival in my life and being a parent of a special needs kid. The speech title, ‘The Road Less Travelled,’ comes from the last verse of one of my favourite poems, The Road Not Taken, by Robert Frost

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

I opened my speech by recounting the story of Sam’s birth, in more or less these words:

When I was pregnant with my second child, I was thirty-six. My doctor recommended I take an amniocentesis test, which tests for any abnormalities in the child. I agreed and booked in for the test.

But, the night before I was due to go into the hospital, I woke up at exactly 11 o’clock at night, with an epiphany. I sat up in bed and asked myself,

‘What would you do if there was something wrong with the baby?’

I knew I could not go against my moral code and abort it. So, literally at the eleventh hour, I cancelled the test.

Some months later, after a difficult birth, my midwife handed the baby to me with the words, “I’m sorry, but I believe your son has Downs’ syndrome.”

My world, my life as I knew it up to that point, ended, and a whole new life began in a whole new world. It was one I knew nothing about, and I had a lot to learn!

Downs’ syndrome is a genetic condition which results from a third copy of the 21^st chromosome.

One in six hundred babies are born with Downs’ syndrome every year in New Zealand. The condition entails delayed development, low muscle tone, and this combined with a large tongue makes it very difficult for many Downs’ syndrome kids to talk clearly. 70% of girls with the syndrome will be understood by anyone outside their immediate family and that figure drops to 40-50% for the boys.

The things that our normal babies take for granted, like sitting up, standing, walking, none of these things come easy for a special kid. Every step is hard won. Sam was three-years-old before he could crawl, five before he could walk, eleven before he was potty trained during the day and thirteen before he was dry through the night.

We special parents say, ‘it’s like taking one step forward, two steps back.’

Therefore every milestone achieved, every hurdle crossed, with these kids is such a triumph. You feel so proud of them you could burst. I know how hard Sam has worked to learn how to do every little thing.

Being a special needs parent has enriched my life. Sam has taught me so much; I have gained so much from his example. He’s taught me humility, patience, tolerance, compassion, forgiveness and how to care for the underdog. I would say most of all, he has taught me how to be present. For Sam, there is no future. He doesn’t have the ability to look ahead and imagine outcomes, there is only right now.

Sam is always present. That lesson in itself has been a gift.

The road less travelled by continues to reap dividends, and I am so grateful I accepted the challenge.

Thank goodness. Imagine what I would have missed out on!

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“There’s not one path. There’s not even the right path. There is only your path.” – Nietzsche

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~ Who’s Human? ~

Back in 2002, when I was expecting my second child, I was 36-years-old. My doctor at the time advised me to have an amniocentesis test, which is the form of pre-natal screening we have here in New Zealand. The doctors test for Down’s syndrome by inserting a long needled into the womb and extracting amniotic fluid.

I panicked. I thought what if the results come back as positive? It was a decision I simply couldn’t make. I decided against taking the test.

In New Zealand, we were told at the time, one in 600 babies were born with Down’s syndrome.

In the UK, between 1989 and 2012, 20,000 babies were diagnosed through the new non‐invasive prenatal testing (NIPT). Of these, 92% were aborted. And, being classified as a ‘severe disability’, abortion can take place right up until birth.

I’m so glad I somehow found the strength to resist the pressure of the medical professionals around me at the time, because my second son was born with Down’s syndrome. Sam-the-man, The Sam. As my mother said at the time, he has more God in him than anyone else. It’s true. It bothers me deeply to think of the pressure I was put under during the early stages of my pregnancy to get tested.

The NIPT is expected to drastically improve the rates of diagnosis of Down’s syndrome in England, which they project will result in 102 more babies with the syndrome being detected each year. When abnormality is detected, the only counselling offered to women after diagnosis is usually heavily pointed towards abortion. In Britain, the only counselling charity the National Health Service directs women to is, Antenatal Results and Choices, formerly known as Support Around Termination For Abnormality.

These sad facts came to light recently, through actress Sally Phillips recent BBC documentary; ‘A World without Down’s syndrome?’ The acclaimed actress, mother to a daughter with Down’s syndrome, dared to ask the question, ‘What’s so dreadful about Down’s syndrome?’ Phillips travels the world and speaks to various people, including, ‘Emma’ who despite having been firm in her decision not to be tested for the condition ‘had to constantly justify her decision to medical practitioners.’

Why do we need to justify wanting to keep our unborn child?

On the award-winning Down syndrome blog, Downs Side Up, Hayley Goleniowska has a mission. That of ‘Gently changing perceptions of Down syndrome from within people’s hearts.’

This mama is speaking my language.

Hayley: My mission is now to inspire new parents, show the world that many incredible things are possible for our children, and shout out that Down’s syndrome truly is wonderful and that life will carry on, there will be challenges, but you will not regret or wish to change any of it. 

You go, Hayley!

Her daughter, Natty, was the first child in Britain with a disability to appear in a Back to School Campaign.

Our youngest daughter Natty is a clothing model, pioneering for children with disabilities everywhere. She is a true ambassador in her own right, opening doors and forcing companies to be more inclusive in their approach to advertising.

The writer, Ciarán Kelly commented sagely on the issue. ‘The new NIPT test has its roots in the Idea that some people’s lives have little or no value and therefore should be screened out from society. This is profoundly wrong. Unborn children are perhaps the most vulnerable people in our world and need to be protected. All human beings are made in the image of God and have a special, intrinsic value regardless of how young or how old, how able-bodied or disabled they might be. This does not apply only to those with Down’s syndrome. Neither does it apply only to those whom parent, family or society has deemed ‘makes a contribution’. It applies to us all.’ ~ Ciarán Kelly

http://www.affinity.org.uk/downloads/The%20Bulletin/issue-33/4)-a-world-without-downs-syndrome.pdf

Exactly. When something happens to one of us it happens to all of us. I had an incident happen within my own family this week, where I had to stand up and defend Sam against a member of the general public. And it made me aware once again of how little people really understand about these amazing gentle people. It’s such a shame. We are none of us, not Trump in the White House nor Natty the child Down’s syndrome model, any better than the other. We are all equal. That’s what my son reminds me of every day. We are all human. We all deserve to be here.

What are your feelings on who gets to be human?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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#justaboutcoping, #worldwithoutdowns, #worldwithdowns

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‘The value of human life does not lie in its contribution to society at large, or even to the happiness of a particular family’ ~ Ciarán Kelly

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