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 21st 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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Yvette Carol, Author 