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The Two Thoughts I Had When My Son Was Diagnosed With Down Syndrome- A Dad’s Perspective

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Kevin O’Connor with his son, Fergus

By the 5th day of her labour, wife was drugged to the eyeballs, and so so tired. At 4:28am, she was medically assisted to bring our son into the world. I was asked what his name was. I went blank, and glanced at him for inspiration. One look at his mighty red hair, and Fergus popped into my head. A great warrior name, showing strength and vigor.

We hadn’t slept for almost 48 hours. My wife just wanted to sleep, and I wasn’t even taking in the smallest parts of reality. They took our newly named Fergus, and waited a full orbit of the Milky Way until he was finally returned to the room. “Congratulations! Here’s Fergus. We think he is showing signs of Down syndrome.”

Everything slowed down. It didn’t stop completely, there was still the explosion of activity in my head as my brain ran through everything I had seen, heard, or read about Down syndrome and dumped it in my consciousness. Honestly, it did not feel good. I regret that. The first time I held my son, I missed the experience. My mind was off looking for stuff it didn’t need to, but Fergus didn’t care. He was alive, he had parents, and his dad was holding him tightly while his mama waited to cover him in kisses!

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I left Fergus with my wife, and went to make the calls to our families. I walked down the corridor. I saw everything, but heard nothing. I felt separated from myself, as I focused on others in far greater detail than I would normally see them. What will I say when I tell them? What will THEY say? Why did this happen? I can’t handle this. So many questions spun in my mind. But two things happened while I walked down that corridor, that changed my life and that of my wife’s.

The two pieces of reality that changed forever, in that hallway, were my plans for Fergus, and my life plan for myself.

As I walked, I realized I’d HAD a plan for what my son would be like, and would success would look like for him. I had already started to paint his life canvas based on my own reality. But, I thought, ‘That’s not right.’

‘Fergus will be the artist of his own life. I will simply hold the canvas for him. He will choose the colours, and the patterns. He will make it as big and bright as he chooses.’

I kept walking and thought about my job as a coach, who develops people in business. Well, here was my biggest opportunity. I had to prove to myself, and Fergus, I could walk the walk and talk the talk. I started to get control of the situation. I built strong leverage points around our new possibilities, and I started to get excited.  Yes, I already knew I had to get through days of tests and injections, prods and pokes. But I knew I didn’t want to leave his side. I planned to tell Fergus how beautiful life is. Every morning, I would explain he had helped make the beautiful sunrise a bit brighter.

And then I reached the end of the hallway and made my phone calls.  By the time I finished, I felt a strong, protective father. With that simple act of routine after-baby tradition completed, I returned to my wife and newborn son.


 

34 months later…

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Fergus is a talking, running, musical little man. He is the ringleader at nursery, loves to climb into the dogs’ bed, and loves to play 8 instruments. He sings and high fives from his supermarket trolley. He is the very centre of our lives.

Our life with Fergus has had many challenges, but I wouldn’t change a thing. We laugh far more often than we could ever cry. His personality is a positive contribution to our life, and easily spreads through people.

I’ve always believed life will only give to you what you ask of it. I started out asking, ‘why us?’ Now, I think, well, why NOT us? I have only ever found in the end I’ve grown as a person, when I grasped opportunities life gave me.

None of this has been about us, as parents, although we have our own story to tell. It’s all about him, Fergus. Our little artist, with his brushes and beautiful colours, has started to paint his masterpiece. I can’t wait to see what’s next.

 

 

-Kevin O’Connor

as told to Kat Abianac

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