Wednesday, September 13, 2017

Excerpts From Our Altered Life

By Charlene Beswick

Harry, Oliver, and their Mom, Charlene

Charlene Beswick's life changed forever the day she gave birth to two twin boys, one with a facial difference called Goldenhar Syndrome. Here is a passage from her book Our Altered Life. 

“Oh, I don’t mind what sex it is as long as it’s healthy.”

I have heard it a thousand times. I even said it myself when I was pregnant. We knew that I was cooking two little people, but not whether we were having boys or girls. In a world where everything is instant these days from your coffee to your car insurance, we wanted to wait until the babies arrived until we found out their gender. Patience is not one of my virtues so this was tough for me but I wanted to experience the elation of hearing “It’s a boy!” or “It’s a girl!” and keep everyone waiting for the news just as I had done 16 years earlier waiting to find out if I had a baby brother or sister! 

The anticipation was so exciting.

I never, not for a moment, expected anything other than two perfectly healthy babies. I had looked after myself brilliantly and not given in to too many weird and wonderful cravings. I knew that my babies would be the best babies in the world and I loved them even before they arrived.

Of course, everything changed when they did arrive. Eight weeks early, weighing just 3lbs 9oz (1.6 kg) each. They were tiny. And Harry had half a face. No eye, eye socket, ear, nostril, and a short jaw on the left-hand side. A diagnosis of Goldenhar Syndrome plunged me into a world of language and options I couldn’t comprehend. I had said I didn’t mind whether they were boys or girls as long as they were healthy. Now I was being faced with a reality I had never imagined. A life I had not planned for. A future I couldn’t predict. A world I didn’t want to be a part of.

There isn’t a word to describe how I felt. Maybe the analogy of being stuck at the bottom of a long well explains it better. Feeling like the only person in the world with your thoughts echoing and bouncing off walls you have no way of climbing. Waiting for someone to come and rescue you from this moment. Feeling helpless, desperate, and beyond sad.

Of course, it didn’t last and Our Altered Life chronicles the journey with my boys who I naively believed wouldn’t be the ‘best babies in the world’ when we heard the news, only to discover in fact that they would become the best boys in the universe (at least, in my universe!) It’s my honest account of how a life I would have never chosen became a life I would never change.

The book Our Altered Life will be available through Amazon on September 29, 2017. 
For now, read where it all began at Charlene Beswick's blog,

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