THE BLOG
03/01/2016 01:14 pm ET Updated Dec 06, 2017

The Day My World Changed Forever

Silence can be so very loud.

I remember that kind of deafening silence, so very well.

The doctor had just left the room. He did excuse himself ... but I had no idea why he left the room.

We sat there. The silence still ringing in our ears.

My eyes were focused on the dusty clock sitting on the overcrowded window sill. The clock blurred every few seconds as I felt my cheeks becoming wetter. My (now) husband D sat beside me. I felt his hand, all clammy and shaky, touching my upper leg.

I continued to stare at the clock, 1:02 p.m.

I heard him. I heard his sigh, it wasn't his normal sigh, it was the heaviest, loudest most heartbreaking sigh I had ever heard. I couldn't look at him.

He got up. "Jesus Christ" he let himself sob.

Slowly I looked up at him. His head was hanging low as the tears now fell from his nose.

I looked back at the dusty old clock, 1:14 p.m.

"Sorry about that." The doctor was back.

I wiped my eyes as D sat back down, rubbing his face with a crumpled up tissue.

"We have an appointment set up with a genetic counsellor for you both" he handed D a tissue. "Which will be next week" he sighed. Taking a deep breath, he closed his eyes, he exhaled slowly.

I watched his big chest rise and fall. I looked away as his eyes popped back open. "I... I" he stammered. "I cannot stress how sorry I am. I know this is very shocking news. I will be here, for you both and Ethan, whenever you need me. I am deeply, deeply sorry. We... I... we just don't come across this condition. We just don't..." I am sure he was still talking when I suddenly found myself standing up, gathering the single leaflet he had handed us an hour earlier.

"Oh, Miss Smyth, I'm not... you can't.."

"Doctor Browne," I knew my voice was shaking as my bottom lip wobbled "You've just told me my son is..." I couldn't say it. My eyes stung as my chest collapsed, I had never ever felt real heart break until that moment.

I had no control.

Everything went black.

I remember D rubbing my hand as a nurse was trying to give me water. Doctor Browne was standing over me. "You're ok Miss Smyth, the nurse here and Mr Renton are going to help you up now," he nodded at the nurse, then at D. I shrugged them both off me, I brought myself to my feet and drank the ice cold water.

D rubbed my back, his eyes all red and watery. He didn't open his mouth. I think he was afraid the same would happen to him.

I understood that.

That was, in fact the only thing I understood that whole entire week.

That was the week the lovely doctor sitting in his dusty office told us that our first born son, Ethan, was dying from an incurable condition called Hunter Syndrome.

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