A very happy Ethan with a pyjama bottom on his head!

When I meet them, they smile and nod.
I already know what they are going to say.
It’s a conversation so many have had with me since 2008. (The year my son was diagnosed with Hunter Syndrome)
The difference between the conversation then and now – I cannot end the conversation positively.
I can’t bring myself to pretend there is a positive.
There isn’t one.

The very first rock I painted in honour of Ethan

As a result, I stand there waiting for the usual conversation to begin.
How are you doing? And the rest of the family? It must be so hard. I don’t know how you do it. But you’re just amazing.”
Sometimes they don’t wait for an answer.
Other times they pause while I try to figure out the best way to answer them.

I sometimes feel like I’m a box to be checked–must mention how great she is and acknowledge that it is hard — which leaves me to wonder if the existence of my darling son is destined to be glossed over?

No one knows what to say, I know.

Ethan out in the snow not overly impressed by it!

Here’s the truth: I don’t know how to answer their questions.
I don’t know what’s enough or too much to share.
I know they mean well, and they don’t know what to say.
I get it. I understand that they do not know what it is they should say. Trust me; I don’t either.
But, my sons’ life isn’t something to be glazed over.

I want to talk about Ethan all the time. Maybe I’ll get teary-eyed, or perhaps I’ll ramble, but I need and want to talk about my son, my Ethan. I might make them uncomfortable, I might make them upset, but by giving me the space and time to answer their questions honestly and openly, they give me a few minutes to talk about my beautiful boy, who I miss so desperately.

Ethan hiding in his grandparents garden

My son lived.

My son was here, and he is still here with my family and me.

He is within us.

He is in every waking moment of our lives.

He is in the light, the stars, the warm breeze, the soft rain, the snow that is whiter than white, the morning dew, the colourful rainbow… We see him and feel him with us still.

His is the voice that encourages me to face the day.

The soundbite of his laugh makes a smile dance across my lips.

I am transported from any point in time by his life stories. He can take me from 2002 to 2020 in the blink of an eye.

Ethan is my son, and my son lived.

Ethan admiring himself on his Confirmation Day

When they ask me again, I will take a deep breath and share the movie playing in my mind at that particular moment because Ethan is always on my mind and in my heart.

This is what we all need to know – parents who have lost their children may not know what to say about their heartbreak and unbelievable sadness, but they do want to talk about their child, their life, and their stories.

Ask how they are, wait for a response and go from there.


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