Tuesday 12 December 2017

Seeing the world through Finn's eyes

Writing helped Mark Twomey to explore his feelings for his son

Mark Twomey and his son Finn
Mark Twomey and his son Finn

Myself and my wife Fiona have three children, Sean, 12, Ellie, 10, and Finn, 6.

We were unaware during the pregnancy that Finn was going to have Down Syndrome - he was born on the day we were having a 70th birthday party for my mother.

I wrote this letter last Christmas but it had been in my head for a while - the writing was a little bit of self-therapy.

The title is important in that it was the first thought that came into my head when I knew he had Down Syndrome - me as an old man minding my adult son. It took me six years, and listening to a Tom Waits song where he sang the line "I will never let go of your hand", to work out that Finn will be holding my hand, not me holding his.

He had a heart problem, and that, along with bumping into my sister the day after he was born, changed the focus from thinking about how this was affecting me to how this was affecting Finn. I have never switched back since then. And Finn has thrived.

World Down Syndrome Day celebrations take place today and tomorrow at the Phoenix Park Visitors Centre. For more information see downsyndrome.ie

I Will Never Let Go of  Your Hand

I reach out, it’s time. I can hear the panic, excitement, be brave.

It happens like a blur — there are a lot of people here. I hold my breath and then I let it go. It comes out like a cry. My First Cry.

Now I am crying but I don’t know why. I look around the room and I see her, she’s there, the one who’s been talking to me now for eight months and two weeks. She’s crying too, but smiling – it’s a big beautiful smile. They place me, the ones I don’t know, right up in her arms. I am happy, but still crying for some reason. It’s a beautiful moment. She talks to me, asking the room who does he look like, but no one answers. In fact, all ignore us.

I am not surprised that I am a boy. I have been aware now for a while. Happy birthday Nana. Sorry for coming out during your celebrations but as you get older I thought it would be easier for you to remember my birthday.

She stares at me, but I know she doesn’t know yet. I knew I was going to be different, but how, I didn’t know. She studies me but she just loves me. She says I look like my dad.

My dad. Where is he? I can’t see him. Had he fainted? This happens!

I try to scan the room but I can’t move that much in the man-made straitjacket. I find him, he is sitting in the corner. He is looking at me but he doesn’t see me. He is sad. How bad can it be? Do I look scary?

He looks like a man trying to decide the next move. Like he’s thinking ‘run or stay?’. I watch the doctor go to him and whisper a few words in his ear. He nods. He already knew. He stands and walks over to me, but not to me, to my mam. He tells her. She stops and looks hard as if it’s the first time again, but this time she sees Me.

She too cries but not as much, she’s tired. I am not sure if she cares too much, but I wish she would stop looking at me that way. He keeps staring. It bothers him, I can see him, he tries to smile at me but I know it’s not real.

God, you never said I was going to be a freak show.

We move to another room and I sleep. While I sleep I don’t think what it will be like when I wake up. I just sleep, and everything is ok in the world, as it should be.

I wake and meet my brother and sister. They are so happy — they see me fully like no one else has seen me yet — they are not confused. God, they love me and it feels good to be loved.

The doctors check me again and I gather that something else is now wrong, as the crying starts again, but this is a different cry. They are no longer crying for themselves, they are now crying for me.

This changes him now, my father. He left and met someone, a little angel, and when he returned he was different. He now sees me fully. He no longer looks at me — he looks and sees Me.

His mood changes, he becomes like a mountain warmed by the sun that we cling too, and it feels good. He lifts us all up and I feel safe, not scared, as I was never scared for me, but I was scared for him.

I am not here to better myself, I am here to better you – I remind myself why I am here.

All through your life I will ask you to give freely – Give Give Give – it won’t end.

But I will give you one thing back, that is

Love. It will renew you when you’re empty,

it will support you when you’re scared, it will remind you when you forget. My hugs will be

like a warm bath that brings you back to the


I know you look into the future and see yourself as an old man holding my adult hand, but you have it all wrong; it is me who is

holding your hand.

I will never let go of your hand.

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