Thanks for agreeing to be interviewed. Could you please share your name and where in the country you are from?
I’m Geraldine from the land of the tribes , beautiful Galway city !
Would you mind sharing the moment that your life changed forever?
Moments throughout all our lives change us whether we are aware or not. There were plenty of moments in my life that with hindsight ,I discovered fundamentally changed me, I just wasn’t aware at the time.
There is only one moment in my life thus far, that I was very aware was going to change me regardless of how I reacted to that moment. I knew I’d never ever be the same again.
The moment I am talking about came after the doctor’s words echoed in my ears. It came after I had told my family and friends of those harsh words the doctor had said. That moment only came when I was sitting with my husband and our son in Temple Street children hospital while a social worker, a genetics doctor, a specialist , a cardiologist, a neurologist, and a whole load more …came into our hospital room explaining how they could slow down the progression of our sons illness – they needed us to understand that our son was terminal and that no amount of prayers could change that.
They needed us to know that all they could do was help.
In that very moment, I changed.
I felt my heart break. It wasn’t a new feeling to me as I had that gut wrenching feeling weeks prior in the doctor’s office but here it felt more real,more definite,more final….
I felt like they got a sledgehammer and smashed it into my chest to ensure I understood that hope was something I would have to choose, it wasn’t a given. From that moment on I chose hope and chose to be with my son for as long as he was here.
And how did that impact you and the people around you?
I packed in my job and became a full time carer. It’s hard to talk openly about Ethan and his syndrome . It’s easy to talk about Ethan but that blasted syndrome is always there, taking bits of him day by day. His diagnosis impacted not only us but our family and friends, some didn’t want to believe it, others were convinced I was wrong, some came with hugs, tears and anger while some just disappeared into the night.
Do you remember any specific dark or brilliant moments on your journey?
I’ve had plenty of dark moments since March 2008 – each Christmas I beg for this not to be his last – each birthday , each new year, each St. Patrick day …each Sunday … it’s a reality parents like me don’t like to admit but when we are playing with our kiddies, there’s a thought – will he be here tomorrow?
I’ve had brilliant moments ,so many –Ethan has shown us how kind people are ,how wonderfully innoncent kids like him are. He has brought us to some amazing places and introduced us to a world of people who walk a mile with you ,picking you up when you fall but letting you fall ; ‘cos it’s important to fall but it’s always important to take that outstretched hand and get back up again and again and again .
Ethan has made a plane full of people laugh and clap due to his excitement of the plane taking off . The whole plan roared with him “up,up, away” it was magical.
What have you done to work your way through it all?
I write !
I use mindfulness.
I see a therapist.
I see my doctor
I laugh with my friends and family
I try my best to live in the here and now .
I am present when I am with you.
Do you ever think about the life you had planned before Ethans diagnosis? How do you cope?
I still think about what Ethan would be like if he were an average 16 year old. It’s hard not to.
It breaks my heart. How could it not?
Instead I have an Ethan who is slowly disappearing before my eyes and all I can do is take pictures ,videos , keep him calm and as happy as I can … I have to fight daily to be here with him. The mind is a powerful thing and can bring you in to such darkness but if you’re aware of it’s power and do some mindfulness, you’ll find a small light which will grow the more you visit it.
Yes I still think about what life could have been like but I’ll never know and that has got to be okay because if I spend too much time thinking about the ‘if onlys’, I wouldn’t be able to function and having three amazing boys, a husband and a dog – this mammy has to function.
How have you changed as a result of your experience?
I have changed beyond recognition.
Ethan has taught me how to be happy. He’s taught me how precious time is. He’s taught me that assuming anything really can make an ass out of me and you! He’s taught me to see him, to hear him and to come into his colourful bright world. He’s taught me that ignorance is truly bliss. He’s taught me I’m not alone in this. He taught me to be patient and kind even when on my last nerve.
He’s just made me better by being him.
He’s taught me to let go of that thing that holds us all back and jump into an opportunity despite the anxiety. He’s the reason I write, he gave me the courage to chase that dream for him and for me.
If you met someone going through the same thing as you now, what advice would you give to them?
Anyone who has a child with a rare condition, with disabilities, or a life limiting condition should talk .
Talk to anyone you feel comfortable with – don’t hide away, come into the world and you’ll be surprised by how kind people can truly be.