Skip to main content

A letter from a heart mum to Shaun White.

Shaun White in action. What TOF?
Dear Shaun White,
We watched you on TV,  your winning run before claiming your gold medal.
Earlier in the day I had shown my son some pictures of you in action.
Of you receiving your medals. I turned to him and told him that you too, had the same "special heart" as him.
He looked up at me and back at the photo of you on the half pipe flying upside down through the air.
I told him you were proof he could be anything he wanted to be, he could do whatever he wanted to.
You may not feel a role model to other Tetralogy of Fallot sufferers but you are. Especially to us.
I will never forget three years ago when sitting in a hospital bed down the corridor from my son who was fighting for his life in NICU. We were told Elijah had TOF.
They didn't know if he would survive. He needed surgery, he may have future complications.
I hadn't even heard of CHD but it was the life sentence that had just been handed to my son, to us.
I shouldn't have but to try and reassure myself or to make sense of it I Googled CHD. I Googled TOF, I read thread upon thread about surgery procedures, success rates, others stories.
For some reason we looked up celebrities who had CHD to normalise what was happening to us. We read your name, and after your name was this word; Olympian.
That one word, made me look up your whole career.
We sat in awe about what you had achieved.
You gave us hope when we had none.
Whenever someone would ask how Elijah's condition would affect him we said it wouldn't, we said your name.
You are a symbol for us as a heart family.
Sometimes in the darkest days you need to hear a positive story to reignite your hope, to give you light, to make you believe that it might be okay.
You have shown us that our son can be what ever he wants to be.
(Currently a Firefighter but does want a gold medal now).
Thank you for giving us that hope, during the worse time of our lives.
I can only hope one day my son provides as much inspiration to others that you have.
From a mum to a TOF warrior.


Popular posts from this blog

Dear Elijah, on your fourth heart day

Elijah the heart hero never letting anything stop him. Today  is your 4th heart day. It's 4 years since we took you down to Great Ormond Street for open heart surgery. It seems to have crept up on us again. Another whole year has passed but it hasn't changed how I feel about that day. Some have said that oh, by now surely you should have gotten over it after all it's been 4 years. The answer is I don't think I ever will. I have been thinking a lot about that day, where I signed the consent forms for them to take you and operate on you. To either save or take your life. That day was the worst of my life, the unknown certainty of whether you would come back up again. I held you as they put you to sleep. They gave me your dummy as they took you from me and laid you on the operating table as if you weighed nothing. I couldn't even kiss you goodbye in case it was the last time. That's why I won't ever get over it and those who have been in the

The obligatory birth story

Eighteen months have passed since our beautiful little miracle emerged (I say emerged because 'vigorously ripped out' doesn't have the same ring to it). The rollercoaster of the past year and a half has somewhat levelled off, and things have become almost normal. Now feels as good a time as any, for me to confess (to HONESTLY confess) what it's like to give birth, become a mother, and cope with the joys of reflux, teething, milestones and TODDLERDOM! And how having an NICU baby with a heart defect makes these things all the more stressful. Oh, and there's also my increasing fear that Elijah is Damien from the Omen, with his endless antagonising of our cats. I will save the nine glorious months of swollen feet, constipation, and eating chocolate on the sofa, like a whale (whilst watching RHOBH in my pants) for another time. This is the story of how Elijah was born. To be honest, after watching numerous programmes on TV, they make it look like, once your 

Day One - Diagnosis

Disbelieving the diagnosis. Every day for 28 days I will be taking part in the  #chdphotochallenge over on my Instagram but I will also be blogging everyday too. Today, is day one and the theme is Diagnosis. I can remember vividly when we recieved Elijah's diagnosis of CHD and Tetralogy of Fallot. It is a day I don't look back on fondly. We were visited bedside by the consultant on the maternity ward. We were told via diagrams that Elijah's heart wasn't working correctly. There were numerous structural abnormalities which were causing his cynatic episodes. In layman's terms his heart leaked back de oxygenated blood, there was a hole that would need to be repaired and thickening of the heart muscle too. The terms overwhelmed me, I didn't know what they really meant for my baby who was fighting for his life. Receiving the diagnosis was the day our lives changed forever. We were no longer new parents but heart parents of a CHD bab