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Dear CHD...

The strongest person I know and my CHD hero.

Dear CHD,
Four years ago I had never heard of you.
I didn't know what you stood for.
I didn't know what you could take away.
I was naive to not realise the impact of you on my family's lives.
You changed my life that day as I watched as you took residence in my newborn son and went to battle with him.
I watched from the sidelines as your effects ripped through his tiny body and I felt every breath he struggled to take, heard every alarm you caused to sound, you were winning.
You were killing my baby.
He was loosing the battle but there was something you didn't count on, that he fought back.
He was so little, but he was more powerful than you.
He got stronger, he began to feed, he tolerated you and eventually he became strong.
We took you home with us, it wasn't just our newborn baby we welcomed home, it was you too and guess what, you were never invited.
You robbed us of a normal life.
You caused fear in me like I have never felt before.
You gave is an uncertain future, one whether I didn't know if because of you, my son would live or die at your hands.
You made me mourn my healthy baby, the one I dreamed of for nine months.
You made me believe this was my fault, I did something wrong to cause you to choose him.
I watched him sleep, I agonised you would take him in the night when I wasn't looking.
You weren't content with just living in my son though were you?
You had to make sure your effects were known, you had to show us what you could do.
It wasn't enough you robbed us of the first precious hours, days, weeks with our new baby, you wanted more.
You weren't done but you never will be will you?
You were always at the back of our minds, the cough he caught, when he looked abit pale, was extra tired or off his food.
You made a six month old baby endure a life threatening and brutal surgery.
I signed the consent forms not knowing if the open heart surgery would kill my baby.
Because of you we had to learn to care for our son again, to help him recover, to hold and pick him up differently.
But, things changed that day he came out of surgery.
You were still there, you would always be that wouldn't change but you seemed smaller, he was winning.
The appointments became less frequent, we began to even believe that we were somewhat 'normal' but you would always make yourself known at some point.
You never let us forget you for long.
Doctors, nursery, dentist, hospital, school, sports clubs, baby classes you were the big pink elephant in the room, one we had to acknowledge every time.
You made things difficult.
You are always there, like when you leave the TV on for background noise.
I've seen you take lives of those we know, ones that have barely begun.
I've seen you rob parents of their children.
I could never put into words how much I despise you and what you are.
Why you snake your way through my son, why you course through his veins.
I see your mark on my son's chest every, single day and I remember why I carry on.
I will always fight you.
I will do whatever I can for my son to have a normal life, you will not take his dreams.
You will never stop him doing what he loves, I will make sure of it.
You've taken so much from us, from him and I'm under no illusion you will take more.
But there is something that comes with you.
Something that you don't count on and that is your weakness.
When you make a heart baby, you make a heart mother.
She is your worst enemy.
She will follow you each and every step of the way.
She will educate herself, she will learn all about you and how to beat you.
She talks to the Doctors in their language, she knows what care she wants for her child.
She will do anything to protect her child against you.
Somethings she can't control, and some things are out of her hands.
But, she will always be there, just as you are.
She is right behind you and she will not let you win.
I hate you for what you did to my child, but I also thank you for making me the mother I am today.
You are strong, we are stronger.
I won't give up, even when it seems there is no hope, I will keep flighting you until the end.
You will not win.
He will go on to be great and you will be an after thought.
A side note.
A mother's love will stop at no bounds, it carries a fierceness you didn't know was inside you and it will do anything to make sure you don't win and take her child.
You will be part of our lives forever, I can't change that but what I can do is change how much control you have over us.
People will not look at my son and see you.
They will see him and how much strength he has.
I will talk about you, tell others about you, share our story about you in hope that we will change how much you can do to a family.
I will make you smaller and smaller.
Then one day we won't need to know your name, or what you stand for, what signs to look for, because you won't exist.
From your worst nightmare, a heart mum.


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