If I could take his place, I would.

Azariah has always been sensitive to hearing emergency vehicle sirens, but recently, he’s added motorbikes & loud cars to this list. He really doesn’t like them, asks for a cuddle & will keep telling us about the noise or the bike for the rest of the day.

He heard one of these noises the other day in the car. I was sat in the back with him so reassured him it was OK & I found myself saying “I won’t let anything hurt you” as you do as a parent, and immediately my stomach lurched & I thought that’s not true. I’m actually going to be taking you to the hospital soon, where you are going to go through a horrendous procedure. One that will ultimately save your life, but you ARE going to be hurt while it happens, and I’m the one who is going to agree for this to happen to you!

How do you rationalise that in your head, in your heart?! Some days, I absolutely hate that this is our life and wish it wasn’t, but it is. That question “Why us?” Well ,why not us?” But it’s one thing when it’s happening to you and a whole other when it’s happening to your baby.

I find myself taking photos & videos of every day because I want every memory seared into my heart & mind, taking in every cuddle, kiss, laugh wanting them to never end.

People will say, “he won’t remember,” and in the long term, he may not, but in the short term, he will experience it too. He’s a very aware, alert boy.

Next Tuesday, we will discuss cardiac surgery with the cardiac team at Alder Hey. If I could do anything to take his place, I would.