This is a bit of a weird one, my partner and I had a discussion the other day about how when another child is sick, and I mean just your average poorly, we struggle to empathise. It’s not because I am heartless or cold or all reasons like that, it’s purely because I think when you’ve endured what we’ve had to you see the reality and how frail life really is. Even when my son is a bit off I perhaps don’t give him the attention I should! 

In two years we’ve watched Ava be resuscitated, numerous times, we’ve been told she is going to die and we’ve had to face the reality that her life with never be “normal”.  she perhaps will never taste the foods we do, so will never hear the sounds that we do, but, she’s here. She is alive and she is loved. 

I’ve seen things recently where children’s paths have been changed, they’re now on a different one they were once on, but, they’re healthy as can possible be, they will continue down this new route, and make what they can of it in the best possible way. 

There’s too much doom and gloom, and often I see moaning when people don’t realise what they have got ! They have no idea what life is like in the flip side for families like mine. To truely tell yourself that your child will die, what about a funeral, who would want to come?

Th responsibilities of fighting and making decisions she is not capable of making not knowing if it’s the right one, but, it’s sink or swim right?

Ava has had over 20 operations, each one she has had to have because if she didn’t she would die. It’s simple. Airways that close periodically, feeding tubes to stop the damage to her already fluid filled lungs, nuclear tests to ensure that her one functioning kidney doesn’t give up…

Damage sustained so badly that she may never be able to have her own biological children. 

And even in pointing out some of her medical complexities, I know there are people, there are children who are much worse off than Ava! 

You need to look out side the box sometimes, things can be hard, life can be cruel, but I bet there’s someone far worse off than you and your family.