This morning; I woke up as usual, the same way I always am with my one year old son screaming for his milk and my 2 year old coughing away choking on her salvia. I dragged myself out of bed with my heavy ever growing baby bump, gave Steven his milk to buy me some time before having to carry him down the stairs. I then drew up Ava’s daily medicines that keep her from drowning in a pool of secretions…

As the morning routine went on, I was getting Ava dressed, I pulled open her nappy…And there it was. 

A nappy with blood; urine completely filled with redness. 

It was a huge slap in the face, it just showed me that I’d been caught up in Ava being “well” for a couple of weeks. Things had been going okay, we’ve been making progress with her development but I’d stupidly forgotten that yes, her kidneys are still failing and time is running out for an answer. 

It’s worth remembering that her urinary problems are a co-morbidity to her actual condition which is CHARGE syndrome. A very cruel, harsh sidekick to an all ready debilitating, deathly syndrome. 

And there it was.

 People in my CHARGE community, all the Mum’s and Dad’s – all of us,… we all know the statistics surrounding death in our children. The statistics are alarmingly high, once our children make it past one years of age they are considered lucky, however a statistic of 25% of CHARGE children will not make it to or past their 5th birthday…

How do you digest a death sentence that you are handed with this diagnosis? The syndrome locks you into this fatal grip, where a cough, a cold, an infection, a co-morbidity such as renal disease is all that’s needed to sink it’s claws in, and take your child from this Earth.

We live each day wondering what’s going to happen next? What is greeting us tomorrow; do they have the strength in them to fight!? Do we, do I as a mother have the strength to carry on watching the numbers flickering telling me we are in trouble, again. Do I have the strength to bundle my sick daughter into the car in the early hours of the morning to get to hospital …?

When people say to me there are people worse off than us, I want to scream. 

I know there are people less fortunate, more poorly than Ava, and I know so many who’ve fought much less than she has and not survived. But then I think; how many are walking round with a statistic above them? 

How many of them are potentially extremely very sick BUT there’s a potential cure? 

We have no cure. 

What we have are defected Genes, the very composition that makes us compatible to sustain life on this planet is faulty. There are no miracle medicines, there are no magic therapies. There never will be… so if I get defensive about how amazing my daughter is, or how I like to remind people of what we go through, and what we will continue to go through to the day I leave this planet. I apologise. This journey is not for the faint hearted. It really isn’t. 

I learnt a long time ago that there’s a chance I could outlive my daughter. I’ve already been through the grieving process 100 times over, and I’ve done that for Ava. Because I want every single day to be the best it can be; I want her to feel loved, to know what love is.

I’m off to watch my daughter sleeping now as she has a cold. A cold that to most parents would worry but not worry like I do. It could put her in ITU.  It’s not “just” a cold. 

As her little chest rises and falls I can see she is struggling for air and I’ve had to up her oxygen and make sure she doesn’t tire any more. 

So when you tuck your children in tonight, spare a thought for the parents like me who are hooking their children up to machines to keep them alive. 

We define what sleep Deprived Parents really are. 

We never really sleep,… just in case. We are mum, dad, nurses, doctors all in one. All the while we try and keep our heads above water.