You know, I’ve never been one to pass judgement or tell people how they should be, but maybe I should… And maybe I’ll be hated for it but I don’t care …

This is a note to the parents I see every day on social media or in everyday life complaining that their child keeps them awake most nights – I just want you to know that I long for that…so please, please even in the darkest hour when you’re at your wits end from a baby you seemingly cannot comfort, or, wants feeding for the umpteenth time, just stop. Just breathe and cherish those precious moments and know that it WILL pass.

You see, I don’t get much sleep, or rather any sleep these days. My daughter blessed my life 16months ago and I spend my nights watching her machines flickering, watching her milk trickle through tubes into her stomach… And I listen to her alarm sounds when she stops breathing multiple times in the night. I stumble out of bed, up to stimulate her wondering if this is it?

 Is this the last time?

What if I get to her and i can’t bring her round?

You see I’d love for her to wake me up in the night because she’s hungry; because she misses me, because she has “just a cold” But that will never be.

The difference between you and me, parents of “normal” children, is that a “normal” cold could kill my daughter, it could take her very last breath. I’ve watched my daughter fight for her life in a medically induced coma whilst her tiny body fights, I watched her have IV lines put into her writhing little body 1,000’s of times, yes, really. To the extent that now medical teams can’t gain access, her veins are shot to bits!

I’ve handed my daughter over to surgeons over 11 times knowing that her body doesn’t cope well,actually, it’s her heart that doesn’t cope well and she has to go to intensive care. I then pray she’s strong enough to come round.

I, along with my 4 month old son endure endless trips to London to a specialist children’s hospital for doctors appointments. We attended physical therapy, we attend speech therapy…

And do you want to know some thing? Yes, you mums can all moan and hate to see your children poorly with coughs and colds or get upset over their immunisations, after all you wouldn’t be a mum if you didn’t feel the pain for your child.

But please, spare a thought for families like myself and think and appreciate just how bloody lucky you are! 

I know you mums see my Facebook posts and think… Her daughter is over a year old and she’s posting about how she can clap???

Yes. My daughter can’t sit, she can’t talk she can’t eat, and sometimes she can’t breathe. So when she does something that your child did months ago I celebrate and I think, my god. My daughter is a miracle.

My daughters diagnosis won’t define who she is a person and I will do everything in my will power till the day I die to make people see how Truely amazing she is.

So, to you all parents who moan about your kids from time to time.

Don’t.

Just don’t until you’ve literally lived a life like I do.

You just don’t know how lucky you are.

And do you know what breaks my heart the most? …

My daughter will never say “I love you Mummy” 

And my daughter will never smile at me.