Sometimes..........

Sometimes, just sometimes, I allow myself to think about that time..................the time before.......before I'd seen a child die, her mummy begging her to come back, she was the first, the first of many children I was to see die, her name was Kayla, she was 18 months old and I saw her die! It was the first of many mummy and daddy's heart's I was to hear break, it is audible you see, the point at which they break, and it is the most devastating sound in the world! After Kayla came Grace, Thomas, Abraham....the list goes on and on, a list of children, babies I saw taken and mummies and daddies heart's I heard break!

Sometimes I think back to a time before I knew what it was like to wake up every single day and not have that knot of terror resting on my chest, blocking my throat, making it impossible to swallow, making taking a breath a mammoth task! That terror that today could be "The Day", the day my whole life could change forever, the day that DeeDee is next, the day I could loose the most precious thing in my life, my beautiful little girl! It's getting harder and harder to remember "The Time Before" sometimes I think I can and I no longer know how it makes me feel!

It gets harder and harder to keep the door locked and double bolted on the "What If's" I have to though as once the "what if's" are out, floating around, they'll never go back in, I'll never be able to shut the door again, so it has to stay shut and I have to stay strong, the door will open one day and then it will never shut again but the time will come for that and it isn't now!

When I planned to be a mummy I never knew, I just never knew, that resuscitation would become so natural to me, as much a part of my day as nappy changes and nap time!

I suppose I should take you back again as you really need to know the past so that I can bring you up to the person I am in the present, I'm trying not to make you too dizzy with all the backwards and forwards but it seems unavoidable.

The first time my DeeDee stopped breathing at just six days old I felt like I stopped too, I could hear my heart hammering in my chest, I could feel myself being guided away but I don't remember taking a step, don't remember taking a breath! Now when it happens I don't think, don't see, just do! Because that first time wasn't the last, it happens every day you see, sixteen times was the worst day, three on a good day!

Due to the position of "The Thing in Her Head" every time she cries she goes into respiratory arrest, as much as we try to avoid this there is only so much you can do to keep a stubborn little todzilla from crying, meltdowns over juice taking too long to arrive, the biscuit barrel being empty, shoes taking too long to be put onto her little waiting feet, all of these things can and have caused respiratory arrest and then she has to be resuscitated to a degree, sometimes just supporting her, keeping her lungs open with a little bit of PEEP (pressure) is enough and she will come back on her own, other times it's ten minutes of her not breathing, of having to breathe for her via an ambubag attached to her tracheostomy, ten long minutes of our hands on her little chest feeling her little heart beating, sometimes strong, sometimes barely palpable, ten long minutes of hoping, wishing, begging this not to be The One! The One with which her heart stops, the one that, at best leaves her brain damaged, at worst takes her away, I'm not ready for her to go you see, how can I ever be ready!?

We've tried to prepare ourselves, we have "A Plan" in place, a piece of paper we pass on to ambulance men to let them know what we want them to do, "they" call it a "personal resusitation plan" and another piece of paper to say what we want to happen "afterwards", lots of pieces of paper! But how can you really prepare? How can you be prepared to loose the one person you should never have to? How can you prepare yourself to say goodbye to your baby? You can't! You shouldn't have to! But in the world I live in you do have to and it's bloody hard!!

But I close the door, keep it locked, double bolted, never even look through the peep hole and close my ears to the "what if's" concentrate on the here and now, never looking forward, never looking back, concentrating on the very second we are in......no more.....no less! Creating memories and smiles is the order of the day in the Enigma Household and that's what gets us by, memories and smiles........and lots of photos!!

But sometimes.........................

Much love
Eni
xxxxx