Minutes or Hours

My Darling Mojo,
Today it is two years since you were born. Two years since the moment I held you in my arms for the first time. At that stage I was expecting it to be the last time and my heart simultaneously flooded with love and broke irrevocably. Oh how we had cried for you before you arrived; our girl who wasn’t going to have a chance, and even for the time you might have, there was no chance of any quality of life. It must be true we thought, we had it in writing.

There was, however, always one feeling which I just couldn’t shake. Hope. Even at the very darkest of times when the news seemed to go from bad to worse, it was there, always niggling in the background. Swelling every time you kicked, feeling proud every time a doctor looked surprised by how ‘normal’ the rest of your development seemed to be. Hope.

And so here we are two years to the day that your daddy stood for 7 minutes watching the doctors trying to help you breathe. “She’s fighting Lizzie, She’s fighting so hard” he told me over and over again. Little did we know that this would be our first encounter of the unflinching stubbornness and fight that we know so well today.

Then you were in my arms, and there you could stay.

So we took you home and tried to get our heads around what had happened. You didn’t have a cot or nappies or clothes. John Lewis did very well out of Daddy, Gamma & Grandpops that afternoon. “We need everything you need for a baby”.

So it began, the endless stream of medical professionals pouring through the door, all very well intentioned, all telling us what you would not be able to do, what ‘rapid deterioration’ we could expect. You smiled very early on, retrospectively it was a smile you had probably been suppressing since day one. The smile of someone with a secret. You knew something none of us did, not only were you going nowhere but you were planning on proving each and every single one of them wrong. And how you did…

You fixed and followed
You developed motor skills

Your progress was remarkable, we watched in awe as you picked up social skills with ease, smiling, laughing right on target. Even your motor skills, which we knew would be very difficult for you, came slowly and you always chose your moments to take our breath away by reaching out and picking something up on a day when I was feeling very sorry for myself, or rolling over just when I’d resigned myself that you would never be able to. I wasn’t the only one who quickly learnt that you were not to be underestimated.

You laughed and laughed and laughed!

For the whole of your first year I was completely focussed on you reaching your 1st birthday. So much so that I found your first birthday a bit overwhelming. As you know mummy is a bit emotional on the best of days let alone on celebratory days. I struggled even then to get my head around how far we had come, how much you had achieved and I struggled to reconcile the child with no quality of life that I had prepared for with the vibrant, beautiful, sociable, happy girl I had. I struggled to contain the amount of love I have for you.

Your 1st Birthday!

After your birthday things changed everyone seemed to recognise the amazing progress you were making and life became pro-active. We began Portage, Physio & OT. You started to get the help you needed to use your fine motor skills and suddenly coco-pops were on the menu, individually eaten but eaten none-the-less. Life got fun, we found the Enhanced Children’s Centre and our weekly routine was as much fun as it was dull medical appointments. Throughout all of it you were patient, hard working, resilient, fun-loving and so spectacularly stubborn.

I know, my baby, that it is hard some days. I know how much you hate the blood tests and I know that look on your face when someone takes hold too tightly of your hand to insert a cannula. You know what’s coming and you’re scared and you hate it and I hate it too. You are either ill or ‘under the weather’ most of the time and your room is full of vaporisers, saline, vapour rub and the Calpol and nurofen are never out of use long enough to be put back in the bathroom cabinet. Sleep is difficult, eating is frustrating and all the medications are a daily source of stress for you. All I can say my darling is that my whole life is dedicated to ensuring that you have to endure as little pain and unhappiness as possible. Whatever may come in the future I know, I will be in your corner, fighting as you have taught me to, pretending to be as brave as you are.  No matter how hard it will be, you, me & daddy can face it together.
No matter how old you are I don’t think I will ever fail to be amazed by your being here. I love you so much that it regularly takes away my breath. Your bravery, strength, resilience, sense of humour and your capacity for love are all astonishing and I cannot begin to tell you how much you have changed us and how much we have learnt from you. We are more proud of you than you will ever comprehend and you are as loved as it is possible for anyone to be (and then some).
So Happy 2nd Birthday my girl, here’s to many, many, many


All my love always
With my cousins at my 2nd Birthday Party!



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