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.
|With my cousins at my 2nd Birthday Party!|