2011

Its ten days past your due date and I feel a bit like we are in the doldrums again. I know your homecoming is imminent, but to be honest I’ve barely even thought about it yet. I’m thinking more about unshackling myself from this joyless routine I’m in, and savouring moments instead of wading uphill through them. I’ve been treading water for so long I can barely remember how to breathe in fresh air any more.

It’s funny how perspective can change you. Three months ago if someone had said “On June 24 you will be looking forward to bringing your daughter home in a matter of mere weeks” I would have been over the moon. Dancing the happiest of happy dances. The fact that you are alive, breathing on your own with just a whiff of oxygen to help you survive, let alone that you are healthy and have an excellent chance at a great outcome – back then this moment was completely unimaginable. Not just for me, but for every medical professional I had seen. The highest qualified, most reliable medical professionals in this country, and your parents all lacked the imagination to fully comprehend what one tiny ball of fight and inspiration was capable of. You proved us wrong, all of us.

And yet, this part of the journey is tougher than it should be. I wanted us to be home by now. The doctors are being overly-cautious, which totally makes sense. I am sure one day we will be thrilled they were so right this time. But right now I am too exhausted to be thrilled. We are long termers here, and that is beginning to grate. The nurses know our names, our jobs, our families, our histories without looking in any file. Other mums look at us with a mixture of pity and awe as they come and go. This emptiness is growing and as hard as I am trying to be excited, the numbness still controls me.

The voice in my head that kept me steady for so long has gone, probably to look over a family that needs it more. Or maybe it was always just my inner survivor suppressing the desperation I felt in order to put one foot in front of the other and cope with what I thought lay ahead. I will probably never know, and it doesn’t matter much now. I am willing myself to look forward to the long awaited moment when we walk you through the front door of the home we bought with you and your brother in mind before any of this started.

Throughout all this, my resolve has always been not to go backwards. In that darkest moment on that darkest night when the world was promising to cave in and crush me I promised myself that all the moments in my life that followed would never be as horrifying as that one. True, I wasn’t to know you would actually survive it all. I wasn’t to know that the moment I made that promise really would be the worst of it. Nonetheless I committed on that night to keep moving forward and accept whatever was coming, in whatever way I was capable.

But right now, in this moment when I crave movement forward of any kind I have had an epiphany. Only in looking back can I understand the progress we have made. Reflecting on what was has made me understand much more completely where we are on this path. Only by reliving those horrible moments can I understand that this too shall pass, whether I want it to or not. My mantra of “Keep moving forward. Just keep swimming,” will inevitably fail me because I can’t appreciate what I have when I am stuck in these never ending moments. You are alive. Three months ago in my head and maybe in my heart, you were already gone forever. And yet there you are in front of my, struggling less and less, breathing easier and easier, recessing only slightly as you inhale. You are the definition of a miracle and you follow no rules.

With this realisation I cried a tear, or maybe two, and forced myself to look back over it all. To take stock of how far we have come. It is difficult to comprehend how we got here, but by remembering it all, minute by agonising minute I have a new way to go forward. I can see it – just barely – and I can revisit that image of all of us under the Christmas tree in a few months’ time. With great relief I have come to the realisation that we are a lot closer to that than I thought. Life keeps moving forward. We keep moving forward, in inches and millimetres, but definitely forward. We are so close now.

On the day I was admitted to hospital your Ma said to me “One day, in a few months’ time, you will look back on this day and wonder how you got through this. But you will be through it.” Across this daisy chain of a million moments; many low, and a few shining bright highs; she was right. I have no idea how we got here, either of us. But we are nearly through it.

2014

The littlest of milestones still seem huge to me, but it’s not something anyone else can really relate to. There are no groups that connect people who share these experiences, and even if there were I’m not sure how much I want to share. Reading my diaries from three years ago feels as though I am watching a movie of someone else’s life. I have very little connection to those fragments of memories, though I remember them perfectly and vividly. The detail remains but the feeling from them has gone, like a colour painting drained of polychrome and left with a watermark of fuzzy greys.

I have learned from my experience that looking back is not a bad thing, and it does not make me weak. I have learned that strength can be disguised as vulnerability, and I think I am better for it. But I still have a few lingering scars. I still look at newborns with regret, watching the quiet contentment of their mothers who are completely uncomplicated by months of living on a knife edge. I envy the way time just melts around them and the simple, delightful act of sucking in every exquisite moment second by wonderful second. I even envy the stress they feel, the sleeplessness, the frustration, and the smallest of tiny pleasures.

I am under no illusions that their lives are easier than mine was, but I still feel, (mistakenly I am sure), that that is the path I was meant to take and that somehow I have missed out on something pure and beautiful with such digression.

So milestones, even tiny ones, are giant imposing mountains from where I sit, and the terrifying gratefulness I feel when we reach them is equally as intense. Yesterday your paediatrician once again stated that he doesn’t think you’ll develop asthma. He has said it before. He thinks it certainly would have happened by now. There are no signs. The pure joy I feel at this small announcement, or re-announcement as is the case, is disproportionate. But as I said three years ago, perspective is a funny thing. Three years ago I couldn’t even imagine being in a place where having asthma would be a big deal because I didn’t think you would be here. Since then we’ve run the gamut of possibility and knocked over each bump in the road. No developmental difficulties. No physical disabilities. No ongoing oxygen requirements. No Chronic Lungs anymore. No serious speech problems. Each time the milestone got smaller, but the meaning for me was enormous. To think a child that was as urgently, frantically sick as you were, who wasn’t meant to be here at all, would not even have the reminder of a mild asthmatic cough – it is incomprehensible. And it still gets me every time. As I slowly put the pieces of my heart back together over these last three years, some cracks inevitably remain.

Now, as we get on with the business of just being alive I realise – you are not a preemie anymore. When I questioned your doctor about your ongoing respiratory health he gently reminded me “You are thinking like this because three years ago she had chronic lung disease and three years ago she was born three months early. But that was three years ago. She’s just a girl now, not a preemie baby.”

You’re just a girl. A remarkable one, no doubt, but just a toddler growing into a kid who will no doubt become a formidable fully grown person. Your tantrums, (though exuding an intensity and power that is well beyond your tiny frame), are just like other three year old’s tantrums. The joy we feel at watching you grow is the same as any other parent. The fear and worry we feel is no different to anyone else we know with children.

So maybe, though our path was very different, it is nothing more now than just the start of the story. Maybe, it doesn’t define you anymore. Maybe it is just how you started and bears no meaning on where your story goes from here. Maybe, I didn’t miss out at all. Maybe the experience was just not the same as other people I know. Now that we have reached the same place, that our paths have merged and we continue moving forward day by day; now I can look back at those moments and truly appreciate them for what they were. The start of an incredible life.