2011

I haven’t been able to write much lately. I’m trying to record everything and keep notes to remember it. If something happens to you I want to remember every single minute, every nanosecond. Living in here with you part time is like living on the edge of a cliff every day. The voice that has reassured me for so long is warning me things are going to get rough. I’ve pushed it aside for now but I knew something is coming and today for the first time since you were born I remembered why I trusted that voice in the first place.

I’ve missed so many days, so I’ll try and write down as much detail as possible. It’s been difficult to record anything, even as I’m writing this pains me. Writing it makes it all so real, and while that used to reassure me, suddenly it is frighteningly tangible. Let’s start with Aerie.

Every morning when Aerie’s mum comes in we say hello. I’m always there first because your feeds are now four hourly and on a different schedule to hers. But I always look up and smile and exchange muted pleasantries and then we usually have a more in depth chat about both yours and her progress as we express in the mothers room later. Aerie’s family live near us. I have never met her Dad, apparently he comes in at night after work. She has a condition whereby she develops fluid droplets on her lungs, and which her parents only found out about at a 28 week scan. There must have been an inkling to have even had a 28 week scan, that something was a miss, but still it has been an awful shock. Aerie was born at 32 weeks due to premature labour, (as opposed to the doctors deciding for medical reasons she needed to come out).

A few days ago as I walked past the reception desk Aerie’s Mum and Dad were talking to Dr Sin. Instinctively I knew something was off because Aerie’s Dad is never in during the day and her Mum is never here before me. I smiled at them and hurried on past. There blank expressions said it all – something was wrong.

A few minutes later I was preparing your cares and realised I was out of supplies at your station. The nappies, wipes and cords for your monitors, (which get changed daily), are kept right near the reception desk. I was hoping they had finished their talk. Usually these discussions are had in the quiet room but perhaps it was busy. The isolation room was being used for a baby with whooping cough, so maybe there was another difficult conversation being had at the same time. Nurse Lindsay called out to me as I approached the desk – “Don’t forget you need to sign the paperwork for the preprem trial!” This meant I would be at the desk a few minutes, where I desperately didn’t want to be. There is nothing worse than the look people give you when they feel sorry for you. I’ve seen it before so many times lately. I never want to give anyone that look. But I do feel hopelessly sorry for Aerie’s parents. And I feel uneasy knowing another baby might be dying right next to you. The sadness is like an infection, spreading throughout the ward as each of the surrounding parents realise their own child is so very close to death too.

I tried not to listen, but in times of stress my logical brain takes over in the absence of instinct. It drives me to get information and assess the quality of it in order to feel some comfort with what I am dealing with. In this case my logical brain was trying to find a way to be reassured that whatever is happening to that poor sweet baby is not going to happen to you. So while the fight raged on internally between grace and understanding for my fellow NICU parents and my desperate desire to know for sure you would be okay – I caught a few words.

“Babies like Aerie hit their milestones very late. She may not sit up until she is one, if at all. She may not talk until she is three, four, six – maybe never…”

I tuned out. This was my greatest fear for you. Not that you would die, though that was a strikingly potent fear in itself. But that you would be profoundly sick, trapped in a body you couldn’t command. Not because I would love you even a microgram less, and not even because I’m not sure I could live with the guilt that my body had caused you such harm. But because I would hate for you not to have the opportunity to be all that you can be. I could handle disability, but profound disability would be – well I don’t have the depth of vocabulary to describe how devastating that would be. This I feel, and have felt, in the moment. I don’t know how I would feel in a year’s time or a decade. I can’t even imagine a time beyond lunch this afternoon and returning home to your brother.

The next morning Aerie’s Mum and Dad came in again together. It did not bode well that he was here two days in a row. I imagine he had taken some time off work and my mind reeled at what that meant for his little child. I smiled as they approached and said hello. They barely responded and I knew for certain right then. Nurse Lindsay later took me aside and explained to me that there was a ‘sensitive situation’ in the crib next to us and that Aerie’s parents would be experiencing a difficult time. Essentially she was warning me that I was about to witness the baby in the crib next to you die slowly as her parents watched helplessly on.

For the first time I left early, after your 11am cares. I went to the gym and ran and ran and ran.

The next few day were incredibly tense. I don’t know what the exact diagnosis was and wasn’t going to ask. I rarely saw Aerie’s mum in the mother’s room expressing milk anymore. One day they turned her ventilator off and the next day she was just gone. And in the NICU, life just kept going. There were new arrivals, emergency ressusitations, graduations to Level 2 and the expected daily antics of nurses and doctors trying to keep everyone on an even keel as well as doing their jobs. I haven’t seen Aerie’s parents since she passed away. I hope they are finding some peace, somehow, in some way. I imagine they are not.

Yesterday when I came in your oxygen requirements were up to 24%. This morning they were 28%. Nurse Aiko assures me that you are just tired, you’ve done so unpredictably well so far. At three weeks old, almost 30 weeks gestation, you have been the star performer so far. Its only fair you have a bit of a rest, she tells me, but I know better. I try and read each of the nurses as they come and go in shifts and none of them seem to be bothered by your increase. But I know better. I know something is coming.

Please fight it. If you fight whatever is coming your way I promise I will spend every day giving you everything you need to be happy. When I was on bed rest I remember praying and trying to bargain for your life. I told myself I would give up limbs. I would give up my life. I would give up my marriage. All that is important to me and I hold dear, bar the well being of your brother, I would give up. I told myself and whomever I was praying to that I would do it in a heartbeat . I can say this now –  now that I have met you and held you and loved you and sung you to sleep – I can say unconditionally and without doubt or hesitation. I would die for you Lucy. I know it with certainty. I will do whatever it takes to make you well and healthy. Please fight. Please stay.

2014

You are tempestuous. Wonderfully so. Challengingly so. With you at the age of three I know I am in for a fight most days. Some would say that’s quite normal for a toddler but I know differently. You came into this world fighting. Fighting for every single breath. For months and months and months you struggled against the odds, scrambled for breath, beat infection. Day after day.

You thrived on the fight, on the battles that life threw at you. You relished it. By the age of 6 weeks we had been told you were feisty, spirited and determined by your then carers. Lots of people say they are fighters, but with you it is woven into your very being. You know nothing else. More than a fighter, you are a survivor. That word gets thrown around a lot by the media, but until one has actually faced death and bitterly laughed it off as I have seen you do, the word loses meaning.

Amongst the tantrums you have moments of sweetness and charm. Many of them. In fact most people in your life underestimate you because of your charm. They see a sweet, pretty little girl who loves wearing tutus and going to ballet and they assume you are sugar and spice and all things nice. I know better and I am proud of you for it. Your inner strength, your determination and zeal are unmatched. You will be a force to be reckoned with because you are not what you seem.

You came into this world fighting and you know nothing different. But here’s the thing – I want you to know differently. I want you to pick your battles, smell the roses and all those other clichés. I don’t want you to feel you need to spend your life fighting. You are so very loved and cherished by everyone around you and I would gladly take the burden of the fight from you if you would let me. My sincerest hope for you is that you are one day able to balance your determination and forthrightness, to exploit it when you need it and control it when you don’t. That you will be able to enjoy the moments that make up the life you fought so hard to have. And that you will let us all help you, even when you can do it on your own.

You have helped me more than you could understand. I need to thank you, in fact, for teaching me what being a parent really means. For making me understand that its not just about sacrifice, its also about advocacy. And so now I know, in a way that I could only have learned through excruciating experience, that I will spend every minute of my life and beyond fighting for you and your brother. That will colour every choice I make. It’s not conscious, it’s just part of who I am now. Being a fighter is not something you do, its something you are, and I promise to be that for you.