“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in” Haruki Murakami
As a parent of a baby born too soon I was often asked in the early days how we made it through NICU. My reply was always the same – you just did, you had to. New mothers would ask how could I leave my baby each day and colleagues would hide their gasps at the sight of our tiny baby hooked up to an array of breathing apparatus. It was here that I turned to Piglet and Pooh – “How lucky I am to have something that makes saying goodbye so hard.” AA Milne.
Another quote I see used to sum up NICU is “You never know how strong you are, until being strong is the only choice you have”.
It is certainly true that neonatal care tests you to your very limits and that there are few alternative choices; but I don’t remember feeling particularly ‘strong’, in fact often just the opposite. Lost in your emotions you manage – you have to. Thrown into a world that has been turned upside down you hold on through the storm and get through. For being strong was someone much braver and smaller than me – it was the fight in my baby that gave me hope and it was holding onto that hope that kept me strong. It was the kindness of staff that got me through and the parents on the unit who picked me up when I was down.
The sun was shining on the day we left the hospital and I still remember the weight of relief and the sense of ‘it’s over’- those feelings didn’t leave however and very soon I came to realise that the storm had not passed, that the NICU journey was not over. The questions ‘How did you manage in NICU?’ ‘How did you make it through?’ became redundant – you’d made it to this stage because you had to, but I was still battling, still holding on in the aftermath of the storm. The question should have been ‘how are you managing now?’, but there is a mistaken, yet understandable belief that once you’re home the difficult time is behind you.
I like to think of the NICU journey a little bit like the British weather; the storm may settle and the sun may shine, but its course is unpredictable and the scars of its aftermath take their toll. Even on the brightest of days the threat of rain clouds can linger and with four seasons in one day the forecast can change at a moments notice. Memories of the storm last for parents who have lived the neonatal care journey and the weather can remain unsettled for some time to come – Once a NICU parent, always a NICU parent.