I'm a member of a few special clubs. I have battled infertility, and I'm the mum of four angel-babies and one living miracle. My beautiful son was born at 26 weeks and five days, weighing 860 grams – and despite all the odds, he survived.
This is a letter to myself and to all the others who have walked the steps of the mother of a baby in NICU.
Today it feels like this will never be over. It feels like every day for the rest of your life will be spent in this room. I just want to tell you that, sooner than you think, the moment will come when you find yourself putting that baby in the car, in total disbelief that this is it, it’s over and you can just go home.
One day there will be no more alarms and monitors. No more bright lights and humidicribs. No more incessant hand washing and nurses. One day it will just be you and your baby, alone, in a silent room, at home, where you belong, and this will all feel like it happened a thousand years ago to someone else.
Take a photo every day. Take the time to embrace every milestone because one day you’ll wish you could explain to this child just how extraordinary, how captivating, their story really is. You’ll wish they understood just what it took for them to be here. So write a note every day, and one day, when you have a moment of peace, you’ll make the scrapbook of a story worth telling.
I know that you look around at the other mums and you feel shy, exhausted and like there is never a good time to chat. I wish you knew that a year from now those women will be some of your closest friends. They will be the only ones who ‘get it’. So smile at them. Look out for one another. Leave a note with your name and number because these women will be in your life forever. Their faces will be etched in your memory for the rest of your life because this journey is something you need to share. This load is too great to carry alone and no one will ever understand it the way they do.
I know that right now expressing breastmilk is hard and sometimes you don’t know why you bother. In a few months from now, you’ll sit in a room alone with this creature and in the dull glow of a night light, he will lean his head back, look up at you and smile as if to say “thanks Mum”. In that one moment, every minute spent listening to the dreadful squishing of that pump, every mastitis ache and every millilitre you made will have been worth it.
I know there are moments where you feel like you just don’t want to go to the hospital today – sometimes you don’t want to go ever again. I know you feel like that baby isn’t really yours anyway. It’s okay. But one day you will feel it. You will know what all those other ‘lucky’ mothers talk about. It will take you longer than them, but it will happen and it will be worth it.
I know there will be moments on this journey when you can’t bear to watch, when you can’t stand to see the pain and the things they have to do. I won’t tell you it’s okay, because it’s not. There are so many things about this that are unfair, and this one is the biggest. But you need to remember that this is the only way. Without this there won’t be anything to come after. These are all the things that will make joy possible. So please remember that you aren’t a bad mum for having to wait outside, or for being upset. You feel like this because you’re a good mum and you’re fighting the instinct that tells you to grab that baby and run.
I know sometimes you find yourself in tears for no real reason. Don’t be afraid to cry. Even if you try hard to avoid it, your grief is there and it is real. It’s okay to be heartbroken. This isn’t how it was supposed to be. You were ripped off. You miss the tummy kicks because they aren’t supposed to be over yet, and even when they say it could be worse that doesn’t negate how bad it actually is. So it’s okay to grieve the loss of what you don’t get to have. You won’t ever get it back and you won’t ever be able to change it. So, stop. Cry. Because this is your reality now and it’s okay to feel sad. It’s okay to be angry. Embrace it. Right now it feels like it could swallow you alive, but it won’t. It will make you a stronger, different, but better version of you. This experience will change the person you are. It will make you forever grateful and eternally optimistic and one day you will understand that these are qualities that you were lucky enough to have earned the hard way.
One day you will look back on this and you will know that your baby isn’t like the other kids. Your baby is a force to be reckoned with: resilient, a fighter, a survivor. Your baby survived the unthinkable, the unfathomable. Your baby is a superhero. But I want you to remember that you are too. Surviving this will make you into a hero in your own right.
I want you to know all this because one day you’ll be at the supermarket, chatting about the sweet little thing who’s sitting in your trolley smiling. When they ask ‘how old’ and you answer and for the very first time the conversation doesn’t lead to talk of prematurity, birth weights, gestational ages and NICUs, you’ll find yourself standing there with a silent grin. You’ll be smiling because you know a secret and those around you have no idea. You’ll know that you’re in the presence of a wonder of modern science and medicine. You’ll know that you are in the presence of a superhero. You will know that this isn’t just any child; this is a living miracle.
So breathe. Feel. Embrace and know that these ‘worst days’ of your life will make every single one of the ‘good days’ greater.
Bess is a member of the National Premmie Foundation. Learn more about the organisation and get in touch with other mums of prems on their website or Facebook page. You can also follow them on Twitter.