Letter to the mama of a broken-hearted baby
You’ve just been told your baby has a broken heart. Your whole world has fallen to pieces and you feel like your own heart is in smithereens, you feel physical pain in your own chest and a sinking, dreaded feeling like never before. Right now you feel as though your world has ended, you will spend every waking minute from here on worrying about the ‘what ifs'’ and you will come so close to giving up, but know this: whatever life throws at you, you WILL get through this, life will just be very different from here on.
You should be at home, in that newborn euphoria, cuddling her, feeding her, getting to know her, recovering… but instead here you are in intensive care, sat crying as you watch her motionless, desperate to see her eyes open, to grasp your finger, to hold her, to change her nappy, to wash her clothes. Your time will come and when it does every normal thing will feel like a miraculous event. It will be magical.
Right now your mind is filled with a thousand questions, you can’t sleep a wink for thinking of all possible outcomes. From here on your mind will never rest, you will never stop questioning, wondering, hoping and praying. Her future is very uncertain, you hate that. You are told her condition is life limiting and you are crushed to your core. You are told there is a chance she won’t make it through her surgery and if she does she will be lucky to make it through her childhood and if she does... it’s a life filled with multiple open heart surgeries, catheter procedures, endless blood tests, heart scans, hospital appointments, medications and restrictions. It’s not the life you imagined for her, for you, for her brother, for the rest of the family and you will grieve a lot. But soon, this will become your ‘new normal’ and you will take comfort from knowing that she won’t know any different and neither will your son. You will make the right decisions for them, for you all.
Soon the days pre-CHD will become hazy. You’ll not have much time to think about or miss those days yet at the same time you will never want to go back to a time without her; you cannot imagine not seeing her smile, so don’t wish your time away, instead learn to cherish her, to cherish time, to cherish every single minuscule moment as a family of 4 and as crazy as this sounds, you’ll start to realise you’re lucky. You are fortunate. You are not to be pitied, but envied as you have been given a gift. A gift which has given you a totally different perspective on life; a different perspective of having children. You will learn to appreciate every, single, little thing; the things other mothers take for granted; the natural rise and fall of your children’s chests, the beating of their hearts, the warmth of their skin, the weight of their bodies in your arms. You’ll be so very grateful for all these seemingly normal things because these are the things you once thought you’d never see or feel again.
I know right now you feel like a mere shadow of your former self. Your light that once lit up a room has gone out but don’t worry because that light isn’t gone, it’s just been passed from you to her and when she gets a bit better you’ll start to see it. She needs your light and you need her to have it because she will brighten your every day, she will dazzle everyone she meets, she will light up the darkness that engulfs you…. and my goodness how she will shine!!
You will live in constant fear of what’s to come.... but you will learn to smile through it. You will find a way to laugh through the tears, to embrace the craziness of your newfound life and most of all you will learn to love more than you ever thought possible; each other.... your bubble and the people that surround you.
You’re strong willed and stubborn (she is her mother’s daughter for sure!) and I know you don’t like to take advice but hear me out... please!! SLOW DOWN! You have your own heart and health to look after too. Your own health will suffer as you sacrifice your all but remember your children and your husband need you.... so looking after them means looking after you too, it’s not selfish, it's sensible.
Take time for each other. Your husband has always been your rock but he is about to become your mountain! You’ll both find this journey so incredibly hard but you will be so grateful that you’re in this together. Don’t be afraid to talk to each other for fear of upsetting each other, don't be afraid to cry and admit that you’re struggling. Take the time to remind each other how much you mean to each other, aside from being heart parents, you’re a couple, a husband and wife. You are also individuals… make time for each other and give each other time out, it’s needed.
Be present. Cry. But never forget to smile and LOVE. Love like there is no tomorrow. Live the best version of your life that you can and have no regrets. Don’t wait for second chances, don’t put things off, for you will never know what tomorrow will bring. Appreciate each moment, each milestone, celebrate victories no matter how big or small. And last but not least no matter how busy you are, no matter how tired you feel, no matter how much you fear waking her up always, ALWAYS kiss her goodnight.... be grateful for today and be hopeful for tomorrow. Xx