I see you sitting there in that scan room. Cold with fear and the terrible realization that something is wrong, very wrong with your baby’s heart. I see you clinging to each other, neither wanting to voice the terrible thought that fills both your minds — that your child will die. I see your tears, your pain and the little spark of strength that will ignite and grow and keep you going.
I see you, outwardly trying to remain calm as you wait for the first echo. I see the way you hold tightly to each other’s hands. Watching as the cardiologist draws diagrams, trying to understand what exactly is wrong with your child’s heart. I feel your fear as you take in the prospect of multiple surgeries; the odds that your child may not see their 5th birthday. You have no idea how or where you will find the strength to get through the journey that lies ahead of you; you only know you must.
This is the beginning. This is the hardest day you have ever faced and there will be still harder ones ahead. You will get through them. That little spark of hope and faith will lead you to search and question and be willing to take huge steps into the unknown in order to give your child a chance of life. You will pray for miracles and hope that you will be granted them. You will discover that pain and joy can go hand-in-hand — that fear of the future forces you to live in the moment and make the most of it.
You will discover just what a blessing the love and support of family and friends really is. There will be those who do not know what to say, whose silence may come across as hurtful. Forgive them, and move on. Others will surprise you with their kindness; these are the ones who will be there for you when you need them most. You will discover friends you never knew you had, but sadly lose some along the way, too.
When you hear your baby’s first cry, you will feel pure joy, overwhelming and beautiful in its intensity. You will treasure those brief few moments of being able to cuddle your daughter before she goes to have her first surgery. While those hours of her being in surgery will also be full of fear, the joy of those early moments will carry you through.
You will discover that life on the intensive care unit is a rocky roller coaster ride and things can change very quickly. You will spend hours sitting next to your child’s cot, gazing at her. That moment when you can finally cuddle her will be utterly magical, despite your nervousness about all the wires and tubes surrounding her.
The momentous day that you finally get to take her home will be a hugely proud moment. You will wake repeatedly in the night and check on her. There will be many, many moments of worry but you will enjoy being able to have a taste of normal life even if you don’t dare look ahead.
Going back into hospital for future surgeries will always be terrifying. That moment of handing your child over to the surgical team never gets any easier — in all honesty, it will get harder. You will pace hospital corridors, praying fervently that all will go well. I hope you will always feel that huge rush of relief when being told another surgery has gone well.
You will discover a whole community of heart families; friends you make during your time on the ward and others that you encounter through social media. Knowing that there are others who are making similar journeys and walking alongside you will encourage you. There will also be those who are further ahead in their journeys, whose stories will give you hope. One day, your stories will help to give hope and encouragement to others.
Be kind to yourselves and each other. There will be many moments when it all feels too much. It helps to cry sometimes and to acknowledge those fears. There will be many moments of feeling guilty — especially when tiredness and frustration get the better of you. You are human. No one is a perfect parent, no one gets it right all the time — we all have our off days now and then. Don’t be afraid to seek help if it all feels too much to
cope with. Remember too that you are not in control. No amount of worrying about what lies ahead will change it. Trust your instincts, have faith in those caring for your child and don’t be afraid to ask questions if needed.
You will get through this. Your child will bless you in so many ways — her zest for life, her joy, her smiles, her hugs. You will tell her every day how much you love her, never forgetting how lucky you are. The journey is hard, but you know you would travel it all over again to have your child in your arms. And while the future may be scary and unknown, you won’t let the fear of tomorrow rob today of its joy.