After writing about our baby boy and his open heart surgery at 14 weeks old in a previous blog post, it has led me on to a question that we get asked rather frequently in response to our story. I found since Louis was ill that people ask me, "How do you do it? I don't know what I'd do if that happened to me, I couldn't do it." or "I wouldn't cope.", or something of the like.The truth is, I don't think you can ever plan for these sorts of things or for how you're going to react when shit flies your way. I don't ever recall a time prior to having Louis where myself and Jon sat and discussed what we would do if we had a child that suddenly became critically ill. It's just not the sort of thing you talk about really. You excitedly discuss the colour of the nursery, the pram you're going to buy or what sort of car seat will fit nicely in your car. You don't discuss the one in one hundred possibility that your baby may be born with a heart defect, you probably don't even know that one in one hundred babies have a congenital heart defect requiring open heart surgery.. I know I didn't. In your mind, your baby is going to be absolutely perfect.
So, how did we do it? How did we cope? How do we still cope? There are a few reasons actually.
The first is that I had carried this baby for 9 months and I'd loved that little human inside from the day I knew 'it' existed. My baby may have only been the size of a poppy seed or whatever bizarre object it is the books compare it to, but it was my poppy seed and I loved and wanted it so much I would have given anything for it to grow. After a grueling and not very pleasant 9 months, I bought a beautiful, perfect little boy into the world and cared for him until he was 8 weeks old before we knew 'officially' that anything was wrong and I was NEVER going to give up on him because he had a huge hole in his heart. I too felt like I had a hole in my heart where I longed to help him, to take it all away. There was nothing that could fix that hole. The emotional hole gapes open even now, full of guilt, sadness and regret that I didn't do more for him sooner. Ongoing questions that I will never have answered. Was it something I did wrong whilst pregnant? Was I to blame? I coped because I had to because I was his Mum and he needed me. He needed me more than I even knew. Quitting on him just wasn't an option, it didn't even cross my mind that I had a choice in the matter, it was just a given to me that we would fight this whatever way we could. We coped because we just did because there wasn't even a thought in my mind of doing otherwise.
Another big factor in how and why we still cope with whatever crap get's thrown at us is I have the most amazing, supportive husband and family.
I'll start with my husband.
A piece of advice that my Mum gave to me back when I met my husband was, "If he makes you laugh, marry him". That's exactly what I did. From the day I met him this man made me laugh. He makes the kids laugh, he makes everyone we know laugh albeit without even realising it sometimes! Even when your tiny baby requires open heart surgery my husband has the ability to find something to raise a smile or failing that he can come up with the innermost subconscious nob head of a comment where you can laugh 'at' him rather than 'with' him. I remember being admitted to hospital when I was pregnant with our first daughter. Quite late on at night I was sent for an emergency scan, my Mum and Jon accompanied me down to the scanning suite. I recall the on-call sonographer specifically asking "Who are you then, Mum and ......?", to which my baffoon of a partner exclaimed in all seriousness as he barged into the room, "I'm her beloved!". As though 'beloved' was going to be an option on his tick box, I hope that isn't written in my medical records, "Amy attended today with Mum and her beloved!!". Shame!! We weren't married at the time, not that that matters to anyone nowadays, but obviously, boyfriend or partner didn't suffice for him that night. I don't think I've been his "Beloved" since. Thank God. They must have thought we were a right pair of doofuses. We didn't half laugh and my parents still refer to him as my beloved almost 11 years later.
I may not reciprocate his 'beloved' description of our partnership but one thing I do do is rest easily in the comforting knowledge that he is always there by my side. Sometimes whether I want him to be or not he just won't take the hint. I know that if he isn't there he's usually working to support us or running an errand for us (or fetching dairy milk for his chocolate addicted wife from the co-op at 9 o clock at night). We've coped with so much because we work as a team, especially where our children are concerned. We sing from the same hymn sheet as they say in Yorkshire. I'm proud to say that together we are a force to be reckoned with and I know he's got my back. I also know I'm lucky to have the support of my husband and I'm thankful I don't have to battle the downfalls of life alone like others I've met. If your reading this and your doing it on your own, pat yourself on the back, your doing a bloody great job!
In addition to my husband, I'm blessed with the utmost support from both my parents, my siblings and their significant other halves (or beloved's should they prefer). We have been described in the past as 'The Mafia', I presume they refer to us as that by the fact we're a tight-knit supportive community and have each other's backs rather than the fact we all parade around in black suits and shades doing 'dodgy' dealings and carrying guns. May I add here the only gun I own is a nerf gun and that is purely to protect myself from my children during battle and has no connection what so ever with the Mafia, honest!
In all seriousness though, my family have been my rocks. There is always one of them there, and if not one, then two or three, or more. I've never really been alone in any of my struggles and when Louis was sick my Mum couldn't be kept away even if we tried. I remember her calling me when Louis was in theatre to ask if she could come up and wait to see him, but she was already on her way, in fact, she appeared five minutes later from what should have been at least an hour long journey. My sister and brother-in-law who had just returned from their holiday when Louis had his first open heart surgery came straight from the airport to see him in another city, parking her car at one train station and getting the train back to another accidentally forgetting her car! They're all there every step of the way and boy does that help you to cope.
Finally, we are surrounded by Love. So much love. Everywhere we turned we had open arms, offerings of help, support, well wishes and genuine concern. It seemed like the whole of Sheffield and beyond were rooting for our little man to do well. Each friend, each family member all sent their love and kindness our way. Almost all of them anyway. Just like any other shit time in your life you always find out who really cares about you and this was no different. What we did learn though was that a hell of lot more people cared for us than we could have ever imagined and we were totally humbled by the support we received. Their messages carried us through some pretty tough times, like a rainbow on a rainy day.
Whatever you're going through, make sure you laugh. Be sure to find that bit of sunshine on those rainy days. Remember to look for your rainbow. 🌈
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