The other day I awoke to a Facebook memory; a picture of you from the same day a year ago. You were 4 days old, we were home, and you were in your bouncy chair staring at me. At first I smiled at the memory; that little face full of wonder at a new world that you could barely see through eyes so new. But then, like a lengthening shadow, sadness crept in.
Those days we had with you were so few before Kawasaki Disease pushed its way into our lives and stole you from us. The you we knew. The you I gave birth to. The you that wasn’t broken. I don’t think I will ever learn how to come to terms with what this disease did to you. You were born healthy, and perfect and pure. For 7 weeks we got to know each other at home, barely going out, because I wanted to be sure I gave myself the chance to drink you in. We cuddled on the sofa for hours, and I fed you from my breast because I wanted you to have the best start in this world. I know now how important those moments were, and I am thankful that I cherished you and didn’t feel any pressure to share you with the outside. It’s like I knew.
But I didn’t know. I had no idea that things would change for you, for us, overnight. You were so perfect, so well. We had no concerns at all about your development or your health. You were nothing short of perfection, and I was smitten from the moment I looked down at you from my position on that labour bed.
I guess these memories are going to act as triggers for a while. Seven weeks of memories of the you we had will be replaced by memories of the worst days of my life. At least I came away from Facebook for a while just before you became sick; that I can be thankful for. But then, I don’t need Facebook memories to remind me of those days; those days are forever etched on my mind. I can’t accept the cruelty of it all. To have struggled so much with the concept of finding myself pregnant again but come through it having battled some old demons and actually looking forward to this new adventure, only to see it come crashing down around my feet was cruel indeed. We didn’t deserve this. You didn’t.
I try to tell myself that I should be thankful you are here with us. Things could have been very different. In that first week in the hospital I was convinced I would be going home without you, you were so sick. And when they told us that your little heart was damaged I prepared myself for the worst. The psychologist told me that what I was experiencing was anticipatory grief; I had been presented with the possibility that you might be taken from us, and my mind had already begun to process that notion. I could see a certain photograph of you on an easel at the top of a church aisle; that photograph haunts me still, and was the catalyst for my thoughts and feelings on those eyes of yours. I told myself that if I accepted that this disease would kill you, that I might not take you for granted for the time that you are here. I guess, even though it’s a little morbid, it’s not a bad way of thinking about it. I mean, if the worst is that you have a life full of wonder until you are 90 then we won’t have lost anything will we? It’s a good rule to live by, and there are hundreds of cliches I could quote about living life to the full that would fit right in here. We were lucky that your heart began to show signs of improvement, and that we haven’t had to live with that feeling forever – others do.
Using the word ‘lucky’ to describe you makes me flinch, and the bully in my head says “Watch it! You’re not out of the woods yet! Don’t be counting those chickens already…!”
I hate Kawasaki Disease. I hate it for stealing my memories and turning them into reasons to be sad and full of regret. I hate that I can’t look at a picture of my tiny baby without feeling sorrow for the short time we had before our lives became filled with fear and drama. I hate that I can’t hold another baby without feeling like I’ve missed out on so much. I held you for seven weeks, and it would be weeks before I could properly hold you again. I could have held you, but your temperature soared relentlessly for a fortnight and I was scared that I would make you even hotter than you already were. And I hated the tubes and the wires and the needles; the slightest movement would set the monitors off screaming and the nurses running. I hated the look in your eyes; you were too young to be afraid. I wish I knew how you felt when you were lying there in that cot with a vacant stare.
I hate it for making me look at the world through different eyes. I am wary of the world now. I know first hand that it has the power to take away everything that you love and I approach every day with caution, even when I try to find joy. Sometimes I think I have seen something out of the corner of my eye. It’s like I see Death waiting in the shadows. Kawasaki Disease sucks.
75% of children who have this disease will walk away without any heart complications. They are the lucky ones, but that doesn’t take away the terror of the experience for the child or the parent. But why did you have to be one of the 25%? Why couldn’t it have just left your tiny heart alone? Could it have been prevented? The doctors ruled out their suspicion that it could be KD on day 9, and yet it was lurking and continued to do it’s damage whilst their backs were turned. 4 days later it became clear that it had been Kawasaki Disease all along. I wonder how the doctors felt when the echo showed them that awful truth…
None of that matters now, I guess. It’s done isn’t it, and there is nothing we can do to change it. I have to learn to accept that we live in a world where uncertainty is the only thing that is certain. Death and taxes. This world is full of beauty, but it is also home to a lot of hurt. And as if there wasn’t already enough sadness to deal with in this life, there are people who see fit to cause others pain. Why do people do that? It is beyond me.
Anyway, enough of this morose talk. What ever will you think of your mother when you read this stuff?! It’s hard though Peanut, it really is. The emotions I have to deal with every time I look at you are a bit too big for me sometimes; sadness, regret, guilt, anger, fear…love. I just need to get myself back on track with our plans to turn this whole sorry mess into something positive. You’ve raised a lot of money – £7,000 in just one month of fundraising for one event! And you’ve even appeared on ITV News (http://www.itv.com/news/calendar/2016-04-13/mothers-plea-for-early-diagnosis-of-rare-kawasaki-disease/). We will do what we can together to raise awareness of the disease, so that the next time a child presents the symptoms, their parent might just ask the question, “You don’t think it could be Kawasaki Disease do you?”