What’s in a date? According to the dictionary, a date is “the day of the month or year as specified by a number.” It’s that simple. And yet dates mean so much to so many people. Every day of every year marks something significant in somebody’s life; a birth, a death, a wedding, a break-up, the anniversary of good and bad events that have occurred in a lifetime.
For us, today brings mixed emotions. It would have been almost impossible not to face today with some sadness at the memories of this day last year when we watched our 7-week old daughter slip away from us with the fear that we may not ever get her back. It is the day she became critically ill, and marks the beginning of our journey with Kawasaki Disease; Freya’s Story. It feels somewhat surreal to be sat here today, putting the washing on, clearing up the aftermath of the children’s lunch, normal everyday things that a parent has to get on with. A year ago today our lives were changed forever. Changed in so many ways, some bad some good. How did last year change me for the worse? Well, for one it altered my perspective on this thing we call life. We all believe we have the right to live our lives how we choose, and rarely stop to consider the consequences of the actions that we take. Being faced with the possibility that your child might actually die turns your entire belief system on it’s head. I had never considered my own mortality before then – why would you? You just coast through this life taking it for granted that it is yours for as long as you want it. But there are much stronger forces at work than any of us are able to prepare ourselves for, or protect ourselves against. People get sick. Kids get sick. This world is full of illnesses and diseases that affect everyone else, and we read stories about them in the News or on Social Media, and think “poor them”, but we rarely stop to consider that the trials we see other people facing from a distance may land themselves on our own doorsteps one day.
I had never felt so much anxiety about the brevity and uncertainty of life before the events of last year. Now I find myself living a confused life, where on the one hand I wish to grasp it with everything I have whilst I have it – make memories, move mountains – and on the other hand I face it with a fear of the unknown, and a desire to stop time so that we might be able to let go of that fear, just for one day. Wherever I walk I see beauty in everything, magnified like I’m seeing through the wondrous eyes of a child, but out of the corner of my eye I can always see a shadow lurking and I imagine that the Grim Reaper is sharing every moment with us. I am reminded of that movie, Final Destination; you can’t cheat death, can you?
But, the 31st May is just a date. It doesn’t really matter what the date was, Freya got sick. It doesn’t matter what date we got our diagnosis, Freya had Kawasaki Disease. It doesn’t matter what date they told us her heart was damaged, Freya’s heart suffered. Even so, it is hard not to see these dates as milestones, those first hurdles you have to get over after any loss. And I know I should be grateful that we didn’t have to suffer true loss, but this is still part of a grieving process, and I do grieve for the loss of that perfectly healthy, normal little girl that I was holding in my arms on the 30th May 2015 and all of the 50 days before it. Some would say I am ungrateful, that I should get over it already. I don’t blame them if they haven’t been through something like this. And it isn’t like I don’t want to let it go. Of course I do – that’s why I see a counsellor every week to help me with the trauma of the last year (as well as a few other troublesome things). If anyone thinks that I want to be stuck in this perpetual limbo between sadness and joy, that I get any gratification from feeling tears prick at my eyes every time my youngest daughter shows me just how special she is, is mistaken. I want to be able to move forward, forget the last year, make plans for the wonderful future that I promised myself for my family. But KD doesn’t let you do that. It doesn’t just leave, like a cold, or a sore throat; KD leaves permanent scars, physically and metaphorically.
I will allow myself to feel what I feel on these dates, these first milestones. The day of her diagnosis (12th June) is likely to bring up a lot of the same emotions. Hopefully I will be better prepared and can plan to do something that will change the memory of that day. I had hoped to do something today that would give me a new memory of the 31st May, but the awful weather and the restrictions I place upon Freya’s indoor activities (I don’t want her in an indoor play area, during half term, in chicken pox season!) put a stop to that notion. So instead I have tried to distract myself with the children and the chores. But I sat for a moment and watched the raindrops run down the window, an image that my eyes immediately chose to mimic, and it has left me feeling wretched. Out there new memories are being made and new anniversaries created and the world just keeps on turning. And I keep breathing in and out, and whispering to my heart, “It will get better one day.”