Two years. Don’t they go by in a blink. It is hard to believe that two whole years have passed since that day in May 2015 that we will never forget. Harder to believe that we are living a life more ‘normal’ than we ever could have imagined possible back then. Back then it felt as though the bottom had fallen out of my world, and I was shrouded by a blackness that I thought would envelop me for ever. Today, it’s mostly sunny with a tiny chance of rain. Today life is about as normal as it is ever going to get. The last two years have been two of the most extraordinary of my entire life. And you, my dearest Freya, my little “Peanut”, were the single most extraordinary thing of all. Meeting you was like walking into the sun, and in spite of everything you went through, we went through, the clouds were never allowed to cast too large a shadow because your light burned through them like a flame through silk.
The past few weeks have allowed a melancholy feeling to settle around my shoulders like a familiar, almost comfortable wrap; two hands that placed themselves upon my shoulders, whilst a low voice whispered, “Remember me?” It was a rhetorical question, of course I remember her. She is sorrow, and fear, and dread, and grief. I didn’t consciously awaken her, but the date was drawing near and I guess my subconscious had figured it out before I did. I had been cleaning out the kitchen cupboards, like you do every now and again when you realise the dust is beginning to settle on the shelves! I emptied the bottom shelf of one of the cupboards – that’s where we keep all the everyday medicines. It’s where we keep your medicine, in a little pink sandwich box with Barbie on the lid. I take that box out of that cupboard every single day to prepare your aspirin. Yet on this day, when I placed the box back in the cupboard I realised that it had gone back in a different way to normal. I realised because there staring back at me, was the hospital label – we had used that box to store your medicines when you were in the Children’s Hospital. And there I was, right back in that cubicle behind the nurse’s station, and you were by my side, in your cot, all wires and bandages and looking like someone else’s baby. Your Auntie popped in just at that moment and for a while I was somewhere else. When she snapped me out of it, tears came out of nowhere and I shrugged it off as ‘a moment’. What it was, was a flashback. The first I have had since I was successfully treated for PTSD last year. Luckily it was short-lived, and I was nothing more than a little shaken afterwards. I’ve not had one since, though the sound of that musical seahorse going off the other day threatened to bring another. Instead I considered how the fact that you were playing with it was a good sign that you do not remember like I do. That is indeed a blessing.
Anyway, enough of that miserable talk! I haven’t written to you in so long, and I have so much to tell you! I want to show you how far we’ve come in the last two years, and let you know how remarkable your life has been so far. On the 28th May last year, I wrote a blog which I gave the rather despondent title of “Stealing Joy”. You see, that is how I felt back then. Kawasaki Disease had come into our lives and stolen everything that was meant to be joyful away from us. Here is some of what I wrote:
“I want to allow myself to believe all the motivational clichés about things happening for a reason, about how far we have come, about how lucky we are to have Freya here in our lives and how we should count our blessings. But today that all feels like bullshit. Today I find myself mourning for normal…Today marks the anniversary of the last day we knew what normal was. I wish that day were Groundhog Day and we could live it over and over and over so that the 31st May would never come.
I don’t want to wallow in the misery of the last year, believe me. I want to be thankful for what we have, and cherish every moment. I want to believe that this happened to us for a reason, that we will all be better people for it, that I will look back on all this one day and laugh at how wrapped up I was. I will allow that to come…”
And what I want to tell you now, sweetheart, is that it did come. Normal came. And with it came joy.
April 2016 marked the end of my maternity leave, but I wasn’t ready to return to work for many reasons. For one, there were still issues with your immunity, and the risks connected to you being exposed to chicken pox were too great for me to consider placing you in any kind of childcare. Heart-wise things were pretty unstable, with lots of unknowns, and much deliberation about whether we should allow the hospital to plough ahead with a procedure that I would prefer to avoid. At that time the uncertainty filled me with dread and I was struggling to deal with what life had thrown at us. I was about to receive treatment for PTSD (post-traumatic stress disorder), I had hit a very low point in my life where I felt let down by many people in it, and life itself. I felt very alone, except for you. You were the only one who could make me smile. At that time I was sliding down walls in hospital corridors when an anxiety attack took hold, or crying alone in the early hours of the morning because there was nobody to share my grief or fear with. When my employer agreed to allow me to take a career break to get back the time we lost, it was like I had been given a new beginning. I was paired with the most amazing counsellor who helped me deal with what happened to you, and then some. And I began to believe in life again.
Don’t get me wrong, I don’t think I will ever stop being afraid of what lies around the corner. And I am more afraid of death now than I ever was before. I think about it a lot, almost daily. Not in a macabre way, just a reminder that tomorrow isn’t promised. Sometimes I feel deep sadness at the thought that I might not get to meet your children, my grandchildren. I just have to try to stay young, so I might get that chance. I feel a dreadful sorrow when I think about my own mortality. I am so afraid to leave here, leave this place and my family. I cannot bear the thought of being parted from it. But then I guess it is our fear of death that keeps us alive. If there is one thing I learned from my counselling it is this – that no amount of worrying about the future is going to change it. I have learned to live in the moment (mostly). Sometimes the resolve dissolves and I find myself fearful, especially as the seasons change and we head towards the Autumn, and the angiogram that I have such an issue with. But mostly, we live in the now. And since I went back to work full-time in April this year, there really isn’t much time to think any further forward than that!
When I was approaching my return to work, I became very sad. The thought of not spending every day with you made my heart-break. I wasn’t worried for you – I knew you would adapt and that it was time for you to experience new things and to make new friends. I was worried for me though. I honestly did not know how I was going to get through it. We ended the two-year break with a fantastic holiday in Mexico. We were finally able to fly, having managed to get you caught up on all the routine vaccinations you missed because you were so young when you got sick. I had some contemplative moments on that holiday – each day that passed took me another day closer to leaving you. But I told myself that rather than think of what I was losing, I should think of what I have gained. I was given the gift of time; another year to spend with you before I had to return to a ‘normal’ I never thought we would see. A year to fill with a joy capable of erasing a year of misery. And I have to tell you, that despite everything, these last two years with you have been extraordinary, because of who you are, and what you have achieved, and what you have done for me. I am a better person because of you.
And you? Well, what about you?! Let me tell you what you have seen in this last year. You’ve seen animals and sea-life, you’ve swam in pools and an ocean. You’ve visited the home of a literary great, and learned where your name came from, my Freya Ellis Belle. You have made firm friends. You’ve danced and bounced, and you know your good toes from your naughty toes (thank you Mrs Riley!). You have inspired a donation of £75,000 from a stranger across the other side of the world, and raised £8,000 from your 1st birthday party. You’ve sat upon the knee of world leading Kawasaki Disease specialist, Professor Jane Burns. You’ve been to Christmas markets, and Summer Fayres. You were awarded special recognition for Triumph Over Adversity at the Doncaster Free Press Awards. You have raised awareness of this disease, with tens of thousands of people having seen your face. Last month over 5,000 people viewed a video of you on Facebook, raising even more awareness. You have been in Newspapers and on ITV News. You inspired me to give blood, and register for stem cell donation. And you inspired me to run so that just this weekend I raised nearly £3,000 running 10km in the Great Manchester Run! You, or Kawasaki Disease, or a combination of the two have made me stronger, wiser, more compassionate, kinder, more alive than I ever was before, and for that I am thankful.
On the train home from Manchester this weekend, I opened my finisher’s pack to have a look at what was inside. My runner’s medal, a sick bag (I’ll tell you about that one day), some leaflets, a bar of chocolate. I look at the wrapper to see what kind of chocolate it was and my eye was drawn to the best before date:
Best before 31st May.
Perhaps you were best before then. You were best in terms of being undamaged, your little heart was in tact and you were perfect. But actually, you are so much bigger than the 7 weeks before you became sick. You are more than Kawasaki Disease, more than a broken heart. And I am more than a mum. I am your mum, and that makes me a very lucky woman indeed. I became my best after you.