Today I accepted that I might need some support to move on from this thing. I don’t mean forget, I mean how could I ever forget what we’ve been through? And I would never want to shut KD out of my life completely, because I feel like I can be of use somehow in raising awareness of this elusive disease.  But I do need to work out how to process it all.

I have spent the last 3 months or so immersed in the world of Kawasaki Disease; at least the world that I can access through medical journals and the Internet, tirelessly reading, learning and challenging. And that’s all great, but it only serves to distract me from the fact that I am still a mother, and I’m a mother with a fracture in my heart.

I am surviving on very little sleep. I stay up until the early hours of the morning, sometimes researching, other times just thinking. And thinking. And thinking.  I stare at photographs of Freya and I feel grief, and then I feel guilt because she’s still here isn’t she. I’m not sure how long it takes for sleep to take me when I finally do go to bed, it feels like I am laid awake all night. I hear every sound that Freya makes, from the familiar sound of her breathing or when she does that little grunt under her breath, to all the unfamiliar sounds that strike fear into my very soul; what was that? Did something happen??  And then there’s the silence, when I lie awake holding my breath, waiting for her to make a sound, any sound, to reassure me that she’s still ok. For those seconds I lie frozen, wanting to reach across and touch her to be sure, but too afraid. It’s irrational I know. The risks she faced at the beginning of this journey are no longer a source of constant worry. I know every new mum experiences degrees  of worry about losing their child. I don’t have the monopoly on those fears. But I feel sick with anxiety from the thought of losing her.  Thoughts are not facts, Joanne.

I think on the whole I have handled this thing pretty well. In all honesty I’m surprised I haven’t cracked up completely. I think there must be a strength inside all of us that we never find out until we are faced with something big.  But you can’t be strong always. I thought that by writing my blog I would exorcise a few ghosts, but it doesn’t seem to be working as I had expected.  Maybe because the blog doesn’t answer me, so my words are left hanging in the air like a dense fog.

Most days I’m good. I’m not a neurotic parent, watching over Freya 24/7.  I don’t put her up in her room for naps like I did with my other children, allowing her to fall asleep on her playmat when she’s tired herself out. To be fair, though, she’s so content she can be playing one minute and sleeping the next. But I do take her up to bed in the evening, and she sleeps in her cot in our room from 6pm until 7am the following morning, later if I let her.  Of course either me or my husband tiptoe upstairs at regular intervals throughout the evening, but that’s normal. I get on with the housework, or I hang up the rubber gloves and play; depends how clingy Freya is feeling at the time. We get out and about, I enjoy little trips out with her.  We went to York on the train the other day to see my niece who has just started at University there. I am my most content when I’m mooching about, pushing my little Peanut in her pram. But every now and again, more frequently these days, I am aware of a dark shadow following me around and I am transported back in time to those weeks in the hospital. Every day I relive a part of our journey and the tears fall silently down my cheeks, sometimes completely unprompted, other times triggered by a tender moment with Freya, a conversation, something on TV.  Tonight I watched a programme where a 3-month old baby was put to sleep for surgery, and the tears appeared within a nano-second. It’s still so raw.

I thought I could handle it alone. Of course I was going to be feeling like I do after this ordeal. But I thought that every appointment that brought good news would take the pain away. But it doesn’t and I so want to celebrate Freya’s triumphs over Kawasaki Disease.  I need to package the last few months up into an easily accessible box and store it away in the corner of my mind where the unpleasant boyfriends and school bullies live. But right now I’m on a ride that I can’t get off. I have to find some peace with KD; need to accept that no amount of hating this disease and the uncertainty and lack of concrete information that goes with it is going to change the fact that it bulldozed its way into our perfect little life and left its mark on my precious girl.

Kawasaki and I are not friends, nor will we ever be. All I can hope is that over the coming weeks, with whatever avenue I choose to help me get out of this kawahell, I can focus more and more on a bright future than on the dark and dismal past of the last few months. Here’s to a day when I might look at Freya without being haunted by memories I wish I could forget.