Freya’s Story (23)

I haven’t written to you since the 17th July, but I have been very busy since then settling into our life back at home.  I’ve also started to capture your story in a blog (this blog) to raise awareness of this horrible disease that you have.  Or had?  Hmm, I guess you no longer have Kawasaki Disease because all the symptoms of that have been dealt with. What you have now is a coronary complication that we hope will normalise over time so that we can all put this awful ordeal behind us.  I just wish someone had a magic wand which could zap it all away.  I hate now knowing what is going on inside your body, not knowing what your future holds.  And yes, I know that no-one has a crystal ball and we cannot know what is around the corner for any one of us, but that’s just accepted isn’t it.  It’s different when you know you’re broken.  You could be driving a car down the road when a wheel falls off.  That would be unlucky.  But if you knew that the wheel nuts were loose when you set off, the likelihood of the wheel falling off would be higher wouldn’t it.  I’m not anxious about driving a car, but I sure as hell would be if I knew the wheel nuts were loose!  And so I’m not generally anxious about life and mortality, but I am anxious about you.

We’ve got another 14 sleeps before your next cardiology follow up.  14 sleeps!  That’s 14 more nights of me lying awake until the wee hours of the morning to minimise the time that I am not fully aware of you. I lie awake listening for your breathing, but you sleep so peacefully that I struggle to hear you.  Especially when you are competing with the noises outside the window, or Daddy’s snoring.  I lay there for ages willing you to make a sound, any sound.  I’ll just give it one more minute and then I’ll check.  Except I’m often too scared to check.  So I wait a little longer, holding my breath, and mostly my ears are greeted with a rustle from your sheets, or a grunt as you fidget momentarily and I can breathe again.

For some time now you have been sleeping through the night.  When you were in the hospital you automatically fell into a 4-hourly feeding routine in tandem with the nurses’ observations.  And after a while, you stopped waking in the night for a feed.  The nurses would come into your room at 2am and deftly unbutton your sleep suit to attach the probe to your little foot to measure your oxygen saturation levels and heart rate.  They would take your blood pressure and your temperature.  Sometimes they would administer intravenous drugs through a cannula.  Then they would button you back up, replace the covers, and tiptoe out of the room.  Some would glide in and out of the room and undertake your observations so quietly that even I didn’t wake.  Others would whisper reassuringly to you to as they went about their business.  One nurse would call you ‘sausage’ (she was really sweet), another would stroke your head.  All this, and you hardly ever stirred princess.  I suppose if you can sleep through all of that, in that environment, then I shouldn’t be surprised that you sleep so well now you are home.

You enter what is affectionately known as the witching hour at around 5pm every day without fail!  You are not particularly difficult to deal with, mainly whimpering and whining.  If you could speak I’m sure you would be saying “Why am I not in the bath? Why do I not have my pyjamas on yet?  Where is my bedtime bottle??”  And it really is as simple as that.  It’s like a magic formula to unlock the gift of sleep and once we have carried out these simple steps you are tucked up in bed by 6pm and do not wake until around 8am the following morning!  I couldn’t ask for more than that.  Except for the fact that the more hours you sleep, the more I worry and wait anxiously for you to wake in the morning and I can breathe a sigh of relief that you made it to another day.

I am not going to lie to you sweetheart, dealing with this thing is hard.  It’s damned hard.  And it is made even harder by the fact that I feel like I am dealing with this on my own.  Now that we are home, and your beautiful smiling face can be seen across Facebook once again, I think everyone just assumes that we’re ok.  That I’m ok.  But I’m not, not at all.  I have no idea what I should think or feel from one day to the next.  Whenever I find myself feeling happy with you, there’s a nagging voice telling me not to count my chickens.  My experience in the hospital taking care of you has taught me to expect very little, because every time I allowed myself to be hopeful this disease would come along and burst my bubble.  People say I am a ‘neghead’.  I’m not.  I’m a realist and I don’t bury my head in the sands of hope and ignorance just because I don’t want to believe something bad could happen.  And I’m protecting myself I guess.  Because if I really start to believe that you could completely beat this thing, I will stop worrying.  And if I stop worrying, I might become complacent.  I might decide that a morning in front of Jeremy Kyle once in a while isn’t such a bad thing, and before you know it days, weeks, months will have passed with little or no event, and those memories I promised we would make would be nothing more than empty words.

During my life I’ve been emotional, depressed at times (like when I had your older sister and I came apart at the seams).  I have never felt anxiety before, but I think this is what I am feeling now, and it is ever present.  I often feel like I have to remind myself to breathe, like I am holding my breath just waiting for something to happen.  I have butterflies in my stomach constantly.  Another mum in my position recently said it feels like our hearts are outside of our bodies.  Somehow that phrase summed it up perfectly for me.  You are my heart, and when I am not with you I feel the empty space all the more.  We are a perfect fit, you and I.  When we are together, the empty space is filled with all the love that radiates from you; yours is not the only heart that needs mending sweetie.

But enough of all that!  We will get through this you and I.  Each day we will get a little stronger; you physically and me emotionally. And we mustn’t forget the impact that this had on those closest to us either.  I may be wrapped up in this little bubble with you, but we are not sole survivors of this episode.

I made a promise that I would make this life with you count, whether it be for 50 days or 50 years, and when I was in the hospital I mentioned to your Auntie that I was writing a ‘Bucket List’ for you.  She didn’t like me using the term, so I agreed I would change it.  So the ‘B’ became an ‘F’ and the new list was born (I’m hoping by the time you read this you are either too young to work that out, or old enough for it not to matter!) But I don’t mean for the list to include big bang gestures, I mean to enjoy the simple things with you.  To not care about the growing ironing pile when the sun is shining and I could be out enjoying  life with you.  It’s stuff that I guess most parents take for granted, but with Eliza and Fin I always felt like I had to be Superwoman.  I don’t want to waste a moment of your life concerning myself with things of no importance.  Carpe Diem!   Which is what we are doing tomorrow.  We have something exciting planned, but for now it’s a surprise so you will just have to wait and see.

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