A Routine Fear

My dearest Freya,

It’s been a long time since I’ve written to you. Life has moved along steadily since those dark days of 2015, and there’s not so much time for blogging these days. And in all honesty, the fact that there’s not so much to blog about can only be a good thing. No news is good news, right?

So why am I writing to you today? I’ll tell you. I’m writing today because if I don’t say these things out loud they are going to continue to consume me as they have for the last 2 years. Since the A word was discussed. Angiogram. The word itself has become so huge to me now that I’ve lost all perspective for what is considered a routine procedure. Routine for the cardiologists who perform them day in and day out, month after month, year after year. But not routine for you! This was not part of our plan for you.

But, we’re here. And despite being cancelled twice already, it is looking pretty likely that at 6:30 tomorrow morning we will be waking you to make the drive to the hospital and allow the wheels to roll.

I’m sure many would think me over-dramatic. Many have been through much worse. But this is an invasive procedure, and it involves your precious heart, so I am more than a little terrified. And whilst I promise you that I am doing my very best to be hopeful and think positively, I will never be able to shake the fear I have of this particular procedure. The elephant in the room at every appointment with your consultant for the last 2 years. The one we fought against, advocating for you to grow stronger before they put you through it. See, it’s pretty standard for an angiogram to take place one year post a KD diagnosis, but with you only being 7 weeks old when you were struck by Kawasaki Disease, at a year post diagnosis you were still just so little.

I feel like I need to offload some of my fears here so that I can start to move forward from them. I did wonder if committing them to the page would somehow allow the fears an unnecessary validity, and make things worse. What I’m hoping is that I can share just how I feel about this procedure so that when we come out the other side of this I can truly appreciate how unnecessary my fears were and learn that fear is not truth. Oh I hope I’ve got this one right.

Of course I’m afraid of the procedure itself. It is routine, yet it is still invasive and it is not without its risks. But I’m afraid of so much more than that.

I’m afraid of the hospital. It was there that your disease was finally silenced, but it was there that we were prepared for the very worst we could have ever imagined. “Are you aware of the risks, Mrs McBride?” And I replied that I was and started to reel off those risks – clot, stenosis, heart attack…. “Shall we go and have a chat?” Never good when your child’s Cardiologist invites you to talk away from the ward. A conversation I will never forget, where behind a closed door I would hear the words, ‘rupture’ and ‘nothing we could do’. Where I first heard that their greatest fear for you at that time was one that would see me leave that hospital alone.

I’m afraid of the general anaesthetic. I watched you go to sleep when you had to have a bone marrow aspiration before they reached the diagnosis. I couldn’t help thinking that this was how it would feel to watch you die. I’m sorry, I know it’s morbid, but I’m just trying to be honest with you about my feelings. Honest with myself. I didn’t think it was likely I would ever have to go through that with you again. But here we are, and tomorrow I will be there (if they let me) to watch you go to sleep before I hand you over to the care of the Doctors and wait the agonising wait for the call to bring us back to you. I dread the moment, but I know I have to be the last person you see before you close your eyes and I need you to know that I was there by your side for as long as I was permitted.

I’ll admit I have Googled the procedure many times and that means that I am fully aware of the risks, however small those risks may be. Of course I’m afraid of those. I’m afraid of all of those. Every single one.

But most of all I am afraid of my dreams. Because I have seen this played over like a video in my mind since it became a ‘thing’ for us. I have had many nightmares where the doctors bring me the worst news of the worst possible risk outcome. Irrational, maybe. But those dreams have been the kind that are so real you question whether you were really dreaming for a moment. You see, I’ve felt the grief. I know I haven’t lost you, but I’ve felt many times as though I had. So there it is, I’ve said it. My greatest fear is that my dreams, nightmares, become the reality. And that is why I am so reluctant to accept this procedure as a necessary evil. Because I am absolutely terrified of what those dreams showed me – not as visions of a madwoman, but as nightmares playing on an anxious mind.

I felt strongly this evening, on the eve of the appointment, that I let those fears fall onto this page. Fear, I acknowledge you. It is ok to be afraid. I am afraid because the one thing I fear the most in this life of mine is losing you, little Freya. The fear is what shows me how much you mean to me and how much you are worth fighting for. So let’s kick Kawasaki’s butt tomorrow, sweetheart! Let’s see if that message I wrote to a God I’m not sure I believe in, comes true. Prove them wrong!

Have courage always, Peanut xx

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A Bad Dream

The other night, I had a dream that I had not retained until I saw a patch of ‘beach’ by the side of the Albert Dock in Liverpool where I was visiting with family.  I had not given the dream a second thought until I saw the dark brown, muddy stretch below me, and then the memory of the dream hit me like a punch in the gut.

In the dream I was driving my car, a Volkswagen Tiguan 4×4, along a country lane, parallel to an expanse of water.  On the other side of the water I remember seeing some people that I know.  One was my best friend; she was waiting for me to arrive.  The car was full, although I cannot remember who all of the passengers were.  As I passed round a corner at the foot of a hill, I spotted my friend and also saw there was patch of beach by the side of the road.  It was almost like a lay-by, and seemed like a pretty good place to stop and park up.  I drove the car onto the patch of what had looked like sand, but as soon as the four wheels of my car touched down the ground gave way beneath us and the car began to sink rapidly.  

I don’t remember exactly what happened over the next few minutes, but I do remember rushing into action to get the passengers out of the car before it was too late. One by one I pulled them from the car and got them to the side of the road.  I freed the last person, and lay back on the roadside, wet and exhausted, but filled with relief that I had managed to get us all out.  I watched the car disappear beneath the surface of the water, and then a wave of sickness came over me.  Freya was still strapped into her car seat…

And that is all I can remember.  That, and the total feeling of wretchedness as the realisation hit me that I had let my little girl slip away from me.  Even as I recount the dream here on these pages, I cannot stop the tears.  The knots in my stomach, and the heat of bile rising to my throat return to me, almost as real as the dream itself.  What does it mean?

Having shown a particular interest in dreams over the years, I reckon I could hazard a pretty good guess at the meaning of this one.  Or meanings; I think there are a few things going on, that I can interpret even just from this snippet that remains with me.

I am scared of losing Freya.  That’s an obvious one if you’ve followed Freya’s Story.  Not just the kind of fear we all have for our children and our futures though.  A nail-biting, sleep-stealing, catastrophic-thinking kind of fear.  It’s a kind of fear that I reserve just for Freya, because I know that she stared down Death and beat him, a defeat that has left me looking over my shoulder ever since.  Have you ever seen the movie, Final Destination (and 2, and 3, and…..)?  The idea that you can’t cheat Death is one that occupies my thoughts a lot.  Booking our first holiday abroad with Freya should have filled me with excitement, but I have developed anxiety about the flight.  11 hours.  Plenty of time for something to go terribly wrong.  My husband says that the length of the flight is irrelevant, that most problems occur on take-off or landing, but whilst that might be true of an incident, that logic doesn’t hold up for all scenarios. Like a child becoming sick on the plane, for example.  I just have to keep trying to focus on the holiday, and the wonderful time that we will have before I return to work after a 2-year career break.  And that brings me to my next theory.

I am losing Freya.  Not completely, I know.  But when I return to work I will be losing one of my favourite pastimes – spending time with my lovely little girl.  She’s the best company! She makes me smile and laugh, and she makes my heart feel full to bursting.  I can almost hear the sanctimommies telling me that I should be grateful that I have my daughter, that I shouldn’t be so insensitive to others who are less fortunate.  But you know what? I am grateful.  I am and will be grateful for Freya, for all three of my children, every day of my life.  I don’t take anything for granted anymore, nothing.  That doesn’t mean I am some kind of perfect parent.  Trust me, I still lose my shit from time to time.  Making sure I appreciate what I have doesn’t mean that I have to live a flawless life, it means I have to live a normal one.  That said,  I cannot help but feel the impending sadness and the sense that I am losing something very precious.  Indeed, I am losing the most precious thing of all; time.

Maybe that is why I had the dream now?  Because time, in terms of my time with Freya, it is running out. Again, not completely, and yes I know that I will still have the time when I am not working.  But we all know that when you work around children, you are most likely grabbing stolen moments between them sleeping and eating, and the quality time has to wait for the weekends.  Although I am sure that returning to work will bring some benefits to family life (not least the money!), it’s still hard for me to imagine dropping Freya off anywhere and just walking away.  We’ve not really done that at all in the last 2 years.  Time to get some practice in I think, or the pair of us are going to be a nightmare!  I know I’ll find a way to make it work, just like I did working full time around the other two children.  In the meantime I will keep my fingers crossed that I am able to get a balance, and perhaps not be required to work a full 5 days every week.  Until April though, I just need to make sure that I don’t let any of the time go to waste.  I don’t want to be sat at work thinking about all the things I should have done.  Time to start working down that list.

According to dreambible.com, dreams involving a car sinking in water “represents feelings of uncertainty as you attempt to take control of a situation.  Decision making abilities that are being overpowered by negative emotions or problems that are too big to control.” Being actively involved in raising awareness of Kawasaki Disease is something that gives me a lot of hope, pride, and purpose.  It has added meaning to Freya’s diagnosis, knowing that she didn’t go through what she did in vain.  But it comes with a price, albeit a tab that I am more than willing to pick up.  It comes with a great deal of sadness, frustration, fear and despondency.  I expose myself to information and personal stories, sometimes good, often not so good.  Whilst many of those stories spur me on to continue doing whatever I can to ensure that none of our children suffered at the hands of KD for nothing, they do affect me deeply.  Some recent stories, as well as things that are on the horizon for Freya, have made me thoughtful about the future.  I am apprehensive about many things, in fact I shared a blog post about those worries just recently.  I worry a lot about time.  About how much of it we have, about how much of it Freya has.  Thankfully, I have this voice in my head that tells me to stop being so damned melancholy, and reminds me that I cannot live the rest of my life waiting for something bad to happen.  That would be the most tragic waste of whatever time we have, for anyone, not just us.

I have often dreamed of water during periods of great emotional stress in my life.  When I suffered with post-natal depression after the birth of my first child, over 12 years ago, I had many vivid dreams.  I remembered them all, or else I woke in a panic and wrote them down in a book I kept by the side of my bed. Those dreams involved me drowning, or my daughter drowning, sometimes able to prevent a tragedy, but often not.  At times when I was under considerable pressure at work, I would often dream about natural disasters involving water; huge Tsunami’s that swept away everything and everyone that was special to me.  Generally speaking those dreams have occurred when I have felt overwhelmed, either by physical pressure or emotional stresses.  Or at times when I have felt like I am unable to keep my head above water but nobody is there to help keep me afloat.  I think that is the case here – I have so many things that I would like to achieve, but very little time left in which to achieve it.  On top of that I have no idea what position I will be taking when I return to work, or what hours or days I will be working, so maybe as April draws nearer there is some anxious anticipation building.

Edreaminterpretation.org tells me that dreaming of an object sinking “may suggest that we are about to lose something we value”, and boy are they right on the money with that one.

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