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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How do I feel?

“So, what brings you to us today?”

There it is, the dreaded question.  The question that you know is going to be the first one they ask, so you rehearse it over and over while you’re sat in the waiting room.  The question that, when it actually comes out of the mouth of a psychotherapist, is most often met with a blank silence, and lots of tears.  It’s a funny question to ask I think (funny odd, not funny haha). I mean, where on earth do you start?  The relief of actually being in front of someone who is not only qualified to ask these questions, but might actually know how to help you deal with the answers, has always resulted in me falling apart right in front of them.  The same can be said of this morning.

I felt sick to my stomach this morning, and a couple of times I thought I might actually run.  But then they called my name, so I had to see it through.  These things can go many ways; a lot depends on who the person on the other side of the door is.  I’ve been known to go for help (yes, I’ve been here before, well kind of – I’ll explain later), and clam up the moment they’ve opened their mouth. “Yes, I’m fine.  In fact, I’m not really sure why I’m here.  I’ve been feeling much better lately…”  Mostly they are the kinds of people that are experienced in getting people to talk, and are warm and welcoming, and I spill the beans before my backside has even met the chair.

Today was like that.  I was introduced to a trainee psychotherapist who would be responsible for carrying out my assessment.  i did feel immediately at ease with both her and the psychotherapist present and was able to articulate how I felt to a degree.  I answered that question, after a pause and a moment to catch my breath and stem the tears, that I was struggling to come to terms with a situation that I found myself in.  I explained that I felt an incredible sense of sadness that our child was struck by this devastating illness, after just seven weeks of normal.  I explained that I felt afraid that I loved Freya too much, and that every time I felt positive about the prognosis I was overwhelmed by the fear that the rug could be pulled out from under my feet.  I explained that I felt angry at the world for not understanding how much this has impacted on our lives, and that I had considered taking myself and my daughter far enough away from all of this to convince me that it never happened.

After a considerable length of time where I switched between a mother unable to speak through the tears as I recounted some of the experiences that you will have read about if you follow this blog or the Facebook page, to a sensible, level-headed woman who could describe the illness and its effects with the knowledge of a medical professional, a conclusion was reached. I am not depressed.  I knew that.  I have suffered with depression in many forms in the last 11 years, and I knew that what I was feeling was not the same.  It’s one of the reasons why I have struggled on alone for so long; I didn’t have an appropriate label for what I was experiencing.  I don’t display the classic symptoms of someone with depression.  I enjoy my life and know that I have a lot to live for.  I don’t avoid people or situations, in fact I look forward to human interaction and an opportunity to escape, let my hair down, mingle with my peers.  I took part in a hen party this weekend, which I thoroughly enjoyed (apart from the bit where I cried myself to sleep looking at a picture of my precious Peanut).  Some of the old familiar thoughts have been creeping in; I text her ages ago, why hasn’t she responded? She has probably had enough of me/isn’t interested/doesn’t care/doesn’t want to be friends with me anymore.  But I’ve managed to ‘have a word with myself’ and been rewarded by a late response and an explanation that allayed my fears, and reaffirmed my common sense.  I get up every morning, shower, make myself look presentable (cue the school mums saying “Seriously! She thinks that is presentable!!”), I have my nails done, I buy nice clothes. I am still interested in my outward appearance, and take care of myself.

However, I experience anxiety like I have never known before.  Full blown panic attacks where I feel like I am being strangled, and my body wants to sink into a puddle on the floor.  Real, deep sadness that takes my breath away.  Intrusive thoughts that threaten every moment of happiness that I dare myself to have.  Confusion, anger, hatred, irritation.  I shout at my husband and the kids like an old fish wife at times; I have no patience.  I want to lock myself in a room for a week, or more, and shout, kick, scream, punch some walls; let the emotion of the last 6 months escape from me in one tremendous fight against myself and the world.

See, I’ve written my blog.  Every time I have feelings I need to share, I take to my Mac and write.  I don’t think about it, my words are not considered.  I sit and write whatever my fingers choose to type, and Prosecco-fuelled as I am now, it just comes out, unconsidered, but raw and real.  I thought it would help, that writing would be therapy.  It has a little, but not a lot.  I feel like the words have to be spoken, aloud, to someone who hasn’t shared this journey with me, to someone who hasn’t had their own journey to contend with, to someone who doesn’t have an opinion on what I should think or feel.  To someone who doesn’t wonder what all the fuss is about (you know who you are!).  And I do not want the rest of my life or hers to be defined by the bastard that is Kawasaki Disease.  It has already taken enough from us.  And right now, Freya doesn’t notice that there are tears behind every smile, but it won’t be long before she does notice.  “Why are you sad, Mummy?” These are not words I ever want to hear come from that sweet little mouth.  But they will, if I don’t take control.  And I don’t want Freya to grow up scared of this world she lives in, scared of her own strength, frightened to fall or take chances.  I want her to live, and love life.  How can she do that if I put her to bed every night afraid that she won’t wake up the next morning?

The psychotherapist admitted that the low intensity treatment they offer is not what I need.  It is likely that I am suffering from post-traumatic stress disorder (PTSD) and am being referred for appropriate treatment.  I have a number of choices ahead of me.  I need to choose the treatment that will benefit me and my family the most.  I can be treated for PTSD with cognitive behavioural therapy (CBT) and eye movement desensitisation and reprocessing (EMDR), which are standard treatments.  Or I can have talking therapy that will allow me to say aloud all the things I have kept inside of me for these past few months.  Both would benefit me.  I think the most important thing for me to deal with right now are the symptoms of PTSD.  I need to rid myself of the anxiety, and be able to walk into our local hospital without it having a physical and debilitating effect on me.  I need to get some sleep; stop staying up until 3am to limit the number of hours that I am not alert to Freya or aware of her nearness.  And I need to erase the flashbacks, because those are the most distressing of all.  I have lived through these things once, re-living them every day against my will is making me unwell.  I will never forget some of those moments, nor do I want to; those moments are what will ensure I never take a moment with Freya for granted.  But I don’t want to see them played out in my mind like a DVD on a loop every day of my life.  Those memories are stopping me from moving on, and from seeing the beauty of life that is in front of me.  And I want to move on more than anything.

The Reality of Kawasaki Disease

When the phone rang at around 9:30pm last night and my mother-in-law was on the end of the line telling me to tune into ITV because an episode of Doc Martin was showing a case of Kawasaki Disease, my stomach did a little somersault.  A prime-time TV programme mentioning KD? I could hardly believe it. I switched over a little too late so set the programme to record on ITV+1.  As more and more comments and messages came into the various Kawasaki support group pages on Social Media sites, including Freya’s Story, the adrenalin was pumping.  You could almost feel a collective buzz as parents of children who have suffered at the hands of Kawasaki’s from all over the UK tuned in to witness KD getting a voice.

I couldn’t help but feel a sense of pride in being part of this campaign for raised awareness.  I cannot claim credit for the inclusion in this TV programme, or the coverage in The Daily Mirror last week, but I would like to think that somewhere along the way there will be a link with Freya’s Story and the small bit I have done to help raise Kawasaki’s profile.  I can claim credit of over 300 signatures on the Kawasaki Support Group UK petition (change.org/kawasaki), and I know that a lot of the 500+ people who now follow Freya’s Story on Facebook and Twitter will not have heard about Kawasaki Disease before;

“This evenings episode of Doc Martin includes a case of Kawasaki disease, wouldn’t have known what it was without this page and good coverage to help raise awareness.” (Posted by Facebook user on http://www.facebook.co/freyasstory)

“I saw the Mirror, I have read nearly all of Freya’s story, I have cried for you and smiled at the lovely pictures. It’s amazing though what you have done, I knew you were strong and raising the awareness is fantastic.” (Friend, and follower of Freya’s Story on Facebook)

But I’m not doing this for praise or thanks.  I’m doing it because I don’t want another parent to have to go through what we did, what so many parents have, because of a lack of knowledge and understanding of this disease.

So, what did I really think of last night’s episode of ITV’s Doc Martin?  Initially, I was excited and amazed that Kawasaki Disease had even managed to make in into the public eye in such a dramatic way.  One of the nation’s most prolific TV channels mentioning something much of the country has never even heard about! Fantastic!  And then I watched it.

What were the positives?  Well, you get to understand the symptoms of the disease.  The little girl has a temperature, a red tongue and a rash on her body.  They allude to the fact that she may have peeling skin on her hands when a little boy remonstrates about having to hold the sick child’s hand on a school outing.  The child eventually collapses, and the show’s ‘hero’ appears.  After one look at the child, he makes a rather pompous statement, which went something like “this child hasn’t been eating sweets, she has Kawasaki Disease”.  And just like that, after seconds of seeing the child, he makes his diagnosis and drives the child at high-speed (she may die within 30 minutes apparently) to get her the treatment she needs to avoid the risks of a coronary artery aneurysm.  Amazingly the medication is waiting for them on arrival at the hospital and the child receives the treatment.  In terms of the programme, this whole thing took 3 minutes.  Remarkable.

So why the long face? It didn’t take long for the celebratory feelings to wear off once I let what I had just watched sink in.  Part of me still wants to believe that no matter how the issue was covered, any coverage is good for raising awareness of a disease that most haven’t heard about.  But (you could see that but coming couldn’t you!) it was scripted in such a glib and blasé manner that I wouldn’t be surprised if the message was lost on most viewers.  I suspect many won’t even remember the name of it today, let alone the symptoms.  And if they did remember it, I do not believe that anyone who hasn’t experienced KD first hand will have one iota of an idea about how serious, or how scary this disease is.

I know that the ITV would argue that Doc Martin is a medical comedy drama series; it does not profess to deliver messages in a serious manner (that can be left for the likes of Panorama and Casualty who gave KD some airtime about 20 years ago, in the mid-90’s).  We can be grateful that such a rare disease has even made it on the ITV radar, I guess.  But when you’ve watched your child battle with this disease, you can’t help but be left with a sour taste in your mouth after watching the episode.  In fairness to the programme, however, I am not a regular viewer so am unfamiliar with the usual format and scripting, and I know that they are likely to come under attack from victims of all manner of illnesses that they cover; they’re never going to please everyone.

If you watched the programme, and you think that Kawasaki Disease is a funny sounding illness, maybe even fictitious, then please know that it is very real, and is the leading cause of acquired heart disease in children.  If you think that it is easy to diagnose on first look at a few symptoms, please know that is not the case and often the symptoms come and go, disappearing just when you needed them to be seen.  In fact in many cases, not all the symptoms are present.  If you agree with Doc Martin’s assessment of the child’s parent being negligent by not noticing the signs, then please know that most medical professionals in our country have never heard of Kawasaki Disease, and many mis-diagnose the illness, sometimes with catastrophic results.  If you think that the treatment is readily available, please know that intravenous immunoglobulin is in short supply, and it is expensive.  It’s a product derived from human blood; we’ve probably all seen the marketing campaigns from various blood donation schemes recently – there is not a bottomless pit full of blood that we can all tap into at any time.  And if you think that all cases of Kawasaki Disease have a happy ending, you’ve just got to be a part of the support groups on social media sites to know that isn’t the case.  There are children currently fighting for their lives, and many that have lost their fight altogether.

I am disappointed in the programme, not only for its flippant handling of the illness, and think they could have done more to make it clear that this is a sinister disease that needs some real focus.  Many programmes include messages in the credits to support people who may have been a victim to the contents of an episode.  I think the ITV could have at the very least put up a public message about Kawasaki Disease, making it clear that this is very real, and even just supplying a link to NHS Choices for further information.

In order to reach a diagnosis, I had to watch a 7-week old Freya battle constant temperatures above 39 degrees for over 2 weeks.  Her heart rate was dangerously high.  She was resuscitated in a high dependency unit after her body started to shut down.  She had cannulae in every site possible in her tiny body, delivering a cocktail of various potent antibiotics, ibuprofen and paracetamol, and she was being fed through a tube.   She had blood taken every day for a period of 6 weeks, sometimes twice a day.  She had an MRI scan, ultrasounds, x-rays, ECG’s and echocardiograms.  She had 2 lumbar punctures, one under general anaesthetic which they performed at the same time as performing a bone marrow aspiration to test for Leukaemia.  She received a blood transfusion when her haemoglobin levels dropped dangerously low.  And she has received intravenous immunoglobulin – a product that is derived from thousands of blood donors – as well as a drug that shuts off the protein that is instrumental in the body’s fight against cancerous cells.  She is not even 6 months old yet.

Sounds shocking to read it all like that, doesn’t it? See all the tests that she underwent, just to try and work out what this illness was.  Kawasaki Disease threatened to take her life.  If the Rheumatology Consultant that came so see her on Day 12 of her illness had not suggested performing another echo “just as a precaution” the damage to her heart would have remained undetected, and her coronary arteries would have continued to dilate further and further until perhaps they wouldn’t have been able to stretch any more.  That means rupture.  Rupture means sudden, unavoidable, unpreventable death.

Now think about what you just read about Freya, and imagine now that her case is not the worst by far.  Yes she had a severe presentation of the disease, and her life was in very grave danger.  But as I type there are parents fighting against doctors won’t entertain a KD diagnosis, parents whose precious children have been in hospital for weeks struggling to fight off the disease, parents who still co-sleep with their children for fear of losing them, and worst of all there are parents sitting at home wondering how they will ever recover from the death of their child.

I cry every day.  I cry when I hold Freya in my arms and am overwhelmed with how much I love her.  I cry because I can’t shake the images in my head of how close we came to losing her.  I cry when I see other people happy, without a care in the world and no appreciation of just how lucky they are.  I cry because I am still heartbroken that this happened to my baby girl, before we had even had a chance to get to know her properly as Freya, just Freya.  I cry because I am so scared about the future.  I cry because I daren’t take Freya to baby groups for fear of her contracting chicken pox or the flu (as they can develop into another rare and potentially fatal disease, Reyes’ Syndrome) and I cry from guilt that she is missing out on a massive part of her development as a result.  When I visit the children’s ward at the local hospital where this all started, I have panic attacks.  Even this week, when I thought I’d be ok and felt no anxiety approaching the hospital, I was suddenly struck by uncontrollable sobs, and I couldn’t breathe.  I cry because I am grieving for the loss of my child’s health – she was perfect when she was born; Kawasaki stole that from me far too soon.  I cry because I feel the pain of every parent who is going through this, or something similar.  And I cry with frustration that more isn’t being done to improve the advice and support that is currently being offered by the medical profession.  Chances are I cry a lot because I sleep for less than 4 hours a night; not because I have a young baby – she sleeps through the night – but because I am permanently researching the illness or related issues, or communicating with parents and doctors on the other side of the world.  I cry because I am devastated, because I am sad, because I am frightened, because I am exhausted, because I am frustrated.  I cry because I cannot forget the journey we have been on, and am haunted by the playback of the last few months, which is constantly on repeat.