sadness

An Exercise in Mindfulness

Posted on by Bluemama
mindfulness
ˈmʌɪn(d)f(ʊ)lnəs/
noun
  1.  the quality or state of being conscious or aware of something.
  2. a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.

(Source:Google)

The thing is with this kind of stuff is that it all sounds a bit new age, off in a forest finding yourself whilst hugging a tree, doesn’t it?  Well it does to me anyway.  But I was given my homework at the last session (my first session) so I thought I should play along if I really wanted to beat this thing.  The counsellor gave me a pile of papers last week, and had ticked a number of the exercises that she wanted me to practice.  I am undergoing Cognitive Behavioural Therapy to deal with trauma; I apparently have post-traumatic stress disorder (PTSD).  I say apparently, because to be honest I’m pretty embarrassed with the diagnosis.  I mean, you hear the word PTSD and are immediately met with images of soldiers on the frontline in Afghanistan, or firefighters coming out of the Twin Towers.  I have never once in my life imagined a normal mum, with a normal life, who can’t shake off the events of the last year when her daughter was diagnosed with a serious illness.   And that is who I am (except maybe less stress on the ‘normal’).

Anyway, I shared an image on my social media pages that I created last week (my brain), designed to illustrate what goes on in the mind when it’s owner has a bit of a tough time handling a traumatic event.  Although I don’t think I am worthy of the PTSD diagnosis, I do understand what is going on up there at the minute and it helped me to show it in a diagram.  The long and short of it (no pun intended) is that the events of last year have become too big for my brain to process.  Those short-term memories should have made their way down into the long-term memory by now, but they’ve got themselves stuck.  And because they are stuck in my short-term memory, they are there, all the time; a constant reminder of those dark, dark days.  Sometimes they are that there, that it feels like they are here.   Now let me tell you there is a massive difference between recalling a painful memory, and intrusive memories and flashbacks.  I was ‘blessed’ with a pretty remarkable memory, particularly for words.  I can recite poetry that I’ve not read in years, I can recall the exact way I felt when I was thirteen years old and my Grandad passed away, and yes dear Husband, I can remember what was said in that argument in 1998.  I don’t seem to be able to let go of things that have evoked a strong emotional response.  Not a bad thing, unless you feel most things with the intensity of a Tsunami, in which case you find yourself with a hell of a lot of stuff up there.  But I digress slightly.

I’d say the main difference between a memory and a flashback is the intensity of the emotional response.  Of course we all feel a little sad when we recall a loss, or a particularly difficult time in our lives.  But when those events have been properly processed, they evoke just a small amount of the emotion originally felt.  When those events haven’t been correctly processed because the brain just couldn’t manage the overwhelming task, they are recalled with all the strength of emotion that was felt the moment that it happened.  I think it might help (me more than anyone, perhaps) if I tell you what kind of intrusive thoughts and/or flashbacks I am talking about.

Intrusive Thoughts

These vary from images that flash in front of my eyes when I am least expecting it (though not to be confused with a ‘flashback’ – you’ll see why later), to a little Voice of Doom in my head that likes to play Devil’s advocate with the ever-so-slightly-smaller Voice of Hope.  You might have heard me talk about ‘Ant‘ before (Automatic Negative Thoughts)?  Well she’s a whole other kettle of fish!  I don’t seem to hear much from her these days, but I often wonder if she is pulling the strings of the Voice of Doom.  Ok, so now I sound like I have multiple personality disorder, and whilst I do not profess to be particularly knowledgeable on that subject, I can confidently say that I do not! These parts of the brain exist in all of us, I just like to give them a name as we are so well acquainted.

So, let me give you a few examples.  

If you are old enough (that is, as old as me) then you might remember that 1980’s toy, the ViewMaster?  Hang on, I’ll find you a pic…Unknown.jpg…There you go.  When I close my eyes, it’s like an automatic ViewMaster, presenting snapshot after snapshot of memories.  Bad memories.  Mostly it’s Freya; lying in her hospital cot pleading at me with her eyes, gasping for breath, disappearing into the MRI tunnel or her eyes rolling into the back of her head as she was forced into sleep on an operating table.  The worst snapshot is the one of her lifeless, limp little body at the moment that I realised this was going to be bad.

Sometimes, it’s not Freya, but me that I see.  Like watching my own life through some kind of out of body experience.  That’s what happened when I went to bed last night.  Image after image of all the moments when I felt most frightened and most vulnerable during my 6-week incarceration courtesy of 3 of Yorkshire’s finest hospitals.  The moment the Cardiologist took me to a room and told me she couldn’t do anything to save Freya from the worst of risks.  The moment I tried to go back to the HDU, to my little girl, and slid down the wall because I couldn’t bear to take one more look at her if I was going to have to lose her.  The times when visiting hours were over and my lonely evenings began.  The long walk down those LGI corridors at 3am when my body betrayed my resolve to stay awake by Freya’s bedside all night (they wouldn’t let me sleep on the ward for that period).  And standing in the hospital Chapel doors, not really knowing why, but writing a prayer all-the-same; “Dear God, prove them wrong.”

Those are some of the things that I see when I close my eyes.  So I don’t.  I stay awake for as long as I can possibly keep my eyes open.  Partly because that means there are less hours for Freya to sleep ‘unsupervised’, partly because of what lies behind closed lids.

And then there are the thoughts.  The what ifs, buts and maybes.  I’ll be brushing Freya’s hair, and wonder whether she will have her brother’s curls…“What if you never see it?”  I’ll be listening to her gurgle and babble away in that special little language of hers and think about how I can’t wait to be able to chat with her…“As long as nothing bad happens before then.”  I swat those thoughts away like pesky flies, but the sneering tone lingers.  Every thought I have about the future is met with a voice warning me not to tempt fate.

Flashbacks

These are less common.  It’s hard to tell the difference between a flashback and an intrusive thought/memory sometimes.  I have mini ‘flashphoto’ moments at times.  I don’t know if you have ever seen that movie with Brad Pitt, Se7en?  <<Spoiler Alert>> There’s a scene right near the end when he opens the box and just for a split second you see an image of his wife’s head in the box.  It’s that quick, you don’t even know if you really saw it, and it’s only when you’ve seen it a few times that you start to expect it.  Well that happens to me with images of Freya, except sometimes the image sharpens until it has altered reality.  Just yesterday, I looked down at her little post-bath face framed by a fluffy white towel and was immediately taken back to the moment I first held her in my arms, wrapped in a hospital issue blanket.  Without any warning, a rush of sadness overwhelmed me and the tears that are always there at the brink started to fall.

I think for me, the differentiation between the intrusions and a flashback, is in both the intensity and their ability to alter reality.  The intrusive images are played to me one by one, like you would see with every click of that little red ViewMaster.  They are disturbing, upsetting and unnerving.  But I can shake my head and try to make them go away.  The flashbacks are different.  Whether it be seeing Freya’s face change right in front of my eyes to the point that I am again holding my sick child in my arms, to reliving a particular event, they steal into my life without warning and manage to transport me back in time to when it was all very real and very raw.  When the ‘real’ flashbacks happen, I am cold, rooted to the spot, I tremble, I sweat, my chest tightens and I can’t breathe.  And I cry, I cry a lot.

There have been a number of triggers for the ‘real’ flashbacks.  Mainly smells and sounds that take me right back to those weeks in the hospital.  The phone rings at the wrong time and it’s the monitors beeping incessantly to tell the nurses the IV has stopped running, again.  Freya’s bedtime toy starts to play it’s little tune in the middle of the night, and we’re right back there, in that cubicle, her eyes staring blankly at the glowing seahorse that soothes her to sleep.  I can’t sing a certain song, or hear certain pieces of music without being stopped in my tracks as my surroundings and environment change around me.  Having Freya’s old cot by the side of my bed is a major trigger.  The silhouette of the bars in the dim light of our bedroom at night; I find myself constantly checking the baby that isn’t there (she is in her own room now).

I feel like I am constantly being hijacked by my fears and my memories.  They don’t want to let me go, they don’t want me to let go of them.  And as warped as it might sound, I’m not sure if I want to let go of them… 

Letting Go

What does that actually mean?  You know what I am most scared of?  I’m scared of beating this, and forgetting.  Scared I’ll stop appreciating what we all went through and begin to take life for granted.  Scared that if I forget how it felt, I won’t fight to make sure Freya has the best life she can possibly have; that we all will.  And because I feel like my whole self has been defined by the events of the last year, I am scared that if I let it go completely I will not know who I am, and I will be lost.

But I do know that I have to let this go.  I have to open my mind to the treatment I am being offered.  I have to shift these things from my short-term memory down into the long, where they will never be forgotten, but where they will cease to have control over my life.

Treatment

Today I started the treatment in earnest.  During the session, I had to undertake a Mindfulness of Emotions exercise.  I was already crying before we started; I had been asked to think of 5 events in my life that had had either a positive or negative emotional effect upon me.  Always the over-thinker, I struggled to think of them and my mind went blank.  I thought of a couple of things – Grandad dying (bad), Eliza’s birth (bad), Finlay’s birth (good)… Nothing else would come, absolute blank.  Obviously the situation with Freya goes in there at number 5, but we had to agree to leave number 4 for next time.  I think the plan is that you practice the techniques whilst processing some old memories/events so that by the time you reach the biggie you are an expert in handling thoughts and emotions.  Something like that.

So, I sat in my chair opposite the therapist, and she handed me some paper towels to wipe my eyes (I have no idea why they don’t realise they might need tissues for these things!).  She told me to close my eyes, lay my feet flat on the floor and sit straight with my hands on my lap.  All I had to do was to sit still, feel my body in the chair, and when a thought came along I was to accept the emotion that it brought with it, and dismiss the thought. What actually happened was a full blown panic attack.  I felt the anxiety building as I sat there facing the counsellor with my eyes shut (did she not hear that I have an issue with that?!)  I was conscious that my feet wouldn’t stay still, and I was wringing the tissue in my hands.  Every inch of me wanted to get up and run, and it was one of the most uncomfortable things I have ever done.  When I stopped breathing, and then started gasping for breath (I know! Idiot!!) I had to open my eyes.  The counsellor had a chat with me about what had happened, and she said that I was trying to run from what I might see with my eyes closed, and we should start again.  This time I would face the window, so I might feel under less scrutiny.

The remaining 15 minutes of the exercise were tougher than I imagined.  But in that state of quiet awareness, I could actually see the thoughts arriving and feel the physical effects that those thoughts were having on my whole body.  It was intense, and surprising.  Sitting there in that state, I was acutely aware of how my body reacted to the thoughts as they intruded.  My toes were actually curling, my whole body squirmed, and my breathing became more rapid.  And then, of course there were the tears, but I never had that much of an issue producing those.  Sitting there allowing myself to feel the emotions whilst trying really hard to tell the thoughts to bugger off, I felt like one of those shove ha’penny machines at the amusement park.  A mind full of thoughts spilling over into my consciousness, causing the emotions to come rushing out in waves.  Towards the end I felt bruised.  But I did notice that within the last few minutes I began to notice the sounds around me, and no longer noticed the thoughts.  Cars going by the window, the scrape of a chair from the floor above, the buzzing of the PC on the desktop.  And as I noticed those noises, and the noises in my head began to quiet themselves, I felt my shoulders drop and I was still.

My homework is to practice that every day for at least 15 minutes.  As I am not sleeping, and am delaying bedtime, the counsellor suggested that I do the exercise in bed.  It’s like training your brain to accept thoughts without entertaining them, to feel the emotion that those thoughts evoke, but to focus on something else so that those emotions can be let go.  Right now, my thoughts are being overindulged.  They need putting on the naughty step, and I need to stop allowing them to dictate how I am going to live my life.

 

Wish me luck.

How do I feel?

Posted on by Bluemama

“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.

Forever changed…?

Posted on by Bluemama

I often find myself wondering if we could cheat this thing, Peanut.  You know, change the past by putting some distance between you and the place where all of this happened.  Get in the car and drive, just drive, as far away from here as we can get on a tank of diesel.  Far away enough to escape the darkness that threatens to steal the sunshine from our lives.  

 These past few days I have been taunted by intrusive thoughts.  I have a ‘friend’ called Ant* who used to hang around a lot, whispering negative thoughts in my ear whenever I tried to look on the bright side.  It seems these days she’s been inviting a whole bunch of pals round to join in, and they fill every space in thought that I have. Last night, as I laid you down to sleep, I was hit by a thought; “What if this is the last time I put you to bed?”  I don’t even know where it came from, I mean I don’t feel like you are in the danger zone anymore. Do I? To be honest, I don’t really know what I know anymore.  Before the appointment in Doncaster last week, I had reached a point where I felt things were stable, and that we were out of the woods.  Having to relive it all again to a new Doctor has knocked me sideways, and I feel confused and unsure and alone again.

These days my mind is never quiet.  I have to keep myself busy just to drown out the noise.  Today as we drove home from the Children’s Hospital my mind started to wander and I thought about how much I love you.  It’s crazy just how much, sweetheart.  It’s not even healthy.  I mean, of course loving you is a good thing, but when every thought of how much I love you is met with a thought about how devastated I would be if anything were to happen to you… God, I wish I could just love you without the fear.

As that last thought entered my head, I actually shouted aloud to the cloudless grey sky, “DON’T YOU DARE DO IT, DON’T YOU DARE!”  I’m not even sure if I know who I was daring.  God I guess.  I was challenging him, without any clue how I was going to punish him if he chose to ignore my threat.  What could I do?  What power do I have to protect you?  I just wish someone could tell me that things are going to work out, that you will recover completely and this nightmare will become a distant memory.  I don’t want to feel sad every time I think about what you might sound like when you talk, or when you will crawl, or what you will be when you grow up.  I want to be able to think about your future without being checked by the voice in my head that warns me not to tempt fate.

I was jolted out of my thoughts by the beeping of a car horn.  To the impatient lady at the wheel of the Mini behind me: We don’t care much about your beeping horn.  How nice to live in a world that you feel you can rush through.  I personally have no desire to rush through this life.  This precious life.  So beep away, lady, and know that you will not move me today or any other day. Nor shall you induce me to hurry for your convenience, for right now I am sharing the air in my Vauxhall Astra with the most precious thing I have in my life.

There is a quote that does the rounds from time to time about being kind to others, because you never know what troubles people are dealing with.  I will try to remember that, and be more tolerant of others.  Mini lady achieved a whole car’s advantage on me.  Was it worth it to steal a precious moment?

I feel like I am in purgatory.  Stuck in hellish flashbacks of the worst time of our lives, but without the Utopian promise of a life no longer touched by Kawasaki Disease.  I’m not sure how much sadness I can take.  I had you sweet and perfect and just as I made you, for seven weeks.  Seven weeks.  Now tears are streaming down my cheeks as I silently scream, “WHY?!!”  Why, Peanut? Why you? Why us?  Why did they have to ruin everything?  I am afraid that I will never be the same again.

On Friday I will have my first counselling session to try to help me come to terms with what has passed, and what might be in our future.  I have so much I need to say, out loud.  I’m frightened that once I open the floodgates to the emotions inside me, that I will not be able to close them back up.  And I’ll only have an hour.

*reference earlier blogs – ANT = Automatic Negative Thoughts.  “Ant” is the personification of my negative thoughts and feelings

The Reality of Kawasaki Disease

Posted on by Bluemama

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.