A Recipe for Disaster

So it seems I am suffering with post-traumatic stress disorder with a nice deep filling of depression, topped with a scattering of anxiety sprinkles.  If I were a cake, I’d be a fruitcake.

I was thinking this morning, after I left my second Cognitive Behavioural Therapy session, about what mental illness looks like.  What does someone suffering with mental illness look like?   I guess they look haggard and worn, frayed around the edges.  Scruffy, definitely; they wouldn’t have washed in weeks.  Tired, with dark purple circles under those sad eyes.  Hair scraped back in a ponytail in an attempt to disguise the oil slick it has become from days of neglect.  Shoulders drooping, head hanging down, slow lumbering gait where others confidently tread.  Yes, I reckon that’s about right.  Except it’s rare that you would get a real close look at one, because they’ll be under a duvet, or rocking in a corner; the lesser spotted hermit

Sometimes, mental illness looks like this…

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“Nooo!” I hear you exclaim.  “She can’t be depressed! Look at her, she’s smiling.  And I know she isn’t depressed, because she lives in that nice house with those three gorgeous kids.  Anyhow, I saw her in the Wine Bar last week and she looked like she was having a great time!”

Don’t get me wrong, there are plenty of people suffering with a mental illness who meet the description above.  I’ve been there myself, duvet pulled up over my head, praying for it to be bedtime again.  But this time, it’s not like that.  Mostly I look like the woman in the picture.  Sometimes that face has to be painted on, that smile fixed in place with staples invisible to the naked eye.  Other times it’s real, and I feel real joy.  Sometimes, behind closed doors, when nobody is watching, I lay curled up in the corner of the sofa and cry.  I could cry right up to 3pm, then paint that face on and pass pleasantries with you in the school playground at pick up time.  Being a great actress comes with the territory.

I don’t want you to think that I am fake.  I’m possibly one of the least fake people you will meet.  It might be an effort to put on that smile sometimes, but I am generally a very sociable person and if I didn’t feel like smiling before we started talking, it’s very likely that I will be genuinely smiling by the time we part company.  I’m like that; people lift me.

And suffering with depression, either long-term or temporary, doesn’t mean that I am miserable all of the time.  In some ways, whilst this illness can be debilitating, I think I am one of the lucky ones.  I am very tuned in to my thoughts and emotions.  When I suffered with post-natal depression after my first daughter was born (nearly 12 years ago now), it was different.  I was severely depressed.  I believed that my husband’s family wanted to get me sectioned so they could have my daughter all to themselves.  I considered leaving, and telling nobody where I was going; figured I’d go live in some little hut by a lake in the Outer Hebrides or somewhere.  I thought everyone would be better off without me, and I would be better off without them.  On my worst days, I did not recognise myself in photographs.   And on worse days than that, I actually contemplated how much easier life would be if my daughter could just be gone

I’ve always been a sensitive, thoughtful soul.  I guess I was predisposed to this kind of malady.  In my teens, my old bedroom at home was painted black and I wrote a lot of poetry.  I’ve never found it hard to cry.  I think I’ve cried an ocean in my years on this Earth.  I don’t believe I had ever been depressed before my experience with PND.  A bit of low self-esteem maybe, but not depressed.  But PND altered me; it’s like a part of me was broken that could never be repaired, and was the catalyst for years of on-and-off suffering with various mental health issues.  The last 12 years have been on the whole great, though peppered with periods of counselling, cognitive therapy and anti-depressants.  The last time I was prescribed anti-depressants was when I was pregnant with my youngest daughter.  The only thing that stopped me taking them was the risk of congenital heart defects for my baby; those of you that follow Freya’s Story will appreciate the irony in that.

Mental illness covers a whole spectrum of serious disorders in a person’s behaviour or thinking, with over 200 different conditions to choose from. Now, that was a bad choice of words; this isn’t something anyone chooses.  But you get my drift.  And although many people will suffer, with or without a diagnosis, with the same conditions all over the globe, the degree to which they suffer will vary with every individual. What I am going through this time is very different to anything I have suffered with before.  Firstly, the post-traumatic element is new; I hadn’t faced any real trauma before my daughter was diagnosed with a life-threatening illness last year, so that’s a first for me.  The treatment I am receiving is specifically designed to expel the flashbacks and help my brain to process the memories that have got a little lodged on their way to my long-term memory.  The depression isn’t new, however it has been nicely disguised, hiding in the shadows of the PTSD, waiting for the right moment to strike.  It felt now was a good time.  And then there’s the anxiety, and oh boy ain’t that a treasure!

So, just how much fun is it to live with me these days?  I guess you could ask my husband or my kids, but like I said, I’m pretty in tune with my thoughts, emotions and behaviour to give you a pretty honest view of that.

I’ve talked about PTSD before.  I’ve shared some of the flashbacks and intrusive memories that I have suffered since my daughter was diagnosed with Kawasaki Disease last June.  I’ve told you that sometimes, when I look at Freya for long enough, her face morphs into the sad, scared, sick little baby that pleaded with me with her eyes from a hospital cot.  I was embarrassed by the diagnosis.  You associate it with war veterans.  But, it does happen to people who have suffered a critical illness, or in my case watched a child suffer.  There’s a big difference between a flashback and a bad memory.  We all have bad memories from time to time; a smell that reminds us of our first love, a song that can recall memories of a lost loved one, events that remind you of the time you were badly beaten up at school by that one girl in your GCSE year (https://bluemama.co.uk/2014/12/01/one-girl-one-day/).  Bad memories I can deal with.  They are long-term memories, and as such when recalled the emotion doesn’t hit you with the same intensity that it did at the time.

A flashback puts you right back in the original situation, and all the components of that memory – the emotions, the sounds, the smells, the physical surroundings – are replicated with all the intensity of the event itself.  Apparently when these happen, I have to tell my inner child, the victim, that it is ok for them to remember, but that I will help them through it.  I know, right?!  But joking aside, the tips I have been given have worked, and I haven’t had what I would call a ‘real’ flashback for a little while now.  Removing the spare cot from our room was a stellar move and my brain no longer keeps me up until the wee hours to avoid going to bed.  Cognitive Behavioural Therapy that specifically focusses on trauma, exercises ‘mindfulness’ to overcome that trauma by training your brain to accept the thought, but to prevent it from lingering by focussing your attention on how the thoughts made you feel, rather than the memory itself.  I’m sure I’ve just understated the treatment completely, but that’s it in layman’s terms.  And it actually seems to be working.  We haven’t yet worked through the key reason for my condition (Freya’s illness), instead we are working through three other life events which evoke a particularly poignant memory (good or bad).  The idea being that you practice the techniques on some more dormant memories, so that by the time you reach the biggie, you’re ready for a fight.  Today we practised the technique on the memory of the death of my grandfather.  I’ve been told not to reflect on that outside of the sessions, so I shall leave that there.

The depression is different again, and kind of fills in the spaces between the PTSD symptoms.  It’s a general feeling of low mood, varying in intensity depending on the day, the hour, the situation.  I can’t describe it any better than it being like a dark cloud permanently looming above my head, casting a shadow over me.  The good thing about clouds, is that sometimes they shift a little in the breeze.  A strong wind can brush them off completely for a time.  And the sun sometimes manages to break through and cast a beacon of light upon my path.  In some ways, I have learned to control the weather.  In the PND years, I couldn’t have done that.  But as I have said, I am more self-aware now.  I know that even if all I want to do it bury my head under that duvet, I have to choose another way.  Having kids kind of forces my hand.  With my firstborn, I didn’t have to be anywhere, so it was far too easy to stay in my pyjamas all day and wallow in sorrow.  I know some victims of mental illness find themselves in that place, regardless of their personal circumstances.  Luckily, this hasn’t taken all of me, and I do function on a pretty normal level most of the time.

How does depression affect me?  Well, I go a bit into myself sometimes.  I think a lot.  I cry a lot, not always for any reason.  I question my capabilities as a mother, as a wife, as a person generally.  I lose sight of my self-worth.  I retreat from people when I feel hard done to, and the depression makes sure that the further I retreat, the higher the wall becomes.  I have automatic negative thoughts (‘Ant’ – you might have met her in previous blogs.  She looks a little bit like me, but a lot like that girl that beat me up in my GCSE year.  Pretty girl, likes to stick the boot in now and again).  My thoughts tend towards the catastrophic.  And I get a bit hung up on signs.  Numbers, magpies, white feathers, a necklace breaking; all signs of impending doom for me or my relationships.  On a good day, it doesn’t affect me at all.  No more than a grey cloud hovering above, threatening rain, but not quite managing to defeat the sunshine.  I’m stronger than I think I am.

For a more insightful description of how depression feels, I don’t think there is anyone that has done it better than The Black Dog Institute when they put out this video on You Tube (https://www.youtube.com/watch?v=XiCrniLQGY).

And lastly there’s that little treasure, anxiety.  That’s a whole new ball game.  Aside from the nasty flashbacks, I have found the anxiety the most debilitating and damaging of all.  The Mind website provides a pretty comprehensive list of the symptoms of anxiety, so I thought sharing that was as good as any list I could provide (http://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-symptoms/#.VsTInsexrjI)

Physical sensations: Psychological sensations:
  • nausea (feeling sick)
  • tense muscles and headaches
  • pins and needles
  • feeling light headed or dizzy
  • faster breathing
  • sweating or hot flushes
  • a fast, thumping or irregular heart beat
  • raised blood pressure
  • difficulty sleeping
  • needing the toilet more frequently, or less frequently
  • churning in the pit of your stomach
  • experiencing panic attacks
  • feeling tense, nervous and on edge
  • having a sense of dread, or fearing the worst
  • feeling like the world is speeding up or slowing down
  • feeling like other people can see you‚Äôre anxious and are looking at you
  • feeling your mind is really busy with thoughts
  • dwelling on negative experiences, or thinking over a situation again and again (this is called rumination)
  • feeling restless and not being able to concentrate
  • feeling numb

That’s how I feel a lot of the time.  Add to that the fact that I have developed a hypersensitivity to certain sounds, which make me want to explode (want to? You do Jo!) and I’m pretty much a coiled spring of anxious tension from dawn ’til dusk.  You can imagine how fun it must be for my husband these days!

But.  And it’s a big but. It’s not all bad.  I am that girl in the photograph.  I do smile, and quite often that smile manages to reach all the way up to my eyes.  I want to do things, see people, have fun.  I like to escape the confines of my daily life sometimes.  I want to be happy.  I don’t want to cry, or shout, or feel inadequate.    I want my family to love me, not to worry about me or look at me with judgement when I fly off the handle for what seems like no reason at all to them.  I have things I want to achieve, places I want to go.  For now, I am giving the counselling route a try.  If things don’t get any easier anytime soon, I will consider medication.

No journey with mental illness is easy.  Some might be easier than others, and I am open to treatment and very self-aware.  I know that right now I have feelings that could result in life-altering decisions.  I also know that those feelings might not be real, and until the fog lifts I will hold those thoughts.  Thoughts are not facts.

To anyone who has ever suffered, or is suffering still, I hope you find your own way to mend.  There is help, but it can often be hard to ask for it, sometimes even harder to find.  I talk candidly about myself and my experiences now.  I haven’t always.  When I started this blog I was too afraid to make it public for fear of judgement.  But this last year has taught me some lessons about not holding back, so now my heart is firmly on my sleeve for all to see.  Judge, don’t judge.  It’s not important to me anymore.  And if I ever offend with a too glib portrayal of mental illness, please know that a) I only describe what mental illness means to me, how it has affected me, and b) that humour has often been my way of handling the most negative of situations.

One in four people will suffer with a form of mental illness in any given year.  Take a look round you, at your family, your friends.  If it’s not you, it could be one of them.  Be kind, always, because you never know what personal struggles other people may be facing, even when they seem to be wearing a smile.

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All I need

You are all I need Peanut.  Sure, there are other people that make me happy, but no-one has the power to make the sun shine through the rain like you do.  For me, you have become a symbol of strength and love, and a living example to all of us that we really should grab this life with everything we’ve got, because there really are no guarantees.

Quite often that makes me sad.  I can’t help but wonder what your future holds; sometimes I wish I had a crystal ball so I could see your life unfold and be happy that this thing isn’t going to get you one day.  But I guess there’s no fun in that is there?  So I have to hold on to hope.

You have a cardiology appointment next week, sweetheart.  I always find myself a little more melancholy than normal, and a bit more anxious that I usually am, as the date approaches.  The problem with me, is that I like to be in control.  And this most definitely does not allow for me to have control.  None.  I don’t expect the appointment to give me any surprises.  Not bad ones anyway.  Your condition, if it gets worse, is unlikely to get worse any time soon.  We may even be blessed with improvement, but let’s not jinx things, eh?  The best I can hope for is no change.  And even then, it’s a limited view.  What’s frightening is that we only know what we can see.  An echocardiogram can only show us about 3mm into your arteries.  Beyond that you need an MRI scan, but they have no plans to go looking yet.  I wonder why?  Maybe because you are so young, it would be preferable not to sedate you. I have to remind myself that the only reason you didn’t need to be sedated for your last MRI was because you were too sick to care.

I think, to all intents and purposes, we could be bold enough to say you are out of the woods for now.  Can I say that?  Should I say that?  The scientific part of my brain keeps telling me that the only thing that can cause you any problems is biology; my words will not be the cause.  Thoughts are not facts.  For now, I have two questions for the Cardiologist.  “What will I need to do throughout her life to protect her heart?”  and “Remember when you took me in a room and told me about the risk of a coronary aneurysm rupture, and how you told me that you could do nothing to prevent it, and that if it happened she would be gone?  Well, do you think that is a risk now?” Let’s see if we can get some questions answered next week shall we? So you will need to behave yourself.  You won’t! You’ve been trying to take over the echo since all this started; next week you are going to be rolling, and grabbing, and trying to crawl off the table!  Things just got interesting!

So it’s just dawned on me that I never had one of those baby books, the kind where you write all the milestones down.  To be honest, I had books with your brother and sister, but the novelty wore off a few weeks in and there are two half-finished (half-started?) baby record books gathering dust in the loft.  And then I thought I could do it here.  So let’s see, what can I tell you about you….

You have been sitting up for a while now.  For some time it seemed like you were never going to get there, but you did.  Your preferred mode of transport continues to be the ‘commando crawl‘ – you’d be fantastic on one of those military assault courses! And you’re fast Peanut, real fast! When you spot something you want, you can be at your target in a nanosecond.  I have to be on full alert – generally the thing you spot is something you shouldn’t have and everything goes in your mouth.  When I thought I’d cleaned up all the pine needles from the Christmas tree, you still somehow manage to find them.  And eat them.

You have a real sense of fun.  You are going to be like your brother; full of mischief.  You are always doing something, always busy.  You’ve just started getting up on your knees too, which means more of the world is within your reach, and I can see how exciting that is for you.  You are always in my kitchen cupboards, always pulling books off the bookshelves, always finding the one thing amongst all the other things that you are not allowed to have.  You are going to keep me busy!

You have a few words in your vocabulary.  “Daddy” has been a favourite for some time.  There’s something very cruel about ‘dadadadada’ being the easiest sound for a baby to make.  You’ve said a clear as a bell “Mama” once.  It was magic.  You’ve not said it since.  Your absolute favourite is “Uh-oh”, which was remarkable when you first said it because it alerted me to the fact that you had dropped something, like that time you dropped your toy in Marks and Spencer and I wondered why you wouldn’t stop saying “Uh-oh”.  Now it seems that “Uh-oh” is a catchall word for everything.  I think it means you are hungry, thirsty, tired, sad, angry, happy…it’s a one word fits all kind of thing!  I’ve been able to make out a few other discernible words; doggy, dinner, bye-bye.  You know your sister.  She’s Eliza.  That’s “a-la-la” to you.

And you laugh sweetheart, you really laugh.  Just a couple of weeks ago, we needed to tickle you to incite a giggle.  Now you laugh at everything and everyone! You laugh at trees and flowers, birds and cats, me, your dinner, everything! Just the sight of those tickling fingers coming your way and you are reduced to an uncontrollable cackle.  You see joy in most things, and you are slowly teaching me to do the same.

But, it isn’t all hearts and flowers my little cherub.  There is one thing that is currently driving me crazy, and that’s the scream! You have developed a squeal that would rival any dolphin, and brings half the neighbourhood’s dogs to our doorstep.  I think, roughly translated, it means “Hey, you, why are you not giving me your 100% total undivided attention right at this very second and every second after it?” but I don’t talk baby, so who knows if I’ve got that right.  Most mums could probably ignore it.  Unfortunately, I suffer with anxiety, and have real trouble with noise, so that little scream goes right through me and rings in my ears.  Let’s hope it passes soon (either the screaming or the anxiety – both would be nice).

You do still hold the title of ‘Epic Sleeper’, and if I didn’t know you were real I would start to wonder if you were some kind of clockwork toy.  I’ve looked for the key, I can’t find one.  The daylight hours are short with you Pickle.  You wake around 7am (sometimes later), nap for anything up to 2 hours at about 10am, and from 4pm to 6pm your constant squawking acts as a reminder that it is nearly bedtime.  6pm comes, you’re milk-drunk and sleepy and off you pop to bed, and we don’t hear a peep from you ’til morning.  So, on a 2-hour-nap day, I figure we get about 9 hours of you.  The thought of going back to work and that becoming 1 hour is unfathomable.

I don’t know if you will ever remember this time in your life.  I hope you don’t. Your first year has been blighted with illness, fear, hospitals, and me.  And when I say me, I don’t mean that I’m not a good mum to you.   I shout sometimes because the anxiety builds up inside my like gas in a pop bottle, and sometimes your brother or your sister, or a noise, or a setback, shakes me up just a little too much and the lid blows off.  And I am often sad.  I cry.  A lot.  I can’t tell you that I love you without tears pricking my eyes; I hope you don’t grow up associating love with sadness.  Sometimes when I look at you for too long, your face becomes the face of that tiny baby pleading with me with her eyes.  I don’t sleep that well either, because I’m always straining to hear you breathing on the monitor.  When I wake, it feels like I have slept holding my breath, and I am frozen in my bed until I hear a shuffle or a snuffle from you.  I am sure all this will pass, and I am getting help for it so that I can get this under control before you do start to notice that mummy is always sad.

It is lucky, then, that I adore you.  You are a pleasure to be around (which is lucky indeed, as you are the only person I see very much of!).  If  you were a different baby, I reckon I’d have cracked up by now.   But you, my dearest Freya, are the light in the darkest of days.  Sometimes, you look at me with those ocean deep eyes, and it’s like your very soul is speaking to me; “I’m gonna be ok mummy.”  

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An Exercise in Mindfulness

mindfulness
ňąm Ć…™n(d)f( ä)ln…ôs/
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.

Flashbacks and Intrusive Memories

As we move further away from the traumatic experience we had with Freya during the acute phase of her illness, it seems that I become more and more affected by what we went through. ¬†If you’ve been reading my blog you will know that I recently received a loose diagnosis of PTSD, and am about to embark on treatment for that. ¬†I was given a choice in relation to the treatment that I wanted, based on which element of my current state of mind that I wanted to tackle. ¬†I can have talking therapy to help me get out all of my thoughts and feelings, or I can have specific behavioural therapy and EMDR to deal with the flashbacks. ¬†I still don’t think I really know what route I want to take; I think I’d like to have the opportunity to do both. ¬†We will have to see about that at my next appointment, I guess.

I’ve had a week or so of feeling pretty positive about life in general, getting to grips with the Christmas shopping and starting to look forward to the festive season, but at around 4am this morning, my happiness was rudely interrupted by memories of darker days. ¬†But what is a flashback? ¬†And what makes it more than just a bad memory or an intrusive thought? ¬†I experience all three of those things, and I’m starting to recognise the difference.

Freya awoke at around 3am this morning, which is unusual for her as she usually sleeps through without a whimper until about 7:30am. ¬†Some would say we are lucky it is unusual – the problem with that though, is that I’m just not prepared for it and don’t really know what to do when it happens. ¬†Do we ignore, and hope she goes back off to sleep? ¬†Should I change her nappy? Feed her? Take her into our bed? ¬†I chose to change her nappy, and cuddle up with her in my bed in the hope that she would fall back to sleep. ¬†After about an hour of convincing herself that 3am was the new playtime, Freya yawned! I seized the moment, and placed her back in her sleeping bag in her cot, which is still by the side of my bed (I haven’t quite reached the point where I am ready to put her in her own room). ¬†Despite it being an unearthly hour, I switched on the butterfly that casts stars across the ceiling, and squeezed the tummy of the seahorse that would hopefully sing her to sleep.

And then it happened.

Lying there in the dark, with the outline of her cot just visible in the moonlight and that seahorse playing all too familiar lullabies, I was engulfed by a wave of nausea, and I felt the wetness of tears rolling down the side of my face before I had time to realise that I was crying. ¬†My throat closed up, and I felt that my breath was caught somewhere in between my stomach and my lungs, and I thought I might actually be sick. ¬†Suddenly, I wasn’t in my room anymore. ¬†I was in a hospital cubicle. Cold under the hospital-issue blankets, I pulled them up under my chin and shivered. ¬†Freya was wearing just a nappy and she was so, so hot. ¬†She lay in a nest of blankets made both to make her feel secure, and to stop her from sliding down the cot which was raised at one end. ¬†She hadn’t needed anything to soothe her at home; all she needed was me. ¬†In here it felt like she needed something of her own that she could become familiar with, and so I had instructed her Daddy to buy the pink seahorse on the way to visit at the hospital one morning, and at every nap time and bedtime it’s little tummy would get a squeeze and soothing melodies mixed with sounds of the sea would pour out as it glowed reassuringly in the darkness.

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She’s gasping for air, but she won’t open her mouth. She looks like she is drowning. ¬†Open your mouth sweetie, open your mouth. ¬†I panic, jump up, hit the red button, a nurse appears. ¬†A face mask is fitted, attached to a saline nebuliser to help clear Freya’s nasal passages, and she settles down.

I don’t want to wake up. ¬†I don’t want to wake up because I am convinced I am going to see her there, looking at me with a faraway stare, lost and frightened and too sick to smile. I don’t want to wake up, because I know it won’t be long before they come to take more¬†blood and she will cry until they’ve squeezed enough to fill 4 vials out of her little heel. ¬†I don’t want to wake up because today I will be too scared to pick her up in case I upset the cannula in her ¬†head, or her wrists, or her feet. ¬†I don’t want to wake up because we will be alone and scared.

I wake up. ¬†She’s crying. ¬†That’s unusual for Freya; we are usually woken by beaming smiles and sounds resembling a bright “Hiya!” from her cot. I open one eye, she sees me. ¬†She smiles. ¬†She is snug in her sleeping bag, pink from the warmth and she looks at me with sparkling eyes. ¬†Eyes that say, “We’re home mummy, we’re okay.”

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.

Our broken hearts

My dearest Freya

I haven’t written to you in a while, your journey has been continued through my blog and I mostly write to whoever is out there reading your story. ¬†But today I found myself missing my imagined conversations with you and felt compelled to write.

I spend most of every day with you, my darling, and every day my love for you grows more and more. ¬†You are an inspiration to me, and you leave me awestruck. ¬†I cannot look at you without marvelling at how far you have come in such a short time. ¬†On Saturday you will be 6 months old. ¬†Just 6 months! It is hard to comprehend what¬†you have been through, and I have to pinch myself to believe¬†that you are still here. ¬†And you are still here, despite this nasty disease’s best attempts to reach a less favourable outcome. ¬†But despite the fact that you are doing so incredibly well, I cannot help the anxiety I feel for the eternity of fog that lies before us.

I read stories about KD all the time. ¬†Every day I see comments from parents of children who have suffered, or are still suffering at the hands of this disease. ¬†I feel the fear in their words. ¬†Sometimes, like today, there will be a post from a parent who wants to share the news that their child, so many years after KD, has had a clear echo, or is surviving against the odds and sticking two fingers up at Kawasaki Disease. ¬†Those stories are great, but they also act as a reminder that this never really leaves you. ¬†There are daily posts from parents airing their concerns about the perceived after-effects of KD; behavioural problems, anxiety, joint-pain to mention just a few. ¬†Reading those comments, I wonder what will become of you? ¬†I don’t know if it is a blessing or a curse that you are so young? ¬†I will never know how KD shaped your personality because you didn’t have one before it got you. ¬†What I do know, is that it feels like I will have such a long time to wait to see the real long-term effects of the disease on your body and mind. I can be thankful that you shouldn’t feel any anxiety as a result of your illness. You have no idea how close you came to leaving us; you have already forgotten what KD did to you. ¬†I don’t think I will ever forget.

I want to though. ¬†I want to be able to live our lives without that dark cloud looming above our heads, threatening rain. ¬†I want to be able to flick the switch that will stop the last few months playing over and over in my mind like a DVD on repeat. ¬†I want to look at you and see your sweet, beautiful face¬†looking back at me, not the lost little face that is etched in my memory. ¬†I want to muse about the future without the niggling doubt that there might not be one. ¬†And that’s not because I think you are going to die, because I know that you are doing really well sweetheart. ¬†It’s just that I dare not say it out loud in case I jinx it and set in motion a whole new twist of fate. ¬†It’s true that there is nothing certain about life, but mostly people go through life taking it for granted that it¬†will last forever, or at least for a very long time. ¬†Of course, a life can be taken at any time, and it wasn’t in anyone’s plan for this disease to take you when it had its strongest chance. ¬†I had never thought about death as a real possibility before. ¬†Now I think about it all the time.

I know it will get better. ¬†I know that every day we move further away from the diagnosis is a day closer to healing. ¬†And I am sure when you have had your next follow-up appointments in November I will gain some more comfort for our journey. ¬†It seems like such a long time to wait, and I wish there were a way I could see right through your little chest into that heart of yours. ¬†That’s the cruellest ¬†thing about this disease. ¬†On the outside you look like any other baby; happy and healthy, with little rolls of fat on those chubby thighs of yours, and a rosy flush to your cheeks. You can do everything you should be able to; you can roll over onto your front (mostly when I’m not watching, cheeky lady), and you chatter away all the time (this has most recently developed into a high-pitched scream whenever I am not paying you any attention!) ¬†But in there, something is happening. ¬†Probably good things, maybe nothing, but something. ¬†It is completely out of my control, and is a constant threat and source of anxiety for me.

One day we will sit and chat about all of this, and you will laugh and tell me how silly I was to worry (don’t tempt¬†fate, don’t tempt fate). ¬†Oh sweetheart, I am sorry for writing in such a negative way. ¬†I ought to be telling you how strong you are, and how great your life is going to be.

I went to see my doctor today. ¬†You came too. ¬†I was hoping you would stay asleep so I could keep you in the car seat with the rain cover on, acting like some kind of immunity bubble. ¬†I hated that you were there with me, in that place full of germs, but I felt that if I took you with me maybe the doctor would fall in love with you and advocate for you as much as I do. ¬†I want them to agree to prescribe your aspirin so that I don’t have to keep facing the battle at the end of every packet. ¬†I felt like if they saw you, there would be a more personal connection and they might fight harder. ¬†The doctor appeared unmoved. ¬†I told the Doctor that I believe I may be suffering from post-traumatic stress disorder, and that as time goes on I am noticing some of the signs of ¬†an old ‘friend’ that I thought I’d managed to banish from my life. ¬†He asked what I had in mind, and suggested antidepressants. ¬†I’ve declined that for now, and asked to be referred for talking therapy.

I have so much hurt inside that I could lock myself in a padded room and just scream until there is nothing left. ¬†I am not what most people would describe as depressed (but then, how many people get that right anyway?!) ¬†I function pretty normally. ¬†I get up in the morning, shower and make myself presentable (in my humble opinion!) ¬†I change you, dress you and feed you, and I run around after your brother to make sure he is ready on time for the school run. ¬†I smile and chat to the other mums in the playground, and I genuinely enjoy seeing other people. ¬†I don’t cry all the time, but I cry a lot. ¬†It used to be that I just cried when I thought about all of this. ¬†Now I cry over a¬†lot of other things too; like things I see or hear on the news. ¬†Yesterday, an 11-year-old boy in America shot an 8-year-old girl dead. ¬†That made me cry. ¬†I’ve started chewing my fingers again. ¬†That’s a sign of anxiety for me. ¬†And I’m angry and sad, and irritable and irrational all at the same time, which is exhausting.

It’s like my insides are all tied up in knots, and I feel like I am constantly holding my breath. ¬†I thought that writing about all of this would make it all better; that in some way it would be like self-help. ¬†It hasn’t worked out quite how I planned. ¬†I text my¬†kawabuddy¬†pretty much every day, and that makes me feel better because I know she understands how this feels. ¬†And yesterday we went to Nottingham to meet a lady who founded the Kawasaki Support Group here in the UK, and she still remembers how this felt for her 20 years ago. ¬†I think everyone else probably thinks I should just get over it and move on; that you are better now. ¬†You are here. ¬†I know I should too, but this disease is full of surprises and it’s like I am waiting for its next move.

The fact is that somewhere in between the 31st May and the 12th June my heart broke. ¬†I can’t say when the damage actually happened, perhaps around the same time that it happened to yours. ¬†What I do know is that, like yours, it is slowly repairing. ¬†But it remains¬†broken. ¬†I have sought help to heal it, but accept that it may never heal completely and there will always be some small part that Kawasaki’s killed; the part that believed that I could protect you from anything.

I loved you from the very second you were born into arms that shook with fear that they might hold you too tight.  I love you more today than I did yesterday, and I shall love you even more tomorrow.  Your smile will help to mend our broken hearts.

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Are we ok?

Two of the most common questions I get asked these days are, “Are you ok?” and “Is Freya ok now?” ¬†I’m not sure I know how to answer either of those things, so usually the first question gets a, “Yeah, I’m good thanks.” and the second receives a “Erm, yeah, kind of” response because I’m genuinely not sure what I should say.

Let me try to address the second question. ¬†Is Freya ok? ¬†She is clinically well. ¬†She has no symptoms of any illness, no inflammation, no fevers, no rashes and no pain (as far as I know; she’s too little to tell me). ¬†She feeds well, is growing nicely and has taken to weaning like someone who has just come off a diet. ¬†She rarely cries, and when she does complain it is usually to tell us that she has a dirty nappy, is hungry or tired. ¬†She goes to bed between 5pm and 6pm every evening without exception, and does not make a murmur until she wakes around 7am the following morning. ¬†And when she wakes, she will lay in her cot looking around and cooing to herself quite happily until we greet her with the customary “Good Morning!” and are met with the brightest of smiles which only disappears when she is devouring her bottle! ¬†During her waking hours, she is happy to lie on the floor or on her play mat, or sit in her chair, where she will play until she’s tired or hungry. ¬†If she gets tired she might whimper a little but often falls asleep right where she is playing. ¬†She has a smile for everyone, and she makes it possible for me to smile despite all of our recent troubles.

That said, she has a heart condition as a result of her illness. ¬†Kawasaki Disease is a vasculitis; a response in the body which causes inflammation of every blood vessel, with a particular penchant for the heart. ¬†The coronary arteries supply blood to the heart muscle. ¬†These arteries will become involved in 25% of Kawasaki cases. ¬†Treatment within a 10-day window significantly reduces that risk to around 6%, but for those of you that have followed our story you will know that Freya wasn’t diagnosed until day 13 of her illness and her heart suffered. ¬†There are 3 main arteries that supply the heart; the left coronary artery (LCA), the right coronary artery (RCA) and the left anterior descending (LAD). ¬†At the time of her diagnosis, all 3 of Freya’s coronary arteries had dilated (expanded) to over 5 times the normal size for a baby her age. ¬† The risks associated with that are rupture, (where the artery wall gives out through weakness as a result of the expansion), and thrombosis (where the blood is allowed to clot within this new expanse). ¬†At Freya’s age it was considered inoperable; a graft of the vein in the ankle is taken to replace the coronary arteries, but in an infant the success rate is poor. ¬†Plus, as the baby grows they run the risk of outgrowing the new arteries, resulting in further coronary complications. ¬†All they can do is administer the treatment (in Freya’s case, 2 doses of intravenous immunoglobulin, high dose aspirin, steroids and a single dose of intravenous Infliximab) to stop the inflammation in its tracks, and then regularly monitor the arteries to ensure there ¬†is no further growth. ¬†And hope. ¬†Once that is under control, a child will usually be prescribed with a blood-thinning (anti-platelet) dose of aspirin and, in some cases, an anti-clotting (anticoagulant) agent like Warfarin. ¬†Both of those, in¬†slightly different ways, work to keep the blood flowing through the arteries, and to stop the blood from clotting. ¬†Thrombosis would result in a heart attack.

Freya has shown remarkable progress, receiving a few “Wow!”‘s along the way, and even a message from Professor Jane Burns (a KD specialist in the States) saying “I expect she is safe and fixing the problem on her own. Well done, Freya!” ¬†The arteries are now only 3 times the size that they should be, and we hope that they will continue to regress to normal size over the coming months/years, or that Freya will grow into them as she grows. ¬†There is a risk as the arteries start to repair themselves, that the scar tissue causes stenosis; a narrowing of the arteries. ¬†This can be treated with surgery in later life (you may have heard of a stent), but if stenosis occurs it can severely affect the function of the heart and is potentially fatal. ¬†We do not yet understand if this is a risk for Freya, nor do we know what the long-term impact this disease will have on her, due to the absence of long-term studies.

And then we have the question of her immunity. ¬†Her immune system was temporarily suppressed by certain medication, such as the steroids and Infliximab. ¬†However, the immunoglobulin contains antibodies from thousands of blood donations and should cover Freya from most routine illnesses (and a few more weird and wonderful ones) for around 11 months from receiving it. ¬†She has had no routine immunisations, and the advice (well, the most reliable advice anyway) that I have received is that she can have the killed vaccines approximately 3 months post-treatment (for Freya that is the 8th October), and any live ones once the IVIG is out of her system (approximately 11 months after treatment; June 2016 in Freya’s case). ¬†For patients taking regular aspirin, there is a risk of developing Reyes’ Syndrome if the patient comes into contact with Chicken Pox or Influenza. ¬†Although the risk of developing Reyes’ is rare, and is more often associated with patients on high doses of aspirin, it is a very nasty illness which affects the brain and can be fatal. ¬†As a result, it has been recommended that Freya be given the Chicken Pox and Flu vaccines, but that she would have to stop taking aspirin for a period of time surrounding the immunisation being administered. That is probably my biggest cause for concern at the moment; how the hell do I protect her from Chicken Pox and Flu until next Summer?

Is she ok? Yeah, I guess she is. ¬†She is not considered to be in immediate danger (from a cardiology perspective). ¬†She will continue to take her daily dose of aspirin, probably for life, and will be monitored into adulthood. ¬†You really wouldn’t know that there was any problem with her heart at all to look at her – she really is a wonderful baby. ¬†But Kawasaki Disease is full of surprises and unknowns and shades of grey, so we just have to take each wonderful day at a time and hope.

Am I ok? ¬†That depends on when you ask me, I guess! Or the circumstances in which I am asked. ¬†I’m not sure that everyone that asks really wants to hear more than a “Yeah, I’m good thanks!” with that Invisalign smile that I’ve perfected over the years. But do you know what, I really am ok. ¬†Ok isn’t brilliant, is it? ¬†Ok isn’t absobloodylutely fabulous.¬†Ok is just ok. ¬†Not good, not bad. ¬†Maybe up, maybe down. ¬†Some people will worry that I may be suffering from depression, particularly since I have some history. ¬†This isn’t that. ¬†I get up every morning with a spring in my step. ¬†I get a shower, make myself presentable to face the world. ¬†I do the school runs, I iron, cook and clean; I function on a day-to-day basis just like any other mum would. ¬†I spend most of my day playing and chatting with Freya (I mean who wouldn’t want to do that? ¬†You’ve seen her, right?!) ¬†We go out when we are organised, we stay home when we’re not. ¬†Apart from staying away from playgroups and nurseries, we are not inhibited in any way.

With the avoidance of the aforementioned child-filled establishments comes a sense of loneliness. ¬†I love spending time with Freya, but my world is mostly just me and her. ¬†We rattle around here and there while I try to make the best of the hours we have together, but I miss having other people to talk to. ¬†I’m an incredibly sociable person, I thrive in a group, and I stumble when I am left alone for too long with my thoughts. ¬†That’s why I try to get out and about, rather than staying indoors where I have too much time to think. ¬†I don’t know how best to describe how I feel. ¬†I feel kind of numb, like every moment I spend out there in the world with Freya is surreal, like I can’t quite believe we are doing normal everyday things where other normal people go to do normal everyday things. ¬†Maybe that is just it. ¬†Maybe this is normal, but that it seems that Freya’s illness has been part of our lives forever so I don’t remember what normal really is. ¬†And then I’m scared to let ‘normal’ in, because what if I forget? ¬†What if I start to take things for granted? What if Kawabloodysaki’s comes up behind us and shouts “Boo!” just when we are least expecting it?

A friend recently suggested I might need some help to get through this. ¬†At the time, I dismissed the concern. ¬†I knew it wasn’t normal to cry as much as I did (still do), or to feel the anxiety that I had (still have), but there wasn’t anything normal about this situation either was there? ¬†So I plodded along, dealing with it in my own way with a watchful eye out for signs that this was becoming something bigger than I could handle. ¬†With each day, and with every bit of good news we receive about Freya, I expected the pain to start to dwindle. ¬†If anything, it has grown. ¬†It’s like now that we are out of the worst, and the adrenalin that kept me going for all those weeks has stopped coursing through my veins, things have finally started to sink in. ¬†What do I feel the most? ¬†Anger, sadness and disbelief. ¬†I am angry that Kawasaki Disease chose my¬†daughter. ¬†I am sad that Kawasaki Disease stole some of what should have been the best of times with my new baby girl. ¬†And I still feel utter disbelief that this happened to us.

I have an appointment with my GP on Wednesday 7th October at 9:30am. ¬†It’s time to get some help.

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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 blas√© 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.

Sunny with a chance of rain

Today I took my daughter to Haworth, home of the Bront√ę sisters. I have always been a fan of classic literature, with Austen and the Bront√ę’s being right up there with my favourite writers. In fact all of my children are named because of my love of literature; Eliza (as in Bennett, Pride and Prejudice), ¬†Finlay Austen (as in Jane) and now Freya Ellis Belle (for those of you that don’t know, Emily Bront√ę, author of one of the worlds most renowned classics Wuthering Heights, wrote under the name of Ellis Bell for a time). ¬†Of course I was indulging myself with this trip, but I thought that while I am on a quest to make special memories with Freya, memories that will wipe out the ones I have so far, what better place to start than in the place that my inspiration called her home. It was going to be a wonderful day out, and Freya would surprisingly love it too; she was going to share my love of literature as a result of this early exposure. Oh how we kid ourselves!

In reality, the day didn’t start very well. ¬†Having taken a look at the Bront√ę Parsonage Museum website last night I became aware that the quaint old village of Haworth wasn’t really built for my ultra-modern pram (or anything with wheels for that matter). ¬†The streets are cobbled, and the house itself has a steep staircase that renders it impossible to manoeuvre with any kind of vehicle. I needed a baby carrier and would have to try and get one before I set off on our road trip.

After I dropped my son off at school this morning, I drove to our local Mothercare. ¬†There were about 8 different types of baby carrier on the shelf and I set about making an informed and practical decision (otherwise known as picking the nicest colour). My eye was drawn to a sling type carrier in a fetching lilac. ¬†Having asked if I could try them on, I removed it from the box and tried it on. Hmm. I have no idea how a baby is meant to be carried in one of those things. I even took Freya out of the pram for a dummy run but daren’t let go of her once I had her in it. The member of staff didn’t seem to know much about how it should fit so I decided to give it a miss. Bored of being in her pram, and now particularly peed off that I’d taken her out and put her back in again, Freya started whinging. And then crying. And then screaming. ¬†I knew she was not in need of anything – she had not long had breakfast, and had a clean nappy on – so I continued to look at the other brands and styles on the shelf.

Now, I’ve never been very good with noise, particularly when I’m feeling a little anxious. And the more noise Freya made, the more anxious I became. I took another carrier out of the box but it looked like you would need a degree in engineering to work out how to get it on. I struggled for a bit, but the more I tried to read the instructions, the more Freya cried and my anxiety grew. I had such high hopes for our day and these minutes in Mothercare were minutes I couldn’t afford to lose with a 90 minute drive ahead of us. By the time a member of staff came to assist, I was in tears on the floor of the shop with open boxes around me, trying to make sense of the instructions. ¬†The lady was really sweet, and did her best to help me into the one I had chosen. Freya was still screeching. ¬†I was so embarrassed by my little meltdown that I just said I’d take it. I asked her to box it back up and take it to the counter while I took Freya to the baby room to change her and feed her. Cue stupid moment number 2 when I had to come out 2 minutes later having realised that I had left all our paraphernalia in the car not expecting to be in the shop for as long as I was.

Drama aside though, I don’t know how you are supposed to safely put a baby in a baby carrier by yourself, and I’m glad I didn’t just pick one up and walk out of the shop without trying it out first.

By 10:30 we were finally on our way, and although a little shaken by my emotional outburst in the baby shop, I began to look forward again to our little trip. I’d picked a nice day for it and the sun shining as we left. ¬†As we got closer to Haworth though, the heavens opened, and I couldn’t help but smile at how fitting the weather was as I drove over the Yorkshire Moors, picturing Cathy and Heathcliff running for the shelter of a tree.

The sat nav kindly sent me around the block a couple of times before I found the car park, but I found it and I got easily parked. I decided to get the pram out of the boot as I had an idea that the village wasn’t far and I’d get the chance to scope it out with the pram and come back to the car if I needed to. The Tourist Information office advised me to ditch the pram, even offering to let me leave it in their shop. I took it back to the car, got Freya into the carrier with surprising ease and walked back into the village.

I’ve been feeling quite tearful and overwhelmed by things these days, and today was no exception. I had tears in my eyes as I walked through the village, chatting to Freya held close against my chest. We arrived at the Parsonage Museum (which has its own car park, doh!) ¬†and went inside. The man on the door was lovely and chatted to us before we had a chance to move on. He thought that it was lovely that we had named Freya after Emily, and that I had taken her there specifically to make some memories. ¬†I walked slowly and thoughtfully around the house, taking everything in. I was particularly taken by the artefacts, especially the portable writing desks belonging to Charlotte and Emily with all their trinkets. Makes you feel closer to them somehow, which is strange because they died so long ago. One of the curators came over to speak to Freya and remarked that she was about the same age that Anne Bront√ę was when the family moved to Haworth, and said how nice it was to hear a baby in the house. ¬†She pointed to a room across the hall, labelled ‘Charlotte’s Room’ and said that Anne would have probably had that room when she was brought there and that it might be a nice place for me to look with Freya. It was in fact the room in which Charlotte Bront√ę passed away, and I felt an incredible sense of sadness as I stood looking at a painting of her above the fireplace. I stood there for while, Freya stared too. And as I rocked from side to side taking the picture in, Freya drifted off to sleep.

IMG_0826I finished off the tour, and bought a few things in the gift shop including a copy of Wuthering ¬†Heights which I planned to write an inscription in for Freya. I don’t know why my heart felt so heavy as we left. Moments like these with Freya are more special to me than any other moments in my life. I know that might sound bad because I have a husband and two other children; they are special to me too. But time with them tends to be moments of madness, of getting ready for school, of bedtime routines. I have become quite accustomed to just being with Freya. We are like two halves of a whole who are only truly content when we are linked together in some tender moment. She stares, so intently sometimes that I wonder if she can see into my soul. And I’m reminded of an earlier post, “cleansing the soul” that I wrote before all this, before KD.

I am hoping that the dark cloud that follows us whenever we are trying to make new memories is something temporary, a symbol reminding me of the trauma we have been through together. Perhaps when I’ve started to get some support with how I’m feeling that grey cloud will start to dissipate and we will be allowed to have sunny days without the threat of rain.

Freya’s Story (18)

I’ve just been sat posting pictures on http://www.facebook.com/freyasstory of our afternoon at Clumber Park with Freya. ¬†I called the album ‘Happy Days’ with a tagline of ‘Making Memories’. ¬†We look like any other family having fun times with a picnic and a selfie stick, and we were just that. ¬†So why is it that I feel a huge sense of sadness looking back over our day? ¬†And if I am truthful, even during the afternoon when we walked smiling through the grounds, I couldn’t help but be aware of the small dark cloud following us. ¬†It seems that even good days are tinged with sorrow. ¬†I wonder if we will ever feel completely normal?

Generally things are good. ¬†I’ve told you that we’ve become accustomed to our new ‘normal’, and that actually we are just getting on with life as we would have done before all of this happened. ¬†Well almost. ¬†We would have been to more places, seen more sights, we would have definitely been abroad for a lovely holiday in the sunshine. ¬†We would have made plans without limitations, had things to look forward to.

The thing with Kawasaki Disease is that it is a¬†silent, deadly disease, often pretending to be something it is not. ¬†It hides just beneath the surface, choosing to send symptoms to the fore one by one, just to keep the Doctors guessing. ¬†Sometimes it chooses for a symptom not to materialise at all, throwing it in for good measure when it’s too late to make a difference. ¬†You can think it is gone, and a after a couple of days of relief that the KD journey might be over you start to see the symptoms creeping back; a rash, a fever, something else. ¬†And so you are always on high alert, watching closely to make sure Kawasaki has had it’s day.

I wonder though if I will ever just change Freya’s nappy, without checking over her body for any sign of a rash developing. ¬†Whether I will stop feeling my heart jump into my throat when I see a spot that could be the start of something. ¬†I wonder if I will always have to will myself not to fetch the thermometer every time her little cheeks flush. ¬†I wonder if I will always catch my breath when she suddenly cries out, concerned she may be ailing for something that I cannot see. ¬†I wonder if I will ever be able to quiet the voice that tells me to be cautious about loving her too much. ¬†And I wonder if I will ever be able to watch her sleeping without the thought creeping into my head that she looks as peaceful as she would if she were dead.

I’m sorry if that sounds morbid, and if it’s not the kind of thing that you want to hear, but it is the reality and I promised myself and my followers (those few!) that I would always be candid. It’s how I feel today, and it is just one of the dips on the rollercoaster that is life with Kawasaki Disease. ¬†You try to be positive, and focus on all the great things and reasons to be cheerful:

  1. The inflammation was stopped in its tracks and has not returned
  2. There have been no return of the most obvious symptoms
  3. Freya is a happy, contended baby who is thriving; feeding well, sleeping well – all signs of a healthy baby
  4. The coronary complications are improving at a surprisingly fast rate – right coronary artery has normalised, and the aneurysm in the left coronary artety has reduced from over 5mm during the acute stage to around 3mm at the last echo (1-2mm is the normal range)

You see, I’m not just being a ‘neghead’. ¬†I am fully aware of all the things we should be grateful for, and we have much to cling onto that suggests that Freya will recover from this. ¬†But (and it’s a big but) as much as the Kawasaki Support Groups on Social Media sites are generally helpful, every day I see posts from parents asking whether anyone has noticed this symptom or that, whether years after KD anyone’s child has had trouble with joint pain, behavioural problems, skin issues. ¬†And every post sees replies from tons of other parents saying yes! yes they have seen those symptoms, and what’s more they’ve also seen rashes and temperatures and all manner of other symptoms since their child suffered with KD. ¬†Most of the time it is useful to read, and it is a community from which I draw a huge amount of support. ¬†I mean, no one can truly understand how this feels unless they’ve been through it. ¬†But these kinds of posts are the ones that affect my positivity the most. ¬†I try to be logical about it. ¬†Mostly I think that we cannot ever know what future symptoms are related to Freya’s battle with KD or just symptoms that she might have had anyway. ¬†My other children sometimes get ill, they get rashes, temperatures, aches and pains, eczema; neither has ever had KD. ¬†So it stands to reason that at some point in Freya’s life she will get ill, but it is more than likely going to be unrelated to her condition now. ¬†I remember one of the consultants making a similar case when we were re-admitted after Freya started bleeding. ¬†He said that because of the rarity of Kawasaki Disease, the medical staff were on high alert for weird and wonderful things that could affect Freya, and that whilst they were making the assumption that all of her symptoms were connected to the disease, they were forgetting that she was a tiny baby going through many developmental changes. ¬†Perhaps the gastrointestinal bleeding really was just a cow’s milk allergy and nothing else. ¬†But even if I wanted to dismiss all of those comments and posts as illogical or poor assumptions, it doesn’t take away the fact that when you have been through this you will always be afraid. ¬†The parents posting those statuses are crying out for help; for someone to tell them that they can stop worrying about KD making a reappearance. ¬†I don’t think we ever will though. ¬†Because we don’t ever want to experience the hell that is Kawasaki Disease again.

When I look back over the last few months, I still can’t quite believe how poorly Freya was. ¬†It’s surreal. ¬†Perhaps it was denial, a kind of self-defence mechanism? ¬†Maybe its just because she is doing so well that it doesn’t seem real looking back now. ¬†I look at the photograph of her when she was unrecognisable to me, she was so unwell, and I still can’t believe that it was her. ¬†I remember the day the Doctor told us she was a 10 out of 10 on a scale of how critical her condition was. ¬†I will never forget watching my baby girl go through test after test; daily blood samples, x-rays, lumbar punctures, ultrasounds, echocardiograms, bone marrow aspiration, MRI, a blood transfusion, a cocktail of drugs and blood products. ¬†I just can’t comprehend it. ¬†It was not supposed to happen to us, and although I know I should be thankful for where we are now I cannot be at peace with a disease that has stolen so much of my precious time with my daughter. ¬†I am fundamentally altered. ¬† I think I will¬†be forever changed.

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