Unlucky for some?

Two years ago, on this day, you and I shared something that forever changed us.  It was the day that both our hearts were broken.  Yours by a disease I had never heard of, and mine by the knowledge that your life would never be the same. 

It was Friday 12th June, you were 9 weeks old that day and you had been sick for 13 days.  Despite a cocktail of antipyretics and antibiotics, the fever continued to rage through your tiny body, and each temperature spike would see your heart rate soar to frightening heights.  The settings on the heart monitor had to be set far outside of normal levels or we would never have had any rest from it’s alarm, and the nurses maintained a close eye on you during those first two weeks.  By that time, you had undergone countless blood tests, two lumbar punctures, ultrasounds, x-rays, an MRI and a bone marrow aspiration.  Just a couple of days before this day your haemoglobin levels dropped dangerously low and you had to receive a blood transfusion.  That’s when I promised I would start giving blood as soon as we got out of there; a promise I have kept ever since.  I remember watching the blood travelling through those tubes incredulous that this was happening to us, to you.  I think I must have spent those first two weeks in a state of shock, it seemed so surreal.  How could you be so sick? 

It was after they gave you the blood transfusion that they came to talk to me about a bone marrow aspiration.  They didn’t need to tell me what they were looking for – there’s only one reason they wanted to get at your cells.  After the longest 3 hours of my life, where I was convinced that you were not going to wake up, they called to tell us we could come and collect you from theatre recovery.  Watching you go to sleep from the general anaesthetic was one of the hardest things I had ever had to do, and I hoped with all my heart that I would never have to see that again.  I cannot even begin to explain the relief when I saw you awake again.

The bone marrow test showed that your cells were healthy, and we celebrated that fact.  And yet that meant that you were really sick, and still nobody knew why.

That afternoon, on the 12th day, a Rheumatologist was asked to come and take a look at a rash that had appeared on your limbs.  He said that it was highly likely that you had an infection, and that there was a strong chance that you would get better and we would leave the hospital without any diagnosis; one of those unexplained things that we would eventually forget.  But.  But, he said, we ought to send you for another echocardiogram on your heart just to be sure.  Be sure of what? I didn’t ask.  Why didn’t I ask? I’ll always wonder about that.  In case you picked up on the word ‘another’, yes you are right.  You had already had a check on your heart earlier that week, on day 9, and it showed you had a murmur but nothing to be concerned about.  That echo was to throw them off the scent that the Rheumatologist had picked back up.

And so the day came.  The 12th June.  Day 13.  Unlucky for some.  

I took you with a nurse for your echocardiogram.  You’d had one before and there was nothing to worry about, so I just assumed this one would be the same.  Except it wasn’t.  And nothing has been the same since.  

That echocardiogram showed dilation of your coronary arteries, over five times their normal size.  Coronary aneurysms don’t happen to children.  Not unless they have Kawasaki Disease.  And there it was, on the 13th day of your illness, we finally had a diagnosis.  What a relief! That meant they could treat you, and you would get better, and we would go home and forget all about the worst two weeks of our lives.  Except then I had no idea that the damage wasn’t temporary.  Yes, they could treat the disease, but they could not reverse the damage that it had done to your heart.  We had to face the fact that one of, if not the most important organ in your body, was broken.

You were given a dose of intravenous immunoglobulin (IVIG), which is a blood product made from the antibodies from thousands of human blood donations, high dose aspirin, and methylprednisolone (intravenous steroids).  All the antibiotics were stopped – Kawasaki Disease is not an infection, but a vasculitis which causes inflammation through all the arteries in the body, with a penchant for little hearts.  The Children’s Hospital has every paediatric medical discipline under it’s roof, with the exception of Cardiology, and so they contacted a ‘nearby’ hospital with a paediatric Cardiology unit to ask for advice.  We were told that they had shared your results and that the Cardiac Unit was “not excited.” Apparently that was good news.  It meant that, whilst your heart was affected by the disease, it was not considered worrying enough to require more specialist care, and the children’s hospital continued to monitor your situation.  You had been so sick, and you were so young, that they didn’t take any chances, and you were sent for follow up echoes on Saturday and Sunday morning; no change.  No change is good.  And on Monday morning, you were sent for another.  Except this time, the nearby Cardiologists had reason to become “excited” and preparations were made for your ambulance transfer to the Cardiac High Dependency Unit, 36 miles away – but not before you had received a 2nd dose of IVIG to attempt what the first dose had failed to do.  Within 3 days of your diagnosis, your coronary arteries had dilated further and we would hear the word ‘aneurysms’ for the first time.

I’ve written many times about what happened next, and I hate to bring it all up again sweetheart.  It’s just that, despite my very best attempts to live ‘in the moment’, I must have left the door to this memory slightly ajar.  I didn’t mean to let it in, but it seeped through the cracks and it’s been like watching a scary movie through parted fingers all day.  No matter how hard I’ve tried, I just can’t help but relive those moments.  Today I feel all that pain, all over again.  I drove to Sheffield this evening on an errand, and felt the tears rolling down my cheeks.  I have never seen as many flashing blue lights on the motorway as I did tonight, jeering at me, forcing me to remember, and fleetingly I wondered how easy it might be to make that pain go away.  But then I remembered that you are still here, and it isn’t 2015 anymore.

And I guess as I sit here tapping away at the keyboard, I have to ask myself whether the number 13 really was unlucky for you.  Because despite the fact that your heart will never be the same again, I have to remind myself that the improvement we have seen has indeed proved them wrong.  In fact, I would go as far as saying that for you, 13 was very lucky indeed.  The decision that your doctors made on that day was one of the decisions that saved your life, I am certain of it.  I cannot even begin to imagine how differently things would have turned out had they not carried out that echo.  And I can be angry and sad for the rest of our days that they didn’t catch it earlier, but that won’t make the pain go away.

Today I will allow myself to feel the grief of loss for your perfect heart again, but tomorrow I shall remind myself of how full my heart is for loving you.  I cannot remain sad, when I am so incredibly lucky to have you here.

I love you Peanut.

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Best before 31st May…

Two years.  Don’t they go by in a blink.  It is hard to believe that two whole years have passed since that day in May 2015 that we will never forget.  Harder to believe that we are living a life more ‘normal’ than we ever could have imagined possible back then.  Back then it felt as though the bottom had fallen out of my world, and I was shrouded by a blackness that I thought would envelop me for ever. Today, it’s mostly sunny with a tiny chance of rain.  Today life is about as normal as it is ever going to get.  The last two years have been two of the most extraordinary of my entire life.  And you, my dearest Freya, my little “Peanut”, were the single most extraordinary thing of all.  Meeting you was like walking into the sun, and in spite of everything you went through, we went through, the clouds were never allowed to cast too large a shadow because your light burned through them like a flame through silk.

The past few weeks have allowed a melancholy feeling to settle around my shoulders like a familiar, almost comfortable wrap; two hands that placed themselves upon my shoulders, whilst a low voice whispered, “Remember me?”  It was a rhetorical question, of course I remember her.  She is sorrow, and fear, and dread, and grief.  I didn’t consciously awaken her, but the date was drawing near and I guess my subconscious had figured it out before I did.  I had been cleaning out the kitchen cupboards, like you do every now and again when you realise the dust is beginning to settle on the shelves!  I emptied the bottom shelf of one of the cupboards – that’s where we keep all the everyday medicines.  It’s where we keep your medicine, in a little pink sandwich box with Barbie on the lid.  I take that box out of that cupboard every single day to prepare your aspirin. Yet on this day, when I placed the box back in the cupboard I realised that it had gone back in a different way to normal.  I realised because there staring back at me, was the hospital label – we had used that box to store your medicines when you were in the Children’s Hospital.  And there I was, right back in that cubicle behind the nurse’s station, and you were by my side, in your cot, all wires and bandages and looking like someone else’s baby.  Your Auntie popped in just at that moment and for a while I was somewhere else.  When she snapped me out of it, tears came out of nowhere and I shrugged it off as ‘a moment’. What it was, was a flashback.  The first I have had since I was successfully treated for PTSD last year.  Luckily it was short-lived, and I was nothing more than a little shaken afterwards.  I’ve not had one since, though the sound of that musical seahorse going off the other day threatened to bring another.  Instead I considered how the fact that you were playing with it was a good sign that you do not remember like I do.  That is indeed a blessing.

Anyway, enough of that miserable talk! I haven’t written to you in so long, and I have so much to tell you! I want to show you how far we’ve come in the last two years, and let you know how remarkable your life has been so far.  On the 28th May last year, I wrote a blog which I gave the rather despondent title of “Stealing Joy”.  You see, that is how I felt back then.  Kawasaki Disease had come into our lives and stolen everything that was meant to be joyful away from us.  Here is some of what I wrote:

“I want to allow myself to believe all the motivational clichés about things happening for a reason, about how far we have come, about how lucky we are to have Freya here in our lives and how we should count our blessings.  But today that all feels like bullshit.  Today I find myself mourning for normal…Today marks the anniversary of the last day we knew what normal was.  I wish that day were Groundhog Day and we could live it over and over and over so that the 31st May would never come.

I don’t want to wallow in the misery of the last year, believe me. I want to be thankful for what we have, and cherish every moment.  I want to believe that this happened to us for a reason, that we will all be better people for it, that I will look back on all this one day and laugh at how wrapped up I was.  I will allow that to come…”

And what I want to tell you now, sweetheart, is that it did come.  Normal came.  And with it came joy.

April 2016 marked the end of my maternity leave, but I wasn’t ready to return to work for many reasons.  For one, there were still issues with your immunity, and the risks connected to you being exposed to chicken pox were too great for me to consider placing you in any kind of childcare.  Heart-wise things were pretty unstable, with lots of unknowns, and much deliberation about whether we should allow the hospital to plough ahead with a procedure that I would prefer to avoid.  At that time the uncertainty filled me with dread and I was struggling to deal with what life had thrown at us.  I was about to receive treatment for PTSD (post-traumatic stress disorder), I had hit a very low point in my life where I felt let down by many people in it, and life itself.  I felt very alone, except for you.  You were the only one who could make me smile.  At that time I was sliding down walls in hospital corridors when an anxiety attack took hold, or crying alone in the early hours of the morning because there was nobody to share my grief or fear with.  When my employer agreed to allow me to take a career break to get back the time we lost, it was like I had been given a new beginning.  I was paired with the most amazing counsellor who helped me deal with what happened to you, and then some. And I began to believe in life again.

Don’t get me wrong, I don’t think I will ever stop being afraid of what lies around the corner.  And I am more afraid of death now than I ever was before.  I think about it a lot, almost daily.  Not in a macabre way, just a reminder that tomorrow isn’t promised.  Sometimes I feel deep sadness at the thought that I might not get to meet your children, my grandchildren.  I just have to try to stay young, so I might get that chance.  I feel a dreadful sorrow when I think about my own mortality.  I am so afraid to leave here, leave this place and my family.  I cannot bear the thought of being parted from it.  But then I guess it is our fear of death that keeps us alive.  If there is one thing I learned from my counselling it is this – that no amount of worrying about the future is going to change it.  I have learned to live in the moment (mostly).  Sometimes the resolve dissolves and I find myself fearful, especially as the seasons change and we head towards the Autumn, and the angiogram that I have such an issue with.   But mostly, we live in the now.  And since I went back to work full-time in April this year, there really isn’t much time to think any further forward than that!

When I was approaching my return to work, I became very sad.  The thought of not spending every day with you made my heart-break.  I wasn’t worried for you – I knew you would adapt and that it was time for you to experience new things and to make new friends.  I was worried for me though.  I honestly did not know how I was going to get through it.  We ended the two-year break with a fantastic holiday in Mexico.  We were finally able to fly, having managed to get you caught up on all the routine vaccinations you missed because you were so young when you got sick.  I had some contemplative moments on that holiday – each day that passed took me another day closer to leaving you. But I told myself that rather than think of what I was losing, I should think of what I have gained.  I was given the gift of time; another year to spend with you before I had to return to a ‘normal’ I never thought we would see.   A year to fill with a joy capable of erasing a year of misery.  And I have to tell you, that despite everything, these last two years with you have been extraordinary, because of who you are, and what you have achieved, and what you have done for me.  I am a better person because of you.

And you? Well, what about you?! Let me tell you what you have seen in this last year.  You’ve seen animals and sea-life, you’ve swam in pools and an ocean.  You’ve visited the home of a literary great, and learned where your name came from, my Freya Ellis Belle.  You have made firm friends.  You’ve danced and bounced, and you know your good toes from your naughty toes (thank you Mrs Riley!).  You have inspired a donation of £75,000 from a stranger across the other side of the world, and raised £8,000 from your 1st birthday party.  You’ve sat upon the knee of world leading Kawasaki Disease specialist, Professor Jane Burns.  You’ve been to Christmas markets, and Summer Fayres. You were awarded special recognition for Triumph Over Adversity at the Doncaster Free Press Awards. You have raised awareness of this disease, with tens of thousands of people having seen your face.  Last month over 5,000 people viewed a video of you on Facebook, raising even more awareness.  You have been in Newspapers and on ITV News.  You inspired me to give blood, and register for stem cell donation.  And you inspired me to run so that just this weekend I raised nearly £3,000 running 10km in the Great Manchester Run!  You, or Kawasaki Disease, or a combination of the two have made me stronger, wiser, more compassionate, kinder, more alive than I ever was before, and for that I am thankful.

On the train home from Manchester this weekend, I opened my finisher’s pack to have a look at what was inside.  My runner’s medal, a sick bag (I’ll tell you about that one day), some leaflets, a bar of chocolate.  I look at the wrapper to see what kind of chocolate it was and my eye was drawn to the best before date:

Best before 31st May.  

Perhaps you were best before then.  You were best in terms of being undamaged, your little heart was in tact and you were perfect.  But actually, you are so much bigger than the 7 weeks before you became sick.  You are more than Kawasaki Disease, more than a broken heart.  And I am more than a mum.  I am your mum, and that makes me a very lucky woman indeed.  I became my best after you.

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Return to Cannon Hall Farm

Dear Freya

I must admit the title of this blog post made me smile a little!  Sounds like one of those old stories I read when I was a child, usually involving four or five intrepid children and a dog off on some treacherous adventure.  Today was not quite so dramatic as any of those stories, but it was an adventure for us nonetheless, and I must start by saying thank you for making today wonderful, when it might have been otherwise.

Today we visited a local visitor attraction, Cannon Hall Farm.  It is about a 45-minute drive from home, in Barnsley, South Yorkshire, and is home to lots of animals that you can get close to. At this time of year, in the Spring, the farm gives birth to new life in the form of tiny piglets and little lambs and if you are lucky with the timing you can get to hold a guinea pig and stroke a fluffy rabbit too.  We arrived just after 11am, and you were excited about seeing the ‘aminals’ as soon as we got out of the car.  I’ve visited many times over the years, but this was the first time you were seeing it with your eyes, and it was magical.  I love seeing life through a child’s eyes.  Everything is new and wondrous and those big blue eyes sparkled with excitement at every new thing that you encountered.

We paid our £5 entry – there’s a special offer on at the moment and you were free anyway, so it was most definitely good value for money!  We bought a bag of animal feed too, so you could interact with the animals.  We were presented with stickers to wear to show that we had paid our way, but even though I confidently placed mine on my coat, you were reluctant to allow me to do the same with yours.  See, you have developed this fear of stickers, presumably a mixture of ECG memories and the steady flow of sticker offerings at every medical appointment, but whatever it is those stickers cause you to recoil, and back away like I have some kind of venomous creature in my hands.  I managed to convince you within about half an hour that you had to wear your sticker if you wanted to feed the animals – you may only be 22 months old, but you are  bright as a button and you were really keen to send the food down those chutes.  I took the small victory, and punched the air in my mind.

You were mesmerised by the Meerkats and ran up and down the enclosure as they chased you from the other side of the glass.  Seems they sensed your fun and wanted to join in.  And then we went on to the breeding barns, led by a very eager you running off ahead, giggling “What’s in there?!” as you ran. You adored the pigs and their piglets, and toddled excitedly from barn to barn shouting “Bye bye!” to the animals as we left them.  You weren’t too keen on the tractor cleaning out one of the stalls, but we moved on quickly enough for you to forget about the monstrous roar of it’s engine as it shovelled away all the muck and straw.  You gambled on the blue ferret to win the race, but sadly it had no intention of leaving its starting block and lay there curled up in the warm Spring sunshine, along with green and yellow, while red took the title with ease.  We walked past the birds on our way to the sheep enclosure, where you delighted in the sounds of the lambs, remarkably like new born babies crying for their mummies, until one of the ewes decided to utter a deep, groaning “baaaa” and you ran screaming “Help me, help me mummy” until I scooped you up and headed back towards the centre of the farm!  As we passed the birds again on the way back, I saw the network of tunnels in the children’s play area out of the corner of my eye.  Silly really, that it was the sight of those tunnels that drew an inward gasp and brought a tear to my eye, but I quickly brushed the thought away as we headed back to see the meerkats again – they would bring back the smile in an instant.

We had pretty much exhausted your attention span, and the use of your little legs, by around 1pm so we popped into the restaurant for some lunch.  I ordered a sandwich and chips for us to share and we took a seat in the corner where I could pen you in at the end of a row of benches!  You like to wander, and I needed you to stay put and eat some dinner.  On the table next to us were an elderly ‘couple’ (I could tell by their conversation that they were not married, and later found out that they were both widowed friends).  Both the lady and the gentleman were showing an interest in you.  I mean, at risk of sounding sycophantic, you do draw attention to yourself. Those huge ocean blue eyes, and your little curls, along with this way that you carry yourself that defies your 22-months on this Earth, seem to gather interest everywhere we go.  You are quite simply captivating.  I don’t know what it is that you have, but I guess although it sounds like far too mature a word to use to describe you, I would say that what you have is charisma.  Oodles and oodles of charisma.  Whilst I am most definitely your number one fan, you seem to be gathering a following wherever you go.

Anyway, to get back to the point of our ‘adventure’.  After a number of musings and comments from the couple next to me, the gentleman remarked at how clever you are – he had been observing you when you were let down from the table and noticed how considered every move you made was.  He said you seemed to be well aware of everything and everyone around you, and he said “She’ll go far that one.” He said you seem ‘lively’ and I laughed and said “Oh yes! She keeps me on my toes!” and the lady replied, “Yes, but better to have them like that,  than in hospital poorly.”  I could have brushed over that comment, but instead I remarked that you had indeed had your fair share of that, and of course this sparked some interest in your situation.  “In fact, the last time we were here was the day before she became sick.”

And there it was; the reason for our visit.  We have not been back to Cannon Hall Farm since that day before our lives were changed forever.  Saturday 30th May 2015; you were 7 weeks old and it was our first outing as a family.  I don’t know why we haven’t returned to visit the farm really.  There is absolutely no suggestion that your illness was linked to the farm, and whilst the cause is unknown so it could never be completely ruled out, it is more likely to be just a coincidence and bad timing.  I think I just didn’t want to undo the memory of that perfect moment in our history.  I mentioned earlier that the sight of those tunnels was the only thing that triggered an emotional response (though I had been working hard to suppress the emotions I could feel crushing my chest all the morning).  I guess it’s because we spent a while there whilst your brother and sister got themselves lost in the maze of tunnels.  I think I fed you as we sat on a bench and watched the children playing in the early Summer sunshine, and congratulated myself on this perfect life we had created.  And up to that moment, Peanut, it really had been perfect.  You were perfect.

That day in 2015 at Cannon Hall Farm marked the end of perfect for us, or so it seemed.  It feels so unfair that things changed so early on in your life, before we had a chance to make any more perfect memories.  I guess I’ve wanted to preserve the memory of that day, hold on to the precious moment that is captured in sepia images in my mind.  It has been a huge flag on a timeline, marking the change from perfection to imperfection, and giving me something to grieve, to pine for.  But do you want to know something, Freya? What I realised today is that there was really no need for me to hold that moment on a pedestal as something to be quite so treasured.  Because, with the exception of 6 long weeks in a hospital cubicle and all the trauma of 2015, every single moment with you is something to be treasured.  Yes, I felt sadness wash over me when I remembered how carefree and wonderful our lives seemed on that day at the farm, but when I sat and thought about it I realised that without what happened to you, without Kawasaki Disease and it’s gifts (yes, you detect sarcasm) then we wouldn’t have experienced the wonder of today.  Without Kawasaki Disease, I would have returned to work after a year on maternity leave, and our moments would have been reduced to the same precious hours on weekends that your siblings were lucky to grab in between the mountains of washing and ironing.  Because of Kawasaki Disease, you now have a broken heart and an uncertain future.  But because of Kawasaki Disease, I now have a heart that is capable of feeling more than it ever had before.  It showed me a glimpse of what it might feel to lose someone I loved, and made sure that I will never take you, or anyone else I love, for granted.

Of course, I wish that we had never been introduced to this insidious disease.  I wish that you hadn’t been so little and therefore susceptible to the very worst that the disease had to offer.  I wish we didn’t have to face a future with hope, but no guarantees.  Our lives would have been so different without it, but I am not sure if our lives would have been better.  Is that wrong? I don’t know.  I just know that what happened to you in 2015 created an opportunity for me to be a better version of the me I had once been.

Today, as I saw the wave of sadness cross that lady’s eyes when I told her that you had a damaged heart, it struck me at how terribly unfortunate your circumstances must seem to someone on the outside, even if, as the lady said, “You wouldn’t know to look at her!”  But to us, this is just our normal.  Today I realised that what we have is not an altered you or a changed you.  The you we had for 7 weeks at the start of your life with us was wonderful, but it was not a patch on what was yet to come.  You have given us 22 months of extraordinary, and I cannot even begin to put into words how grateful I am to you for today, and all the days just like it, both in our past and in our future.

Whatever it is that radiates from within your little body, it takes my breath away and  I love you with all my heart.

The World keeps Turning

What’s in a date? According to the dictionary, a date is “the day of the month or year as specified by a number.” It’s that simple.  And yet dates mean so much to so many people.  Every day of every year marks something significant in somebody’s life; a birth, a death, a wedding, a break-up, the anniversary of good and bad events that have occurred in a lifetime.

For us, today brings mixed emotions.  It would have been almost impossible not to face today with some sadness at the memories of this day last year when we watched our 7-week old daughter slip away from us with the fear that we may not ever get her back.  It is the day she became critically ill, and marks the beginning of our journey with Kawasaki Disease; Freya’s Story.   It feels somewhat surreal to be sat here today, putting the washing on, clearing up the aftermath of the children’s lunch, normal everyday things that a parent has to get on with.  A year ago today our lives were changed forever.  Changed in so many ways, some bad some good.  How did last year change me for the worse? Well, for one it altered my perspective on this thing we call life.  We all believe we have the right to live our lives how we choose, and rarely stop to consider the consequences of the actions that we take.  Being faced with the possibility that your child might actually die turns your entire belief system on it’s head.  I had never considered my own mortality before then – why would you? You just coast through this life taking it for granted that it is yours for as long as you want it.  But there are much stronger forces at work than any of us are able to prepare ourselves for, or protect ourselves against.  People get sick.  Kids get sick.  This world is full of illnesses and diseases that affect everyone else, and we read stories about them in the News or on Social Media, and think “poor them”, but we rarely stop to consider that the trials we see other people facing from a distance may land themselves on our own doorsteps one day.

I had never felt so much anxiety about the brevity and uncertainty of life before the events of last year.  Now I find myself living a confused life, where on the one hand I wish to grasp it with everything I have whilst I have it – make memories, move mountains – and on the other hand I face it with a fear of the unknown, and a desire to stop time so that we might be able to let go of that fear, just for one day.  Wherever I walk I see beauty in everything, magnified like I’m seeing through the wondrous eyes of a child, but out of the corner of my eye I can always see a shadow lurking and I imagine that the Grim Reaper is sharing every moment with us.  I am reminded of that movie, Final Destination; you can’t cheat death, can you?

But, the 31st May is just a date.  It doesn’t really matter what the date was, Freya got sick.  It doesn’t matter what date we got our diagnosis, Freya had Kawasaki Disease.  It doesn’t matter what date they told us her heart was damaged, Freya’s heart suffered.  Even so, it is hard not to see these dates as milestones, those first hurdles you have to get over after any loss.  And I know I should be grateful that we didn’t have to suffer true loss, but this is still part of a grieving process, and I do grieve for the loss of that perfectly healthy, normal little girl that I was holding in my arms on the 30th May 2015 and all of the 50 days before it.  Some would say I am ungrateful, that I should get over it already.  I don’t blame them if they haven’t been through something like this.  And it isn’t like I don’t want to let it go.  Of course I do – that’s why I see a counsellor every week to help me with the trauma of the last year (as well as a few other troublesome things).  If anyone thinks that I want to be stuck in this perpetual limbo between sadness and joy, that I get any gratification from feeling tears prick at my eyes every time my youngest daughter shows me just how special she is, is mistaken.  I want to be able to move forward, forget the last year, make plans for the wonderful future that I promised myself for my family.  But KD doesn’t let you do that.  It doesn’t just leave, like a cold, or a sore throat; KD leaves permanent scars, physically and metaphorically.

I will allow myself to feel what I feel on these dates, these first milestones.  The day of her diagnosis (12th June) is likely to bring up a lot of the same emotions.  Hopefully I will be better prepared and can plan to do something that will change the memory of that day.  I had hoped to do something today that would give me a new memory of the 31st May, but the awful weather and the restrictions I place upon Freya’s indoor activities (I don’t want her in an indoor play area, during half term, in chicken pox season!) put a stop to that notion. So instead I have tried to distract myself with the children and the chores.  But I sat for a moment and watched the raindrops run down the window, an image that my eyes immediately chose to mimic, and it has left me feeling wretched.  Out there new memories are being made and new anniversaries created and the world just keeps on turning.  And I keep breathing in and out, and whispering to my heart, “It will get better one day.”

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Stealing Joy

A year ago, on this very Saturday (though it was the 30th May), we had our last day of ‘normal’.  My parents had visited from Kent to see their new granddaughter.  Freya was 7 weeks old and we went on our first family day out since Freya was born, to a local farm.  The sun was shining; it was a glorious day that told us that summer was on the horizon.  The unexpected baby we had thought would ruin everything was proving to be our best ‘mishap’ to date. We were smugly happy with our perfect little life. We watched our older children play in the sunshine, whilst their baby sister slept in her pram, and it was like we had our own little slice of heaven right there.

That evening my husband and I went out for dinner with my parents, and my mother-in-law sat home with the children.  It was a pleasant evening, and when we returned home there was nothing to report, other than the fact that Freya hadn’t wanted all of her bedtime bottle.  It was unusual, but not exactly a serious situation; perhaps she was too tired, too full, or maybe there were some teeth on the way.

The next morning Freya would wake for her morning feed, around 6am.  Except she was so snuffly and bunged up that she just couldn’t take the bottle and gave up pretty quickly.  I was concerned, because she had gone for so long without a feed through the night (I remember celebrating our first proper night’s sleep), but I put it down to the fact that her nose was just too blocked up to let her feed.  At around 9am, I made another bottle and tried again, but just as before she couldn’t manage to take the feed, and fell asleep in my arms from the effort.  “She’ll feed when she’s hungry,” I told myself, and put her down in her bouncy chair.  A couple of hours passed, and I began to get quite fretful that she hadn’t fed since the previous day, so I decided to wake her and try again.   It was about 11am.  When I went to get her out of the chair, I noticed how hot she felt and so I took her temperature with a digital thermometer.  38.3F.  She had a fever.  I remained calm, I mean kids do get sick, and she has an older brother and sister who come into contact with all kinds of germs at school.  She had been snuffly for a couple of days; she had probably picked up a bit of a cold.  So I sent my husband to Mothercare to buy a medicine dispensing dummy (if you haven’t seen these, they are fantastic for getting medicine into a little baby).  Meanwhile I hunted out the Calpol. From 2 months.  That’s what it says on the front of the box.  Many would have given the medicine; I mean, she was only a week away from 2 months, what harm could it do? But for some reason, I felt like I couldn’t take that chance.  Unsure what to do, I called the out of hours GP service (it was a Sunday, remember).

The doctor called us back pretty quickly, and asked me to explain what symptoms Freya had.  She wasn’t feeding.  She was sleepy (but she was a newborn baby, and sleep was pretty much all she did).  She had a fever.  And come to think of it, her little tummy was moving up and down quite a bit – she was working hard at breathing.  The doctor said we should take her to A&E, as it was unusual for such a young baby to have a fever for no reason.  And that is what we did.

I’m guessing it was around 3pm in the afternoon by the time we were seen at the local hospital.   I don’t remember what was said by the nurse/doctor that checked Freya over.  I remember telling them that I had tested positive for Group B Strep during the pregnancy, and that although I was treated with IV antibiotics during labour, it was pretty tight timing wise.  I was on high alert for late onset GBS infection in Freya, and I knew that if she had contracted GBS during labour, there was a chance that she could develop meningitis.  They did too.  So they sent us up to the children’s observation unit with a view to keeping her in overnight for observation.

That part is all a bit of a blur too.  I remember sitting in the waiting area, Freya, burning up, lying across my knee.  She was laid on some paper towels whilst my husband and I attempted to catch a wee in a kidney dish. We went into a small room, and a doctor came to check her over.  I can’t remember what he said, or why he felt she should be admitted to the Children’s Ward.  I don’t remember when they put the IV antibiotics in.  I just remember that’s what happened.  We were admitted to a private room, and my husband went home to our older kids.  I sat in a chair in the corner of the room with Freya sleeping in my arms.  She was connected by the IV to a machine that dispensed the medicine, and every time I moved the machine would set off alarming, and the nurses would come in.  I think I stayed there until the medicine had all been delivered to Freya’s tiny, hot little body, and then I decided we both needed to get some proper sleep.  By this time, it was quite late.  It may even have been the early hours of the morning.  The nurses came in every hour to complete their observations, and then I put Freya in the cot so she might be cooler, and I might manage some sleep in the chair.

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As I laid her down, I noticed that all familiar smell – she had a dirty nappy.  “The poor thing just needs to sleep, I’ll not disturb her” I told myself,  and I went back to my chair in the corner.  I’m not sure how long I sat there trying to get to sleep before my conscience got the better of me and I decided that I could not leave her in a dirty nappy. Disturb her or not, I needed to change her.  And it was as I lifted her vest that I noticed a pin-prick rash over her torso that I could just make out in the dim light.  I think it was about 5am, because it was starting to get light outside and I could hear the birds singing outside of our window.  Were my eyes playing tricks on me in the half light?  I was so tired.  I turned on the light and went to get a better look, but still in the fluorescent lights I couldn’t work out what I was seeing.  I walked over to the window and opened the curtains, and in that light I could see that this wasn’t an illusion.  Freya was covered in a rash.  I called the nurse who came to have a look, and we both spent so much time scrutinising that rash that I can’t remember to this day if it blanched under a glass or not.  The nurse called the on duty doctor, and by the time he arrived (which wasn’t long at all) the rash had spread down Freya’s legs and across her arms.

It was in that moment, watching the doctor silently complete his review of my baby, that I noticed the atmosphere change.  They called a consultant who joined the doctor in his silent inspection. It was very calm, but the air felt thick. I thought Freya was sleeping.  In fact she was unresponsive.  I remember hearing words like “shutting down”, and the doctors started to wheel Freya in her cot into another room.  It was the High Dependency Unit (HDU).  They delivered fluid boluses to Freya by stealth.  At 6am I called my husband “Gavin, I think you need to come quick.”

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If you’ve followed Freya’s Story, you will know what happened next.  You’ll know that she became stable, but did not get any better for the next week, despite numerous antibiotics.  Her fever would not come down with antipyretics, and when her fever spiked (above 40 at times), so her heart rate would soar, and her oxygen levels would plummet.  She was very sick, yet it would take 13 days, lots of medication and countless tests before a diagnosis of atypical Kawasaki Disease would be reached.  Three hospitals would be responsible for her care during a six week incarceration (!) which began on the 31st May 2015.

I want to allow myself to believe all the motivational cliches about things happening for a reason, about how far we have come, about how lucky we are to have Freya here in our lives and how we should count our blessings.  But today that all feels like bullshit.  Today I find myself in mourning for normal.  I want to go back to that day at Cannon Hall Farm, where everything was blissful and beautiful and picture-book perfect, and somehow re-write history.  Today marks the anniversary of the last day we knew what normal was.  I wish that day were Groundhog Day and we could live it over and over and over so that the 31st May would never come.

I don’t want to wallow in the misery of the last year, believe me.  I want to be thankful for what we have, and cherish every moment.  I want to believe that this happened to us for a reason, that we will all be better people for it, that I will look back on all this one day and laugh at how wrapped up I was.  I will allow that to come, I’m sure (and the counsellor will give me a good kick up the arse if I don’t!), but for now I am allowing myself some wallow-time.  I have every right to feel sorrow, and to mourn the loss of the life I planned to have.  I have every right to feel angry that Kawasaki Disease came into my daughter’s life and robbed her of her health so soon after she arrived in this world.  I have every right to feel angry that the world keeps turning, and that people are moving on even though I seem to be stuck in this perpetual Kawahell.  Today, I hate Kawasaki Disease.  It broke my baby’s heart, and it broke mine too.

Most of all, I hate that this disease took away some of the joy that I ought to feel from moments like this…

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Memories of another you

The other day I awoke to a Facebook memory; a picture of you from the same day a year ago.  You were 4 days old, we were home, and you were in your bouncy chair staring at me.  At first I smiled at the memory; that little face full of wonder at a new world that you could barely see through eyes so new.  But then, like a lengthening shadow, sadness crept in.

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Those days we had with you were so few before Kawasaki Disease pushed its way into our lives and stole you from us.  The you we knew. The you I gave birth to.  The you that wasn’t broken.  I don’t think I will ever learn how to come to terms with what this disease did to you. You were born healthy, and perfect and pure.  For 7 weeks we got to know each other at home, barely going out, because I wanted to be sure I gave myself the chance to drink you in.  We cuddled on the sofa for hours, and I fed you from my breast because I wanted you to have the best start in this world.  I know now how important those moments were, and I am thankful that I cherished you and didn’t feel any pressure to share you with the outside.  It’s like I knew.

But I didn’t know.  I had no idea that things would change for you, for us, overnight.  You were so perfect, so well.  We had no concerns at all about your development or your health.  You were nothing short of perfection, and I was smitten from the moment I looked down at you from my position on that labour bed.

I guess these memories are going to act as triggers for a while.  Seven weeks of memories of the you we had will be replaced by memories of the worst days of my life.  At least I came away from Facebook for a while just before you became sick; that I can be thankful for.  But then, I don’t need Facebook memories to remind me of those days; those days are forever etched on my mind.  I can’t accept the cruelty of it all.  To have struggled so much with the concept of finding myself pregnant again but come through it having battled some old demons and actually looking forward to this new adventure, only to see it come crashing down around my feet was cruel indeed.  We didn’t deserve this.  You didn’t.

I try to tell myself that I should be thankful you are here with us.  Things could have been very different.  In that first week in the hospital I was convinced I would be going home without you, you were so sick.  And when they told us that your little heart was damaged I prepared myself for the worst.  The psychologist told me that what I was experiencing was anticipatory grief; I had been presented with the possibility that you might be taken from us, and my mind had already begun to process that notion.  I could see a certain photograph of you on an easel at the top of a church aisle; that photograph haunts me still, and was the catalyst for my thoughts and feelings on those eyes of yours.  I told myself that if I accepted that this disease would kill you, that I might not take you for granted for the time that you are here.  I guess, even though it’s a little morbid, it’s not a bad way of thinking about it.  I mean, if the worst is that you have a life full of wonder until you are 90 then we won’t have lost anything will we? It’s a good rule to live by, and there are hundreds of cliches I could quote about living life to the full that would fit right in here. We were lucky that your heart began to show signs of improvement, and that we haven’t had to live with that feeling forever – others do.

Using the word ‘lucky’ to describe you makes me flinch, and the bully in my head says “Watch it! You’re not out of the woods yet! Don’t be counting those chickens already…!”

I hate Kawasaki Disease.  I hate it for stealing my memories and turning them into reasons to be sad and full of regret.  I hate that I can’t look at a picture of my tiny baby without feeling sorrow for the short time we had before our lives became filled with fear and drama.  I hate  that I can’t hold another baby without feeling like I’ve missed out on so much.  I held you for seven weeks, and it would be weeks before I could properly hold you again.  I could have held you, but your temperature soared relentlessly for a fortnight and I was scared that I would make you even hotter than you already were.  And I hated the tubes and the wires and the needles; the slightest movement would set the monitors off screaming and the nurses running.  I hated the look in your eyes; you were too young to be afraid.  I wish I knew how you felt when you were lying there in that cot with a vacant stare.

I hate it for making me look at the world through different eyes.  I am wary of the world now.  I know first hand that it has the power to take away everything that you love and I  approach every day with caution, even when I try to find joy.  Sometimes I think I have seen something out of the corner of my eye.  It’s like I see Death waiting in the shadows.  Kawasaki Disease sucks.

75% of children who have this disease will walk away without any heart complications.  They are the lucky ones, but that doesn’t take away the terror of the experience for the child or the parent.  But why did you have to be one of the 25%? Why couldn’t it have just left your tiny heart alone? Could it have been prevented? The doctors ruled out their suspicion that it could be KD on day 9, and yet it was lurking and continued to do it’s damage whilst their backs were turned.  4 days later it became clear that it had been Kawasaki Disease all along. I wonder how the doctors felt when the echo showed them that awful truth…

None of that matters now, I guess.  It’s done isn’t it, and there is nothing we can do to change it.  I have to learn to accept that we live in a world where uncertainty is the only thing that is certain.  Death and taxes.  This world is full of beauty, but it is also home to a lot of hurt.  And as if there wasn’t already enough sadness to deal with in this life, there are people who see fit to cause others pain.  Why do people do that? It is beyond me.

Anyway, enough of this morose talk.  What ever will you think of your mother when you read this stuff?!  It’s hard though Peanut, it really is.  The emotions I have to deal with every time I look at you are a bit too big for me sometimes; sadness, regret, guilt, anger, fear…love.  I just need to get myself back on track with our plans to turn this whole sorry mess into something positive.  You’ve raised a lot of money – £7,000 in just one month of fundraising for one event!  And you’ve even appeared on ITV News (http://www.itv.com/news/calendar/2016-04-13/mothers-plea-for-early-diagnosis-of-rare-kawasaki-disease/).  We will do what we can together to raise awareness of the disease, so that the next time a child presents the symptoms, their parent might just ask the question, “You don’t think it could be Kawasaki Disease do you?”

 

Merry Christmas, Grandad

I had only lived a third of this life when I lost my Grandad on Christmas Eve. I was 13 years old, it was my first loss and I have never experienced another loss like it since.

Twenty-seven years have not altered my memories of one of this world’s most wonderful men. I wish he had stayed here long enough for my children to have met him.

I wrote a poem that was read at his funeral, which from memory went something like this…

You will never be forgotten, Grandad.  Merry Christmas xxx

Sunny with a chance of rain

Today I took my daughter to Haworth, home of the Brontë sisters. I have always been a fan of classic literature, with Austen and the Brontë’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 Brontë, 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 Brontë 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 Brontë 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 Brontë 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.