I have this noisy baby…

She likes to scream!  And I mean, SCREAM!  A high-pitched, piercing scream that drives right through to your bones.  It makes me wince, and is a source of anxiety for me.  It has me a bit stumped if I’m honest.  Up to now, I’ve been able to communicate verbally and non-verbally with my 11-month old (she knows sign language for ‘milk’, and has made up her own signs for most other things).  When she was a tiny baby, I even worked out the language of her cries, and I could tell the difference between the sound she made when she cried for food to any other cry she made.  But I haven’t quite managed to tune into the scream, perhaps because I am trying too hard to tune out..?

I might be getting close though.  It is somewhere in between frustration and attention-seeking I think.  It happens mostly when she is restricted; car seat, pram, highchair.  Add any of those situations to occasions when she doesn’t have my full, undivided attention, and you can multiply the decibels tenfold.  So, you can imagine how I feel if I’ve driven into town (car seat), walked to a coffee shop (pram) and sat down (highchair) for coffee with a friend (divided attention)!  I am living off my nerves!  That said, I keep telling myself that this is temporary.  She will soon learn to communicate more effectively, and the need to scream will lessen.  And as she starts to settle down in this new and amazing world she has discovered at speed as she commando-crawls across my wooden floors, I will be able to allow her more freedom.  Soon she might be allowed to sit on a normal chair, stand, walk a little, so as not to feel imprisoned by a 3-point harness.  Until then, I have to accept it, and perhaps try and work out how to help her break the habit. That’s the hard part.

Although, saying that, it’s not the hardest part.  Oh no, the hardest part is trying to deal with the noise that my child has decided best fits to articulate her thoughts when surrounded by selfish, insensitive, intolerant human beings who either never had children of their own, had perfect children, or who can’t remember what having small children is like.  Yes, that is the hardest part.

I’d like to address the above described human beings, if I may be so bold.  Perhaps you will need to share this blog post on social media to make sure it reaches the right audience; if you’re reading my blog I am most sure you would not be one of those people.  So here goes…

Dear Intolerant,

I know my daughter’s screaming is loud, and intrusive, and downright irritating.  I feel it too.  Except I feel it in a way that you will never come close to, because she is mine.  I carried her in my body for 9 months, and I went through 3-days of induced labour hell to bring her into this world.  When I beheld that little face staring up at me from the hospital bed (yes, I was on all fours like some kind of wild beast!), I had no idea that she would develop this rather annoying habit.  I could do without it too.  Don’t you think I would prefer to have one of those babies who just sits in their pram without making a sound so that I can engage in good old fashioned chatter with one of my girlfriends over a caramel latte?  Of course I do! Don’t you think that I don’t wish I wasn’t such a prig about dummies (not that my babies have ever been able to take to one when I’ve tried)?    

Do you think I can’t hear it? That every screech doesn’t churn me up so much that inside I too am screaming? Do you know the embarrassment I feel every time that sound leaves her tiny lips, or how I squirm in my seat at the thought that she is spoiling the experience for everyone else?  Well, trust me, I hear it. And I feel it.  And it makes me want to run.  But let me tell you this; seeing the looks on your faces, watching you put your fingers to your ears, seeing your shoulders scrunch up with tension with each shrill squeak, feeling your head snap in our direction and hearing you mutter “Oh for goodness sake!”, or “What a naughty thing!” to your friends not only makes me want to run, but makes me want to run and hide and never come out again.  

When you look at me with irritation, and not compassion.  When you say cruel things about my baby, without understanding.  Those things hurt me to my core.  I can’t expect you to love my little girl like I do, but know how much it hurts to think that others are thinking ill of her because she has learned to vocalise her frustration.  She is an 11-month old baby. She loves to crawl.  She loves to sit surrounded by bright and noisy plastic things that make her smile. She loves the challenge of that piece of furniture that looms like Everest, yet she can conquer it in one pull on those little arms of hers; the pride in her face when she makes it to the summit is something us grown ups have long since forgotten how to show.  She doesn’t particularly like being cooped up in a pram, strapped in because the floor isn’t safe or clean enough for her to roam.  I hear your unuttered thoughts, “Take her to a baby group then, and not our [insert favourite venue]” Oh, how I would love the normalcy of a playgroup right now. Where I could sip a cup of tea with likeminded mums whilst our children play happily in the soft play area.  Except I can’t.  I can’t because my child takes a drug that puts her at risk of serious illness (perhaps even death) if she comes into contact with certain childhood illnesses, so until her immune system is able to accept the relevant vaccines, a play area is the last place you will find us.  

“So, stay at home then, if that’s where she is happy.” Yes! Yes! That’s the answer. You’re quite right of course – she is happiest when at home with her toys and her freedom.  But what about me?  What about my needs?  Most days I do exactly that; stay home and entertain my little girl, or stay close by while she entertains herself.  It’s lonely.  Days go by when the only adult interaction I have had has been via Facebook.  So when that invite for a coffee comes in, with the opportunity to get out in the fresh air and meet another human being and talk, of course I am going to take it.  It is th antidote to my depression.

“Plan your time better! Go out when she naps!” Oh yes, another brilliant suggestion.  Except that I have this clockwork baby, that since spending 6 weeks laid on her back in a hospital cot has slept from 6pm to 8am without a murmur.  The trade off being that she is awake and switched on for pretty much all of the daytime hours.  Once there was a chance that she wouldn’t be here at all, so I’m happy to take the trade.

You see, this baby who looks like butter wouldn’t melt and screams like a fiend, has been through more in her little life than I have had to contend with in my 41 years.  And she has achieved more than most of us will in a lifetime.  She is an inspiration, and she is my little miracle.  And me?  Well, I suffer with anxiety on account of having been through the trauma of seeing my 7-week old baby get sicker and sicker until eventually a broken heart confirmed she had been struck by a rare disease with a penchant for the coronaries.  I haven’t dealt with that yet; these things take time.  But I am dealing with it, and for all you know that coffee I am drinking is the first I’ve had all day because that morning I went to my PTSD counselling straight after dropping the older kids at school.  

I remember the silence of the first few weeks of my daughter’s illness.  It’s a silence that will haunt me forever.  When I feel irritation at that scream, I feel ashamed for disliking a single bit of my little girl.  Sadly, the anxiety is making it difficult for me to see through the scream to the child, to understand what she needs.  But I cannot hide us away from the world.  She is bright as a button.  She has got things worked out that a child her age shouldn’t be able to figure just yet! So of course she is going to scream when I try to stifle her need to move, explore, discover and learn.  

I am not asking you not to feel annoyed; I have no control over that.  I’m just asking that you search deep inside for some compassion.  You have no idea what journey a person has been on.  You have no idea what a person is struggling with right now.  I have no idea what you might be struggling with right now either, which is why I will always look at you with kindness and a smile.  If you knew that I go home and cry after an encounter with someone like you, would you act differently next time…?

1914587_1514766442163082_4861400376192664688_n

 

Advertisements

75,000 Reasons to be Thankful…

So Peanut, where do I start?  I guess a good place to start would be to thank you.  Thank you for coming into the world, despite all my efforts to ruin that.  I wasn’t sure that you were welcome in my life when I found out that you were coming along.  Some people might say I ought not to share that, but do you know what? I’m not afraid of my honesty, because I know that you will never, ever feel that you were not wanted.  So I wasn’t sure I was going to love you when you were growing inside me, not in those early months.  But towards the end, our bond began to grow, and when you arrived into the world, a tiny, purple, screeching thing, I knew that the past didn’t matter.  What mattered was that you were here, you were alive (yes, I was afraid of that), and that there was no question in my mind that I loved you at that moment, and that I would continue to love you for the rest of my life.

You were so precious, and I held you so tight I was afraid I would crush you.  But I had been on such a journey to get to that point with you that I had to feel you in my arms, really feel you.  Years ago, when your older sister and brother were born, babies seemed to be whisked off, the moment they arrived, for the all important weighing and measuring.  It seems the health service have learned a thing or two about bonding since then.  I remember saying over and over to the midwife, to your Auntie and your Daddy that were all there with me to share the moment when you burst into that delivery room, “Am I hurting her?”, “Am I holding her too tight?”  And they told me to relax, and I held you for the longest time, drinking every bit of you in.  I felt like I had been truly blessed.  Not in the glib clichéd sense, but actually blessed with a gift.  You were a sign.  A sign that proved to me that I was indeed a lucky person, and all the insecurities, fears and negativity I had held onto for so long were allowed to be set free.

In the early weeks, I took heed of all the advice I had been given and ignored with your siblings.  We didn’t go out of the house for weeks.  We spent our days cuddled up in the cosy corner of the sofa and got to know each other.  When you slept, so did I; the housework could wait.  And I didn’t feel any need to rush out to meet people or go places, because I wasn’t ready to share you with the world yet.  You were all mine, and I all yours.  There would be time for all that fun stuff later.  Had I known what would happen 7 weeks later, might I have done things differently?  No, I don’t think I would have.  In fact I am glad I made the choices that I did, because at least I got to have the perfect you all to myself for 7 blissful weeks.  Before…well you already know what happened next.

I am not going to dwell on the following weeks, on your illness, on your diagnosis or the effects that Kawasaki Disease have had on you.  By the time you read this we will have covered all that.  No, this letter is about thanks, so lets get back to the point shall we.

You truly are a remarkable little girl, Freya.  You have endured so much in your little life, and yet you have managed with a grace that shouldn’t even be possible at your age.  You have more courage than I have seen in people more than 20 years your senior.  Your heart, tiny by comparison, has the ability to love with more fervour than any adult I have met in my 41 years on this Earth.  You touched my heart in some magical way the moment you were born, and you have continued to touch the hearts of everyone who has encountered you since.  You have something special within your soul, that shines out like a beacon through those eyes.  Eyes that have both the power to haunt and to heal me.

You have taken everything your short life has thrown at you in your stride, before you are even able to walk a step! Even when you were critically ill and your eyes pleaded with me to help you, your little mouth worked so hard to form a smile.  And later, as you started to get stronger, you smiled for every nurse and every doctor that crossed your path.  And there were a lot!  You even managed to bowl the phlebotomists over when they came to take your blood.  You would cry for a moment, but once they had taken their fill, that smile would spread across your face like a sunbeam and I would see that you had made someone’s day.  Again.

Thank you for inspiring me to write.  Well, it was your Auntie who gave me the journal and the pen, but you were my muse.  I remember opening that book, and wondering where to start, and then I looked over at you in your cot and I knew you were scared and I had to tell you what was going on.  And so the letters began.  I didn’t give it too much thought after that; the letters just came, at the end of every day when you were sleeping.  I would write in the moonlit room, laid on the parent bed by the side of your cot.  Sometimes I would think about how you would learn all about those days, because I knew you wouldn’t remember them.  Often, it was a chance for me to keep a note of the facts as your story unfolded.  Sometimes, on particularly bad days sweetheart, I would wonder if I would ever get to share your story with you, and I wondered if I knew deep down that I could really be writing for myself.  But let’s not dwell on that, eh?

I knew your story was one that I needed to share.  It came from an intense need to make sure that you had not suffered in vain.  To walk away and do nothing would have made me feel like it was unimportant, and it felt too important for me to do that.  In every moment that I wrote through tears in my journal, I felt that there was another parent like me in a hospital room somewhere with their child; sad, scared and alone.  I felt alone.  I scoured the internet,  I contacted Doctors near and far, and I joined social media support groups searching for answers.  The thing is, you can find the basic answers for the typical cases, but your case was an atypical one in many ways.  Any answers I did get were like gold, and whilst I knew that the information I gathered in relation to your case would not be appropriate to generalise, I knew that I couldn’t hold onto them.

And so Freya’s Story began.  I resurrected this blog, and created your tag.  And then I created a Facebook page that would help me to broaden the audience for awareness.  I had a lot of catching up to do – I had written 40,000 words in that journal if I remember correctly! So I began the task of transferring those journal entries onto my blog, whilst updating on your current situation.  There are many other social media pages who are dedicated to raising awareness and keeping people like me informed on latest news and developments in the world of Kawasaki’s.  The various support group pages were great, but sometimes the updates about children who were continuing to experience health issues years after diagnosis would push me into a very dark place.  Sadly, that is the reality of the disease, I know that.  But I wanted to use your page to show people that there is #lifeafterkawasakis.  Of course the disease continues to blight our life.  You have continued complications with your heart that are still unknown.  In a couple of month’s time you will go into hospital for an invasive procedure to try and get some idea of what is going on.  So far, you look like a miracle kid.  But we need to look deeper to be sure.

Freya’s Story is about more than the disease though.  It is about a special little girl, who has the ability to inspire a mum to write; I always knew I had words in me, I was just lacking the inspiration.  It’s about a pair of eyes that have the power to lock with the reader’s through a screen and implore them to read your story.  It’s about flying in the face of adversity, seizing opportunities, loving life and having hope.  It’s a celebration of a little girl who will not allow some nasty bastard illness (sorry for the language but I get a bit angry at KD sometimes) to stand in her way.  You are not the Kawasaki Kid.  You are my marvel, and you surprise me every day.  I hope as you read this, all grown and proud of whatever you have achieved in your life, that you still cannot see the scars that KD left you with.  It is an invisible illness that shows itself for a while, then skulks back off into the shadows where it belongs.

I knew I had done the right thing as soon as the messages started coming in.  Ok, so Freya’s Story hasn’t exactly gone viral – let’s face it, Kawasaki Disease doesn’t have the same amount of clout as Meningitis, say, but it needs putting on the map, and you and I will help to put it there.  And anyway, if even just one parent feels less alone, or one child receives a swift diagnosis or the right treatment after reading our blog, then we achieved what we set out to.  We’ve had parents sending messages of hope, parents asking questions about medication, treatment, immunisations, all kinds of stuff.  I’ve had to be careful with my responses; I don’t have a medical degree (although I do sometimes feel like I have one in KD), so I have mainly signposted parents to useful social media pages, internet links, research papers, support groups and the like.  I have given words of comfort when they’ve been asked of me.  I’ve kept people up to date with how you are doing when they’ve contacted me to ask how you are.   We’ve been credited with helping parents get the treatment that they needed for their child, and helping some people through some lonely times.  I am sure there have been some doctors across the country muttering “Who is this Freya’s mother?!” But I have never claimed to know it all. I only know about you really.  But at least I have been able to provide information that has helped to inform discussion and provide a line of questioning that might previously have been more difficult for a parent to navigate.  Thank you for inspiring me to do that.

You might not thank me for it, but I am sacrificing your 1st Birthday to raise funds for Kawasaki Disease research.  Ever since I made contact with the Professor heading the research after we sent off our swabs for genetic testing, I knew I had to do something.  I had asked the Professor to show me a tangible offering for parents like me to donate to.  Something that would show us how we could contribute to the amazing opportunity that had been granted to Professor Jane Burns in the States.  He cemented the offering in a 2-page document with a link to the COSMIC Kawasaki Disease Research Fund campaign on the Virgin Money Giving site, and I shared it with the Kawasaki community back in November last year.  Once I had a willing recipient, I could concentrate on bringing in some funds – no matter how small our contribution might be, the Professor had assured me it would be worthwhile and gratefully received.  And so the idea of turning your birthday party into a fundraiser was born.  I’ll tell you another time about those details, but for now, I want to thank you for forgiving me for giving up your birthday for Kawasaki Disease.  I have promised that I will not steal any more birthdays from you.

There are so many people to thank for their contribution to your birthday party, and it’s not for another 6 weeks! I will make sure I cover that when I blog about your event.  From local businesses donating prizes to entertainers offering free services, we’ve had a huge amount of support.  The local press have followed your story since we first approached them to help us raise awareness after you came home.  We’ve had cupcakes sold in your honour, and cash donations have started to hit the Virgin Money page.

And then there was this one thing, that started with a Tweet.  

Twitter and I are kind of new friends.  I set up your Twitter account not really knowing what I was going to do with it.  I still don’t really, but I dabble here and there and started to share your blogs when I’d worked out how to!  I mainly use it to hound celebrities in an attempt to increase the reach of your story and shine the spotlight on Kawasaki Disease.  I have had some successes; some of the key KD and Rare Disease organisations follow Freya’s Story.  We’ve had retweets from some celebrity Doctors, like Dr Miriam Stoppard and Dr David Bull.  One of the stars of TOWIE retweeted once, and we’ve had a couple from actresses and directors.  We set out on a bit of a challenge with a Kawadad from the other end of the country, (you know who you are!) but he has had more success than we have, lol!  I have a lot to learn about Twitter it would seem.

But, somewhere, on one sleepless night during their own Kawasaki ordeal, it would seem that the right person stumbled across your story.  They saw that we were raising money for the Kawasaki Research Collaboration between Imperial College London and Rady Children’s Hospital in San Diego.  And that person did a remarkable thing;

“…managed to get…some funding for research. 75 thousand pounds…”

Even though I’ve had that information for a couple of days now, I still struggle to let that sink in.  I think my response was something like “Are you serious? How is that even possible?!” which was met with a reply about the world not being all bad.

I received an e-mail from the charity too, but I still didn’t quite believe it Peanut.  How could we have inspired such a huge donation?   But it is true.  And if the donation can be counted towards the collaboration pot, it will be doubled. Meaning that single investment in research is worth £150,000!!

“…you may want to thank someone who raised awareness about the KD research thru her twitter activity: I found you guys late at night reading the posts from a @freya_story” 

Thank you for giving me a story to tell.  Whilst I would have given anything to have prevented you from going through this, I can take comfort in the fact that because this happened to you, great things might happen.  No amount of raising of awareness or funds will change what happened to our family 8 months ago.  The emotional scars will take a long time, perhaps forever, to heal.  What I hope it will do, what every parent who has experienced this with their child hopes, is that the research being undertaken now will change the future of Kawasaki Disease and the lives that it lays claim to.

I’m going to leave you with these lovely words, received from Ilsen Cafer (Fundraising Co-ordinator for COSMIC – Children of St Mary’s Intensive Care);

…You deserve to be very, very proud.  I can’t imagine how tough a time it must have been for you and your family when Freya was diagnosed, but your special little girl, her story and your courage have helped lots of parents, as well as inspired a donation which will make a difference to the lives of Kawasaki patients around the world.  Never underestimate the impact of your story, you’re doing a fantastic job!” 

“…Please tell Freya in her letter that she is our little COSMIC star and that she should be very proud that aged only 1 she has inspired so much more than most people ever do!”

It seems that I have so many people to thank, and so much to be thankful for, despite this terrible experience that we have all been through at the hands of this disease.  Most of all though, I have to thank you for being you.  You have got us through this.  You.

And then there’s one person whom I would like to be able to thank 75,000 times, and that is one very cool Italian dad who lives in Hong Kong.  Thank you from the bottom of our hearts.

FullSizeRender (1)

Because life, at best, is bitter-sweet

It has been a little over 8 months since Freya was diagnosed with Kawasaki Disease following her hospital admittance on the 31st May 2015.  She was 7-weeks old.  Infants under 1 year are hit particularly hard by the illness, and are at greater risk of heart involvement.  The magic window for treatment that has the highest odds for reducing the risk of coronary artery dilation and/or aneurysms is considered to be 10 days.  Freya was diagnosed on day 13 when an echocardiogram showed significant dilation to her tiny coronary arteries, and she was transferred by ambulance to a specialist paediatric cardiac high dependency unit (HDU) in another hospital.

Since her diagnosis, Freya has had numerous ECG and echocardiograms performed at follow up appointments. Some of those appointments have shown no change, but two of those appointments showed some remarkable improvement that managed to incite a “Wow!” from her Cardiologist.  In September we were advised that her right coronary artery (RCA) had improved to within normal parameters (around 2mm), leaving just the left coronary artery (LCA) and left anterior descending (LAD) with reduced, but significant, dilation.  The aortic valve had ceased leaking some time before.

I remember at the time asking the cardiologist (who wasn’t our usual one due to a mix up in dates), whether the swift improvement was cause for concern in relation to longer-term issues, such as stenosis (narrowing of the coronary arteries), but he had said that there was no evidence to suggest that was the case.  And so I made my peace (kind of) with the condition of Freya’s heart, and accepted that things were improving and that her prognosis looked good, regardless of how scary it all still was.

Her last appointment in our local hospital was a disaster.  We were kept waiting for nearly 3 hours with no explanation before finally being seen by a consultant who felt under-qualified to deal with Freya’s case.  Nevertheless, she performed an echo, the results of which suggested there had been no change since the previous echo.  No change is good news in these cases – at least things hadn’t got any worse.  Had she told me there was some improvement, however, I would not have believed it, and immediately contacted the original hospital to request that we be moved back under the previous cardiologist.  Sometimes convenience isn’t the best option; I would travel 10 times the distance for Freya to be treated by someone that I trust and respect.

Today found us back in Leeds, back with the Cardiologist that first treated Freya, and has taken pretty good care of her ever since.  She is the same Cardiologist who took me in a room and explained the risks of Freya’s condition back in June; the same Cardiologist who I went to battle with over not giving Freya Warfarin despite the treatment protocols suggesting that was what she should have.  She made a strong case, one strong enough for me to put my trust in her.  It was the hardest decision I have ever had to make, but it appears to have been the right one.  Freya has been thriving since her diagnosis, she appears to show no adverse affects, no night terrors, no evidence of joint pain, none of the things I see mentioned in many social media forums.

So come on then, tell us the news….

Ok, so today Freya had an ECG and an echo.  As usual, the ECG showed that heart function is all good.  During the echo, the Doctor remarked that Freya’s heart function was “Beautiful!”  She measured the arteries at their widest points and remarked that she could see two aneurysms on the RCA.  I was surprised by this, as previously we had been advised that the RCA had normalised, and I wondered aloud whether as the artery had remodeled, could any ‘true’ aneurysms now be more noticeable (Freya’s arteries were significantly dilated all the way along, without the typical balloon shape aneurysm you expect to see when you use the ‘a’ word).  The doctor went in to look again, and could not get the same image, or any image to show the aneurysms she believed she had seen.  Perhaps it was a bad angle?  Maybe Freya wriggled too much for her to get the same view?  I’m not sure, but the Doctor concluded that all three coronary arteries (the RCA, LCA and LAD) appeared to have remodeled to within normal parameters!  Wow! That’s cause for celebration!

During the acute stage of the illness, we were advised not to expect to see any improvement at all until Freya was at least one year old.  To have seen her arteries reduce to near-normal levels in just 8 months is remarkable!  She truly is a miracle.  Or maybe this is just the case with tiny babies?  Sure, they are hit hard by the illness and more of their little hearts suffer, but their organs are still developing and perhaps they just compensate for the damage and work harder to repair it?  Who knows? Research is still very much in it’s infancy (thus my passion for fundraising for this cause).

We sat down, and I asked my husband to dress Freya whilst I asked the questions I had prepared before I went in.  These are the questions I wanted to get answers for:-

  • What do you consider to be the current risks?
  • What are the exploratory steps we can expect for Freya?
  • When would those next steps take place, i.e. at what age?
  • What is the view on Reye’s Syndrome, and what are the suggestions in relation to aspirin during the Chicken Pox vaccination period?

Before I had the chance to ask my questions, the Doctor started to answer the first.  She exclaimed that the improvement was indeed remarkable, but that the speed at which Freya’s arteries had remodeled was unexpected and gave her cause for concern.  She knew that I understand that an echo can only see approximately 3mm of the length of the coronaries, and explained that she was concerned about what was happening beyond what she could see.  She aired the same concern that I had raised back in the Summer when I told another Cardiologist that I was worried that the swift remodeling could result in higher risk of stenosis.  Sometimes I wonder if I am bloody psychic!  She said that she would be happier if she could take a closer look at Freya’s heart to satisfy herself that the whole picture was as good as what she could see.

So, what’s the good news?

Ok, so the good news is that Freya’s heart has shown remarkable improvement, basically remodeling itself to where it should be, or would have been under normal circumstances.  If the next steps prove that the bigger picture is the same, the Cardiologist feels she would be comfortable to stop the aspirin.  That means that Freya would continue to be monitored into adulthood, that further tests (exercise stress testing, MRI, etc) would continue to take place during that period of monitoring, but that she would be treatment free.  Fantastic! That would be almost ‘normal’.  Wouldn’t it?  Wouldn’t that just be normal?

Yeah, so that’s sweet isn’t it?  What’s there to feel bitter about?

Alright, alright, I know what you are thinking!  For months I’ve suffered mentally over the prognosis for Freya and the fear that comes with having a child with a heart condition.  I should be unconditionally happy, right?  It’s just that the way they want to find out what is going on with the bigger picture is to carry out an angiogram.

“An angiogram is a test that’s used to find out more about your heart. It can help to show if blood vessels called coronary arteries, which supply blood to your heart, are narrowed or blocked. If they are, it can show where and how severely they are affected. It can also see how well your heart is pumping blood.”  http://www.bupa.co.uk/health-information/directory/a/angiogram

Whilst a CT or MRI are preferable in a child as young as Freya because they are non-invasive procedures, an angiogram is considered (by our Doctor) superior to a cardiac CT or MRI scan in that it provides a clearer image where the arteries concerned are very small, like in a young child.  The procedure involves inserting a catheter (a thin tube) into an artery in the groin or wrist and guiding the catheter to the coronary arteries where dye is inserted and a number of x-ray images are then taken.  Freya would need to be sedated, likely to go under general anaesthetic.  Not only is it invasive, but it is a procedure where the risks are greater the younger the child.

It is considered pretty standard practice to carry out an angiogram, or other exploratory test, a year after diagnosis with KD.  However, an angiogram is not performed in very young children without careful consideration.  We were told that the catheter that is used is kind of a one size fits all; they will use the same sized tube to enter Freya’s tiny arteries that they would use on an adult.  We were also advised that young babies’ arteries are quite sticky, and have been known to grasp onto the catheter,  causing the artery to spasm.  This can cause a heart attack.  The Cardiologist said that the hospital will be reluctant to carry out the procedure on Freya at such a young age (she will be 14 months old when she is a year post-diagnosis), but said that she feels that Freya is a special case and that it is important that this step be taken.  She says she will convince them to do the procedure.  I replied, “Thank you…I think.  I mean, on the one hand you are keen to move things forward and a clear result could end with us stopping the aspirin.  But you are expediting a potentially risky procedure and I am not sure how I feel about that.”

But I do trust her.  I think.  Didn’t stop me from e-mailing the world’s leading Kawasaki Disease expert for her opinion though…

And that’s where I am right now.  I’ve written this down to provide an update, but mainly to try and work out how I feel about it all.  I’m not sure, I feel quite numb.  So I am just going to dump all the crappy thoughts that are running through my head right now, and hopefully the answers will come to me over the coming days or weeks.  Excuse the rantings of a confused mind…

  • Here we go again, as soon as I let my guard down and ignore my instincts, someone goes and throws a curveball!
  • I knew this was going to happen!
  • I knew that there was a chance that the fast improvement was too good to be true.
  • What if I lose her after all?
  • What if I can’t bear to watch her go under general anaesthetic again? It was like watching her die on that table.
  • What if she doesn’t wake up from the anaesthetic?
  • What if she has a heart attack?
  • What if she dies?
  • What if she dies because of the procedure and they tell me everything was ok anyway?
  • What if there are signs of stenosis? They can’t operate on her this young anyway.
  • What if there are no signs of stenosis, but it happens when they’re not looking and she dies?
  • What if we say no to the procedure? How much potential danger would we be putting her  in?

I think that’s about all I can figure out from the fog right now.  Somewhere in there, though, there is a tiny voice of hope.  ‘Ant’ is doing her best to drown her out, but I hear her.  She sounds how I imagine Freya to sound in a year or so.  I see those eyes through the fog too.  They are looking at me, huge and wide, and they are saying “I’m going to be ok, Mummy.”  This kid is miraculous.  She is made of something stronger than you and I were made of.  Maybe, just maybe, she is going to prove them all wrong.  Maybe, (and I don’t consider myself religious so this just came as a huge surprise to me, hitting me like a juggernaut and reducing me to sobs), just maybe, someone heard my prayer….

IMG_5289

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.”  

image1

Please feel free to like, share or comment on my posts. You can also learn about Freya’s journey with Kawasaki Disease at http://www.facebook.com/freyasstory

An Exercise in Mindfulness

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

(Source:Google)

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

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

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

Intrusive Thoughts

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

So, let me give you a few examples.  

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

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

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

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

Flashbacks

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

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

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

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

Letting Go

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

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

Treatment

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

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

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

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

 

Wish me luck.

The Loneliness of Motherhood

Ok, so I am sure I will be shot down by all the mums who adore every baby-yoga filled second with their little ones, and those mums who go out to to work and would love to be at home with their children instead, but do you know what, being a stay-at-home mum is pretty darned lonely at times.  Today is one of those days, nothing planned, not another human in sight, just me and Freya and daytime TV.  The feeling starts to creep in mostly when Freya is napping, and I find myself wondering what to do next.  The laundry is all done, I’ve finished the ironing, even managed to grab a snack and drink a cup of coffee while it was still hot.  I have created a list of jobs to do, some important, some completely frivolous, but if I completed the list today, what would I do tomorrow?

I like making lists. I have a number of lists on the go at the moment.  I have a comprehensive to-do list which is a brain dump of every single thing I would like to achieve, from cleaning the downstairs loo to writing a novel.  And so that I don’t get too overwhelmed by the huge list I have created, I then have a daily list where I take three or four of the items from the full list that I would like to achieve today.  Sad, eh?! So today’s list reads:-

  • Freya – Doctors 09:40am, village
  • Finish laundry
  • Change beds
  • Contact list for party venues

The clock says 13:07, each item on the list has a satisfying tick by the side of it, and I have also achieved the following:-

  • Made middle child’s packed lunch
  • Dropped said middle child at school
  • Walked 1.5 miles from school to doctors (need to burn off the Christmas pudding)
  • Fed baby
  • Changed baby (multiply that one by 4 or more)
  • Unloaded dishwasher
  • Washed bottles
  • Measured baby formula into storage tubs
  • Removed labels from baby formula tins for possible future upcycling project that I will probably never get around to

Rock and roll!  I now find myself looking around the playroom (sounds grander than it is!) where I am sitting to write this, wondering what I should do now.  But I know there’s not much point starting anything as I really need to go and wake up a sleepy baby because it is time for lunch, and there will be another bottle to fit in before I set off on the 1.5 mile back to school where I left my car this morning.  Then sort kids tea, clean up, hound kids to get in the bath (I have two older ones, as well as the baby), bath baby, feed baby, put baby to bed, sort our tea, clean up, hound older kids to go to bed, stay up until ridiculously late so as to limit the number of hours the baby is left alone (she is insisting on sleeping on her front, and due to recent events I feel compelled to turn her over every time I check on her).  Groundhog Day.

I’m worried I might sound a little ungrateful, particularly as last year was one that showed us how lucky we are as a family, and how precious life is.  But I’m not complaining about my life in general, I just feel a bit lonely today and being a bit of a neghead and a catastrophic thinker, of course this bad day means I have a bad life!  And actually it’s not really a bad day is it, just a bad couple of hours.  I knew this would happen, though.  There was such a build up to Christmas with a magical pre-Christmas trip with the family to London, Freya’s first Christmas, a wedding and New Year celebrations; lots to keep my mind occupied and away from other things that have preoccupied my headspace for some time now.  I had a feeling that it wouldn’t last, and that once all of that good stuff was over, and I was left alone at home (albeit with my beautiful baby girl who I love spending time with – when she is awake!), with no real plans, that I might start to unravel again.

The good thing about having been treated for depression in the past, and the fact that I am quite in tune with my body and mind, is that I recognise the signs when it is lurking around the corner.  Walking around the village this morning, my mind raced with angry annoyance at lots of little things that have got under my skin recently.  Up in that brain of mine was a hive of activity; imagined conversations with people where I tell them exactly what I’m thinking, and decide that I know what everyone else is thinking too.  The fuse has been getting a little shorter too; less patience with the kids, quick to blame rather than accept when little things go wrong, not sleeping.  The good thing is that years of battling with different forms of negative thoughts, and having had CBT and counselling at various stages of my life, is that I now know how to have a pretty strong word with myself.  It’s like I am chastising a naughty child up there; “Pack it in! That’s enough!”  I wonder if that’s what they mean by hearing voices in your head…😳

So, what to do about it? First of all, I am not going to concern myself with this little episode.  In the past, feeling like this would have put me on full alert for a bout of depression to fall upon me and it would almost become a self-fulfilling prophecy.  Nope, that isn’t happening. This is me having a word with myself.  This is January blues, the calm after the storm.  Last year was full of plans, with medical appointments almost every week in one place or another, and a huge desire to go places where I could make memories with Freya, just in case…

I should be grateful for the lack of plans – it must be a sign that things are settling down, that we are getting somewhere close to normal.  It also means that I have a blank canvas ahead of me, and that should be exciting, shouldn’t it? So just because I don’t yet have any plans, doesn’t mean that the year ahead is bleak.  It just means that there are lots of plans left to make (and that I need to kick my Christmas-pudding filled butt into some kind of action to make them).

images.jpeg

And on that thought, right on cue, I hear a cry from upstairs. My sleeping beauty has awoken, and thus the spell of loneliness is broken.

IMG_5004

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.

IMG_1044

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.

IMG_0887

Freya’s Story (26)

Today mummy had a meltdown that she didn’t see coming sweetheart.  It happened in the place where it all began; the place where you were born, and the place where you were nearly taken away.  I hadn’t expected how a visit to our local hospital would make me feel.

You see we’ve been having a few challenges  getting you the medication that you need.  You now only take 2 medicines; aspirin to thin your blood, and lansoprasole to protect you tummy from the aspirin.  The lansoprasole has a strong relationship with the aspirin dose, so if the aspirin goes up, so the lansoprasole is increased to make sure your tummy receives enough protection.  Sounds simple doesn’t it.  Well, it would be if it weren’t for a number of reasons.  Firstly, the aspirin dose (which is currently 5mg per kilo) is prescribed dependant on your weight.  At the last weigh in you were just coming up to 6kg (5.62kg to be precise), so the consultant increased your aspirin dose to 30mg.  Simple.  Ha! Except that aspirin (well, the cheap aspirin that the NHS supplies) comes in 75mg tablets.  Hmm, tricky. So we have to dissolve a 75mg tablet in 5mls of water and then give you 2mls of the solution.  The lansoprasole comes in a 15mg tablet which we have to dissolve in 5mls of water and then give you 1.3mls (precisely!)  Lansoprasole is intended to be placed on the tongue to dissolve, but clearly at your age you’re going to find that a bit tricky, so I have to dissolve it.  And it doesn’t dissolve very well.  Not at all.  So who knows if the right amount is dispersed in the water or whether you are actually getting 1.3mls of the medicine?!  To be honest I am more concerned about the aspirin, and being a dispersible tablet that one usually works pretty well.  Once I’d worked out how to get the air bubbles out of the tubes (syringes doesn’t seem like the right word – no needle?) I felt pretty confident that you were getting what you needed.

We are given a 28-day supply of your medication, which in usual circumstances would be prescribed by your GP.  Except our GP is refusing to prescribe aspirin because you are so young, despite it being vital and authorised by a cardiology consultant.  The problem we have is that aspirin isn’t licensed for use in children, so medical professionals (that aren’t used to cardiac issues requiring this treatment) get a little edgy about prescribing it.  And our doctors surgery had an incident where a baby was  given the wrong dose of aspirin for a cardiac issue as a result of poor communication between the hospital specialists and the GP, so they’ve made a decision that they will not prescribe without crystal clear guidelines from Leeds.  Add into the mix a baby who gains weight exponentially, and slack administration in Leeds, and you’ve got a recipe for disaster where no-one can keep up with the right dose, and our GP has closed that door for now.

This becomes frustrating when we run out before your next cardiology appointment is due, and there is always a window of about a week where I spend hours on the phone back and forth to your GP and the Cardiac Nurses trying to work out how I get you the medication you need it before it runs out.  At the moment you are being seen in Leeds once a month, which is good but even then there is usually more than a 28-day gap between appointments so we’ve found ourselves back in a situation where your medication has run out, but you are not back in Leeds until the 7th September.  A few phone calls though, and one of the Cardiac Nurses managed to organise for the paediatrician you were originally under in Doncaster to prescribe the medication (yay!) so today we had only to take a trip into town, rather than a 40 minute drive to Leeds.

When I set off with you and Fin in the car I had no idea that this trip would end as it did.  I was completely calm, matter of fact, a mum in a car on her way to pick up a prescription.  I had to go to the Children’s Observation Unit in the Women & Children’s Hospital to collect the script and then take it to the hospital pharmacy to collect the medication.  As I pulled up to the car park I did get a sense that this is where it all began, and I looked up to the top floor of the hospital and recollected those wonderful moments when I gave birth to you, my beautiful baby girl, and set free all the fears I had during the pregnancy that something bad was going to happen to you.  I took a deep breath and made my way into the hospital, called the lift and made my way with you and Fin up to the 4th floor.  The Children’s Ward, where you spent the first 8 days of your illness, was to our left.  There was a sign on the door saying it was closed.  Not permanently I guessed; sometimes when the wards were short-staffed they pooled the resources into one ward rather than keeping both open.  We turned right and approached the door to the Observation Unit, the unit where we took you after we had been seen in A&E.  I had taken just a few steps before a feeling of panic overcame me, and began to cry unexpectedly.  But I had Fin with me so I needed to be strong and brave and not let him, or you, see me sad.  So I shook it off and pressed the buzzer, but I couldn’t hold it back and walked into the Unit with tears streaming down my cheeks.  A nurse approached, she looked concerned, but I tried to collect myself and told her that I was there to pick up a prescription for you.  She asked me what the prescription was for, and for the first time since this whole ordeal began I could not for the life of me remember the name of your medication!  I remembered the aspirin, but no matter how hard I tried to summon up lansoprasole in my mind, it would not come.  I felt under pressure from the nurses watching the crazy woman (me) in the reception area, crying and looking like she was going out of her mind.  They said it didn’t matter and found the prescription for me.  I left the ward, and once out on the landing area I fell apart in heavy sobs.

I don’t think I’ve experienced a panic attack before, but I would say that was what I had right there on that landing.  I was gasping for air in between the sobs and I felt like it was never going to end.  Finlay looked up and said “why are you upset mummy?”, which pulled me from whatever it was that I was in and I took a few deep breaths before shaking myself off and heading towards the lift.  Although I was able to hold myself together better, I couldn’t stop the tears from flowing.  Seems to be the case these days – I can go days without shedding a tear, but when I do allow them to fall there’s no stopping them.  It’s worse when I am on my own and I am left with my thoughts trying to process the hell that we have been through together.  I must have looked a mess by the time we got to the pharmacy, and I really could have done without the rigmarole that followed as the pharmacist questioned your medication, the dose, the way in which it is administered.  We definitely need to get a more robust plan in place for your medication, especially when the cardiology appointments start to become wider apart.

Your Annie Nic says that I should go and see my doctor; that it isn’t right that I should have such bad days or that I find it hard to be alone and I might need some help to come to terms with it all.  But I think I am doing ok.  As well as can be expected anyway.  It’s kind of like post-traumatic stress isn’t it?  And it’s bound to come out now that things are settling and there is time for me to think about me.  I don’t know.  Right now I feel so confused about it all.  I feel like I’m doing ok, and then I’m transported back in time to those days where you were not my little Freya, when you looked so lost and confused and I couldn’t make you feel better.  I wonder how long I will be haunted by the memory of those weeks we spent in hospital.  If there will ever be a time when I look at you and realise that I’ve forgotten about anything but how wonderful you are.  I hope so Peanut, I really do,  because I don’t want to waste our time together agonising over what might have been.  The worst did not happen.  You fought back, and your little face shone again, and it continues to shine brighter every single day.  That light is the fuel I need to keep me going.  I’ve said before, this world is a much brighter place because you are in it.  I love you, I always will.