Last night the mother of a baby with Kawasaki Disease who I have been in contact with a lot over recent weeks sent me the link to an article by a mother who wrote in the New York Times about her experience of being faced with life-threatening illnesses in both of her children.  I read it when I woke up this morning, and was struck by the eloquence with which the article was written, and how well it described a feeling that I haven’t yet been able to put into words.

You can find the article, entitled “My Daughters are fine, but I will never be the same”, posted on Freya’s Story’s Facebook Page – http://www.facebook.com/freyasstory

There was one theme within the article that struck me more than any, which is captured perfectly by the author; “I’m still parenting without the illusion of a safety net.”

And that really is it.  When you have children you go about protecting them from the moment they are born.  Before then even.  You take the right vitamins, you stop drinking, quit the fags, eat a bit healthier than you might have done before.  You make sure that you and your baby stay out of danger, and covet your bump whilst your baby grows inside.  And then when they arrive, you feed them your milk because breast is best and you want to make sure, no matter how long you manage it for, that your baby gets the best possible start.  You cradle their heads to make sure they don’t come to any harm, you watch over them like a lioness whilst they are sleeping, or while the other children (less gentle than yourself) are trying to coax a smile from a days-old baby with a garish plastic toy that your tiny bundle can’t even see!  And that instinct to protect your brood doesn’t stop there.  It’s all immunisations, bike helmets and road safety, lollies and running, fingers in doors and all the other perceived dangers we read about in social media or see on the news.  And that is what parenthood is about.  It is about providing a safe environment within which your child can thrive under your unfaltering protection.  Until your child is struck by illness.  And I don’t mean the colds and snuffles that mum’s fret over on Facebook every day either.  I mean a serious, critical, life-threatening kind of illness.  One like Kawasaki Disease.

Since all of this began, I have had a sick, empty, anxious feeling in my belly that I can’t describe and have not been able to explain.  I didn’t know what it was until now.  I feel incomplete in some way, and I feel that way because part of my natural motherly instinct has been cruelly extinguished by this experience.  One of the fundamental parts I am here to play in my children’s lives is that of protector.  And I now know that the ‘safety net’ that we so carefully place around our precious ones is just an illusion, and that acceptance has shaken everything that I believed about parenthood.  And knowing that I cannot protect my children, particularly Freya, from everything is a cross that I will always struggle to bear.

Logic tells you that you never really were able to protect your children from everything anyway.  Of course I know that.  I know that the lessons I teach my children can only help to reduce the probability of something happening.  You cannot make it impossible; bad things happen.  I know that I could fall in front of a bus tomorrow and be killed.  It is possible.  Is it probable?  Don’t be daft!  And with the treatment that Freya received, and her continued improvement through her convalescence, I do feel it is highly improbable that she will be taken from us by this awful disease.

The conversation that I had with my ‘kawabuddy’ just before she sent me the article led me to open up about thoughts and feelings that thus far I have kept pretty well hidden in the darkest corner of my over-active mind.  And though it feels like a risk to share some of that here, publicly, I do feel that maybe there are hundreds of mums just like me and her who think and feel these things, but deal with them in fear and silence, allowing them to eat away at us and make us feel like we are going slightly mad.  I guess it’s kind of a taboo subject to talk about death.  Especially the death of a child.  And even more so, a death that hasn’t happened yet and perhaps never will.  I have had visions of my daughter’s death.  I have watched it played out in my mind like a tragic movie, seen myself waking to my daughter’s lifeless body in her cot, heard my screams as I am hit with the realisation that she is gone.  I have seen myself walking towards a church altar where that photo stands threatening to haunt me forever.  I’ve taken photographs of Freya, and heard a little voice telling me that they will give me comfort when she is gone.  I am sure that makes me sound like I’m losing my mind.  But I’m not.  Trust me, I know how that feels! I’ve suffered from deep, dark depression in the past and this isn’t that.  I am not depressed, I have been shattered by a traumatic event and am coming to terms with that day by day.  The psychologist in the hospital told me this is called ‘anticipatory grief’; “grappling with and grieving a loss before it completely unfolds..”  I was mentally preparing myself for the very worst that could happen, and through that preparation my mind went into over-drive and my imagination created images I try hard to forget.  They still pop in from time to time, but I close my eyes tight shut and shake my head and they’re gone as fast as they came.

I used to cry when I held Freya.  Tears of sadness and fear that I may lose her.  I still cry when I allow myself the time to stare into those ocean-deep eyes, but I think now those tears are more from thankfulness that my precious miracle is still here.

Today didn’t start very well.  I hate this disease, hate how it makes me feel.  I am happy, and lucky and loving life and then I’m confused and hurt and afraid all at once and it’s exhausting.  And it’s not even happening to me is it?  It’s my little Peanut who has been most affected by this disease.  Or is it?  I mean, looking at you, you wouldn’t even know that you are anything other than perfectly healthy.  I’m convinced you can’t remember being so poorly and you show no signs at all of feeling anything wrong inside your little body.  Your heart is the one that is physically broken, but mine feels broken too, in a metaphorical kind of way.

The thing with this disease is that there is so much conflicting information and advice, the prognosis differs so much with each individual’s experience, and so you feel out of control.  And for someone like me, feeling out of control isn’t good.  It drives me into a desperate search for ways to gain control, and that’s when I can become a bit obsessive – mainly in researching and reading and learning and talking.  At the moment I feel like I am nothing except for a bundle of facts and feelings about Kawasaki Disease.  I don’t know how to exist outside of this bubble.  If I’m honest, I don’t think I’m doing a very good job of existing inside of it either.

I wish I were one of those people who didn’t think so much about everything.  Over-thinking just ruins everything before it has even threatened to happen.  I’m angry at myself for promising to make this life count, and then leaving you to play in your chair while I do the ironing.  I have a constant battle going on in my head; is normal good?  Or is normal going to get in the way of making sure I don’t take you or our lives for granted? Why do I even have to think about it! I wish I could just get on and do and let everything just fall into place.  Jeez I’m drained by it all.  We had a lovely family day out yesterday, and I didn’t think about your illness once.  And today it has all come back and smacked me in the face.  I mean, you don’t actually have Kawasaki Disease anymore do you?  Kawasaki came along, hurt you badly, messed you up a bit and then left.  Only another 12 sleeps before we get to have a look at the little ‘present’ it left you with, and check out the current state of play.  You have no idea how much I want you to be a miracle.  For us to go on the 7th and the Cardiologist be amazed by the complete recovery of your heart.  You were an enigma in the hospital until they worked out what was wrong with you, be an enigma now and show them the impossible! Prove them wrong.

I know that what I am feeling is probably to be expected after our ordeal.  I guess it’s like a post-traumatic reaction, not to mention the fact that you are still a young baby and my hormones will still be all over the place.  You were 7-weeks old when you became ill.  7 weeks.  That wasn’t supposed to happen.  And I know that I should focus on the here and now, and take each day as it comes, but I haven’t been in the mood for those cliches today.  I want to though honey, believe me.  I want to marvel at how good you are, and how perfectly well you look and seem to be.  I want to focus on all the things people tell me that make perfect sense, about what you have already overcome, the treatment you have received, the ongoing improvements with each hospital follow-up.  The fact is, I’m too scared to say it out loud.  Too scared to admit that you may well have beaten this disease and that in a few years’ time we won’t even remember any of it.  Kawa-What?! I’ll say.  And then I’ll have this fleeting memory of a really bad time you had all those years ago and laugh at how scared I was.  But then I do some more research, or I read the posts on the support group pages that I’ve joined and one after the other the comments pile in, all reminding me of the long term effects that this god-awful disease can have on a child’s body.

And breathe.

So what shall I do about this mood?  I will continue to tell myself that thoughts are not facts and remind myself that the people who are posting in the support pages are looking for support, which means they must still be on their journey with KD or have a concern about their child’s health post-KD.  Which must mean that there are many other parents out there who have done their KD time, and have come out of the other side and put their ordeal well and truly behind them where it belongs.  They’re not members of the groups are they, because they too found it hard to be reminded of something they would much rather forget.

I have made what I consider to be a good ‘friend’ on this journey.  She’s my text-friend and her baby is around the same age as you were when you were diagnosed.  She is still early on in her journey, and she’s got some stuff to deal with right now that we can be lucky we didn’t have to worry about.  I was upset this morning and texted her a few times about how I was feeling.  I was sad because I’d left you alone playing on your mat while I ran around tidying and cleaning, and when I came to see you, you had fallen asleep. I felt like a terrible parent a) for leaving you, b) for missing out on an opportunity to play with you for the sake of catching up on some ironing, and c) for the fact that you were alone when you fell asleep.  She said something that made me smile through this cloud, and put things into perspective.  She said that there are mums on parenting forums at their wits end stressing because their babies won’t stop crying.  She said we’ve been “right there through everything for our babies; they know how loved they are.” And you know, she’s right.  You don’t cry much at all.  You take everything in your stride like you’ve done it 100 times before.  You don’t moan about a dirty nappy, or cry for a feed.  You tell us when you are ready for bed, and when you go up to bed, that’s it, we don’t hear a peep from you until the next morning (this morning it was after 9am!)  You are happy laying on your mat or in your chair playing, whether you have someone there to play with you or not.  And when you feel sleepy, you close your eyes and you go to sleep.  Just like that.  And when you wake?  Well! The picture here says it all.  Your Auntie just said that you may well be the happiest baby in the world.

I haven’t written to you since the 17th July, but I have been very busy since then settling into our life back at home.  I’ve also started to capture your story in a blog (this blog) to raise awareness of this horrible disease that you have.  Or had?  Hmm, I guess you no longer have Kawasaki Disease because all the symptoms of that have been dealt with. What you have now is a coronary complication that we hope will normalise over time so that we can all put this awful ordeal behind us.  I just wish someone had a magic wand which could zap it all away.  I hate now knowing what is going on inside your body, not knowing what your future holds.  And yes, I know that no-one has a crystal ball and we cannot know what is around the corner for any one of us, but that’s just accepted isn’t it.  It’s different when you know you’re broken.  You could be driving a car down the road when a wheel falls off.  That would be unlucky.  But if you knew that the wheel nuts were loose when you set off, the likelihood of the wheel falling off would be higher wouldn’t it.  I’m not anxious about driving a car, but I sure as hell would be if I knew the wheel nuts were loose!  And so I’m not generally anxious about life and mortality, but I am anxious about you.

We’ve got another 14 sleeps before your next cardiology follow up.  14 sleeps!  That’s 14 more nights of me lying awake until the wee hours of the morning to minimise the time that I am not fully aware of you. I lie awake listening for your breathing, but you sleep so peacefully that I struggle to hear you.  Especially when you are competing with the noises outside the window, or Daddy’s snoring.  I lay there for ages willing you to make a sound, any sound.  I’ll just give it one more minute and then I’ll check.  Except I’m often too scared to check.  So I wait a little longer, holding my breath, and mostly my ears are greeted with a rustle from your sheets, or a grunt as you fidget momentarily and I can breathe again.

For some time now you have been sleeping through the night.  When you were in the hospital you automatically fell into a 4-hourly feeding routine in tandem with the nurses’ observations.  And after a while, you stopped waking in the night for a feed.  The nurses would come into your room at 2am and deftly unbutton your sleep suit to attach the probe to your little foot to measure your oxygen saturation levels and heart rate.  They would take your blood pressure and your temperature.  Sometimes they would administer intravenous drugs through a cannula.  Then they would button you back up, replace the covers, and tiptoe out of the room.  Some would glide in and out of the room and undertake your observations so quietly that even I didn’t wake.  Others would whisper reassuringly to you to as they went about their business.  One nurse would call you ‘sausage’ (she was really sweet), another would stroke your head.  All this, and you hardly ever stirred princess.  I suppose if you can sleep through all of that, in that environment, then I shouldn’t be surprised that you sleep so well now you are home.

You enter what is affectionately known as the witching hour at around 5pm every day without fail!  You are not particularly difficult to deal with, mainly whimpering and whining.  If you could speak I’m sure you would be saying “Why am I not in the bath? Why do I not have my pyjamas on yet?  Where is my bedtime bottle??”  And it really is as simple as that.  It’s like a magic formula to unlock the gift of sleep and once we have carried out these simple steps you are tucked up in bed by 6pm and do not wake until around 8am the following morning!  I couldn’t ask for more than that.  Except for the fact that the more hours you sleep, the more I worry and wait anxiously for you to wake in the morning and I can breathe a sigh of relief that you made it to another day.

I am not going to lie to you sweetheart, dealing with this thing is hard.  It’s damned hard.  And it is made even harder by the fact that I feel like I am dealing with this on my own.  Now that we are home, and your beautiful smiling face can be seen across Facebook once again, I think everyone just assumes that we’re ok.  That I’m ok.  But I’m not, not at all.  I have no idea what I should think or feel from one day to the next.  Whenever I find myself feeling happy with you, there’s a nagging voice telling me not to count my chickens.  My experience in the hospital taking care of you has taught me to expect very little, because every time I allowed myself to be hopeful this disease would come along and burst my bubble.  People say I am a ‘neghead’.  I’m not.  I’m a realist and I don’t bury my head in the sands of hope and ignorance just because I don’t want to believe something bad could happen.  And I’m protecting myself I guess.  Because if I really start to believe that you could completely beat this thing, I will stop worrying.  And if I stop worrying, I might become complacent.  I might decide that a morning in front of Jeremy Kyle once in a while isn’t such a bad thing, and before you know it days, weeks, months will have passed with little or no event, and those memories I promised we would make would be nothing more than empty words.

During my life I’ve been emotional, depressed at times (like when I had your older sister and I came apart at the seams).  I have never felt anxiety before, but I think this is what I am feeling now, and it is ever present.  I often feel like I have to remind myself to breathe, like I am holding my breath just waiting for something to happen.  I have butterflies in my stomach constantly.  Another mum in my position recently said it feels like our hearts are outside of our bodies.  Somehow that phrase summed it up perfectly for me.  You are my heart, and when I am not with you I feel the empty space all the more.  We are a perfect fit, you and I.  When we are together, the empty space is filled with all the love that radiates from you; yours is not the only heart that needs mending sweetie.

But enough of all that!  We will get through this you and I.  Each day we will get a little stronger; you physically and me emotionally. And we mustn’t forget the impact that this had on those closest to us either.  I may be wrapped up in this little bubble with you, but we are not sole survivors of this episode.

I made a promise that I would make this life with you count, whether it be for 50 days or 50 years, and when I was in the hospital I mentioned to your Auntie that I was writing a ‘Bucket List’ for you.  She didn’t like me using the term, so I agreed I would change it.  So the ‘B’ became an ‘F’ and the new list was born (I’m hoping by the time you read this you are either too young to work that out, or old enough for it not to matter!) But I don’t mean for the list to include big bang gestures, I mean to enjoy the simple things with you.  To not care about the growing ironing pile when the sun is shining and I could be out enjoying  life with you.  It’s stuff that I guess most parents take for granted, but with Eliza and Fin I always felt like I had to be Superwoman.  I don’t want to waste a moment of your life concerning myself with things of no importance.  Carpe Diem!   Which is what we are doing tomorrow.  We have something exciting planned, but for now it’s a surprise so you will just have to wait and see.

Today we had a party for a very special person in our lives; my best friend, my husband’s sister.  We had a fantastic time (once we had rescued the gazebo that decided to take flight in a huge gust of wind).  Greek inspired al fresco dining, candles and music.  A perfect way to spend a Sunday afternoon/evening.  My eldest daughter said that she felt so lucky to be part of a lovely group of family and friends.  The kids stayed up late, and behaved impeccably as usual.  And we spent the best part of half a day with our favourite people in the world.

And then they were gone, and my husband went to bed, and I sat alone for a while in the candlelit garden.  Hard not to let your thoughts wander when you are alone, and it is when I am left to my own devices that I feel the sadness creeping in.  I can’t quite put my finger on what it is that I feel.  It’s a kind of guilt I guess.  This afternoon I truly thought of nothing else but having a fantastic time with family and friends.   The drinks were flowing, the food was fabulous, and the company (as always) was just what you need to forget about past troubles.  But now it is all over, I feel a sense of guilt.  Like I shouldn’t have been able to enjoy myself like that after all we have been through.  But life does go on doesn’t it? And Freya’s story doesn’t have to be defined by her illness?  Surely it is better that her life be full of days like these, surrounded by the people that we love…

It’s surreal to think about how far we’ve come in such a short space of time.  There were times when I thought our lives were over, like Freya’s illness would be our ‘new normal’.  But actually we are enjoying our old normal now, and she fits right in.  Is that right? Should we be carrying on as if nothing has happened?  My head says “of course”, but my heart says “how can you?”  I just can’t seem to wrap my head around it.

Instead of going up to bed when I had finished clearing the empty cocktail glasses, I decided to take one quick look at my Facebook page.  Nothing much to report.  I’d shared some pictures of a collapsed gazebo and a pretty candlelit table, and our friends had commented this or that.  And then I saw in my News Feed a post from a mum who had her own battle with Kawasaki Disease and was less fortunate than us:

“In November will be the 2nd Annual 5k in honor of my son Max. I want to make a banner of kids names who have been diagnosed with KD or passed please comment their name. The banner will be placed at the race. Thank you!”

Even when I read the post, the significance of the words ‘in honor of my son Max” didn’t dawn on me.  Within the last 3 hours, over 60 people have posted their children’s names.  I am one of the people who posted.  59 people posted their child’s name.  One had a different message to send:

“…unfortunately I feel your pain. Our boys should not have died from KD…”

And there it is again, the stark reality that Kawasaki Disease is a killer.  Just as I start to put this thing behind me and believe that there is life after KD, I am reminded that there are many out there who have fallen victim to this terrible disease and not lived to share their story.  I am humbled.  I count my blessings that Freya seems to have beaten this illness, and that her tiny heart is slowly recovering.  But I cannot reconcile myself to the fact that my baby girl was subjected to this devastating disease.

I know I should be grateful that she is here with us now, smiling and laughing and fitting in with the life that we have.  I should congratulate myself for fulfilling my promise to her to make every day count, and to live life to the fullest.  But that somehow feels crass when I have just read what I did.  I wonder if there will ever be a time when I can just enjoy this life for what it is, and not what is has been or what it might yet be.

Friday 17th July 2015, 20:36pm (Day 48, final journal entry)

“…It’s a strange feeling that I am left with when I tell someone about your adventure.  At the time I am very calm, delivering details like I could be talking about anyone.  I say how much of a fighter you are, they say how strong I am, and I don’t believe a word of it…

As for my strength, I’m not convinced.  I must admit I’m not as  bad as I thought I would be.  I’ve been comfortable with you at home, just as comfortable as I would have been had none of this happened.  People have asked if I’m sleeping okay.  Well, you are a perfect baby and you sleep 12 hours through the night, so sleeping isn’t an issue for me.  If I’m honest (and I have not said this aloud yet) it’s waking up that I’m afraid of.  The fear of waking to find you gone fills me with a dread and an emptiness that I cannot find the words to express.  Most days I don’t think about it; I’ve buried those thoughts, pushed them away into a dark corner of my mind.  But at times when I least expect it, these thoughts and feelings creep out of their dark corner and smack me right in the face.  I don’t know where they come from or what sets them free, but they sneak up on me so fast that I can sob out loud and surprise myself with the sound.  It happens most when I am holding you…That’s when my mind wanders and I receive a stark reminder that you are still broken.  You are home, you’re in your chair, or on your mat sleeping, you’re napping in your moses basket.  I’m changing nappies, bathing you, choosing your outfits, washing, ironing, cleaning, sterilising bottles, living normal life; but you are still broken.

I don’t know how I will ever shake the fear of losing you, or how I will ever deal with a life in which losing you is a reality.  I would write how I feel, but there are no words to do this feeling justice.  When your heart broke, mine broke with it.”

It has been 48 days since we left the care of the hospital and the same feelings, fear and heartache remain.  How I long for the day when this is just a blip on Freya’s journey through an otherwise wonderful life.

So, tonight’s blog will bring us to the ‘end’ of Freya’s Story to the point that we left the hospital.  After we were discharged, I wrote only two more entries in the journal that my sister-in-law (and best friend) had bought me.  In the hospital, writing in my journal became part of my daily routine, and once I had settled Freya to sleep at night I would get ready for bed and lie down and write whatever came out on the page before eventually settling off to sleep myself.  Once we were home, the routine changed.  I was no longer alone at night with nothing but my thoughts, a pen and a book.  And then I made the decision that Freya’s story was one that should be shared.

During our time in hospital we said very little about Freya’s illness.  I had already retreated from social media about a week before she became ill, and it took a while for people to notice my absence.  That’s when the messages started; people asking me if everything was ok, they’d missed my daily updates or pictures of the baby.  I was so confused about what to share.  We hadn’t even told our all of our family what was happening.  We had told our other children that Freya had a bad cold and that because she was too young for our medicine she had to be treated in the hospital. Fin showed his concern for all of 5 minutes before he asked if that meant he wouldn’t get to play Minecraft on my iPad for a while.  Eliza, being the eldest, was more aware that something wasn’t quite right but seemed to buy our explanation.  Luckily she was away on a school residential trip for the first week of Freya’s illness and didn’t get to see me or Freya at our lowest.  By the time people’s suspicions were roused, we had received a diagnosis.  I answered a few of the messages, and when there was good news I would deliberately send a message with an update, but then the next day I would be asked how Freya was doing and the picture would have changed so dramatically that it became too much.  In the end, I decided that my husband and I needed a ‘back story’. One that would inform people of the extent of Freya’s illness without giving it a name, and asking that we be left alone to come to terms with what was happening to us.

Even towards the end of Freya’s time in hospital I decided that I didn’t want people to know about the coronary complications.  I was afraid of people’s pity, of people looking at Freya with sadness, or of being judged by our actions with “that little girl with the heart condition.”  I didn’t want my children to find out that their sister had a potentially life-threatening condition, and felt that we needed to contain the information as much as possible to protect them.  And I wanted to protect Freya too.  There would be a time when we needed to tell her about her condition, and I wanted that to come from us when the time was right.  But as we started to truly understand the illness, and it became clear just how little is known about Kawasaki Disease in this country, I felt we had something to give.  So I sat down with my husband and told him that I wanted to blog Freya’s Story, to raise awareness of this disease.  I wanted people to understand what we had been through so they could stop asking questions, stop telling us how pleased they were that Freya was “better” now that she was out of the hospital.  I wanted to share thoughts and feelings that I find easy to put in words, so that other parents suffering who may not be able to articulate their feelings could see they were not alone.  And I felt if even one child received a correct and timely diagnosis and one parent could be spared the agony we went through by raising awareness, then we had a good reason to put Freya’s journey out there.

And so, I’ve nearly caught up on the events of the last few months so I will share the last few entries and then a new chapter can begin.  Freya’s condition has improved greatly since we left the hospital.  She continues to have regular cardiology checks and is likely to be on aspirin for life.  But Freya’s life will not be defined by this damned awful disease.  She will beat it, and we will tell her one day about this horrible illness she had when she was a baby that had us all terribly worried about her for a while, and we will laugh as we watch her take on the world with that smile and those huge blue eyes!

Today hasn’t been a great day for me.  It started badly when I called Freya’s Doctor’s Surgery to cancel the appointment I had made to catch up her routine vaccinations.  The uncertainty surrounding Freya’s immunity and the lack of concrete advice on whether to immunise or not has brought a lot of confusing feelings back to the fore and I felt rather lost again.  On days like this there is only one person that can truly understand what I am feeling, and she is a complete stranger to me.  But our lives are so inextricably linked through our experiences as both of our tiny babies face their own battles with Kawasaki Disease, that it doesn’t feel right to call her a ‘stranger’.  Strange maybe (!), but stranger? No. She is a voice of reason in the lines of a text, and despite being a few steps behind us in her own journey manages to find the words to make me feel like Freya’s Story could just have a happy ending.  I believed it once, and I will believe it again:

Wednesday 8th July 2015, 14:47pm (Day 39, Discharge Day)

“…You truly are amazing, a little superstar, and I will forever be in awe of you…There will always be an element of uncertainty around how this illness will affect your future, and I hate to get too ahead of myself for fear of jinxing the positive steps you have made, but right now I feel like you have kicked Kawasaki’s butt and there is nothing that can stop you my darling.  You are here in this world for a reason, and I can only pray that you beat all the obstacles you may be faced with, and I look forward to seeing what you will make of this life of yours.  Make a difference, sweetheart…Imagine what you could achieve with just an ounce of the resilience, strength and love that we have seen from you in these first 12 weeks of your life.  There will never be enough words to express my admiration for you.”

Monday 6th July 2015, 22:37pm

“Well little lady, what a day we’ve had today!  We got up and ready nice and early to make sure we were ready for when the ambulance came to take us to Leeds for your cardiology clinic appointment.  It took a while to come, and we were late for our appointment, but [the doctor] understood and fitted us in anyway.

The nurses weighed you and measured your height, and you had another ECG.  Then we went into [the doctor’s]  room where she did your echo.  When she started to measure the arteries she actually said out loud “Wow!” and I could see the numbers she was entering on the screen.   I tried not to second guess what she was going to tell me, but I knew the numbers looked lower than before and the highest number was a 4.  And that is when [the doctor] confirmed that there was no obvious ‘bulge’ and that the biggest measurement was 4mm, which had reduced from 5.2mm on the last scan she performed.  That is amazing in such a short space of time! She said that now the aneurysm measured only (only?) 4mm there was definitely no call for Warfarin.  I asked if it was worrying that they had started to shrink so soon, but she said that she wasn’t worried.  She also said that she had spoken to a colleague from Guy’s Hospital who agreed that the course of treatment she was following was appropriate.

I was so pleased with the result that I cried.  It was relief.  I had expected to hear that there had been no change – to hear that they had shrunk by 20% was more than I could have dreamed of.  I can’t help but worry about getting too excited, because I know that 4mm is still significant in a baby your age/size.  But it means that your aneurysms are now classified as small-medium which is great because it reduces the risk of complications like rupture.  I am going to dare to dream, no matter how loud that voice shouts in my head that we are not out of the woods yet.  I am going to allow myself to believe that you might just be a little miracle.

…You really are an amazing baby, Freya.  You are always smiling and laughing, and today was no exception.  You smiled through the ECG, and you ‘chatted’ away to [the doctor] whilst she was carrying out the echo…At one point you even grabbed the wand and tried to help her!  And when we were waiting [for an ambulance to take us back to Sheffield]...for 6 hours, you didn’t complain once.  You may have a lot of worrying things going on in that little body of yours, but you make up for it with everything else.  You radiate love and happiness.  You make me feel so proud; I am in complete awe.  This world became a brighter place the day you entered it, and every day you make it shine a little brighter.  I think you are really touching people’s hearts on this journey baby.  You are a joy to be around.  If there is anything good that we can take away from this awful experience it is that I get to spend all this time with you.  You make what should be a terrible ordeal bearable.  If it wasn’t for your sweet temperament, your cheeky chatter and that joyful smile, I am not sure how I would be coping.  I am still smiling through this pain because of you.  I am too busy loving every minute with you to worry about what might be.

…This journey has created a bond that no-one else will ever break.  I love you Peanut, I always will, and if you love me back even half as much as I love you I will be a lucky mummy indeed.

Keep fighting little one, we can beat this one together.”

Although I often felt guilty for feeling sorry for myself in the hospital, I think it is only natural for the situation to send a parent a little (or a lot) stir crazy.  I know there are many who have to endure much longer stays, but the thing with Kawasaki’s is the uncertainty and never really knowing when it will all end.  After all, we had made it home once and ended up back in less than 48 hours later, so you can’t blame me for feeling a sense of despair at times.  And don’t forget, only a few weeks before this whole ordeal began I had given birth to my baby.  My hormones will still have been all over the place, and not only that but I’d planned how me and my new baby were going to spend our time together and this wasn’t it.

Friday 3rd July 2015, 15:26pm

“Mummy hasn’t had a very good day today.  I think they call it ‘cabin fever’.  The room we are in is in the middle of the hospital so the view is of the windows on the other side of the building.  The sun has been beating through the window since this morning, and despite keeping the curtains drawn across the main culprit, and keeping the fan on full blast, it was unbearably hot.  And because it is so hot both you and I have been incredibly irritable.

You haven’t known what to do with yourself.  You’ve tried to sleep but woken shortly after.  You have wanted lots of cuddles but when I hold you we both end up sweaty and even more annoyed.

I have been feeling really sorry for myself today.  Not only am I fed up that you are poorly, but I’m fed up that our lives are passing us by in this hospital. Everyone else is out there in this beautiful sunshine doing all the things we should be doing.  I refuse to accept that this is now normal for us.

I have been really emotional.  I even cried over your blood being taken today and I must have seen it done one hundred times or more since you’ve been in here.  Perhaps it’s my hormones.  Or maybe after five weeks in a hospital room I’ve finally had enough.

…I’ve told everyone that I don’t want any visitors today.  I’m not in the right mood and I’d end up being horrible to them.   No-one has any idea what it is like being cooped up in here every day.  Not being able to grab whatever you want to wear, not being able to have a shower, not knowing if the toilet is free.  Not being able to get whatever you want to drink, or make yourself a cup of tea just the way you like it. Small everyday things we take for granted…your little finger nails seriously need cutting but…they don’t have any [scissors] here.  It’s little things like that that make me feel out of control, and I hate it.”

One of the nurses noticed how low I was, and tried to make suggestions to help me feel more comfortable.  I batted back every suggestion she made; I was in that kind of mood.  I always felt really guilty about complaining about stuff anyway.  I mean they weren’t there to look after me were they, and how selfish did I sound moaning about not being able to have a shower when my baby girl was so poorly.  But the nurses said that the care they were there to provide was for all of us, and that my welfare was as important to them as Freya’s.  They said that for me to be able to support Freya, I needed to be taken care of too.  The nurse that day said she had an idea, and disappeared for a few minutes.  She came back and told me that a patient had been discharged from a cubicle across the other side of the ward.  It was shaded and cool, with a view of the park and best of all it had an en suite bathroom!  I cried like a baby!  I had underestimated how important it was for me to feel clean, and like me.  Clean hair and a fresh face were my armour.

“…I am sitting by the window holding you in one arm and writing with the other.  You are asleep and I am watching the world go by.  People walking in the park, cars and buses going about their daily business…Directly in my eyeline across the park is a group of ladies with prams.  They’ve got a blanket laid out on the grass in the shade of a big tree.  I can see one of the ladies standing rocking her baby in the sunshine.  That should be you and me sweetheart.”

I’ll never forget watching those women, wondering whether they even felt the presence of the Children’s Hospital behind them as they enjoyed their freedom with their babies in the sun.  It was then that I decided never to take anything for granted, no matter how small it might be.  I tried to imagine a time when I might return to Sheffield with Freya for a check-up, and we might sit in that park together, feed the ducks, erase some memories.  Not that she will remember any of this; but then that’s why I’m writing isn’t it?

During our time in the hospital(s) I developed a huge amount of respect for the medical staff, from cleaners to consultants.  I really got the feeling that Freya was making an impression on the people she met and that they had more than a basic professional desire to see her well.  The nurses from our local hospital had called up the ward a few times to ask how Freya was doing, and a consultant from Doncaster had also been in to see us a couple of times.  One time we missed him, but he asked the nurse to tell us that although Freya wasn’t with them anymore, she was never far from their thoughts.

“You are certainly making an impression on people my little peanut…All the staff here comment on how cute you are, and what a lovely natured baby you are.  You give up your smiles easily and will ‘chatter’ away to anyone who will listen (that sounds just like me!)…Our nurse from upstairs just came to see us.  He was genuinely sorry to hear that we are back in here…[The Immunology Consultant] came to see you too.  She touched my hand, and I get the feeling that you may have touched her heart…

You are very special you know.  I am in complete awe of your bravery and your manner in dealing with all of this…You are a delight.  In all respects you are the perfect baby, and it is such a shame that you are having these difficulties little one.

Keep strong, keep fighting.  There are bigger trials to come, and we will get through them together.”

The weekend would pass with very little event, but looming ahead of us like a huge dark cloud was Freya’s follow-up Cardiology appointment.  We never imagined that Monday 6th July (Day 37) would be a turning point, and the beginning of a new chapter; of daring to dream.

Going home should have been something to celebrate, but instead I felt scared and alone.  The pressure I felt from the responsibility of preparing Freya’s medication was immense.  She left the hospital on aspirin, lansoprasole (to protect her tummy from the medication), steroids (prednisolone), amoxycillin and fluconazole (they identified Group G Strep infection and oral thrush a few days before we were discharged).  Those in tablet form had to be dispersed in a certain amount of water, and then a specific dose drawn up the syringe to be given to Freya.  The best part about giving the medication was how well Freya handled it.  She sucks on each syringe like I’m giving her a drink!  Now we only have the aspirin and lansoprasole to deal with.

The night before I had left a number of messages via phone and e-mail with the Cardiology team, asking for an urgent conversation with our Cardiology Consultant.  I was consumed by a fear that we were running out of time, and that every minute that passed without adequate treatment for her coronary complications was a step closer to losing our daughter.  I felt sick with worry, and so confused about what I should do.  I mean, this kind of thing doesn’t happen to real people does it!  It happens in soaps and in movies!  Or it happens to someone else.

I had made contact with the KD specialist in the South West of England, and he had concurred with the specialist in Seattle that Freya should be offered an anticoagulant as well as the aspirin she was receiving.  You see, where there are coronary complications the key is preventing the blood from clotting in the artery.  Aspirin keeps the blood thin and flowing nicely, whereas drugs like Warfarin work by preventing the blood from clotting altogether.  That’s why people receiving Warfarin therapy have to be careful with certain activities and are restricted from doing things like contact sports.  I was in no rush to give Freya Warfarin, I mean it’s primary use was as rat poison back in the day!  And I’d heard it was a nightmare drug to administer because you have to be weighed and checked and have blood samples taken on a regular basis.  But I didn’t care about the origins of the drug, or the inconvenience.  If it was what was needed to save my child’s life, then so be it.  The Professor offered to see Freya in person.  I thanked him for his offer, but felt that I ought to obtain a full explanation from our Cardiologist before I made any decisions about how to act.  I gave the Cardiology team 24 hours to put me in contact with the Cardiology Consultant and advised them that I would be taking Freya to Bristol if I did not hear anything by the Wednesday morning.  I was so angry that my first day at home with Freya was overshadowed by this issue, and felt terrible for spending most of that day on the phone or reading and sending e-mails.  But I was doing it for her and it was important that I fight for her.  The US doctor had made me feel like we didn’t have a moment to spare, and I spent those 2 days mostly pacing the house and becoming more and more anxious.  I felt that Freya would die before we had our next follow-up appointment (we all know that wasn’t to be the case, but at the time the fear was very real).

Eventually I received a call from our Cardiologist.  I picked up a pen and paper, and scribbled down everything she said, whether it made sense or not.  She explained that there would be a risk of gastrointestinal bleeding from Warfarin when the patient is taking steroids.  She said that she had individualised the risk for Freya, and that she had considered Warfarin to be inappropriate at that time.  She did say that this might change, but not until the steroids were finished, but that the risks and benefits would change anyway as Freya moved out of the acute stage and further away from the inflammation of the Kawasaki Disease.  She said that there are a number of calculations that can be used to determine a ‘z score’ and that each calculation had resulted in a different number in Freya’s case.  One number had suggested the necessity for an anticoagulant, but another didn’t.  She made a judgement based on what she had seen of Freya.  Then I got the science bit about flow dynamics and the physics of blood flow; that with Freya’s case she was more concerned about lamina flow (not sure if that’s the right term but it’s what I wrote down!) which is apparently the speed of the blood cells moving down the artery.  She said that we should expect further testing in Freya’s future – CT, MRI, Echo, Exercise Testing and angiograms.  All in all she believed in the treatment she was providing, and she did a really good job of convincing me too.  I was considering asking for a second opinion, but that’s not as easy as it sounds and there is a formal process to follow.  Instead I said that when we were at Sheffield, they acknowledged that they were unsure about how to treat Freya and had sought counsel from other specialists in the UK, and I asked if she could do the same.  She agreed to seek advice from the other Cardiology units across the UK, and said she would bring Freya’s cardiology appointment forward by a week so we didn’t have so long to wait to see what was going on.  I still had a niggling doubt about why other experts gave different advice, but felt that I should trust those who were taking care of my daughter, particularly as they had seen Freya’s heart first hand and the others were simply going on the information that I sent them.

It was lucky really that our Cardiologist made the call that she did because of her concerns about gastrointestinal bleeding.  Before we had our conversation that morning (Wednesday 1st July 2015, Day 32) I had changed two nappies that both had specks of blood in them.  I remembered this happening once before in the hospital and the doctors hadn’t seemed too concerned about it so I decided it wasn’t anything to worry about.  However, the next dirty nappy (Freya was having about 15 poos a day!) had a significant amount of blood in it.  I contacted the Rheumatology Nurses in Sheffield to ask what I should do and they asked me to take Freya in.  So, less than 48 hours after our discharge we found ourselves back in the car and on our way back up the motorway to the hospital.

Wednesday 1st July 2015, 22:00pm

“I’m afraid to tell you that we are back at Sheffield Children’s Hospital.  I’ve not written since Monday because Monday night we brought you home…We didn’t do very much. We cuddled a lot! You ‘played’ on your teddy bear playmat – you hated it before all this started and now you love it.  Those beautiful blue eyes of yours, deep as the ocean, bulged with amazement at all the new things you saw.  Yesterday you went in the garden for the first time.  You laid on a blanket in the shade of the playhouse and laughed at the washing blowing on the line.  I could see that you could hear the birds singing in the trees.  It was wonderful sweetie.  Simple things; you and me.”

The blood in Freya’s nappies would get worse as the evening went on, and into the following morning.  I had been advised to save the nappies so the medical staff could take a look.  By the morning I had a collection of dirty nappies in our cubicle so I asked the nurse if they needed to take them to look at them.  As I said, Freya always had a lot of dirty nappies so I was glad when she took them away!  The following day we were visited by the Gastroenterology team. The consultant said that they had looked at Freya’s nappies and saw nothing too concerning.  I was really surprised; the last few nappies had been full of blood.  I expressed my surprise and from what the consultant said in reply I knew they hadn’t seen all the nappies.  Lucky then that I had taken photographs of the contents of every one and was able to show them.  As soon as the consultant saw the photographs she said “now that changes everything” and thanked me for having the foresight to take photographs.  The nurses had thrown the nappies in the bin and they had not seen them.  Taking photographs had become a bit of a habit for me.  Before the diagnosis was reached, Freya’s rash would come and go and you could guarantee that by the time the consultant came to see her it would have gone.  So I took photographs of any visible changes in Freya’s condition, which helped the medical staff see the things they otherwise would have missed.

The Gastroenterologist believed that the bleeding was likely to be caused by the aspirin and said that it would need to be stopped.  I jumped in, “I think you should discuss that with LGI; aspirin is the only thing that is preventing her from having a heart attack, I think they will have something to say about you stopping it.” They were not aware of the full situation and agreed they would discuss with our Consultant and the Cardiologist.  Not surprisingly, the Cardiologist advised strongly against it.  Instead Freya was sent for an ultrasound of her abdomen and the dieticians prescribed a mild baby milk formula which is non-dairy, called Neocate.  The Rheumatology Consultant informed me that he would be weaning Freya off the steroids sooner than planned, and that should we need to take any further action for the bleeding (an endoscopy for example) he was prepared to stop the aspirin temporarily as it would remain in her system for long enough to create a window of opportunity for treatment of this new concern.  After less than a day on the new milk, the bleeding stopped.  The ultrasound of Freya’s abdomen showed an abnormality in the position of the arteries in her bowel.  The gastro team mentioned something called malrotation and said that Freya would have a Barium Swallow Test in a few days. Just when I though there were no more tests or procedures left for her to go through.

Thursday 2nd July 2015, 12:26pm

“I am so worried about you. You are so small and you have been through such a lot.  When is it all going to end?  I feel a huge sense of loss.  I still have you, but I have lost your health.  The heart you were born with is broken and may never be the same again.  You will be on medication for many years and hospitals will be a big part of our lives.  This is the new normal for us.  We won’t know for some time what impact this will have on your life.  What limitations might be placed upon you, or us.  Can we travel…? Can we even fly with you?  Will you be able to do anything you want to do as you grow up?  

...You most certainly have been sent into this world to shake things up little lady.  Our lives may never be the same again, but our lives are richer for having you in it.”