sadness

Ten Things I Hate About You

Posted on by Bluemama

Before we were introduced, I hadn’t really had any real drama in my life. The biggest thing I had to worry about was what we were going to have for tea, or whether I’d overindulged too much to fit into that dress at the weekend. And then you came along, and everything changed. Everything. And even when we met, i didn’t appreciate the impact you would have on my life, and everyone in it. Because what at first seemed like something that would have an effect on just one of my family, very soon demonstrated that it’s effects were more far-reaching than the immediate victim. Your tentacles reached across to touch all of my dear little family, and slithered into every part of my life. And whilst I try hard not to forget the good that came from meeting you, I refuse to accept that you gave those gifts to me. You did not effect those positive changes – those changes came from the strength that I managed to produce in spite of you, not because of you. And so let me tell you, Kawasaki Disease, all the things I hate about you.

I hate that you stole perfect from me. Because that is what you did. You stole the most perfect joy I had ever felt in my life up to the point that my daughter was born. When I look back now to those blissful weeks with my newborn baby, they are over-shadowed by the unseen threat of you. When I look at the few photographs I have of those precious weeks, I can recall the pure contentment that I felt whilst I drank in every inch of my perfect little girl. But there’s something else now when I look back as I find myself searching for signs of your appearance; how long had you been lurking, waiting to make your presence felt? Days? Weeks? Not months, as you made your entrance when Freya was just 7 weeks old, and took my perfect from me before I had even had the chance to accept that this was my life. I hate you for that.

I hate you for the damage that you caused, to my little girls heart and my own. Your physical attack on my daughters body caused damage that has since repaired to spite you, though we will never know what lies around the corner as you sneer at us from afar. The effects of the emotional and psychological onslaught that you raged upon me went far deeper than any physical impact you created. Far deeper and perhaps more permanent still. Anxiety is one of the gifts you bestowed upon me, and sadly you declined to accept returns.

I hate that you took me away from my family, particularly my son. I hate that your presence resulted in my absence and caused a fissure in relationships that, theee years on, we are still fighting to mend. I hate that you created mistrust in me, from those who trusted me the most, because my attempts to protect them from what you were doing to our little Freya were seen as dishonest and insincere. Because of you my children learned that sometimes parents lie. And you can sugar coat it as a white lie if you want to, but to a boy of 5 who is just adjusting to not being the most important one any more, a lie is a lie. You have no idea how much damage that has done to a vulnerable little boy who trusted his mother the most in the whole wide world. For that, I will always hate you.

I hate that you made me afraid. Afraid of life, afraid of death. Your ego will tell you that you taught me not to take life for granted, and maybe there is some merit in that. But you took away my innocent enjoyment of a life and replaced it with a life where I am constantly looking over my shoulder, wondering when time may run out for me or any member of my family. You can tell yourself that the fear of losing them has made me love them more, and that might be a little true, but mostly that fear has made me edgy and anxious and sad, and those feelings threaten any chance I had at savouring every uncertain second that we have on this Earth. I hate that you gave me that.

I hate that you show up, mess up and leave. The lucky ones manage to avoid any long term damage you try to cause, but there are still so many who are permanently impacted by your arrival. Less lucky ones might face an uncertain future with broken hearts, but at least they get a life.

But worse than that, you are too often allowed to take a life too young to be taken, and for that I hate you. I hate that we don’t know who you are, what you are, where you come from, or how to get rid of you. You are not welcome, and yet you show up anyway. The lives that you rudely interrupt are forever changed by you, but you don’t change. You just move onto your next victim, sending another family into turmoil and uncertainty and fear. I hate that we haven’t stopped you yet.

Forgotten Fears

Posted on by Bluemama

It seems like such a long time ago that I ever really felt afraid for you, but today I find myself reunited with feelings I hoped would never feature in my life again.  Looking at you, no-one would understand what there could be to worry about – you are a ‘picture of health’ as they say.  Those rosy cheeks and that sparkle in your blue, blue eyes betray what lies beneath.

For the last year, we have taken the news from every cardiology follow-up as fantastic steps towards you being a miracle in the making.  Each appointment showed further reduction in the aneurysms in your heart, and we celebrated every little move towards what we thought was your recovery from this awful disease.  And then, little by little, the reality dawned that the likelihood that your heart was magically repairing itself from the damage that had been done was slim, if near impossible.  My mind is filled with a constant echo of statements and warnings; babies diagnosed under 6-months are at increased risk of coronary stenosis, 75% of children with giant aneurysms will require intervention later in life, an angiogram will show us if there is any sign of stenosis, look out for signs of angina… the list goes on.

Something shifted this weekend following the receipt of the letter from your last Cardiology appointment.  At that appointment the Cardiologist measured your coronaries with an echocardiogram.  I noticed the figures 0.18 at the bottom of the screen – that is 1.8mm.  The cardiologist said “About the same [as last time]” and I remember thinking, “No, that’s smaller still…”  That said, the outcome was still the same, and your Cardiologist continued to urge us to proceed with the advised angiogram.  In the time since that appointment I had some e-mail exchange with a reputable Cardiologist in the Kawasaki world which gave me some comfort, and I have also spoken with the Cardiac Nurses who have agreed to make an appointment for me to meet with the consultant who will perform the angiogram to ensure I am completely comfortable with what you will go through when the time comes.  And then at the end of last week the letter came.  Encouragingly, your Doctor has discussed your case with a Paediatric Cardiologist in London, whose name I immediately recognised as one of the speakers at the KD Symposium in London earlier this year.  I was pleased that your doctor had taken this step, and it restored my faith a little.   Well a lot, really.  The letter also gave a better explanation than I received verbally at your appointment, and I now understand that an angiogram is really the only solution because of your size.  Although I still feel some degree of trepidation about the procedure, I have reconciled myself to the idea that this really is necessary for us to understand how this disease will continue to affect you in your future.

It was niggling me that the measurement was described as ‘the same’ at your appointment, but my memory was telling me something different. So I fished out your medical file (yes, I have a very organised file that is getting pretty thick now!) to have a look through the previous letters.  I was right – the previous appointment recorded a measurement for your left coronary artery (LCA) as 2.7mm.  So rather than being ‘the same’, the artery has actually remodelled by almost another millimetre, which is a reduction of a third of the size that it was just three months prior!  I don’t know if you can work out where my thoughts are going with this, but let me tell you, it has got me really concerned.

My initial concern is obviously the speed of remodelling.  OK, so we don’t know what is causing that – could it be layers of blood clot (thrombus) that is causing a narrowing of the arteries, or scar tissue forming on the artery wall as the aneurysms repair?  Since your KD journey began, I have plotted the measurements on a graph since the beginning (this will come as no surprise to those that know me personally!).  It’s been a bit hit and miss, because not all the measurements are documented in the letters (sometimes we get all three – left, right, and left anterior descending) sometimes only some, sometimes none.  And I haven’t always managed to jot the numbers down from the bottom of the screen during the appointments.  But one measurement that I have been able to capture consistently is that of your LCA, which was the most severely affected by Kawasaki Disease.

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What the graph shows me is that your LCA is now 65% more narrow than it was at it’s worst, and the pattern of remodelling has been as follows:-June (diagnosis) to July 2015             15% reduction

July to August 2015                               32% reduction

August to September 2015                 10% increase (anomaly?)

September to November 2015           6% reduction

November ’15 to May 2016                 13% reduction

May to September 2016                       33% reduction

Now I’m not statistician, but these numbers have got me worrying about the rate of remodelling.  How long it could be before that 1.8mm results in 100% stenosis?  And if your arteries become completely occluded, preventing the blood from flowing through your heart, there is no other outcome but a heart attack.  Is that even possible?!  I can’t even…

So now I’m thinking all sorts – why didn’t the Cardiologist mention this difference at the last appointment? Is she not as worried as me?  She said the measurements were the same, but they clearly are not.  And if you are now on a waiting list for months before the investigation can be carried out, I am worried that you could suffer a heart attack before we get the chance to understand what is going on. I mean, can that happen? What is the likelihood?  It’s possible, but is it probable? 

I’ve left a message with the Cardiac Nurses – I really need to speak to them to air my concerns and get some answers. I feel, whether logical or not, that we are just waiting for your heart to fail.  And what just dawned on me last night as I was over-thinking this whole situation is that we have never considered when the worst could happen.  We were told to look out for signs of angina – the only sign we were made aware of was if you were to suddenly stop playing for example.  But last night as I marvelled at this amazing little girl who sleeps through the night, always has, the thought entered my head; what if it happens when you are asleep…?  I mean, if I were a statistician I would be able to calculate the probability of a heart attack happening at a certain point.  You sleep between 14 and 17 hours per day!  That means that you are asleep for up to 70% of any given day…

So now I have a new fear, and I cannot shake it. It kept me awake last night and brought tears silently streaming as I lay there struggling to get to sleep.  It caused me to jump out of bed on more than one occasion to check the monitor was switched on, and it meant that I woke this morning with that old feeling of dread until I heard the first murmur from your room.  When you were diagnosed with KD and we were told that your heart was significantly damaged by the disease, I feared every day that I would wake to find you taken from us.  I was so afraid of finding you gone that I was frozen to the bed until I heard even just the slightest movement from the baby monitor.  Every bit of me wanted to get out of bed and check you were breathing, but I just couldn’t physically move because the fear kept me pinned down.  How would I know? I mean are there any signs? You often cry out in your sleep, maybe just once, and then you drift back off to sleep.  Is that what it would be like? If you were sleeping, and me and Daddy were fast asleep, would there be anything to hear?

I have read that the signs of heart failure in a child could include the following:-

  • excessive sweating
  • extreme tiredness and fatigue
  • poor feeding
  • rapid heartbeat
  • rapid breathing
  • shortness of breath
  • chest pain
  • a blue tinge to the skin

Would you let us know about any of those if you were sleeping? Would we hear? Would we know you were in trouble?  You think about emergency procedures in the event of a heart attack – call 999, get an ambulance, perform CPR… But if it happened in your sleep and we didn’t know, you could be left for hours before we realised, and by then it would be too late.

I wish I didn’t have such a vivid imagination. My mind plays out these scenes like a movie in my head, and I can’t shake it.  I have ‘seen’ it – the moment I find you gone.  I have ‘felt’ how I didn’t want to live anymore in a world without you in it.  I am angry at the world, angry at this insidious disease that crept up on you and broke your heart.  And I am afraid beyond words of what might be around the corner.  All parents worry about the fate of their children.  Hopefully most see the death of their child as an unlikely threat, and it features just for a nanosecond of each day.  To know that there is a possibility (regardless of the probability) of losing your child is a feeling I cannot describe adequately to anyone who hasn’t experienced something similar.  It’s like standing on the edge of a cliff, a dark and indeterminate cavern beneath, knowing that just one breath of wind could change the course of your life forever.  Sometimes I can barely breathe for fear that the slightest movement could unbalance me.

You have many people rooting for you – hoping, wishing, praying.  Some believe you are going to change the KD history books.  Others say you are a fighter, an inspiration and a miracle.  I’m too superstitious to believe in any of that for fear of jinxing your progress.  There are some that have so much faith in God that they ‘know’ you will be ok.  I worry that if there is a God his plan could be for the world to learn from a tragedy – your tragedy.  I just don’t know anymore, Peanut.  All I know is that right now I find myself out of control yet again at the hands of this disease.  I am still in utter disbelief when I consider the events of the last year, and often think about bundling you in the car and running far, far away from all this.  Pretend it never happened.  But there isn’t just you to think about, and I have responsibilities and relationships to consider.  And sometimes, no matter how hard it is, I just have to accept that I am indeed a grown up.

I don’t want to be a grown up anymore 😦 

 

Everything changes

Posted on by Bluemama

I have just returned home from handing back all my equipment to my employer as I embark on this new chapter in my life.  Funny how strange it felt handing back a laptop and a mobile phone that have only been locked away in the garage for the last year anyway.  I guess it felt somewhat symbolic of the final step towards (temporary) detachment from my career.  And just being there in the restaurant, drinking coffee like I used to every morning when I was there, felt quite surreal.  More so, because I had you by my side, and a rice cake in my hand instead of a notepad.  I was very aware, having just finished a year of maternity leave, that under normal circumstances I would have been there alone.  I would have been the one rushing off to that conference call, or heading off to a meeting.  I have no regrets, however. Non, je ne regrette rien.   I consider myself incredibly lucky to have the chance to take some additional time to concentrate on your immediate needs, and to regain some of the time we lost last year.  With your brother and sister I would have missed so much of what I get to see every day with you sweetheart.  Watching you develop and grow is a source of constant amazement for me, and I don’t think I will ever tire of spending time with you.

The effects of the last year were not just felt by me.  I’m sure they were felt by you, but I have no idea how because you can’t tell me yet.  I hope that you don’t remember any of it. That all you remember is how we used to go on the train for days out, or for coffee and cake and to the park.  I won’t ever forget that the backdrop for all of those things was an imposing hospital looming behind us.  But hopefully you will just remember feeding the ducks in that nice park, and you won’t have noticed the tears in my eyes that came because I was saddened by the memories that the park evoked.  One day we will be able to go to Weston Park and sit on a bench and let the warm sunlight wash over us as though it were sent right from Heaven.  We will lie on a blanket and make pictures in the clouds, feed the birds and the ducks and watch the fish in their shady hiding place under the little bridge.  But we will always make our place on the other side of that park so as to spare the mums who, like me last year, watched other families enjoying the summer through the windows of a hospital cubicle.  The nurses thought they were helping me by moving me to a room with a view. The brick wall which was our previous view had been quite oppressive, but no more so than watching mums play with their babies in the shade of the trees.

Back then I thought I did a pretty good job of protecting your brother and sister.  We told them that you had a cold but needed the nurses to help get you better because you were too young for Calpol.  It was a white lie. Quite a big one, but white nevertheless.  And you did test positive for Rhinovirus in that first week, so it seemed like a plausible excuse.  We also kept your siblings from the hospital.  They visited you on your last day at the local hospital (after a week), and then maybe once or twice when we moved to the Children’s Hospital.  We didn’t tell them when you were moved to Leeds, so they didn’t see us when I was in my darkest place.  What I didn’t know was that our attempts to protect them probably made their anxiety worse.  I underestimated Eliza.  She has told me since  that she was very worried that I would be coming home without her baby sister.  She wasn’t stupid; she knew something must be pretty wrong and that a common cold wouldn’t need her mum and sister to be away from them for as long as we were.  So she actually worried more, because she knew it had to be bad for us to want to hide it from her.  And Fin? Well he went off the rails a bit. His behaviour at school hit an all time low, and the effects of last year have only just begun to wear off with a huge amount of support from the school.  He was the baby of the family before you came along, you see.  He was excited about getting a baby sister (although I do think he might have secretly been hoping for a brother to play Minecraft with!), but suddenly not being the baby anymore is quite a lot for any child to get used to.  And then just 7 weeks after we brought you home, just as he was probably getting used to you being around, he lost you and me for a while.  6 weeks.  That’s a long time in a 5-year old’s life.  Because we played down your illness so much, he couldn’t understand why his Mum would leave him.  He thought that I had chosen you over him, and his little head wasn’t quite ready to work that one out.  His self-esteem took a huge knock, and he became very insecure for a while.  No need to feel any guilt about that though, not you or I.  I made the decision to protect them for all the right reasons and I wasn’t ready to tell them that they might lose their little sister.  They didn’t need that worry.  And by the time you read this, you will have seen that none of this had a lasting effect on them; they probably won’t even remember it when you’re old enough to be reading this.

I am not the same person that I was before I had you.  I might even go as far as saying that you are lucky that this happened to you.  You have had the very best of me this last year, and I dare say  that you will continue to get the best of me for as long as we are both here.  I have not taken a single moment with you for granted, and because of that I think I am more patient with you than I might have been with the others. I am most definitely more intuitive about your needs. Perhaps some of  that is due to age (I was 40 when I had you), or experience with having done it twice before.  But I think most of it is the incredible bond that we have developed by spending so much time together since you came into the world.  Because I am scared of you getting very poorly again (I’ll tell you one day about chicken pox and the medication that you take), I have kept you away from large groups of children in the main.  I don’t take you to baby and toddler groups or play areas where the risk of infection is a constant worry for me.  I don’t wrap you up in cotton wool either – rather than avoid all situations, I tend to weigh up the situation based on my anxieties and I guess you could call it damage limitation, rather than complete avoidance.  That will become easier towards the end of this year (2016) when you have received the MMR, Chicken Pox and Flu vaccines.  Until then, we will stay together in our little bubble where we see just the right amount of people to allow you to build relationships with other children, but not enough for me to worry about you becoming sick.  I know I cannot protect you from everything, but I have to protect you from what I see as a risk, no matter how small that risk might be.  I cannot bear the thought of seeing you that sick again, Peanut.

My social circle is a little smaller than it used to be too.  There are lots of reasons for that. I’ve become very immersed in a Kawabubble over the last year and I don’t have an awful lot of time and energy for much else.  Most of my attention is on you, and getting you through the next challenges that the effects of KD will throw at us.  A lot of my attention has turned to our little family; this experience has made my family much more important to me than I think I allowed it to be before.  It’s also very difficult for me to spend time with people who cannot relate to our situation.  I don’t want constant sympathy, but I want compassion and understanding.  People that think that everything is ok now because I wear a big smile, and you look so amazing, don’t know me very well.  They don’t know how much I still struggle to come to terms with what has happened to you, and what the impact of the disease will have on your future.  70% of children in your situation will have to have invasive treatment later in life – a heart bypass, or a stent perhaps.  100% of children who have suffered coronary aneurysms as a result of KD will suffer myocarditis (inflammation of the heart muscle) which causes degeneration or death of heart muscle cells.  I don’t know how to compute the possibility that my child may show symptoms of myocardial infarction (a heart attack).  Just doesn’t seem real.  Later this year, whether it be through cardiac catheter angiogram or CT angiogram, we should get a closer look at the cause of the remodelling of your coronaries to better understand what the future may hold.  Right now I have to take the cues from your outward appearance and development, and you look mighty fine to me.  It’s very confusing though.  I’m still not sure if there is any chance that you could have complications today, tomorrow, next week.  I guess we have to take each day as it comes.

I don’t want people to think that I am a victim in all of this.  That I don’t want to let go of it.  In fairness, I can’t let go.  Partly because you are still affected by the disease and will be for many years to come. Partly because I feel I have gained a purpose; I can help make things better for other sufferers of the disease, whether it be through raising awareness to help speed up diagnosis, or by providing useful information to other parents going through this.  Kawasaki Disease is now a very big part of my life, of our lives, and it isn’t likely to go away.  Perhaps over time it will become a smaller part of life for all of us, but I don’t think I will ever stop talking about it to anyone who will listen (and a few who don’t!).  It’s too important for that.  I am in contact with parents and grandparents who have seen this illness first hand, some who have suffered the worst consequence of all.  For them, I will always do what I can to help change the future of Kawasaki Disease.

Having a child diagnosed with a rare, or little known, disease is life-changing for parent and child.  And when there is no known cause you never stop asking yourself ‘Why?’.  Why did this happen to you? I hope we find out one day.  I believe the specialists are getting closer – it’s just that research costs money and KD research is severely underfunded.  They believe they have identified the combination of genes that make a child with KD more susceptible to the disease.  And they are pretty certain that they are looking for an infectious/toxic agent that completes the perfect KD storm.  I desire two things; that we can gain a greater understanding of your condition so we might have a better handle on what might be around the corner, and that the mystery of Kawasaki Disease is unravelled in our lifetime so we might gain some closure.  Solving that mystery will also result in a test for the disease so that children might be diagnosed more quickly, and better treatments that further improve the possible outcomes for children with the disease.

My whole perspective on life has changed.  Things I was afraid of before no longer occupy any space in my mind.  I no longer sweat the small stuff.  I have a lot more compassion for others – through our journey I have come into contact with so many parents who have suffered challenges with their children, KD or otherwise.  Before this, I was ignorant to all that – it was happening to someone else and that didn’t matter to me.  Now it does.  The only fear I have now is of losing you, or losing any of the people that I love dearly.  I will not allow people to hurt me anymore, because nothing can come close to the pain I have felt over the last year with you.  None of that matters.  Yes, everything has changed. Our lives are different than they would have been if KD hadn’t crept in.  But it’s not all bad. It’s different, but not bad.

Sometimes I am scared, often I am sad.  I worry a lot about the future for our little family.  But above all that, you will grow up knowing that you are loved and cherished more than you could ever fathom.  You are a special little girl who will achieve great things one day, and I will be there by your side with every step you take towards greatness.

I love you, Peanut. 

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The World keeps Turning

Posted on by Bluemama

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

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

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

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

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

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Stealing Joy

Posted on by Bluemama

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

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

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

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

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

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

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

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

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

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

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

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

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The Gift that Keeps on Giving…

Posted on by Bluemama

“Mum, remember when you thought you might not get to see me grow up? Bet you feel silly now?!”

They say that you shouldn’t wish for your children to grow up, that you should will them to slow down because in the blink of an eye your once tiny baby is all big and independent and doing things you never thought possible.  Well, in a way Peanut that is true.  But as bad as it may sound, there’s a huge part of me wanting you to hurry up! Hurry up and talk, hurry up and walk, hurry up and grow big and strong so that I can be sure to have had the chance to see it all in case it is taken away from me.  I’m scared.  Scared that I won’t get the chance to know you like I should. Scared that Kawasaki Disease has not finished with you just yet.

Today we took you to the hospital for your cardiology follow-up appointment.  You were last seen three months ago, where the cardiologist remarked that the speed of which your coronary arteries have been remodelling is concerning, and they would like to carry out an angiogram to take a closer look.  I knew she was referring to possible stenosis; that the reduction in the internal diameter of your coronaries might not be healthy, and is more likely to be the result of a build up of scar tissue or layered blood clots that have effected  the change.  But I have read that stenosis can take decades to cause any ill effects, and as such I felt it would be prudent to give you more time.  More time to grow, so that less invasive procedures might tell them what they want to know.  Apparently an MRI or CT scan isn’t as effective in giving a true picture in such a young child, and an angiogram is the only option that will show them what is really going on in that little heart of yours.  I asked the opinion of 3 experts, all of whom concurred with my view that there would be no harm in waiting, perhaps even up to a year, and carrying out a less invasive procedure.  I put that question to your cardiologist, but she seemed pretty keen on pushing forward and continued to voice a preference for carrying out an angiogram a year post-diagnosis; June.

I decided to wait until your next appointment to understand more fully why the consultant was so eager to press on.  That appointment was today.

We arrived at the hospital just in time for your appointment, and were sent straight down the corridor for an ECG.  It took the cardiographer 20 minutes to get a reading from your heart because you were wriggling so much! We had to bribe you with ‘sweets’ (little fruit things that we call sweets because they’re as close as we will let you get to confectionary at your young age!) to get you to sit still for long enough! You’re not as easy a patient as you were last year, this time pulling off the electrodes and yanking on the wires, but he got there in the end!  Nothing was said about the result, and I am guessing that means that, as usual, the ECG showed normal heart function.  Next it was time to weigh and measure you (you weigh 8.46kg and are 74cm in height), and then you were called into the examination room.

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It wasn’t your cardiologist that called us in; it was a registrar.  She introduced herself and asked if we had any concerns since the last appointment.  We had none.  She then asked us to take you over to the bed so she could perform an echocardiogram, and I asked if we were going to see your doctor today.  She said that we would, and that she was just with another patient.  I guess they were helping each other out so they might all finish the day at a reasonable time.

Surprisingly, you laid quite still for the echo.  Okay, so you had to be given a probe of your own because you do like to take matters into your own hands, but she got there (with the help of a bottle of milk!).  She didn’t say much, but as usual I clocked the numbers appearing on the bottom of the screen and was able to catch that your LCA (left coronary artery – the one that has caused the biggest worry on this journey so far) measured 2.8mm.  Was that bigger than the last time? I seem to remember it being closer to 2mm, but what’s a fraction of a mm between friends, eh?  Your consultant then entered the room, and continued the appointment with the registrar present.

She looked at the screen, and remarked that your RCA (right coronary artery) looked almost normal.  She seemed happy with function and blood flow.  It seemed that she was about to suggest a routine follow-up appointment and gave the impression that it would be a longer period next time, but the registrar mentioned that an angiogram was mentioned at the last appointment. Ah yes, remarked the consultant. I reminded her that she was considering the procedure because she was concerned about the extensive remodelling that your arteries have undergone in such a short space of time.  Ah yes, she remarked, and commented that at worst, the diameter had measured 8mm.  I corrected her.  Unless I missed something along the way, the largest measurement was 5.2mm.  Whilst small in comparison to some children affected by this disease, they were more than 5 times normal size and in a baby as young as you were was considered significant and cause for serious concern.

I told the consultant that I had a few questions, and pulled out my notebook (I know! I do like to make notes!)  The first question I asked was why she felt it so important to carry out a risky, invasive procedure now? What benefit could it have? What was her thought process, and what were her concerns?  I had thought that she might concede with a “perhaps we ought to wait” kind of statement.  But instead she told me that she thinks it is highly likely that the remodelling has come about as a result of stenosis – anything other than that would be nothing short of a miracle.  I asked if there wasn’t a chance that the remodelling has come about as a result of the aggressive treatment you received to stop the disease in it’s tracks (you received steroids and a dose of Infliximab when two doses of IVIG proved ineffective).  She agreed that was possible, but didn’t seem convinced.  An MRI/CT would be effective in providing a better picture of aneurysms, but in a child as young as you they would not be as effective in showing stenosis.  I asked what would be gained by doing it now? Stenosis can take decades to develop before the arteries might close enough to prevent blood flow.  And if the angiogram did show evidence of stenosis, how would that change the treatment plan? And then she used words that I had not considered would be used in your lifetime. Stent.  Bypass surgery.

I guess I knew what her concerns were before I asked them.  I mean, she isn’t likely to put you through an unnecessary procedure, is she! I told her that I would prefer to wait, but that if she felt that waiting would put you at risk I would trust her judgement.  She said that she would really like to get a look, and it dawned on me that you are quite the case of interest.  One of the youngest cases to be handled, aggressively treated, showing almost too-good-to-be-true recovery.  Yes, of course they would like to get a look.  I said I appreciated the medical interest in understanding what has been happening with your heart, but that you are not a specimen, you are my baby.  She reluctantly agreed to see you again in three months, and noted that whilst there was a great deal to be learned from you, that she would not consider the procedure for medical knowledge alone.   She agreed to discuss your case with at the next MDT meeting (multi-disciplinary team) with a view to negotiating with me further then.  She has already discussed your case with the surgeon, and they too believe it would be prudent to do an angiogram sooner rather than later.  That said, she still agreed to give us another 3 months (which will end up being more if the waiting list is as long as I expect), on the strict proviso that if we see any evidence of angina we are to contact her.

Let me take a moment to tell you about the symptoms of angina;

  • Chest pain or discomfort (not sure how you will tell me about that!)
  • Pain in your arms, neck, shoulder or back accompanying chest pain (ditto!)
  • Nausea (won’t generally know that one until you actually throw up!)
  • Fatigue (hmm, should I be concerned that you sleep through the night?)
  • Shortness of breath (you don’t get above a fast crawl yet, and I’ve not seen you panting!)
  • Sweating (nope)
  • Dizziness (again, how would I know?)

So apparently the only way I might be able to tell if you are suffering with angina would be if you are playing one minute, and then go quiet, and maybe glaze over for a moment.  This could be interesting :/

It would seem we are not yet out of the woods, my darling.  Just when I thought that there could be a future where KD becomes nothing but a distant memory, here it is threatening to place a dark cloud over the years to come.  The only thing I can hold onto is hope, but that is so hard when I feel like I am fighting a losing battle with this disease.  I have no control over it, none.  It came, it messed you up real bad, and it just won’t leave us alone.  I know there is a chance that they could do the angiogram and discover that you are indeed the miracle I had started to believe in.  But I also fear the worst.  And I know that there are far more complicated procedures happening to very sick babies, with huge success, every single minute of every single day.  But they are not happening to my baby.  And I so want to bury my head in the sand like an ostrich and pretend that this isn’t our life, that this isn’t your life.  Today for the very first time I saw ahead of me just how complicated your life might be, and it has made me incredibly sad.

And because with this disease the hits just seem to keep on coming, I returned home to a voicemail from your GP.  We were given the green light to crack on with catching you up on the routine immunisations, and also later given the go ahead to give you the MMR vaccine.  It was unclear, however, what timing/order the Immunologist felt these should be given in.  You’ve had the 8 and 12 week immunisations now, and I was hoping that we might be able to intersperse them with the MMR, Chicken Pox and Flu vaccines rather than wait any longer than necessary.  This family needs a holiday far, far away from here.

Sadly, the advice was more disappointing than I had anticipated.  The instruction has been to wait until after the final routine vaccinations have been given (around June).  Because you are a unique case, they are not comfortable in progressing to the remaining vaccines until 3 months after that.  So at best, you will get the MMR in September.  No mention has been made of the Chicken Pox or Flu vaccines, but I can only guess they will want to wait longer for those too.  I just wanted us to do some normal stuff, Freya.  Mix with other kids, in places where normal kids go.  Jump on a plane to somewhere warm where we can forget all about this for a time.  I am sick of being restricted by my fear, but I cannot knowingly expose you to illnesses that have the ability to take more from you than KD already has.  I’m talking about Reye’s.  And yes, I know it’s rare, and it hasn’t yet been linked to low doses of aspirin, but it’s a risk I cannot bring myself to take.  What were the odds of you getting KD at 7 weeks old?? Exactly.

I’m sorry, my tone is getting quite unpleasant isn’t it? And I am sorry for burdening you with this worry.  Almost a year ago I asked a God I don’t believe in to prove the doctors wrong.  If he’s listening, this is his chance to show me what he can do.  I can only hope that if you are reading this, it means that you have already proven yourself to be the miracle that we all hope you will be.  I don’t want to live in a world without you in it.

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Memories of another you

Posted on by Bluemama

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

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

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

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

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

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

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

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

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

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

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

 

I have this noisy baby…

Posted on by Bluemama

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…?

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A Recipe for Disaster

Posted on by Bluemama

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

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

Sometimes, mental illness looks like this…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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All I need

Posted on by Bluemama

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

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

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

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

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

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

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

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

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

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

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

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

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

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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