My dearest Freya,
It’s been a long time since I’ve written to you. Life has moved along steadily since those dark days of 2015, and there’s not so much time for blogging these days. And in all honesty, the fact that there’s not so much to blog about can only be a good thing. No news is good news, right?
So why am I writing to you today? I’ll tell you. I’m writing today because if I don’t say these things out loud they are going to continue to consume me as they have for the last 2 years. Since the A word was discussed. Angiogram. The word itself has become so huge to me now that I’ve lost all perspective for what is considered a routine procedure. Routine for the cardiologists who perform them day in and day out, month after month, year after year. But not routine for you! This was not part of our plan for you.
But, we’re here. And despite being cancelled twice already, it is looking pretty likely that at 6:30 tomorrow morning we will be waking you to make the drive to the hospital and allow the wheels to roll.
I’m sure many would think me over-dramatic. Many have been through much worse. But this is an invasive procedure, and it involves your precious heart, so I am more than a little terrified. And whilst I promise you that I am doing my very best to be hopeful and think positively, I will never be able to shake the fear I have of this particular procedure. The elephant in the room at every appointment with your consultant for the last 2 years. The one we fought against, advocating for you to grow stronger before they put you through it. See, it’s pretty standard for an angiogram to take place one year post a KD diagnosis, but with you only being 7 weeks old when you were struck by Kawasaki Disease, at a year post diagnosis you were still just so little.
I feel like I need to offload some of my fears here so that I can start to move forward from them. I did wonder if committing them to the page would somehow allow the fears an unnecessary validity, and make things worse. What I’m hoping is that I can share just how I feel about this procedure so that when we come out the other side of this I can truly appreciate how unnecessary my fears were and learn that fear is not truth. Oh I hope I’ve got this one right.
Of course I’m afraid of the procedure itself. It is routine, yet it is still invasive and it is not without its risks. But I’m afraid of so much more than that.
I’m afraid of the hospital. It was there that your disease was finally silenced, but it was there that we were prepared for the very worst we could have ever imagined. “Are you aware of the risks, Mrs McBride?” And I replied that I was and started to reel off those risks – clot, stenosis, heart attack…. “Shall we go and have a chat?” Never good when your child’s Cardiologist invites you to talk away from the ward. A conversation I will never forget, where behind a closed door I would hear the words, ‘rupture’ and ‘nothing we could do’. Where I first heard that their greatest fear for you at that time was one that would see me leave that hospital alone.
I’m afraid of the general anaesthetic. I watched you go to sleep when you had to have a bone marrow aspiration before they reached the diagnosis. I couldn’t help thinking that this was how it would feel to watch you die. I’m sorry, I know it’s morbid, but I’m just trying to be honest with you about my feelings. Honest with myself. I didn’t think it was likely I would ever have to go through that with you again. But here we are, and tomorrow I will be there (if they let me) to watch you go to sleep before I hand you over to the care of the Doctors and wait the agonising wait for the call to bring us back to you. I dread the moment, but I know I have to be the last person you see before you close your eyes and I need you to know that I was there by your side for as long as I was permitted.
I’ll admit I have Googled the procedure many times and that means that I am fully aware of the risks, however small those risks may be. Of course I’m afraid of those. I’m afraid of all of those. Every single one.
But most of all I am afraid of my dreams. Because I have seen this played over like a video in my mind since it became a ‘thing’ for us. I have had many nightmares where the doctors bring me the worst news of the worst possible risk outcome. Irrational, maybe. But those dreams have been the kind that are so real you question whether you were really dreaming for a moment. You see, I’ve felt the grief. I know I haven’t lost you, but I’ve felt many times as though I had. So there it is, I’ve said it. My greatest fear is that my dreams, nightmares, become the reality. And that is why I am so reluctant to accept this procedure as a necessary evil. Because I am absolutely terrified of what those dreams showed me – not as visions of a madwoman, but as nightmares playing on an anxious mind.
I felt strongly this evening, on the eve of the appointment, that I let those fears fall onto this page. Fear, I acknowledge you. It is ok to be afraid. I am afraid because the one thing I fear the most in this life of mine is losing you, little Freya. The fear is what shows me how much you mean to me and how much you are worth fighting for. So let’s kick Kawasaki’s butt tomorrow, sweetheart! Let’s see if that message I wrote to a God I’m not sure I believe in, comes true. Prove them wrong!
Have courage always, Peanut xx
So today was Freya’s first cardiology follow up of 2017. In case you don’t remember where we are at from the last visit, I’ll quickly bring you up to speed. We had a cardiology follow up in September 2016 where I questioned the Cardiologist’s desire to carry our a cardiac catheter angiogram. At that appointment I was told that I needed to trust the doctor or she would have no choice but to refer Freya to another hospital. However, shortly after the appointment I received a letter which allayed some of my fears, and so I made an appointment with the Cardiac Intervention team to discuss the procedure. At that appointment I was made to feel more at ease about the procedure itself, however the doctor said he was not happy to perform it on Freya given she was still so young, and asymptomatic. I left it with the two of them to argue the case, and eventually it was decided that whilst there was a degree of anxiety about the speed of the remodelling of Freya’s arteries, it was in Freya’s interests to wait a while longer, and she was placed on the waiting list to undergo the procedure in the Autumn of this year (2017). That was good news for me, as it seemed like a good compromise, although I then felt quite nervous about what could happen in the interim, and gave my consent to wait as long as Freya was reviewed regularly in between.
I believe the idea was for Freya to be seen in 6-months (from the last appointment), however I was keen to evaluate Freya’s current situation before we go to Mexico, so her appointment was made slightly sooner than planned. And that brings us to today.
Now, at Freya’s last appointment they were unable to obtain an ECG reading as Freya was hysterical and kept pulling the electrodes off (“stickies” as she calls them). Even when we managed to get her to lay still, she was just too distressed to get a proper reading. Since then she has developed an acute fear of stickers – all kinds! She wouldn’t even allow us to go near her with a sticker, not even to stick one on her clothes. So we’ve been working really hard trying to beat that phobia, and we had a breakthrough last week after a visit to Cannon Hall Farm. I’ve spent the last week chatting to Freya about the hospital visit, talking about the ‘stickies’, where they’ll put them and that she has to be brave and not wriggle or cry. On the way to the hospital this afternoon she told me and her Dad that she liked hospitals, and chatted away about the stickies and how brave she was going to be (I say ‘chatted’ but it was more like a mantra – “I like hospital, stickies on me, my legs, my tummy, me not cry, me blave.”) I was hopeful that today’s appointment would be more productive.
When we arrived we were sent straight for an ECG. Sitting in the corridor, one of the nurses that had looked after Freya before came and had a chat with us. She made a fuss of Freya, and after a while asked if she would like her to do her ECG for her. Freya said she did, so the ‘nurse’ (not sure what her actual job title is) went and asked the other staff if she could do this one as Freya is very nervous and she knew how to handle her. She decided to place the electrodes on her arms and legs only, leaving her torso free. Despite her best efforts, Freya still screamed at them to stop. I managed to calm her down (by telling her that Paw Patrol would be on the ECG screen any minute!) for just long enough to get a reading, although I gather that it wasn’t a full reading with it only being on her limbs. Freya then refused to be weighed or measured so we had to leave that part too.
We went into the Cardiologists room almost straight away, and she asked how Freya had been. We updated her on the chicken pox vaccinations, which are now complete. The episodes of single fever spikes in the early hours of the mornings (can be associated with angina) had ceased, and Freya was no longer having periods of suddenly lying still on the ground, so it must have just been a phase she was going through. The doctor tried to do an echocardiogram but Freya resisted (for the first time so far on this journey), and the Cardiologist wasn’t able to keep her still for long enough to get a look at her coronary arteries, let alone measure them. She kept fighting to get away, shouting “Stop it, stop it, please help me!” which was so upsetting to watch. She did however get a look at the heart chamber and could see that the heart was functioning normally – this was also confirmed by the ECG results, and to be fair, heart function has never been a concern in Freya’s case. As long as Freya’s blood can keep flowing nicely through the arteries everyone is happy, and that’s what the daily dose of aspirin is there for.
I must admit I felt more than a little uneasy about not being able to get a close look at Freya’s arteries. I mean, it’s the arteries that are the issue and I really wanted to be sure that there had been no further narrowing from her last appointment. The doctor didn’t seem to be too concerned however so we sat down for Q&A before setting off home.
So, what did we learn? I am going to bullet point it to make some sense of it all:
- The Cardiologist referred to the latest paper on the long-term treatment guidelines for Kawasaki Disease, and said that what she had read had given her some reassurance that the speed of remodelling in Freya’s case is not as unusual as she first thought. I think she may have been referring to the latest JACC review which I actually sent her after our last appointment (I can forward it to anyone who would like it – you can contact me through the awareness page www.facebook.com/freyasstory). Her initial anxiety was that with Freya’s aneurysms remodelling so fast it might be a sign of stenosis occurring. However having read the paper, she established that actually it is common for remodelling to occur within the first 2 years, particularly in cases where children are treated more aggressively than the standard treatment, as in Freya’s case.
- Freya was treated with the standard IVIG and high-dose aspirin at the time of diagnosis, with the addition of intravenous steroids. Resistant to two doses of IVIG she was then given another drug called Infliximab. This is not widely given in the UK, although there is a strong case for it’s use, particularly in severe or high-risk cases. As a very young baby, Freya was in the high-risk category for heart damage, and also presented with a severe case of the disease. The hospital had to apply to NHS England for permission to administer Infliximab to Freya – I still have a copy of the letter granting that permission. Freya’s Cardiologist believes that the Infliximab was instrumental in Freya’s cardiac recovery from the disease and I have to say that I agree. I think Infliximab saved Freya’s life.
- I asked about our impending long-haul flight, and we were reassured that there should be no concern. We should make sure we don’t forget Freya’s aspirin, and should keep her hydrated on the flight, but that was the only caution. Oh, that and that we had to remember to send the doctor a postcard 😉
- I also asked about cholesterol testing, as there has been some information circulated about undergoing the test one year post-diagnosis. We were advised that it may be standard in cases fitting the ‘normal’ age bracket for KD, but that Freya is too young for a low-cholesterol diet and would not be treated with statins for high cholesterol as her brain is still developing. I guess that’s where we have to trust the individualisation of our children’s cases compared to the standard protocols.
- I have also read that aspirin is best taken at night to reduce the risk of cardiac events during the nighttime hours. Freya has always had hers in the morning, but with her soon going to be with a childminder, I wanted to switch it so I can give it to her before bed. This is not a problem, and the anti-platelet effects of the drug will remain long enough for the longer delay between doses when I make the switch.
- The last thing I asked was in relation to specific care plans/patient specific protocols required for the childminder, for example. The doctor said that as long as the childminder knew what to look out for – becoming pale, sweating and quiet – there were no other ‘special’ arrangements to be made. I expressed my concern that in the event of a potential cardiac issue, were an ambulance called it would take Freya to our local hospital which is not a PCI centre. The doctor is going to provide me with a letter outlining the care Freya should receive in such an event, and advised that in coronary cases, Freya would be better transported to a local hospital for immediate care than risk the journey to Leeds. Once stabilised, she could be transferred by the EMBRACE medical transport service to the cardiac unit if necessary.
We agreed that Freya will be seen again in 6-months, and that although they feel less anxious about the progress so far, they will still carry out the angiogram later this year. I agree that it is prudent to take a closer look to be sure we know the full picture. I also explained that whilst in the past I have questioned the steps they wanted to take, it was never from a place of distrust but only from making informed choices about what was best for Freya. Even though I was the one who wanted to delay the procedure, I have still had to live with the fear that I may have made the wrong choice, and something terrible could happen without warning. Overall it was a very positive visit today.
But (yep, there’s always a but with me isn’t there!), I can’t help but still feel a little uneasy that what was decided today was not based on what we could actually see (with the exception of the heart function being ok). For all I know, Freya’s arteries could have remodelled even more than the last appointment and now be heading dangerously towards narrowing. I guess that is a possibility, but we have made decisions today based on probability. The doctor thinks it is improbable that Freya is in any real or immediate danger. Hopefully the aggressive treatment Freya received in the acute stages of the disease have set her up for a bright future. There are still many unknowns, some of which we won’t get answers to until much later in Freya’s life. For now, perhaps it is time to have a little faith…
For some reason as we reached the exit level of the hospital, we turned the wrong way out of the lifts. It wasn’t a big problem as you can get out either way. This way, though, took us past the Brotherton Wing – the old part of the hospital which houses the parent accommodation where I had to stay, alone and far away from Freya when she was being taken care of in the cardiac high dependency unit. As I walked past the entrance to the old wing, I couldn’t help but feel a deep sense of sadness at the memory. And then I remember the chapel that I used to pass on that long, lonely walk to my room every night when I couldn’t keep my eyes open any longer. I don’t consider myself a religious person, but not wanting to leave anything to chance, I had entered the chapel the day after being told there was a chance we could lose our daughter. It as the day Freya was taken back to the Children’s Hospital, and as a parting gesture I had taken a slip of paper from the table inside the doorway of the chapel and wrote on it, “Dear God, prove them wrong.” I am beginning to think He might just have been listening.
I have written many blog posts over the last two years, sharing our journey with Kawasaki Disease, but it struck me this morning that I have never really been able to articulate how living with this disease day-to-day feels for a parent. It is a feeling I have become so accustomed to now, that it almost feels normal, and that is why I think I find it hard to describe. My goal today is to try, so that I might share with you a glimpse into how our world changed in June 2015.
In a nutshell, Kawasaki Disease is a form of vasculitis, causing inflammation in the medium to large blood vessels when it strikes. It is generally contained to children, mainly affecting those aged between 2 and 5 years old, though not exclusively (my daughter was 7 weeks old). It is characterised by a number of symptoms – persistent fever, red eyes, rash, swollen extremities, sore/cracked lips or strawberry-type tongue, and swollen lymph glands in the neck. With no known cause, there is no diagnostic test to differentiate Kawasaki Disease from other similar childhood diseases (Scarlet Fever looks very similar and is a common misdiagnosis), and therefore a diagnosis is reached based on presentation of the afore mentioned symptoms. Given that these symptoms don’t always show up at once, and sometimes not all of them are present, Kawasaki Disease can be a tricky illness to diagnose quickly. And the speed of diagnosis is important, as research has shown that treatment within 10 days of onset of symptoms can dramatically reduce the risk of heart damage in affected children. You see, 75% of children who get the disease will recover without long-term complications, whilst the remainder will sustain permanent damage to their heart if not treated (this reduces to around 5% with timely treatment). Sadly, this means that no matter how good the doctors are at diagnosing the disease, 5% of children who get Kawasaki Disease will suffer heart damage that will remain with them for life.
Whilst mortality rates for KD are considered low, at around 1% of cases, I’ve always felt that the statistic gives unreasonable hope to those of us with children whose hearts were damaged. I would be willing to bet that any deaths resulting from Kawasaki Disease are exclusively related to heart damage. So if there are 100 cases of Kawasaki Disease, the statistics say that 1 of those children will die. But when you consider that, with timely treatment, just 5 of those 100 children would suffer permanent heart damage, and you factor in the 1 child who will lose their fight, suddenly the numbers seem very different – especially if your child is one of the 5%. Suddenly that 1%, when factored into the heart population alone, becomes 20%. Now, whilst those numbers give the fear some perspective, I don’t want to cause unnecessary alarm for those of you living with a child with a broken Kawasaki heart – another bet I would place is that the majority, if not all, of the deaths resulting from Kawasaki Disease occur from misdiagnosis, or no diagnosis at all. Like the little girl who was diagnosed with rhinovirus and died 6 weeks later when her heart failed her.
So, I guess that sheds light on a couple of things:
- My daughter is one of the 5%. Unfortunately at just 7 weeks old when she became sick, she was in the high risk category for heart damage.
- It took 13 days to diagnose Freya, and therefore treat her (outside of the ‘magic’ window). Add that to the high risk factor, and she didn’t really stand a chance.
- Under the circumstances, it is pretty normal for me to feel afraid.
Thanks to Kawasaki Disease, my now 22-month old daughter Freya has a heart condition. She was born with a healthy heart, and after just 7 weeks in the world, and 13 days with a mystery illness, Kawasaki Disease broke it.
Looking back I don’t think it was the diagnosis that changed our lives. Hearing that the doctors had actually reached a diagnosis after two weeks of tests and various failing treatments, was a huge relief. Even when they told me that it was the damage to Freya’s heart that provided them with the conclusion, I didn’t realise they were talking about something that would stay with her forever. I presumed the damage to her heart was a symptom, one that would go away with the treatment. I was wrong about that. A week after celebrating Freya’s diagnosis I would be sitting in a room with a Cardiologist and a nurse as they told me that if my daughter’s coronary arteries (which had dilated to over 5 times the size of a normal baby) ruptured, she would die. They could not prevent it, and they would not be able to save her. That is what changed our lives. Until then I had never considered the possibility of losing a child. Facing that possibility head on, with no sugar coating, rocked the very foundations on which I had built my perfect, indestructible life. Of course, nothing is promised, there are no guarantees, life is fragile (and all those other clichés you see on Social Media memes), but I really didn’t think any of that applied to me. Stuff always happens to other people, doesn’t it…
20 months post-diagnosis, and I think I can dare to say that we are in a pretty good place (frantically touches wood). Freya’s coronary arteries showed significant improvement in the months following her diagnosis. Her heart function appears normal, her coronaries have remodelled to within ‘normal’ parameters and she shows no signs or symptoms of anything troubling going on in there. Good news, right? I guess that’s how we take it for now. The thing is though, that dealing with Freya’s heart is one thing, but add in the complications that come with ‘rare’ (KD affects just 8:100,000 children in the UK each year) and you find that ahead of you is a lot of uncertainty, confusion and contradiction.
There are a number of long-term complications from Kawasaki Disease. We often hear the words ‘normal’ from Freya’s cardiologist, we are also told by world leading specialists in this disease that Freya’s heart will never be ‘normal’. We are told to celebrate remodelling, but warned of possible stenosis (narrowing of the previously dilated arteries). We are told stenosis will take decades to occur, but read stories of emergency heart bypass surgery within months of diagnosis. We are told to live a normal life, not to worry, but research shows that 80% of children who suffer significant damage to their hearts as a result of KD will require surgical intervention later in life. Our doctors talk about what they see and know, but do not give confidence that they are familiar with all of the ways in which KD alters the child’s heart. I won’t even pretend to fully comprehend all the possible risks associated with Freya’s heart. I read about fibroblasts, myocarditis, and damage to the heart muscle, but I can’t begin to understand what those things mean in relation to Freya’s heart. No matter how much I have learned and think I know about this disease, I didn’t spend years in school learning about human hearts.
When I allow myself to think positively about the prognosis for Freya, I believe she has a good chance of living a normal life. But then I worry that I am becoming complacent. Freya’s doctors have shared that they have a degree of anxiety over Freya’s condition, and need to take a closer look. They’ve postponed that closer look until later in the year, and I worry about what changes might be occurring inside her heart in the interim. Only a few days to wait for some reassurance on that score (Freya’s next cardiology follow-up is on Monday 13th March).
When I consider that there is a possibility (though perhaps not a probability) of Freya suffering a heart attack, for example, I find myself suffocated by the thought. It’s like there is no end to the suffocation because you never know when something like that will strike. And I know that can be said for anyone, but the worry is more tangible when you are faced with a known condition with associated risks. When I wake in the morning, I lay paralysed in my bed until I hear something through the baby monitor that will defy my worst fears – a rustle of a sheet, a snort or a murmur from my sleeping girl. Not until I hear a sound do I let out the breath that I’ve been holding since I opened my eyes. I’m sure every mother could say the same, we all worry about our children don’t we.
Aside from my concerns for Freya’s future, the uncertainty that came with our daughter’s heart condition has caused me to question my own mortality too. I was never afraid of death before, I don’t think I gave it any thought. Now I am terrified. Until just now I thought it was just because I love my family so much that I am afraid of leaving them behind and missing out on what is yet to come. But actually I have come to realise that I am not afraid of dying, per se, I am afraid of dying too young. I have had to work so tirelessly, stay so strong, fight so hard to keep on the front foot with our daughter’s condition, that I fear for her future if I am taken from her too soon on her journey with this disease. I am afraid that she will enter into adulthood not realising how important it is that she keeps her heart healthy, or how she may need to have a cardiologist on hand in labour if she ever has children of her own. I worry that others will forget about all of this, because they can forget. There are no visible reminders of what this disease did to Freya, so it wouldn’t be hard to put KD firmly in the past. Me; I’ll never forget. The last 2 years are etched in my memory so deep that I can play the entire journey in my mind as if I were watching a video recording. And my overactive imagination has managed to convert my fears into a DVD that plays for me over and over – I have ‘seen’ moments where life ended, clearly enough to feel the loss as if it were real. Perhaps the intense fear that I have about losing my daughter is one of the lasting gifts that KD gave me? Perhaps it has helped me to treasure what we have more than I may have done without it?
I think I would have been able to handle the effects of Kawasaki Disease better had it been more commonly known. The rarity of the disease means that we don’t really know what the future holds. We can guess, we can use the limited amount of information that is available from adult KD studies, we can trust that Freya’s doctors understand what they are dealing with. We can have faith that it will all work out, that Freya is a little fighter, a tough cookie, a miracle.
People tell me I should stop worrying. They tell me that no amount of worrying will change the future. Some tell me that the future is out of my hands, that ‘someone’ already has a plan for us and we should put our faith in ‘Him’. Some say that any one of us could get run over by a bus tomorrow or struck by illness. They are all right of course. Except accepting that something could happen, and knowing that something might happen, are two completely different things. The fact is that the most important organ in my child’s body is faulty, and she only has one of them. I am finding it easier to deal with that with each day that passes. I find it easier to be optimistic about the future, even if only cautiously so. But I won’t ever be completely free of the overwhelming sadness that this disease brought to my doorstep, and I will never stop being afraid of what this disease might yet have in store for Freya .
Kawasaki Disease didn’t just break Freya’s heart. It broke mine too.
The other night, I had a dream that I had not retained until I saw a patch of ‘beach’ by the side of the Albert Dock in Liverpool where I was visiting with family. I had not given the dream a second thought until I saw the dark brown, muddy stretch below me, and then the memory of the dream hit me like a punch in the gut.
In the dream I was driving my car, a Volkswagen Tiguan 4×4, along a country lane, parallel to an expanse of water. On the other side of the water I remember seeing some people that I know. One was my best friend; she was waiting for me to arrive. The car was full, although I cannot remember who all of the passengers were. As I passed round a corner at the foot of a hill, I spotted my friend and also saw there was patch of beach by the side of the road. It was almost like a lay-by, and seemed like a pretty good place to stop and park up. I drove the car onto the patch of what had looked like sand, but as soon as the four wheels of my car touched down the ground gave way beneath us and the car began to sink rapidly.
I don’t remember exactly what happened over the next few minutes, but I do remember rushing into action to get the passengers out of the car before it was too late. One by one I pulled them from the car and got them to the side of the road. I freed the last person, and lay back on the roadside, wet and exhausted, but filled with relief that I had managed to get us all out. I watched the car disappear beneath the surface of the water, and then a wave of sickness came over me. Freya was still strapped into her car seat…
And that is all I can remember. That, and the total feeling of wretchedness as the realisation hit me that I had let my little girl slip away from me. Even as I recount the dream here on these pages, I cannot stop the tears. The knots in my stomach, and the heat of bile rising to my throat return to me, almost as real as the dream itself. What does it mean?
Having shown a particular interest in dreams over the years, I reckon I could hazard a pretty good guess at the meaning of this one. Or meanings; I think there are a few things going on, that I can interpret even just from this snippet that remains with me.
I am scared of losing Freya. That’s an obvious one if you’ve followed Freya’s Story. Not just the kind of fear we all have for our children and our futures though. A nail-biting, sleep-stealing, catastrophic-thinking kind of fear. It’s a kind of fear that I reserve just for Freya, because I know that she stared down Death and beat him, a defeat that has left me looking over my shoulder ever since. Have you ever seen the movie, Final Destination (and 2, and 3, and…..)? The idea that you can’t cheat Death is one that occupies my thoughts a lot. Booking our first holiday abroad with Freya should have filled me with excitement, but I have developed anxiety about the flight. 11 hours. Plenty of time for something to go terribly wrong. My husband says that the length of the flight is irrelevant, that most problems occur on take-off or landing, but whilst that might be true of an incident, that logic doesn’t hold up for all scenarios. Like a child becoming sick on the plane, for example. I just have to keep trying to focus on the holiday, and the wonderful time that we will have before I return to work after a 2-year career break. And that brings me to my next theory.
I am losing Freya. Not completely, I know. But when I return to work I will be losing one of my favourite pastimes – spending time with my lovely little girl. She’s the best company! She makes me smile and laugh, and she makes my heart feel full to bursting. I can almost hear the sanctimommies telling me that I should be grateful that I have my daughter, that I shouldn’t be so insensitive to others who are less fortunate. But you know what? I am grateful. I am and will be grateful for Freya, for all three of my children, every day of my life. I don’t take anything for granted anymore, nothing. That doesn’t mean I am some kind of perfect parent. Trust me, I still lose my shit from time to time. Making sure I appreciate what I have doesn’t mean that I have to live a flawless life, it means I have to live a normal one. That said, I cannot help but feel the impending sadness and the sense that I am losing something very precious. Indeed, I am losing the most precious thing of all; time.
Maybe that is why I had the dream now? Because time, in terms of my time with Freya, it is running out. Again, not completely, and yes I know that I will still have the time when I am not working. But we all know that when you work around children, you are most likely grabbing stolen moments between them sleeping and eating, and the quality time has to wait for the weekends. Although I am sure that returning to work will bring some benefits to family life (not least the money!), it’s still hard for me to imagine dropping Freya off anywhere and just walking away. We’ve not really done that at all in the last 2 years. Time to get some practice in I think, or the pair of us are going to be a nightmare! I know I’ll find a way to make it work, just like I did working full time around the other two children. In the meantime I will keep my fingers crossed that I am able to get a balance, and perhaps not be required to work a full 5 days every week. Until April though, I just need to make sure that I don’t let any of the time go to waste. I don’t want to be sat at work thinking about all the things I should have done. Time to start working down that list.
According to dreambible.com, dreams involving a car sinking in water “represents feelings of uncertainty as you attempt to take control of a situation. Decision making abilities that are being overpowered by negative emotions or problems that are too big to control.” Being actively involved in raising awareness of Kawasaki Disease is something that gives me a lot of hope, pride, and purpose. It has added meaning to Freya’s diagnosis, knowing that she didn’t go through what she did in vain. But it comes with a price, albeit a tab that I am more than willing to pick up. It comes with a great deal of sadness, frustration, fear and despondency. I expose myself to information and personal stories, sometimes good, often not so good. Whilst many of those stories spur me on to continue doing whatever I can to ensure that none of our children suffered at the hands of KD for nothing, they do affect me deeply. Some recent stories, as well as things that are on the horizon for Freya, have made me thoughtful about the future. I am apprehensive about many things, in fact I shared a blog post about those worries just recently. I worry a lot about time. About how much of it we have, about how much of it Freya has. Thankfully, I have this voice in my head that tells me to stop being so damned melancholy, and reminds me that I cannot live the rest of my life waiting for something bad to happen. That would be the most tragic waste of whatever time we have, for anyone, not just us.
I have often dreamed of water during periods of great emotional stress in my life. When I suffered with post-natal depression after the birth of my first child, over 12 years ago, I had many vivid dreams. I remembered them all, or else I woke in a panic and wrote them down in a book I kept by the side of my bed. Those dreams involved me drowning, or my daughter drowning, sometimes able to prevent a tragedy, but often not. At times when I was under considerable pressure at work, I would often dream about natural disasters involving water; huge Tsunami’s that swept away everything and everyone that was special to me. Generally speaking those dreams have occurred when I have felt overwhelmed, either by physical pressure or emotional stresses. Or at times when I have felt like I am unable to keep my head above water but nobody is there to help keep me afloat. I think that is the case here – I have so many things that I would like to achieve, but very little time left in which to achieve it. On top of that I have no idea what position I will be taking when I return to work, or what hours or days I will be working, so maybe as April draws nearer there is some anxious anticipation building.
Edreaminterpretation.org tells me that dreaming of an object sinking “may suggest that we are about to lose something we value”, and boy are they right on the money with that one.
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.
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 😦
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.
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.”
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.
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?”