All I need

Posted on February 16, 2016February 16, 2016 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.”

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

An Exercise in Mindfulness

Posted on February 3, 2016February 16, 2016 by Bluemama

mindfulness

ˈmʌɪn(d)f(ʊ)lnəs/

noun

the quality or state of being conscious or aware of something.
a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.

(Source:Google)

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

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

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

Intrusive Thoughts

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

So, let me give you a few examples.

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

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

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

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

Flashbacks

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

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

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

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

Letting Go

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

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

Treatment

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

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

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

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

Wish me luck.

To Immunise or not to Immunise…

Posted on January 28, 2016 by Bluemama

…That is the Kawaquestion!

If you’ve been following Freya’s Story through my blog or on Facebook (www.facebook.com.freyasstory), then you’ll know that one of the hurdles I have been trying to get over since her diagnosis and treatment for Kawasaki Disease is the question of when to immunise. When is the important question here – it is not a question of ‘if’ for me. Freya is my 3rd child; I had the older two vaccinated in line with the standard UK immunisation schedules without hesitation. They both had the (then controversial) MMR vaccination that was vilified for years, for those claims to be later contradicted by the very doctor who made them. I am not an antivaxer (yes, that is a word that is banded around various mum networks). I can’t say I’m a provaxer either to be fair; in all things medical I am a conformist. I trust the NHS and the doctors to have made the right decisions. Well I used to anyway.

Now before I go on to share all the information I have in relation to this subject, there are a couple of things you should know. First of all, the information I have received is contradictory to say the least. I’ve even had different information from the same doctor, just on a different day. And therein lies one of the biggest issues, and the key reason why we should be campaigning for standard protocols for treatment and care of Kawasaki patients. But that’s a whole other blog. Secondly, I take no responsibility for the decisions you may make in relation to this issue. I am not a medical professional; I am just a mum that wants to do the right thing for her child. I could not protect my baby from Kawasaki Disease; I have to be able to protect her from the other nasties, if I can. I will share the information I have and where I’ve found it. You also need to understand that Freya’s case is an individual one. We certainly haven’t found a doctor in the UK who has received a patient as young as Freya where Kawasaki’s is concerned. Generally children are older (commonly between 6 months and 5 years) and have therefore already begun their immunisation journey. Infants diagnosed with this disease have often already had at least the first tranche of jabs (leading some to believe the vaccine to have been the trigger that KD needed to start it’s evil – a theory that I don’t discount, in fact I find it a very interesting theory with some validity and would not be surprised if it is confirmed as one of the triggers in the not too distant future). Indeed, some of the vaccines state an increased risk of Kawasaki Disease in the patient information – information we often don’t read before we give consent for the needle to go in. Again, I do not want to be a scaremonger, and it is absolutely not my intention to send cats amongst pigeons. I’ve already said I am a provaxer. I am pro-choice in all things – but I believe in those choices being informed if you are someone like me who needs to know it all (and often thinks she does, lol!).

Freya was 7 weeks old when she became sick. She was hospitalised on the very first day that she showed a single symptom (fever) and spent a number of days on a paediatric HDU, several weeks in a Children’s Hospital, and a week on a Cardiac HDU. We hadn’t yet seen a health visitor, and the appointment for her first set of immunisations (8 weeks) has just come through. I guess due to her condition, and later the treatment she received, it wasn’t possible to start the process of vaccinating with Freya whilst she was in the hospital. She was 7 weeks old when she went in, and 13 weeks when she came out, so she was already behind schedule. She received a blood transfusion, intravenous immunoglobulin (a blood product) and intravenous and oral steroids. All of these have an impact on the immune system, rendering vaccination difficult for a certain period of time. And I can’t be more specific than that, because that is one of the biggest areas of contradiction I have come across when researching this subject, and the reason why now, at nearly 10 months old, Freya has not had a single vaccination.

Some might wonder why that is an issue. Plenty of parents (those antivaxers) make the decision not to immunise their children against some or even all of the diseases that the immunisation schedules seek to protect them from. There are children who are unable to receive the immunisations because of poor, weakened or non-existent immunity. We vaccinate the many to protect the few; herd immunity. I could trust that everyone else has been protected, so Freya will be ok among the herd. But, what if… And then there is chicken pox – we don’t routinely vaccinate for that here in the UK (they do in the States). If you Google “chicken pox and aspirin” you will find one big reason why aspirin and kids don’t mix; Reye’s Syndrome, a rare but potentially fatal illness linked to the fever associated with Chicken Pox and Influenza in children taking aspirin. Ok, so the link has been found where high doses of aspirin are taken, and not yet with the low anti-platelet doses that a KD kid is prescribed, but nonetheless it’s a nasty illness and one I don’t want to take any chances with. Freya has been through enough.

So what happens if you have a child who has not been immunised, and you are concerned about them coming into contact with what others would consider pretty innocuous illnesses? Let me tell you what happens with us. Freya has not been to a baby group; not baby massage, or baby music, or baby yoga. Hell, she hasn’t even been to a playgroup, and when my older two get invited to a kids party, Freya stays at home. Don’t get me wrong; we have not become social recluses. Instead I apply my common sense to the activities we will undertake. I know there might be someone in the coffee shop who has the flu. Why is that kid in the shopping centre not at school? Could they have chicken pox? I can’t hide us away from the whole world, but I can reduce the risk of her coming into contact with these nasty germs and bugs. I call it damage limitation. She has one or two little friends that she sees from time to time, but only when they are well. And don’t forget she has an older brother and sister who are exposed to all manner of things at school every day – we don’t make them wear a mask! It is a source of sadness for me though. Freya is such a happy, sociable child, and I worry about the effect this lack of exposure to her peers might have on her development. I want her to laugh and play with other children, to learn how to share, to grow bonds and discover new things. Instead there is a lot of singing and dancing going on in this house, which isn’t a bad thing (unless you’ve heard my singing!!). And with a bit of luck we can catch up with those immunisations soon and provide what we believe to be a little protective bubble around our child before it is too late for her to start over. The knock-on effect of KD will be huge – when I return to work, she will have to go to some form of childcare. She will be over a year old, and will never have been with anyone else other than her close family. That’s going to be a tough one for both of us to handle…

Let me go back to the beginning of Freya’s immunisation journey. While we were in the hospital with Freya we were advised that she shouldn’t have the immunisations, first because of her condition, and secondly because of the medication. A lady used to pop her head in our cubicle door every other day with an immunisation leaflet and I repeated often that we had been advised Freya would have to be left to catch up. I was promised an individualised immunisation schedule to leave the hospital with; it never materialised. I made a number of calls to the hospital to enquire about when I could start the process, and to the Health Visiting team to ask them to stop the weekly postal reminders telling me what I already knew; Freya had not received her first immunisations. Eventually I got the call from the hospital that advised I could give her any killed (inactive) vaccinations immediately (she was discharged one month after treatment for KD), but that I should wait 3 months post steroid treatment for any live ones.

I did a bit of research, because I was convinced there should also be a timescale for receiving vaccinations after a blood transfusion. All avenues confirmed that vaccinations should not be given until 6 months after a transfusion. Not to mention the varying timescales quoted for giving vaccinations after IVIG! But all my hospital ever referred to was the steroid treatment, I guess because that is an immuno-suppressant. But what of the other things? Had they forgotten what she had been given? I felt uneasy with the advice, so I sat on it for a while.

At a follow-up appointment with Rheumatology, I asked about whether Freya should be vaccinated against Chicken Pox (Varicella). The doctor said that in the UK we only vaccinate children who are at high risk of contracting the disease. I said that whilst Freya wasn’t at higher risk of contracting chicken pox, the potential consequences of her contracting the disease whilst taking aspirin could be catastrophic. He agreed to take the issue away, and on the 19th August 2015 I received a letter confirming that they believed it was “reasonable for Freya to receive vaccination against Chicken Pox, both in relation to the issue regarding ongoing treatment with aspirin and the small degree of risk of developing [RS] and also the small risks that Freya may require treatment with immunosuppression therapy in the future…”. Freya had been weaned off steroid therapy a lot more quickly than originally planned when the gastrointestinal bleeding started. From memory, it was the 8th July 2015 when she took her last oral prednisolone; that meant she could have the live vaccines, including CP, anytime after the 8th October 2015; “…it is important that Freya does not receive this until at least 3 months following…the last day Freya received the steroid treatment…”. I still felt uneasy, and decided to wait until our next follow-up appointment to discuss. It was at that appointment that I shared all the research that I had done, and got a referral to Immunology. I had to wait until yesterday for that appointment.

I wonder if now might be a good time to share what I have learned, from the internet (reliable sources, like the NHS and the American Heart Association) and from medical professionals from London to California…

From the list above, all vaccines are inactive with the exception of the following live vaccines – Rotavirus, MMR, Children’s Flu vaccine (note that for the children’s flu vaccine, the nasal spray is live, however there is an injectable inactive flu virus available).

These are just a few examples of the responses I received from medical professionals, and I can say that my internet research has thrown up much the same; anything from 3 months to 12 months. Helpful, right! My gut feeling was telling me I should err on the side of caution, and follow the advice of the US doctor who is considered the leading Kawasaki Specialist in the World – she calls herself a ‘Kawasakiologist’ and I believe she deserves the title. Our GP agreed that Freya qualified for the injectable (inactive) flu vaccine. My decision was made. Well, kind of. I had decided I wanted to get Freya caught up on the inactive vaccines immediately, then discuss the issue of the live ones with our Immunologist. Chances were, by the time we got any decisions we would be nearing that 12 month mark anyway, so it was a win-win. But our ever cautious GP decided that if we were speaking to an Immunologist anyway, there was no harm in waiting for that meeting before we started the immunisation process, and he felt happier to wait for clear direction from her. So, again we would have to wait.

So yesterday we had that appointment with the Immunologist. I was all geared up to go in and cover all my questions, but unfortunately an hour’s wait with a baby that has decided that a high pitched squeal is the best means of communication made the whole process a little trickier than I had anticipated! The doctor was the Infectious Diseases Consultant who treated Freya when she arrived at the Children’s Hospital on day 8 of her illness. That was nice, as I had the opportunity to thank her for her compassion, support and tireless determination to get to the root of Freya’s condition (especially as I was quite a difficult ‘customer’ who asked lots and lots of questions, and even accused them of breaking Freya’s heart at one point!) She seemed genuinely pleased to see Freya looking so well. She received the news that we had seen some improvement in her coronaries since the acute stage of the illness with a broad smile, and she was happy that Freya has not had anything more than one little cough and cold since her hospitalisation. I expected her to call me a muppet for being a cautious and over-protective mother, but instead she said she felt I was doing the right things, which was reassuring.

I came away from the appointment with a solution, individualised for Freya. I still don’t have a definitive answer about the timescales related to immunising after IVIG. But then why would I? The fact that I can quote at least 5 different timescales from medical papers and journals across the world tells me a lot of them are guessing. I’ve read that medics aren’t completely sure why IVIG even works in the case of KD – they are still trying to understand what causes the illness in the first place, so I guess it would be near impossible to understand why the treatment works. It just does (in most cases). The Immunologist told me that they deal with children who have compromised immunity as a result of a bone marrow transplant, for example. Those children are given immunisations in line with the hospital guidelines and they do not wait 12 months. That said, she agreed that they had learned more than they previously knew about KD from Freya. Presenting at just 7 weeks old, and having had no previous immunisations, she is a bit of an unusual case. So they have agreed to follow a similar process to that of a bone marrow transplant patient.

What are they going to do?

They have taken blood samples from Freya in order to test her body’s immunity status. They will be testing Freya’s immunoglobulin levels, and lymphocytes (T-cells). Depending on those results (and I am sorry, I didn’t ask what result they would be expecting or what a low or high result might indicate, or whether there was a chance they might just be reading ‘borrowed’ antibodies as a result of the circulating IVIG – I will ask that when we discuss results), they will start the routine inactive vaccines and the injectible (inactive) flu vaccine. After a period of time following those (I think she said 6 weeks), Freya’s immunoglobulins will be tested again to check her immune response to those vaccines. Assuming they get the right result (whatever that might be), they will then progress to live vaccines, including chicken pox. If we get moving quickly, Freya may even make it in time to have the MMR vaccination at precisely the right time. I have some decisions to make about Rotavirus (which I believe is time-specific so she may already be considered too late) and Meningitis B, as both have stated increased risks of contracting Kawasaki Disease in the patient information. I know it is incredibly rare for KD to reoccur, but show me one parent of a kid with a rare condition who finds that word reassuring.

Yes, I am still confused as to what the right answer is about timescales for vaccinations post treatment Kawasaki Disease. But, I think I have a great solution for me, for Freya. Rather than guess based on the varied guidelines out there, we are going to take a look at Freya as an individual. Actually take a look inside and see what is going on, and make the decisions based on what she tells us. The Immunologist has always said that Freya showed them the path to a diagnosis, and that they learned so much from her. Seems she is going to teach them something new. And as much as I probably do their heads in with my questions and powerpoint presentations, I do know that they respect me for it and that they are luckily not too arrogant as to discount this mum’s research and opinions. She actually said it was helpful and told Freya that she is as well as she is because of her “amazing mum”. I don’t know about that, but in a sea of negativity and low moments, I’ll take that right now.

Whatever I learn from this experience, I will share. Every Kawasaki case is different, no matter how similar some of the stories might seem. No wonder it is a tricky one to spot, diagnose, treat and understand. I hope in my lifetime they find the cause so I can finally understand why this happened to us, to my little Peanut.

Our Rheumatologist said that the subject of immunisations in these cases is “contentious” and currently being debated. Another said that “guidance is not clear as there are no trials/studies to guide us for this exact situation…” and “…is a balance involving unknowns…” He gave his opinion and advice, stating that “…there are other equally ‘correct’ versions too!” No shit!

I’ll leave you with a few of the comments that I received from KD specialists here and in the US, which might help to dispel a few myths relating to IVIG and immunity.

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And in case you can’t read that, I have pasted below:

“The reason not to give live vaccines after IVIG treatment (has nothing to do with steroids) is that your daughter has received antibodies poled from 10,000 adult blood donors who have antibodies against the viruses in the live vaccines. Therefore, the live viruses are inactivated by the circulating IVIG that is still detectable 11 months after administration…it is not dangerous to give the live vaccines…it’s just that they will be inactivated and the body will not make a lasting response. All killed vaccines are fine to give once your child is past the acute phase. 3 months sounds like a good period to wait. All live viruses vaccines should be delayed one year after IVIG.”

“We don’t usually stop aspirin when we give chicken pox vaccine for our [patients] with serious aneurysms. The risk of Reyes’ Syndrome was associated with higher doses of aspirin and not the very low dose used for the anti-platelet effect in KD patients with aneurysms. There is no data to support the notion that low dose aspirin is a risk. That being said, Reyes’ Syndrome [is] terrible and it should be easy to stop aspirin for 2 weeks. Clopidogrel can be substituted for aspirin during that time.”

“Your daughter’s immunity is not compromised by KD. It can be compromised by steroids, but only while actually taking the steroids. Your daughter’s immunity has been boosted by the IVIG she received so she is quite protected from all routine infections for the next year. There is no evidence that children with KD have immune defects that make them more susceptible to routine infectious agents.”

“…The issue of when to vaccinate children who have received…IVIG…arises because the antibodies present in the IVIG may prevent an adequate response to live vaccines. This is less clear in the case of vaccines that do not contain live organisms. The second issue is that steroids may diminish immune response and also make live vaccines dangerous. If Freya has been off steroids for 3 months she can go ahead with all the killed vaccines…”

“…The IVIG may prevent live vaccines working for over 6 months, and may interfere with MMR vaccine working. However MMR is not needed until after 11 months of age so unless there is a local measles outbreak she does not need MMR until the normal age…”

“Rotavirus vaccine is supposed to be given before 24 weeks of age which Freya may be beyond; it is probably not worth giving it at this stage…”

“…Varicella vaccine [chicken pox] should be given but as both steroids and IVIG may prevent it working I would suggest waiting at least 6 months from the IVIG and steroids before giving it…”

Angels walk among us…

Posted on January 19, 2016 by Bluemama

…they just have really tiny wings

For someone like me, being on my own can be pretty damaging, especially after what we’ve been through in the last year. Too much time means too much time to think, and when you mostly go all day without seeing another adult human being there’s a heck of a lot of time for thinking. Sure, I have Freya, and she lights up every moment that I spend in her company. But she sleeps for over 16 hours a day, and she’s not exactly a great conversationalist (sorry Freya, I really have no idea what you are saying!)

I know it’s not sustainable to have a life filled with people and chatter, and that I have to learn to live with the empty spaces in my world, but when I am not active or engaged, my mind is left wide open for intrusive thoughts and memories that turn a technicolour place into many shades of grey.

That’s life as a stay-at-home mum I guess (albeit temporary until my maternity leave ends), but I often wonder if it’s just me? Is it my character that makes me unable to make it through a day alone without feeling the tears pricking at the corner of my eyes? Does everyone feel bored, sad, lonely when they have nothing to do and nobody to see? Or is that me? Am I depressed? I’m not sure.

Anyway, enough of those depressing musings! The intention of today’s blog was to recognise those people who are out there in the world making a difference to someone like me, without even realising the huge impact their actions have. Because to them, they are not doing anything special; I am sure reading this you will find the actions unremarkable. But to me, they made enough of a difference to allow a shard of sunlight to burn through the cloud.

So, here goes..

Thank you to the local businesswoman whose message was the first I saw when I opened my eyes this morning, offering a raffle prize for an upcoming fundraiser without hesitation. It took a lot of courage for me to send those requests, and it was reassuring to receive a positive response. I won’t feel so nervous about the next person I approach now.

Thank you to the school mum who stood on the corner and let me ramble on about my concerns for my son who is having a bit of a challenging time at school. You had things to do, but you took 20 minutes out of your busy life to make a space in mine. It was just a chat. But you were the first adult I spoke with today, and it felt like a good way to start the day.

Thank you to the girl in the coffee shop for not wrinkling her nose when she saw me rocking up with a pram. In fact she looked pleased to see another person; it was empty when I got there.

Thank you to the dad who popped his head in the door to say “Hi” when he saw me sat there alone, and then kept me company for a bit before he went about his business.

Thank you to the pregnant lady and her mum (I’m guessing it was your mum) who admired Freya from the other side of the room and made me feel proud of my little girl (more proud). And when I engaged you in conversation, thank you for letting me tell you about her story, and for listening and showing genuine concern for this little girl and her mum who were complete strangers to you just moments before.

Thank you to the owner of the beauty salon for welcoming me in, for showing an interest in Freya and for saying exactly the right thing; I know you must have been following our story. Thank you for responding positively to my request, you must get them all the time. And thanks for giving me advice on how I might get the best out of the campaign, I appreciate that.

Thank you to the ladies in the chemist who served me with more than what I went in for ( and I don’t mean the syringes and nappy sacks!) I am sure you think nothing of sparing a bit of attention for a beautiful baby, but to me it means the world to see her interacting with others; she doesn’t see many people. I left your shop with a smile on my face and a spring in my step.

Thank you to the hairdresser and the florist for listening to a stranger; it was hard for me to approach you when you don’t know me at all; I will be in touch soon.

Thank you to the lovely boutique owner who has always put up with my constant prattle! Your support is appreciated, and I must repay the hours of bending your ear by buying a new dress when I’ve shifted this baby weight! My chatter sent both of our babies to sleep, and I applaud you for managing to stay awake. Perhaps it passed some time for you too, I hope so.

Thank you to an old friend for getting in touch right on cue, to organise a catch up. It has been a little while; you know what happens when we leave it too long!! We will need a few dates booked in to deal with the gossip in instalments 😉

Thank you to the mum who messaged to say she had been thinking about something I had talked to her about. The links you sent me will be really useful; it was kind of you to go to so much trouble; I think you understand how big a decision that might be and how much it means to me.

Thank you to my bestest friend (I know it’s not a word, humour me, it’s an affectionate term) for giving me something to look forward to at the weekend. Wine is most certainly the antidote to a lonely week.

Thanks to all of you for taking a tiny part of your day to make a massive difference in mine. Yes, I know this is normal life to most people. You go in a shop, you bump into people, you make smalltalk, you leave. But know that the things you take for granted because you will do it with 50 people today, mean so much when you do it with me. Today my world feels a little less small.

The Maternity Thief

Posted on January 10, 2016January 28, 2016 by Bluemama

Today Freya is 9 months old. 9 months old. I can’t even compute that. It means that we are 7 months post-diagnosis, and yet it seems like only yesterday that we were taking our baby girl to A&E with a high temp and a low appetite, completely unaware that from that day on our lives would change forever. I had my precious baby girl at home with me for 7 weeks before that fateful day. Just 7 weeks; it was no time at all. Then Kawasaki Disease stole into our lives, and stole away my maternity leave.

I have previously shared Freya’s journey, our journey, with her illness through a number of blogs, taken from a journal that I wrote during our 6 weeks in the hospital from 31st May to 9th July 2015. Before she became ill, I had spent most of those early weeks resting, making the most of being a mature mum who had no desire to rush into doing anything too much at all. I was going to allow myself to enjoy this one, and the housework could wait. So almost all of those 7 weeks, give or take a few visits from friends and relatives here and there, were spent cuddled up on the sofa with my little ‘Peanut’, and I watched movies or slept to recharge my batteries after what had been a pretty tiring delivery. On the 30th May 2015, when my parents came to visit, we went for a day out to Cannon Hall Farm, a local attraction where my older children could feed the animals, and blow away some cobwebs with some fresh Summer air. I was content, no, more than that, I was happy beyond what I could ever have imagined when I found myself unexpectedly pregnant again at 40.

The following day, Freya awoke as normal, but instead of guzzling down that first bottle of the day she laboured through it with a stuffed up nose, and after what seemed like an age of feeding she’d managed about an ounce of formula (I had stopped breastfeeding the week before). Sure, I thought it was strange, but not being a particularly over-anxious parent I put it down to her snuffly nose, and decided to keep an eye on her. She didn’t take the next feed either; I guess that was around 9am, and whilst my concern was peaked, I didn’t make any rash judgements about the situation. She was sleepy, but what 7-week old baby isn’t? That’s all they do! Feed and sleep, sleep and feed. Except at that moment, Freya wasn’t too fussed about the feeding part. I would say it was around 11:30 or 12 when I decided that I couldn’t let her sleep any longer without trying to get some milk in her, so I made up a bottle and went to rouse her from the bouncy chair she was sleeping in. She looked warm, and was hot to the touch, so I fetched the digital ear thermometer and took her temperature. 38.3ºC. She had a fever.

Again, this didn’t panic me particularly, and I sent my husband to the local Mothercare store to buy a medicine dispensing dummy (I’d had one with my son, and it is a great way to get medicine into a tiny baby). While he was gone, I fished out the Calpol (paracetamol) and began to read the label for the right dosage. “From 2 months” read the label. Hmmm, should I give it to her? Was it safe? She was only a week off 2 months, and surely they were over-cautious with these things? But I couldn’t risk it – she was too precious, and I would never have forgiven myself if anything had gone wrong. Both my mother and mother-in-law were home with me, and both agreed that if I was concerned, I shouldn’t mess about. I should take her to A&E (the ER, for my American readers) – it was a Sunday, you see, so our GP surgery was closed (a factor in our KD journey that later I would be grateful for). I opted to call the out of hours surgery number, and after explaining that Freya had a snuffly nose, high temp and no appetite, and that her breathing was becoming quite laboured (her tummy was moving up and down, as opposed to her chest), they commented that it was unusual for a baby as young as Freya to have a fever and directed us to take her to the local hospital right away.

The rest, as they say, is history. But I often get asked about Freya’s journey, how we knew, what her symptoms were, so I thought it would be useful to document our experience with KD in 2015.

Week 1 (31st May to 6th June 2015)

Visit to local hospital A&E with low appetite, high temperature and laboured breathing. Lethargy was not noted, as she was a tiny baby who was naturally sleeping a lot.
Transferred to Children’s Observation Unit for observation. Immediate concern was Group B Strep as I had tested positive during the pregnancy.
Admitted to Children’s Ward for overnight observation and placed on IV antibiotics as a precaution (standard procedure for suspected meningitis, which can develop in babies who have contracted GBS from the mother).
Following morning around 5am, Freya develops a rash on her torso, which quickly spreads to her limbs. Doctor is called who states that Freya’s body is shutting down and she is wheeled to the High Dependency Unit (HDU).
Freya is treated with a number of fluid boluses (“a rapid infusion of intravenous fluid or medication that is usually administered to correct a life-threatening condition”, Wisegeek.org). I don’t know what they put into her body, I just know that they acted like her life depended on it, and I looked on, heartbroken and in shock. I was alone; I called my husband and told him I thought he should come to the hospital.
Remains in HDU for 3 days. IV antibiotics (Amoxycillin and Cefotaxime) and fluid are administered via cannula sites, as well as regular antipyretics (paracetamol and ibuprofen). Due to the size of the tiny veins, the cannula are unstable and new sites have to be found daily, sometimes more often. Monitors attached by wires to Freya’s body show a very high heart rate, and low oxygen levels. Temperatures continue to spike despite medication to bring them down.
Condition stabilises, and Freya is moved back to the Children’s Ward. Feeding is via an NG tube up her nose, and she has cannulae in her wrists and ankles. Eventually a cannula is inserted in her head as the other sites fail. Blood tests and throat swabs are not conclusive and do not test positively for any standard illnesses. Continue to suspect GBS and/or bacterial meningitis. CRP reaches over 300. 3rd antibiotic is introduced (Gentamicin). Lumbar puncture is needed to diagnose meningitis, but Freya is too sick to undergo the procedure.
Day 5, nurse confirms nasal swabs test positive for Rhinovirus (the common cold). One consultant states that Rhinovirus could make a tiny baby very sick. Another says “Rhinovirus does not do this to a child”. Chest x-rays and cranial ultrasound are clear.
Day 6, Freya undergoes lumbar puncture. Results show raised white blood cells, but not high enough to indicate bacterial meningitis. However, Freya has been on 3 antibiotics for 6 days and it is considered that the condition may already have been fought off
Day 7, we are told that on a scale of 1-10, with 11 being dead, Freya is a 10.

Week 2 (7th to 13th June 2015)

Day 8, consultant (one we haven’t seen before) says that he is not happy that a diagnosis has not been reached and that if it was his child he would expect answers. Advises he has arranged transfer to a nearby Children’s Hospital where they had access to more resources, including the ability to carry out an echocardiogram (heart scan). Freya has her first ride in an ambulance. That evening I point out Freya’s swollen feet to the on-duty Consultant. He requests an x-ray on her chest, head and stomach, and asks for her foot to be x-rayed for suspected injury at the cannula site (I believe this was pre-peel swelling and a symptom of KD).
Day 9, chest, head, stomach and foot x-rays are all clear. Echocardiogram shows a slight murmur, but is clear otherwise. Advised a murmur is not unusual in a newborn baby and usually resolves as the heart develops.
Immunology and Infectious Diseases run various tests on daily blood samples. Antibiotics are replaced with Meropenem due to differences in hospital protocols. Acyclovir is also introduced (known for treatment of the herpes virus).
Day 10, low haemoglobin levels result in Freya needing a blood transfusion.
Day 11, MRI scan is undertaken to look for clusters in the brain that would indicate GBS infection. Freya is still so sick, she sleeps through the MRI scan and does not require a general anaesthetic. MRI results are clear.
Day 12, Freya is placed under general anaesthetic in theatre, and undergoes a bone marrow aspiration to test her cells for Leukaemia. Tests are negative. Two further lumbar punctures are undertaken, but unable to collect any spinal fluid. Prolific rash appears on Freya’s arms and legs. Immunology Consultant requests Rheumatology opinion. Rheumatologist believes it is likely to be an infection, but requests a follow up echocardiogram and further blood tests.
Day 13, sent for follow up echo, Sonographer says that he is looking specifically for signs of Kawasaki Disease. This is the first time I had heard those words. Sonographer apologises for putting his foot in it. Rheumatologist arrives to inform us that they have reached a diagnosis. Freya has Kawasaki Disease, and her coronary arteries are dilated. She requires immediate treatment of Intravenous Immunoglobulin, a blood product containing antibodies from thousands of donors. It is administered intravenously over 12 hours. Great Ormond Street and Newcastle Children’s Hospital are consulted and Freya is given methylprednisolone (high dose IV steroids) and aspirin (20mg). Seen by Ophthalmology to look for any issues with her eyes, nothing of note identified. All antibiotics are stopped. Contact made with Cardiologist at Leeds General Infirmary who says he is “not excited” by the coronary dilation.
Day 14, Freya receives the second half of her IVIG infusion (due to her size she had to have the dose over 2 days). Echo shows no change from previous day.

Week 3 (14th to 20th June 2015)

Day 15, follow up echo shows still no change from previous two days. CRP remains elevated. Rash has gone completely, and temperature spikes have reduced in frequency.
Day 16, further echo shows significant increase in coronary artery dilation. The word aneurysm is mentioned. All three coronary arteries (left, right and left anterior descending) are dilated to over 5 times the normal diameter for a baby of her age. A second dose of IVIG is required. Contact made with Leeds Cardiology who insist that Freya is transferred to their Cardiac Unit. IV steroids stopped, and oral steroids are prescribed.
Day 17, second half of second IVIG dose is administered and Freya is transferred to Leeds. Echo is carried out by Cardiologist who concurs with Sheffield’s findings and identifies a leaking aortic valve. Freya is admitted to the Cardiac HDU. Leeds Rheumatologist discusses possibility of administering a drug called Infliximab as they believe the inflammation is still ongoing.
Daily echo’s show no improvement, but no worsening either. Request made to NHS England to give Freya Infliximab, not widely used in the treatment of KD, and not permitted for use in babies under 3 months (at that hospital at least). Funding agreed based on Freya’s case; “a rare and severe presentation” of “persistently active Kawasaki Disease” (letter from NHS England granting funding). Warned of the risks; Infliximab switches off TNF-alpha, the protein that helps the immune system to fight cancer (although it should be noted that this has been found in patients receiving the medication over prolonged periods, and no evidence has yet been found of malignancy following a single dose). Cardiologist explains the risks associated with Freya’s condition; stenosis (narrowing of the arteries), clotting (causing potential heart attack) or rupture (unpreventable without cure).
Day 19, Infliximab infusion is given with no adverse reaction. Freya is transferred back to Sheffield the following day

Weeks 4-6 (21st June to 8th July 2015)

Begin weaning steroid dose with a view to ceasing after 3 weeks.
Bloodwork shows improvements. No temperatures or rashes. CRP dropping to near-normal levels (13 on Day 21).
Day 26, ambulance transfer to Leeds for cardiology follow-up. No change. Advised unlikely to see any improvement for at least a year.
Allowed home for day release, days 28 and 29. Discharged on Day 30 with instruction to return for bloodwork in one week.
Day 31, Freya’s nappies show blood in her stools. Return to Sheffield Children’s Hospital with gastrointestinal bleeding. Re-admitted to the ward. Gastroenterologist wants to stop aspirin, Cardiology refuse. Administered IV lansoprazole. Great Ormond Street confirm there can be a small window to cease the aspirin if necessary. Freya’s formula is switched to Neocate, a mild non-cow’s milk protein formula. Bleeding stops within 24 hours. Ultrasound shows abnormalities in the arteries in Freya’s bowel. Barium swallow test shows normal function. Diagnosis: cow’s milk protein allergy exacerbated by KD inflammation and medication. Steroids weaned at faster pace than originally planned.
Day 37, follow up Cardiology appointment in Leeds shows a reduction in the dilation of the coronary arteries (our “Wow!” moment) and the leaking valve has corrected itself.
Day 38, Freya is well, but kept in as a precaution. Lips are still cracked and sore, bleeding when she cries. Finally discharged on Day 39 after Barium Swallow test returns a normal result. All bloodwork within normal levels, with the exception of ESR which remains slightly elevated.

Since then…..

13th July – follow up Rheumatology appointment (Sheffield) shows ESR remains elevated, but declining. Cardiology follow up (Leeds) shows no change from previous echo. Aspirin dose is increased based on Freya’s weight gain (standard anti-platelet dose in KD patients is 5mg per kilo).

6th August – Day 68, follow up Cardiology appointment shows further reduction in the dilation of the coronaries, with the right coronary artery (RCA) normalised, and the LCA reduced to 3mm (still large for a baby, but not considered as severe).

10th August – Rheumatology Follow-up (Sheffield) – happy with progress, all bloodwork has returned to normal ranges

13th August – Ophthalmology Follow-up (Sheffield) – discharged

3rd September – Gastroenterology Follow-up (Sheffield) – happy with progress

7th September – Cardiology Follow-Up (Leeds) – no change. Care transferred to Doncaster.

16th October – Gastroenterology Follow-up (Sheffield) – happy with progress

4th November – Cardiology Follow-up (Doncaster). No change. Request transfer back to Leeds due to poor experience.

11th November – Gastroenterology Follow-up (Sheffield) – happy with progress

And there it is. The last 9 months of my life on maternity leave. Writing it down like this has highlighted to me why I feel so exhausted, and so cheated of the year I had planned to take off with my new daughter. As I type, tears have begun to run down my cheeks. I think that’s what upsets me the most. The unfairness of it all. When I gave birth to Freya, when she was finally here, I decided it was time to banish all that negativity and really live life. I was going to enjoy every second of my maternity leave with her. This was a chance I wouldn’t get again. I imagined picnics in parks in the Summer sunshine; instead I watched other mums with their babies through a hospital window. I imagined meeting new people as I introduced my baby to new experiences; instead I kept her away from other children because of a repressed immune system, and later not being able to immunise or protect against the potentially fatal consequences of illnesses like the flu or chicken pox.

Don’t get me wrong, I have made some wonderful memories along the way, and in between the hospital stays and medical appointments, the calendar is peppered with visits to the Brontë Parsonage Museum, and Manchester’s Christmas Markets. But where there are blanks on the calendar, there have been numerous phone calls battling the prescription of Freya’s aspirin, countless hours of research, letters to MPs…the list goes on. The fact is that Kawasaki Disease stole my daughter’s health, took away my happiness, challenged my beliefs as parent and protector, and robbed me of my maternity leave.

Things are starting to settle down in 2016. We are waiting for Freya’s next cardiology appointment where we can only hope for good news. A blessing to stop researching for answers I will never find came in the form of e-mail responses from two cardiology professors, and specialists in Kawasaki Disease, and I feel a sense of relief from that. Freya has an appointment with Immunology at the end of this month where I hope to get some closure on the immunisation issue and develop a plan to catch up on the vaccinations that Freya missed, plus those that might save her from a worse fate (rare or not!). Perhaps we might even be able to take a holiday when we know she is less likely to pick anything nasty up on an airplane. In March we see the Dieticians at Sheffield Children’s Hospital to discuss the introduction of dairy into Freya’s diet once she reaches one year old. And following that, if there are no adverse reactions to cow’s milk in her diet, we should have our final Gastroenterology appointment. I am not sure how long we will continue to see Rheumatology, but they mentioned 2 years at one point, so I guess we will wait and see. That will leave us with Cardiology, which is likely to feature in Freya’s life for the foreseeable future. They said “for life”.

I have 3 months left with my beautiful daughter, before my maternity leave comes to an end. Instead of being a time of transition into the parental role, it has been a rollercoaster that I have wanted to get off from the first day Freya showed signs of illness. I have enjoyed many precious moments, overshadowed by sadness and fear. But I have known true love, and I have fought with every inch of me to keep my daughter safe. I cannot imagine a life without her in it, and because she is here I have to be grateful, even if the past year has been hateful. I cannot even start to think about leaving her in April. Seems the challenges for me are not over yet.

I wish I could turn the clock back to these days, cuddling on the sofa without a care in the world

The Loneliness of Motherhood

Posted on January 5, 2016January 5, 2016 by Bluemama

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

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

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

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

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

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

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

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

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

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

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

Apply Sadness Filter

Posted on January 4, 2016January 4, 2016 by Bluemama

Yesterday my mother-in-law came round for a coffee and to see the children, like she does most days, and she brought with her some photographs of my eldest daughter which were taken when she was a very young baby, probably around the same age that my youngest daughter is now (nearly 9 months old). At first I was struck by the resemblance. Laying there on her changing mat, another wrapped in a towel, sitting up in a Bumbo seat; with the exception of those eyes, I could have been looking at a photograph of Freya. That might not seem like much of an event to you; I am sure that most mothers note those family resemblances as they add to their brood. But it was remarkable to me, because I am not able to remember what my eldest looked like when she was that small. I can’t remember feeling overwhelmed by her beauty as I am with Freya, and yet they are almost identical. And just a few moments after I stared at that photograph in wonder, I was struck by immense guilt and sadness and a sense of regret that I didn’t see it then.

Perhaps it is normal to forget? After all, there are 11 years between the two girls (wow, that makes me feel old!). Should I be able to remember? Do you remember? Somehow I feel I am in the minority. But then I think perhaps I am actually one of a majority who would prefer not to admit that their first child was actually a bit of a blur, and that the memories they believe they have can only be recalled with a visual prompt, a photograph.

Well, if it isn’t normal, then I have a good idea why this would be the case with me.

I fell pregnant in 2003, a year after I married my husband, just as planned, just when I planned it. We didn’t even have to try that hard, we were lucky to fall very quickly, and I prayed for a little girl (I wouldn’t know what to do with a boy!). The pregnancy was pretty uneventful, and on the 14th August 2014, on the very day that she was due, she came into the world, just as planned, just when I had planned it. The labour was relatively easy until Eliza got herself into a bit of trouble, and her movement down the birth canal became a game of two steps forward, and three steps back. Eventually I was prepared for an emergency Caesarian section, but was taken to theatre for a ventouse delivery when my baby girl decided she would begin to make her exit without my help (I had been told to stop pushing by that point).

I rejected her the moment she entered the world. I don’t believe it was intentional, you see I was shaking uncontrollably from head to toe by the time they released me from the stirrups and I was so afraid that I would shake her right off of me and onto the cold, hard floor. Also, the blood stained creature wasn’t the image I had been provided with in any of the movies I had seen, and I wanted a clean, rosy-cheeked darling to be handed to me like I had imagined. Instead I shook, and I cried, and I turned my head towards the wall. The one opposite where the midwife held my baby. I will never forget the first words I heard from the midwife, words that rang in my ears for many years (even now); “I am weighing your baby, are you not even going to look?!” And there it was, my first evaluation as a mother, and I had been judged and found not to measure up.

On reflection, I believe the tone in which I remember those words were quite probably different in reality. I think that the moment my daughter was born, the chemical reaction that would unbalance my mind and create feelings I didn’t feel, and thoughts I didn’t think, sparked into action.

What happened over the next three years would take more than these pages to cover. And that is how long post-natal depression took from me, before I was fully able to appreciate what I had in front of me and learn how to love. Indeed, even on my daughter’s 3rd birthday I was discussing the notion of divorce with my husband; I truly felt that so much damage had been done (by me, by the illness), that we couldn’t come back from it. But we did, and we are still here, except despite swearing not to have another child for fear of history repeating itself, we are now a family of five! Funny how things turn out.

One of the most poignant memories I have during those three years was just after my daughter’s 1st birthday. I had struggled through that year, undiagnosed. I say struggled, but actually I was so convinced that I was fine and that everyone else had a problem and were trying to send me mad so that they could take my baby away from me (oh yes, I was really that crazy!) that I wasn’t really conscious of a struggle. However after a number of incidents that I am thankful to say didn’t quite turn out as my mind had planned, I sought help and was diagnosed with severe post-natal depression. I refused medication (as you do) and went on a waiting list for Cognitive Behavioural Therapy. And then, just after she turned one, my husband and I took our little girl on her first holiday. We set off to the Maldives; who could be sad in Paradise..?

My memories of that trip to the Maldives are a bit clearer now, and I do remember there were some fun times. There were also some scary times, like the moment we nearly lost Eliza in her pram to some strong winds as the tail-end of a tropical storm hit the island, but that’s a story for another day. What I mostly remember, if I am truly honest, is the misery of washing and sterilising bottles. The constant battle with a buggy in the sand as I pushed my fractious baby round and round an island without pavement to try and get her to sleep. I remember being mostly alone (I wasn’t), and I remember being mostly sad (I was). I remember walking along the beach with my husband and saying “If we can’t be happy in paradise, what chance do we have back home?” Jeez, how must he have felt? I was so absorbed by my own misery I didn’t even stop to think about that…

Anyway, back to the point, this blog started with a photograph. Shortly after we came back from the Maldives, the photographs were developed (yup, old) and my husband handed them to me to look through. The usual stuff; sunsets, sand, sea, smiles… Hang on! Smiles? Who the hell was that?! And that was a defining moment for me, one that made me truly understand the power of the human mind. It had the ability to distort memory and reality, enough for me to question who the hell my husband was cosying up to in this picture…

The girl on the right is me. Except when I first saw this picture, I didn’t know it was me. I mean, the girl in the picture couldn’t possibly be me. The girl in the picture was smiling.

I had felt for months like I had forgotten how to smile. In fact I felt like it was physically impossible for me to show any emotion whatsoever on my face. I felt numb, like all my facial muscles had died, rendering any expression impossible. And at the peak of my illness, my brain told me that the girl had to be someone else, because this girl could not smile, and this girl was too unhappy to be that one.

Crazy, right?! I asked my GP at the time how that could happen (after my “Who the f*** is that?!” was met with utter bemusement from the recipient), and she explained that your mind is like a filing cabinet, and when you want to recall a memory a drawer opens and the memory pops out. Except in my case this nasty bitch Depression was was holding all the drawers shut and scrambling the messages. I never realised the brain was capable of such trickery.

And that’s the thing about depression; it tricks you into believing that the world it has created for you is reality. It applies a sadness filter to everything your eye beholds. Your own reflection in a mirror looks like a stranger to you. Things that should bring you joy do nothing but reinforce your misery. You become so accustomed to the darkness that you lose any desire to see the light. And the longer the illness goes unchecked and untreated, the deeper it’s nasty tentacles reach into your soul. By the end of it, it’s a wonder you even remember who you were.

I believe depression applied a sadness filter over my view of my first born baby girl. A filter that would steal her beauty from me, and trick me into believing I was indifferent towards her. How could I not have seen what was in front of my eyes? I will always be sorry that I missed those early years, and as grateful as I am that I am getting the chance to do it again with my youngest, just as I had wished it could have been, it will never be enough to alleviate the guilt that I feel now.

Goodbye 2015

Posted on January 3, 2016January 3, 2016 by Bluemama

My New Year post is a little behind schedule this year, but it has been a busy couple of weeks, with a trip to London, Christmas, a wedding and New Year crammed into a short space of time. And not only that, but 2015 was a pretty damned big year for me; one that required appropriate reflection.

Towards the end of 2014 I had begun to feel comfortable in my own skin for the first time in a long time, if ever before. I had battled for the latter half of the year with a lot of negative thoughts and feelings towards an unplanned pregnancy that was going to ruin my fun, my career, my life. But just before Christmas of that year, I had reunited with some old school friends who, coupled with some professional counselling, helped me to reach an understanding with my past, appreciate my present, and look forward to the future. My life wasn’t over, it had just been thrown a pretty big curveball, and it was something we could learn to live with, perhaps even to enjoy. Before my catharsis, I had believed myself an unlucky person. Of course I realise now that it wasn’t really the truth, and that my old friend ‘Ant’ was dominant at the time and had stolen every ounce of reality I had. She was determined to make me wallow in the darkness of this life that I hadn’t counted on, but I broke her spirit and ended 2014 triumphant.

On the 29th December 2014 I posted a blog titled ‘Metamorphosis’, which was the first blog that I publicly shared on Social Media, no longer concerned about hiding behind the mask of ‘Bluemama’;

“…2015 is a year of new beginnings for me in more ways than one. It is the year my family will be complete, and the year that I will allow myself to feel truly complete. No longer half a person living half a life, missing perfect moments whilst over-analysing the past. These past few months have shown me a glimpse of the joy that can be felt through living this precious life in the present…”

I believed every word, but I wasn’t ‘cured’. Lord knows how many of my 40 years had been dedicated to the creation of a negative force in my mind that forced me into catastrophic thinking and general negheadedness (that’s my word). Yes I felt more positive about my future, and I had come to terms with the massive change that was about to happen in my life, but I was troubled by worries about the birth, worries that were more exaggerated than the ‘normal’ pregnancy and birth concerns. I was convinced that my baby would die, and when I was diagnosed Group B Strep positive during the latter weeks of the pregnancy, I believed I had found the killer.

I worked pretty much up to the wire, in a full time job that had only recently been created and I had a lot to do before I could walk away with comfort. I had a team to recruit, as well as my replacement, and I had big projects that needed to be finished in my absence. Needless to say I didn’t get much time to ‘wind down’ and as I was booked in to be induced on the due date because of maternal age, I didn’t get much of a chance to prepare for the next stage either. My maternity leave commenced on the 5th April 2015. I was induced on the 8th April. And Freya Ellis Belle McBride was born happy and healthy on the 10th April. I will never forget the joy that I felt when she finally entered this world, and stole her place in my heart. To me her arrival was like a shining beacon in the darkness, telling me how silly I had been to fear the worst, and how many hours I had wasted on negativity and unfounded worry. She was here, she was beautiful, and she was my reason to be positive about the future.

“…She was brought into my life to teach me some lessons, but most of all she was sent to me to show me that you really can dare to dream…” (Welcome to the World, 15th April 2015, Bluemama)

“…One of the first lessons I have learned is to embrace the gifts we are given and to dare to dream that sometimes good things do actually happen…” (No time for blogging, 20th April 2015, Bluemama)

“…Every now and again a tiny little voice starts to whisper concerns about something happening to my precious little girl, but I have some allies up there in that mind of mine swatting those thoughts away like pesky midges. I think right now the worst that could happen…is that I could kill her with love…” (Obsession, 23rd April 2015, Bluemama)

On May 7th, I wrote a tiny blog titled ‘Cleansing the soul’. I truly felt that the birth of Freya had healed a troubled heart and mind, and that I might look forward to a life of hope and dreams, no longer thinking the worst. On May 20th I blogged again, sharing a poem that I had written for my son named ‘True Love’ which summed up the strength of the feelings that I had for Freya as well as it had for him. It would be the last blog I would write for a while, and 11 days later hell opened its doors to us and stole my perfect, normal, happy life away from me.

The 31st May 2015 was when Freya’s Story ‘began’. I shared my first blog about those missing weeks on the 19th July. You can find those blogs if you wish to be acquainted with the full account of what took place between the 31st May and the 19th July. For the sake of brevity here, understand that on the 31st May, at just 7 weeks old, Freya became seriously ill and was admitted to our local hospital Children’s Ward where, after going into septic shock she was treated with suspected bacterial meningitis. After 8 days of watching our baby get more and more sick, she was transferred to a nearby specialist Children’s Hospital where after days of various tests, including MRI scans and a bone marrow aspiration under general anaesthetic, and requiring a blood transfusion, Freya was finally diagnosed with Atypical Kawasaki Disease. On the 12th June 2015 we were told that our daughter’s heart was broken, and on the 12th June 2015 my heart broke too.

Freya recovered from the illness and was finally discharged, with a requirement to return for frequent follow up with Cardiology, Rheumatology and Gastroenterology (due to the widespread effects of Kawasaki Disease on a child’s body, a number of medical disciplines are involved). Her heart quickly showed signs of improvement, although improvement has reached a standstill for the time-being, and we await her next cardiology follow up in the coming weeks, where we can hope for further improvement, but expect no change. She continues to take a daily dose of aspirin to prevent her blood from clotting within the dilated arteries; medication she is likely to require for the rest of her life.

There has been a lot to be thankful for since the horror of the Summer. Freya is a remarkable little girl. She complains about very little, cutting teeth without so much as a whimper. She is happy and content, inquisitive and cheeky all in one. She is just like any other baby on the outside, and whilst we know that she has a broken heart on the inside, you wouldn’t know it and it has (so far) had no impact on her little life. I started ‘Freya’s Story’ as part of my blog and set up a page on Facebook (www.facebook.com/freyasstory) so that I could raise awareness, share information and Freya’s progress, as well as supporting other parents who might be going through the same thing with their child. Ok, so it hardly went viral, but I have just under 700 followers, and that is 700 more people than might have previously heard of Kawasaki Disease, and the feedback I have received from parents all over the world has been humbling.

This year has taught me many things. I gave Freya life, and she taught me the meaning of it. My belief system has been annihilated and I fear death around every corner. Kawasaki Disease showed up and slapped me right round my smug new mummy face. Of course I knew that none of us is bullet-proof, but the realisation of just how precious this life is was one that has been hard to come to terms with. You always think this kind of stuff happens to other people, don’t you. Every day in this life is bitter-sweet. Joy is guarded by sorrow, love over-shadowed by fear. You know those moments when you think about the future, small insignificant things that pop into your mind every now and again, like “I wonder whether her hair will be straight or curly..?”, or “I can’t wait to see her running around…” Imagine if every time you looked to the future you had something digging you in the ribs to remind you that you don’t know what that future holds, warning you not to become too complacent or to tempt fate. That is what this life is like. I don’t know what is around the corner for Freya, and no matter how hard I try to be positive and weigh up the probability of anything going wrong at all, the sun is never quite strong enough to break through the little cloud of sorrow that lingers. But maybe that cloud is a good thing? A reminder not to take anything for granted. None of us is promised a tomorrow, so if there’s something we want to say or do, we should do it now – you will only ever regret those things you don’t do.

Needless to say, this Christmas was an important one for us as a family, perhaps me more than the rest of us. Freya’s first Christmas was one way of making wonderful memories that would absolutely ensure that 2015 was ended on a positive note. And New Year’s Eve was my opportunity to stick two fingers up at Kawasaki Disease, turn my back on 2015 and take a step into a new year and a new chapter in our lives.

I have learned who really matters to me through this last year, and I will make sure that I continue to appreciate those people for years to come. I have met people that I would never have come across had it not been for Freya’s illness, and have opened my heart to strangers who have quite literally saved my life (you know who you are, Kawasister). I have won some small battles with medical professionals, and secured some contacts that resulted in a Virgin Fundraising link being set up to gather funds for Kawasaki Disease research through the links between Imperial College London and Rady’s Children’s Hospital, California. I have many ideas and hopes for 2016, centred around giving back and turning the experiences of last year into something good, but I am not going to share those until they are more concrete and I can ensure that I will not dismiss the ideas on a whim; I don’t want to disappoint anyone by making promises I may not keep, most of all I don’t want to disappoint myself.

…….

Freya just woke up, she is still awake. This is an unusual situation for us as she is usually fast asleep by 6pm and we don’t hear a peep from her until the morning. Holding her in my arms just a moment ago reinforced for me the feeling of living in this moment. I couldn’t feel angry or annoyed at her for waking, I don’t think I could feel angry or annoyed at her for anything! I hope that one day I can tell her that I love her without tears being hot on the heels of those three little words. And I hope that I never forget that whilst tomorrow might be stolen from any one of us, nothing can take away yesterday, or this moment.

…….

My hopes for 2016 are that we get closure on some of the outstanding issues with Freya’s health. I would like to obtain clarity around the issue of routine immunisations, and hopefully get caught up with those that she missed (all of them!). I would specifically like to protect Freya from chicken pox so that I might be less concerned about her mixing with other children socially. I do so wish to see her interact with her peers like a normal baby should.

I want to exorcise the Kawademons that still haunt me with flashbacks and intrusive memories, and eagerly await the start of treatment for that in the coming months.

I want to fulfil my promise to donate blood to give back for the blood and blood products that Freya received, ultimately saving her life. And I want to give back in other ways too, but I’m going to keep quiet about those for a little while 😉

I want to continue to make memories with those special people in my life. I would particularly like to be able to take a family holiday this year, as we weren’t able to go last year, and the immunisation issue has prevented us from flying. I want normal for me and my family.

This year has to be better than the last. It has to be. I mean, 2015 wasn’t all bad; it brought us Freya. But let’s face it, it was shitter than shit for the most part. Let life throw at us what it will, I no longer heed that threatening cloud. It can hover above my head and threaten rain wherever it chooses, but I am no fair-weather girl, and a bit of rain never stopped me from smiling. What’s that saying I keep seeing on Facebook? “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”

Merry Christmas, Grandad

Posted on December 24, 2015December 24, 2015 by Bluemama

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

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

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

You will never be forgotten, Grandad. Merry Christmas xxx

The Thing About Expectation…

Posted on December 14, 2015December 14, 2015 by Bluemama

William Shakespeare is quoted as saying that “expectation is the root of all heartache”, and do you know what, I believe he is right. OK, so for the benefit of today’s blog post we will ignore the fact that no-one has ever been able to provide a source for that quote and I actually believe it is a rather tenuous reference to a line in one of Shakespeare’s many plays; “Oft expectation fails, and most oft there where most it promises…” (All’s Well That Ends Well, 2.1, 141-2). Nonetheless the sentiment is there; where there is expectation, there lies an opportunity for disappointment.

Expecting less of people is a notion that I have personally battled with for a number of years. I mean, why should we lower our expectations of people? Isn’t that called settling? And what if people don’t live up to my expectations? Do I cut them off, or let them off? And what exactly am I expecting of other people; am I expecting them to respond, act, behave just like I would in any given situation? Surely not. Surely I can’t expect to control the thoughts and actions of others, no matter what my expectations might be…

But what is expectation anyway? One dictionary definition is that it is a “strong belief that something will happen or be the case…” A strong belief; that’s important. Just because I believe it should happen, doesn’t mean that it will. Like I said, no matter what expectations I might have, I have no control over others to deliver to them in the exact way that I expect them to. Reaching that understanding, the realisation that it is ok to have expectations as long as my response to the reality isn’t unreasonable has been a huge step in finding happiness in a world that threatens far too easily to disappoint.

There are a couple of ways to go about reaching that level of contentment. One is to have no expectations whatsover. Let’s face it, if you don’t expect anything from anyone, you can’t ever be disappointed can you! Is that realistic though? Is it even human nature not to have any belief in what you think is right or wrong? Probably not. So I say go ahead, set those expectations if you will. Set them as high as you can reach. But, and this is a big ‘BUT’, don’t allow your world to fall apart when the subject of your expectations doesn’t pull through for you how you had hoped.

How many of you have made plans with your partner, or your family, both even, and had this romantic notion in your head about how it is going to be? I’d be as bold as to say that at least 80% of you are lying to yourselves if you said not. This time of year is a perfect example; we write Christmas lists making our expectations for what those parcels might yield perfectly clear. We buy presents for others, ‘knowing’ how they are going to be received; “Mum will love this..”, “Eliza is going to go crazy when she opens this…” And in your mind you have this picture of how that is going to look. It’s Christmas Day, so of course the snow will be falling. The log fire will be crackling, and everyone is eagerly anticipating the gifts. Except it doesn’t snow (it rarely does on Christmas Day), you don’t have a log fire (you got a bit carried away with that one!), you just watched your mum open the same present from a sibling, and your daughter is so overwhelmed by the concert tickets that instead of the tears of joy and arms flung around your neck that you anticipated, she sits there dumbfounded with an odd look on her face and for a moment you think you might have got it wrong.

Take this weekend. I had this idea that we would get into the festive mood by taking in a local Christmas Fayre with the children. The kids would enjoy rides on the Carousel, as my husband and I watched with a cup of hot mulled wine warming our hands. We would buy lots of unusual gifts and treats for the Christmas period, and then we would buy a tree on the way home, and some outdoor lights to decorate the house. All of this would be undertaken to the sound of Michael Buble crooning Christmas classics, and it would be Christmas in the McBride house after all! Yeah, well torrential rain and muddy fields did not feature in my vision of how that was all going to pan out. Neither did a marquee so crammed full of people that you couldn’t get to see a stall, let alone purchase anything from one. The kids queued in the rain for a 50p per minute ride on a carousel, and yes I had my mulled wine, but was irked by the fact that my husband wouldn’t partake. Apparently he doesn’t like it, even if I did try to convince him it was Christmas in a glass and everyone should like it. My son got more of his hot chocolate down his jacket than actually made it to his mouth, and someone knocked into my eldest daughter, scalding her with hers. The reindeer Christmas decoration that I had seen with a sign for £30 around it’s neck, actually turned out to be £210 and was met with a very stern shake of the head from the husband. We managed to choose a Christmas tree with little event (after he convinced me that our ceiling was not 7 feet tall!). Buying outdoor lights was a treat, resulting in a 12 metre line of icicle lights making it across one window of the house until we realised that the measurement was for the whole set, including about 8 metres of wire from the mains! Cue a return trip to The Range from Sprotbrough’s very own Grinch, but the lights are up and they do look lovely (thanks Gav!)

It is part of my make-up to have expectations of people. I have a very vivid and overactive imagination and that means I can create a whole feature film in my head of an event before it has even happened. I can’t change that, it’s just how my wonderful brain works. But what I have changed over this year (possibly after we were given some pretty harsh perspective on what really matters in this life) is my reaction when things don’t quite go how I planned them.

Why should Gavin jump up and down with excitement over that cute pink dress I just bought our baby girl? He has about as much interest in little pink dresses as I have in football, and he has no expectations of me on that score. Why does my bottom lip come out when he doesn’t enthuse over the new boots I’ve bought? To him, those boots look like every other pair of boots I own and he just can’t work out why on Earth I needed another pair! He has no interest in where I carefully position each lovely sparkly ornament on the Christmas tree; to him it looked alright when it just had the lights on (that was his contribution). We like different things, we are chalk and cheese; he is from Mars, and I am from Venus. That doesn’t mean I am going to stop showing him my new purchases, or asking for his opinion. But I won’t be disappointed, upset, hurt or angry if I don’t get the response I was expecting.

There are lots of things in life that don’t go the way you expected them to. I didn’t expect our daughter to be struck by a life-threatening disease when I had planned to be out walking in the Spring sunshine with my newborn baby. Trust me, I’ve grieved for the loss of those moments I planned. But that’s what life does, doesn’t it. It throws curveballs – isn’t that what makes this life amazing? I don’t believe in all those “things happen for a reason” cliches – to believe that would be to accept that Freya became ill as part of some divine path and that makes it ok. It isn’t ok. But what it did do is teach me to take life for what it is, at face value. See beauty in the every day. Savour moments for what they are. Things aren’t only special because they turned out how you planned it to be – what about the other people sharing the experience? Have you considered how they might like it to turn out? You cannot impose your view of the world on everyone in it. So go ahead, expect all you want, but be prepared to embrace whatever outcome presents itself. Don’t be disappointed because it didn’t tick all your carefully planned boxes, look for a reason to celebrate the differences, because maybe, just maybe, the actual outcome is better than the one you anticipated if only you would allow yourself to see it.

Life is too short to be disappointed all the time becuase things don’t match up to your expectations. How about just letting something be what it is, rather than what we think it should be?

bluemama

Because motherhood isn't always rosy