She likes to scream! And I mean, SCREAM! A high-pitched, piercing scream that drives right through to your bones. It makes me wince, and is a source of anxiety for me. It has me a bit stumped if I’m honest. Up to now, I’ve been able to communicate verbally and non-verbally with my 11-month old (she knows sign language for ‘milk’, and has made up her own signs for most other things). When she was a tiny baby, I even worked out the language of her cries, and I could tell the difference between the sound she made when she cried for food to any other cry she made. But I haven’t quite managed to tune into the scream, perhaps because I am trying too hard to tune out..?
I might be getting close though. It is somewhere in between frustration and attention-seeking I think. It happens mostly when she is restricted; car seat, pram, highchair. Add any of those situations to occasions when she doesn’t have my full, undivided attention, and you can multiply the decibels tenfold. So, you can imagine how I feel if I’ve driven into town (car seat), walked to a coffee shop (pram) and sat down (highchair) for coffee with a friend (divided attention)! I am living off my nerves! That said, I keep telling myself that this is temporary. She will soon learn to communicate more effectively, and the need to scream will lessen. And as she starts to settle down in this new and amazing world she has discovered at speed as she commando-crawls across my wooden floors, I will be able to allow her more freedom. Soon she might be allowed to sit on a normal chair, stand, walk a little, so as not to feel imprisoned by a 3-point harness. Until then, I have to accept it, and perhaps try and work out how to help her break the habit. That’s the hard part.
Although, saying that, it’s not the hardest part. Oh no, the hardest part is trying to deal with the noise that my child has decided best fits to articulate her thoughts when surrounded by selfish, insensitive, intolerant human beings who either never had children of their own, had perfect children, or who can’t remember what having small children is like. Yes, that is the hardest part.
I’d like to address the above described human beings, if I may be so bold. Perhaps you will need to share this blog post on social media to make sure it reaches the right audience; if you’re reading my blog I am most sure you would not be one of those people. So here goes…
I know my daughter’s screaming is loud, and intrusive, and downright irritating. I feel it too. Except I feel it in a way that you will never come close to, because she is mine. I carried her in my body for 9 months, and I went through 3-days of induced labour hell to bring her into this world. When I beheld that little face staring up at me from the hospital bed (yes, I was on all fours like some kind of wild beast!), I had no idea that she would develop this rather annoying habit. I could do without it too. Don’t you think I would prefer to have one of those babies who just sits in their pram without making a sound so that I can engage in good old fashioned chatter with one of my girlfriends over a caramel latte? Of course I do! Don’t you think that I don’t wish I wasn’t such a prig about dummies (not that my babies have ever been able to take to one when I’ve tried)?
Do you think I can’t hear it? That every screech doesn’t churn me up so much that inside I too am screaming? Do you know the embarrassment I feel every time that sound leaves her tiny lips, or how I squirm in my seat at the thought that she is spoiling the experience for everyone else? Well, trust me, I hear it. And I feel it. And it makes me want to run. But let me tell you this; seeing the looks on your faces, watching you put your fingers to your ears, seeing your shoulders scrunch up with tension with each shrill squeak, feeling your head snap in our direction and hearing you mutter “Oh for goodness sake!”, or “What a naughty thing!” to your friends not only makes me want to run, but makes me want to run and hide and never come out again.
When you look at me with irritation, and not compassion. When you say cruel things about my baby, without understanding. Those things hurt me to my core. I can’t expect you to love my little girl like I do, but know how much it hurts to think that others are thinking ill of her because she has learned to vocalise her frustration. She is an 11-month old baby. She loves to crawl. She loves to sit surrounded by bright and noisy plastic things that make her smile. She loves the challenge of that piece of furniture that looms like Everest, yet she can conquer it in one pull on those little arms of hers; the pride in her face when she makes it to the summit is something us grown ups have long since forgotten how to show. She doesn’t particularly like being cooped up in a pram, strapped in because the floor isn’t safe or clean enough for her to roam. I hear your unuttered thoughts, “Take her to a baby group then, and not our [insert favourite venue]” Oh, how I would love the normalcy of a playgroup right now. Where I could sip a cup of tea with likeminded mums whilst our children play happily in the soft play area. Except I can’t. I can’t because my child takes a drug that puts her at risk of serious illness (perhaps even death) if she comes into contact with certain childhood illnesses, so until her immune system is able to accept the relevant vaccines, a play area is the last place you will find us.
“So, stay at home then, if that’s where she is happy.” Yes! Yes! That’s the answer. You’re quite right of course – she is happiest when at home with her toys and her freedom. But what about me? What about my needs? Most days I do exactly that; stay home and entertain my little girl, or stay close by while she entertains herself. It’s lonely. Days go by when the only adult interaction I have had has been via Facebook. So when that invite for a coffee comes in, with the opportunity to get out in the fresh air and meet another human being and talk, of course I am going to take it. It is th antidote to my depression.
“Plan your time better! Go out when she naps!” Oh yes, another brilliant suggestion. Except that I have this clockwork baby, that since spending 6 weeks laid on her back in a hospital cot has slept from 6pm to 8am without a murmur. The trade off being that she is awake and switched on for pretty much all of the daytime hours. Once there was a chance that she wouldn’t be here at all, so I’m happy to take the trade.
You see, this baby who looks like butter wouldn’t melt and screams like a fiend, has been through more in her little life than I have had to contend with in my 41 years. And she has achieved more than most of us will in a lifetime. She is an inspiration, and she is my little miracle. And me? Well, I suffer with anxiety on account of having been through the trauma of seeing my 7-week old baby get sicker and sicker until eventually a broken heart confirmed she had been struck by a rare disease with a penchant for the coronaries. I haven’t dealt with that yet; these things take time. But I am dealing with it, and for all you know that coffee I am drinking is the first I’ve had all day because that morning I went to my PTSD counselling straight after dropping the older kids at school.
I remember the silence of the first few weeks of my daughter’s illness. It’s a silence that will haunt me forever. When I feel irritation at that scream, I feel ashamed for disliking a single bit of my little girl. Sadly, the anxiety is making it difficult for me to see through the scream to the child, to understand what she needs. But I cannot hide us away from the world. She is bright as a button. She has got things worked out that a child her age shouldn’t be able to figure just yet! So of course she is going to scream when I try to stifle her need to move, explore, discover and learn.
I am not asking you not to feel annoyed; I have no control over that. I’m just asking that you search deep inside for some compassion. You have no idea what journey a person has been on. You have no idea what a person is struggling with right now. I have no idea what you might be struggling with right now either, which is why I will always look at you with kindness and a smile. If you knew that I go home and cry after an encounter with someone like you, would you act differently next time…?
So it seems I am suffering with post-traumatic stress disorder with a nice deep filling of depression, topped with a scattering of anxiety sprinkles. If I were a cake, I’d be a fruitcake.
I was thinking this morning, after I left my second Cognitive Behavioural Therapy session, about what mental illness looks like. What does someone suffering with mental illness look like? I guess they look haggard and worn, frayed around the edges. Scruffy, definitely; they wouldn’t have washed in weeks. Tired, with dark purple circles under those sad eyes. Hair scraped back in a ponytail in an attempt to disguise the oil slick it has become from days of neglect. Shoulders drooping, head hanging down, slow lumbering gait where others confidently tread. Yes, I reckon that’s about right. Except it’s rare that you would get a real close look at one, because they’ll be under a duvet, or rocking in a corner; the lesser spotted hermit…
Sometimes, mental illness looks like this…
“Nooo!” I hear you exclaim. “She can’t be depressed! Look at her, she’s smiling. And I know she isn’t depressed, because she lives in that nice house with those three gorgeous kids. Anyhow, I saw her in the Wine Bar last week and she looked like she was having a great time!”
Don’t get me wrong, there are plenty of people suffering with a mental illness who meet the description above. I’ve been there myself, duvet pulled up over my head, praying for it to be bedtime again. But this time, it’s not like that. Mostly I look like the woman in the picture. Sometimes that face has to be painted on, that smile fixed in place with staples invisible to the naked eye. Other times it’s real, and I feel real joy. Sometimes, behind closed doors, when nobody is watching, I lay curled up in the corner of the sofa and cry. I could cry right up to 3pm, then paint that face on and pass pleasantries with you in the school playground at pick up time. Being a great actress comes with the territory.
I don’t want you to think that I am fake. I’m possibly one of the least fake people you will meet. It might be an effort to put on that smile sometimes, but I am generally a very sociable person and if I didn’t feel like smiling before we started talking, it’s very likely that I will be genuinely smiling by the time we part company. I’m like that; people lift me.
And suffering with depression, either long-term or temporary, doesn’t mean that I am miserable all of the time. In some ways, whilst this illness can be debilitating, I think I am one of the lucky ones. I am very tuned in to my thoughts and emotions. When I suffered with post-natal depression after my first daughter was born (nearly 12 years ago now), it was different. I was severely depressed. I believed that my husband’s family wanted to get me sectioned so they could have my daughter all to themselves. I considered leaving, and telling nobody where I was going; figured I’d go live in some little hut by a lake in the Outer Hebrides or somewhere. I thought everyone would be better off without me, and I would be better off without them. On my worst days, I did not recognise myself in photographs. And on worse days than that, I actually contemplated how much easier life would be if my daughter could just be gone…
I’ve always been a sensitive, thoughtful soul. I guess I was predisposed to this kind of malady. In my teens, my old bedroom at home was painted black and I wrote a lot of poetry. I’ve never found it hard to cry. I think I’ve cried an ocean in my years on this Earth. I don’t believe I had ever been depressed before my experience with PND. A bit of low self-esteem maybe, but not depressed. But PND altered me; it’s like a part of me was broken that could never be repaired, and was the catalyst for years of on-and-off suffering with various mental health issues. The last 12 years have been on the whole great, though peppered with periods of counselling, cognitive therapy and anti-depressants. The last time I was prescribed anti-depressants was when I was pregnant with my youngest daughter. The only thing that stopped me taking them was the risk of congenital heart defects for my baby; those of you that follow Freya’s Story will appreciate the irony in that.
Mental illness covers a whole spectrum of serious disorders in a person’s behaviour or thinking, with over 200 different conditions to choose from. Now, that was a bad choice of words; this isn’t something anyone chooses. But you get my drift. And although many people will suffer, with or without a diagnosis, with the same conditions all over the globe, the degree to which they suffer will vary with every individual. What I am going through this time is very different to anything I have suffered with before. Firstly, the post-traumatic element is new; I hadn’t faced any real trauma before my daughter was diagnosed with a life-threatening illness last year, so that’s a first for me. The treatment I am receiving is specifically designed to expel the flashbacks and help my brain to process the memories that have got a little lodged on their way to my long-term memory. The depression isn’t new, however it has been nicely disguised, hiding in the shadows of the PTSD, waiting for the right moment to strike. It felt now was a good time. And then there’s the anxiety, and oh boy ain’t that a treasure!
So, just how much fun is it to live with me these days? I guess you could ask my husband or my kids, but like I said, I’m pretty in tune with my thoughts, emotions and behaviour to give you a pretty honest view of that.
I’ve talked about PTSD before. I’ve shared some of the flashbacks and intrusive memories that I have suffered since my daughter was diagnosed with Kawasaki Disease last June. I’ve told you that sometimes, when I look at Freya for long enough, her face morphs into the sad, scared, sick little baby that pleaded with me with her eyes from a hospital cot. I was embarrassed by the diagnosis. You associate it with war veterans. But, it does happen to people who have suffered a critical illness, or in my case watched a child suffer. There’s a big difference between a flashback and a bad memory. We all have bad memories from time to time; a smell that reminds us of our first love, a song that can recall memories of a lost loved one, events that remind you of the time you were badly beaten up at school by that one girl in your GCSE year (https://bluemama.co.uk/2014/12/01/one-girl-one-day/). Bad memories I can deal with. They are long-term memories, and as such when recalled the emotion doesn’t hit you with the same intensity that it did at the time.
A flashback puts you right back in the original situation, and all the components of that memory – the emotions, the sounds, the smells, the physical surroundings – are replicated with all the intensity of the event itself. Apparently when these happen, I have to tell my inner child, the victim, that it is ok for them to remember, but that I will help them through it. I know, right?! But joking aside, the tips I have been given have worked, and I haven’t had what I would call a ‘real’ flashback for a little while now. Removing the spare cot from our room was a stellar move and my brain no longer keeps me up until the wee hours to avoid going to bed. Cognitive Behavioural Therapy that specifically focusses on trauma, exercises ‘mindfulness’ to overcome that trauma by training your brain to accept the thought, but to prevent it from lingering by focussing your attention on how the thoughts made you feel, rather than the memory itself. I’m sure I’ve just understated the treatment completely, but that’s it in layman’s terms. And it actually seems to be working. We haven’t yet worked through the key reason for my condition (Freya’s illness), instead we are working through three other life events which evoke a particularly poignant memory (good or bad). The idea being that you practice the techniques on some more dormant memories, so that by the time you reach the biggie, you’re ready for a fight. Today we practised the technique on the memory of the death of my grandfather. I’ve been told not to reflect on that outside of the sessions, so I shall leave that there.
The depression is different again, and kind of fills in the spaces between the PTSD symptoms. It’s a general feeling of low mood, varying in intensity depending on the day, the hour, the situation. I can’t describe it any better than it being like a dark cloud permanently looming above my head, casting a shadow over me. The good thing about clouds, is that sometimes they shift a little in the breeze. A strong wind can brush them off completely for a time. And the sun sometimes manages to break through and cast a beacon of light upon my path. In some ways, I have learned to control the weather. In the PND years, I couldn’t have done that. But as I have said, I am more self-aware now. I know that even if all I want to do it bury my head under that duvet, I have to choose another way. Having kids kind of forces my hand. With my firstborn, I didn’t have to be anywhere, so it was far too easy to stay in my pyjamas all day and wallow in sorrow. I know some victims of mental illness find themselves in that place, regardless of their personal circumstances. Luckily, this hasn’t taken all of me, and I do function on a pretty normal level most of the time.
How does depression affect me? Well, I go a bit into myself sometimes. I think a lot. I cry a lot, not always for any reason. I question my capabilities as a mother, as a wife, as a person generally. I lose sight of my self-worth. I retreat from people when I feel hard done to, and the depression makes sure that the further I retreat, the higher the wall becomes. I have automatic negative thoughts (‘Ant’ – you might have met her in previous blogs. She looks a little bit like me, but a lot like that girl that beat me up in my GCSE year. Pretty girl, likes to stick the boot in now and again). My thoughts tend towards the catastrophic. And I get a bit hung up on signs. Numbers, magpies, white feathers, a necklace breaking; all signs of impending doom for me or my relationships. On a good day, it doesn’t affect me at all. No more than a grey cloud hovering above, threatening rain, but not quite managing to defeat the sunshine. I’m stronger than I think I am.
For a more insightful description of how depression feels, I don’t think there is anyone that has done it better than The Black Dog Institute when they put out this video on You Tube (https://www.youtube.com/watch?v=XiCrniLQGY).
And lastly there’s that little treasure, anxiety. That’s a whole new ball game. Aside from the nasty flashbacks, I have found the anxiety the most debilitating and damaging of all. The Mind website provides a pretty comprehensive list of the symptoms of anxiety, so I thought sharing that was as good as any list I could provide (http://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-symptoms/#.VsTInsexrjI)
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That’s how I feel a lot of the time. Add to that the fact that I have developed a hypersensitivity to certain sounds, which make me want to explode (want to? You do Jo!) and I’m pretty much a coiled spring of anxious tension from dawn ’til dusk. You can imagine how fun it must be for my husband these days!
But. And it’s a big but. It’s not all bad. I am that girl in the photograph. I do smile, and quite often that smile manages to reach all the way up to my eyes. I want to do things, see people, have fun. I like to escape the confines of my daily life sometimes. I want to be happy. I don’t want to cry, or shout, or feel inadequate. I want my family to love me, not to worry about me or look at me with judgement when I fly off the handle for what seems like no reason at all to them. I have things I want to achieve, places I want to go. For now, I am giving the counselling route a try. If things don’t get any easier anytime soon, I will consider medication.
No journey with mental illness is easy. Some might be easier than others, and I am open to treatment and very self-aware. I know that right now I have feelings that could result in life-altering decisions. I also know that those feelings might not be real, and until the fog lifts I will hold those thoughts. Thoughts are not facts.
To anyone who has ever suffered, or is suffering still, I hope you find your own way to mend. There is help, but it can often be hard to ask for it, sometimes even harder to find. I talk candidly about myself and my experiences now. I haven’t always. When I started this blog I was too afraid to make it public for fear of judgement. But this last year has taught me some lessons about not holding back, so now my heart is firmly on my sleeve for all to see. Judge, don’t judge. It’s not important to me anymore. And if I ever offend with a too glib portrayal of mental illness, please know that a) I only describe what mental illness means to me, how it has affected me, and b) that humour has often been my way of handling the most negative of situations.
One in four people will suffer with a form of mental illness in any given year. Take a look round you, at your family, your friends. If it’s not you, it could be one of them. Be kind, always, because you never know what personal struggles other people may be facing, even when they seem to be wearing a smile.
You are all I need Peanut. Sure, there are other people that make me happy, but no-one has the power to make the sun shine through the rain like you do. For me, you have become a symbol of strength and love, and a living example to all of us that we really should grab this life with everything we’ve got, because there really are no guarantees.
Quite often that makes me sad. I can’t help but wonder what your future holds; sometimes I wish I had a crystal ball so I could see your life unfold and be happy that this thing isn’t going to get you one day. But I guess there’s no fun in that is there? So I have to hold on to hope.
You have a cardiology appointment next week, sweetheart. I always find myself a little more melancholy than normal, and a bit more anxious that I usually am, as the date approaches. The problem with me, is that I like to be in control. And this most definitely does not allow for me to have control. None. I don’t expect the appointment to give me any surprises. Not bad ones anyway. Your condition, if it gets worse, is unlikely to get worse any time soon. We may even be blessed with improvement, but let’s not jinx things, eh? The best I can hope for is no change. And even then, it’s a limited view. What’s frightening is that we only know what we can see. An echocardiogram can only show us about 3mm into your arteries. Beyond that you need an MRI scan, but they have no plans to go looking yet. I wonder why? Maybe because you are so young, it would be preferable not to sedate you. I have to remind myself that the only reason you didn’t need to be sedated for your last MRI was because you were too sick to care.
I think, to all intents and purposes, we could be bold enough to say you are out of the woods for now. Can I say that? Should I say that? The scientific part of my brain keeps telling me that the only thing that can cause you any problems is biology; my words will not be the cause. Thoughts are not facts. For now, I have two questions for the Cardiologist. “What will I need to do throughout her life to protect her heart?” and “Remember when you took me in a room and told me about the risk of a coronary aneurysm rupture, and how you told me that you could do nothing to prevent it, and that if it happened she would be gone? Well, do you think that is a risk now?” Let’s see if we can get some questions answered next week shall we? So you will need to behave yourself. You won’t! You’ve been trying to take over the echo since all this started; next week you are going to be rolling, and grabbing, and trying to crawl off the table! Things just got interesting!
So it’s just dawned on me that I never had one of those baby books, the kind where you write all the milestones down. To be honest, I had books with your brother and sister, but the novelty wore off a few weeks in and there are two half-finished (half-started?) baby record books gathering dust in the loft. And then I thought I could do it here. So let’s see, what can I tell you about you….
You have been sitting up for a while now. For some time it seemed like you were never going to get there, but you did. Your preferred mode of transport continues to be the ‘commando crawl‘ – you’d be fantastic on one of those military assault courses! And you’re fast Peanut, real fast! When you spot something you want, you can be at your target in a nanosecond. I have to be on full alert – generally the thing you spot is something you shouldn’t have and everything goes in your mouth. When I thought I’d cleaned up all the pine needles from the Christmas tree, you still somehow manage to find them. And eat them.
You have a real sense of fun. You are going to be like your brother; full of mischief. You are always doing something, always busy. You’ve just started getting up on your knees too, which means more of the world is within your reach, and I can see how exciting that is for you. You are always in my kitchen cupboards, always pulling books off the bookshelves, always finding the one thing amongst all the other things that you are not allowed to have. You are going to keep me busy!
You have a few words in your vocabulary. “Daddy” has been a favourite for some time. There’s something very cruel about ‘dadadadada’ being the easiest sound for a baby to make. You’ve said a clear as a bell “Mama” once. It was magic. You’ve not said it since. Your absolute favourite is “Uh-oh”, which was remarkable when you first said it because it alerted me to the fact that you had dropped something, like that time you dropped your toy in Marks and Spencer and I wondered why you wouldn’t stop saying “Uh-oh”. Now it seems that “Uh-oh” is a catchall word for everything. I think it means you are hungry, thirsty, tired, sad, angry, happy…it’s a one word fits all kind of thing! I’ve been able to make out a few other discernible words; doggy, dinner, bye-bye. You know your sister. She’s Eliza. That’s “a-la-la” to you.
And you laugh sweetheart, you really laugh. Just a couple of weeks ago, we needed to tickle you to incite a giggle. Now you laugh at everything and everyone! You laugh at trees and flowers, birds and cats, me, your dinner, everything! Just the sight of those tickling fingers coming your way and you are reduced to an uncontrollable cackle. You see joy in most things, and you are slowly teaching me to do the same.
But, it isn’t all hearts and flowers my little cherub. There is one thing that is currently driving me crazy, and that’s the scream! You have developed a squeal that would rival any dolphin, and brings half the neighbourhood’s dogs to our doorstep. I think, roughly translated, it means “Hey, you, why are you not giving me your 100% total undivided attention right at this very second and every second after it?” but I don’t talk baby, so who knows if I’ve got that right. Most mums could probably ignore it. Unfortunately, I suffer with anxiety, and have real trouble with noise, so that little scream goes right through me and rings in my ears. Let’s hope it passes soon (either the screaming or the anxiety – both would be nice).
You do still hold the title of ‘Epic Sleeper’, and if I didn’t know you were real I would start to wonder if you were some kind of clockwork toy. I’ve looked for the key, I can’t find one. The daylight hours are short with you Pickle. You wake around 7am (sometimes later), nap for anything up to 2 hours at about 10am, and from 4pm to 6pm your constant squawking acts as a reminder that it is nearly bedtime. 6pm comes, you’re milk-drunk and sleepy and off you pop to bed, and we don’t hear a peep from you ’til morning. So, on a 2-hour-nap day, I figure we get about 9 hours of you. The thought of going back to work and that becoming 1 hour is unfathomable.
I don’t know if you will ever remember this time in your life. I hope you don’t. Your first year has been blighted with illness, fear, hospitals, and me. And when I say me, I don’t mean that I’m not a good mum to you. I shout sometimes because the anxiety builds up inside my like gas in a pop bottle, and sometimes your brother or your sister, or a noise, or a setback, shakes me up just a little too much and the lid blows off. And I am often sad. I cry. A lot. I can’t tell you that I love you without tears pricking my eyes; I hope you don’t grow up associating love with sadness. Sometimes when I look at you for too long, your face becomes the face of that tiny baby pleading with me with her eyes. I don’t sleep that well either, because I’m always straining to hear you breathing on the monitor. When I wake, it feels like I have slept holding my breath, and I am frozen in my bed until I hear a shuffle or a snuffle from you. I am sure all this will pass, and I am getting help for it so that I can get this under control before you do start to notice that mummy is always sad.
It is lucky, then, that I adore you. You are a pleasure to be around (which is lucky indeed, as you are the only person I see very much of!). If you were a different baby, I reckon I’d have cracked up by now. But you, my dearest Freya, are the light in the darkest of days. Sometimes, you look at me with those ocean deep eyes, and it’s like your very soul is speaking to me; “I’m gonna be ok mummy.”
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- 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.
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.
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.
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…
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.
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.
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.
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…
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.
“So, what brings you to us today?”
There it is, the dreaded question. The question that you know is going to be the first one they ask, so you rehearse it over and over while you’re sat in the waiting room. The question that, when it actually comes out of the mouth of a psychotherapist, is most often met with a blank silence, and lots of tears. It’s a funny question to ask I think (funny odd, not funny haha). I mean, where on earth do you start? The relief of actually being in front of someone who is not only qualified to ask these questions, but might actually know how to help you deal with the answers, has always resulted in me falling apart right in front of them. The same can be said of this morning.
I felt sick to my stomach this morning, and a couple of times I thought I might actually run. But then they called my name, so I had to see it through. These things can go many ways; a lot depends on who the person on the other side of the door is. I’ve been known to go for help (yes, I’ve been here before, well kind of – I’ll explain later), and clam up the moment they’ve opened their mouth. “Yes, I’m fine. In fact, I’m not really sure why I’m here. I’ve been feeling much better lately…” Mostly they are the kinds of people that are experienced in getting people to talk, and are warm and welcoming, and I spill the beans before my backside has even met the chair.
Today was like that. I was introduced to a trainee psychotherapist who would be responsible for carrying out my assessment. i did feel immediately at ease with both her and the psychotherapist present and was able to articulate how I felt to a degree. I answered that question, after a pause and a moment to catch my breath and stem the tears, that I was struggling to come to terms with a situation that I found myself in. I explained that I felt an incredible sense of sadness that our child was struck by this devastating illness, after just seven weeks of normal. I explained that I felt afraid that I loved Freya too much, and that every time I felt positive about the prognosis I was overwhelmed by the fear that the rug could be pulled out from under my feet. I explained that I felt angry at the world for not understanding how much this has impacted on our lives, and that I had considered taking myself and my daughter far enough away from all of this to convince me that it never happened.
After a considerable length of time where I switched between a mother unable to speak through the tears as I recounted some of the experiences that you will have read about if you follow this blog or the Facebook page, to a sensible, level-headed woman who could describe the illness and its effects with the knowledge of a medical professional, a conclusion was reached. I am not depressed. I knew that. I have suffered with depression in many forms in the last 11 years, and I knew that what I was feeling was not the same. It’s one of the reasons why I have struggled on alone for so long; I didn’t have an appropriate label for what I was experiencing. I don’t display the classic symptoms of someone with depression. I enjoy my life and know that I have a lot to live for. I don’t avoid people or situations, in fact I look forward to human interaction and an opportunity to escape, let my hair down, mingle with my peers. I took part in a hen party this weekend, which I thoroughly enjoyed (apart from the bit where I cried myself to sleep looking at a picture of my precious Peanut). Some of the old familiar thoughts have been creeping in; I text her ages ago, why hasn’t she responded? She has probably had enough of me/isn’t interested/doesn’t care/doesn’t want to be friends with me anymore. But I’ve managed to ‘have a word with myself’ and been rewarded by a late response and an explanation that allayed my fears, and reaffirmed my common sense. I get up every morning, shower, make myself look presentable (cue the school mums saying “Seriously! She thinks that is presentable!!”), I have my nails done, I buy nice clothes. I am still interested in my outward appearance, and take care of myself.
However, I experience anxiety like I have never known before. Full blown panic attacks where I feel like I am being strangled, and my body wants to sink into a puddle on the floor. Real, deep sadness that takes my breath away. Intrusive thoughts that threaten every moment of happiness that I dare myself to have. Confusion, anger, hatred, irritation. I shout at my husband and the kids like an old fish wife at times; I have no patience. I want to lock myself in a room for a week, or more, and shout, kick, scream, punch some walls; let the emotion of the last 6 months escape from me in one tremendous fight against myself and the world.
See, I’ve written my blog. Every time I have feelings I need to share, I take to my Mac and write. I don’t think about it, my words are not considered. I sit and write whatever my fingers choose to type, and Prosecco-fuelled as I am now, it just comes out, unconsidered, but raw and real. I thought it would help, that writing would be therapy. It has a little, but not a lot. I feel like the words have to be spoken, aloud, to someone who hasn’t shared this journey with me, to someone who hasn’t had their own journey to contend with, to someone who doesn’t have an opinion on what I should think or feel. To someone who doesn’t wonder what all the fuss is about (you know who you are!). And I do not want the rest of my life or hers to be defined by the bastard that is Kawasaki Disease. It has already taken enough from us. And right now, Freya doesn’t notice that there are tears behind every smile, but it won’t be long before she does notice. “Why are you sad, Mummy?” These are not words I ever want to hear come from that sweet little mouth. But they will, if I don’t take control. And I don’t want Freya to grow up scared of this world she lives in, scared of her own strength, frightened to fall or take chances. I want her to live, and love life. How can she do that if I put her to bed every night afraid that she won’t wake up the next morning?
The psychotherapist admitted that the low intensity treatment they offer is not what I need. It is likely that I am suffering from post-traumatic stress disorder (PTSD) and am being referred for appropriate treatment. I have a number of choices ahead of me. I need to choose the treatment that will benefit me and my family the most. I can be treated for PTSD with cognitive behavioural therapy (CBT) and eye movement desensitisation and reprocessing (EMDR), which are standard treatments. Or I can have talking therapy that will allow me to say aloud all the things I have kept inside of me for these past few months. Both would benefit me. I think the most important thing for me to deal with right now are the symptoms of PTSD. I need to rid myself of the anxiety, and be able to walk into our local hospital without it having a physical and debilitating effect on me. I need to get some sleep; stop staying up until 3am to limit the number of hours that I am not alert to Freya or aware of her nearness. And I need to erase the flashbacks, because those are the most distressing of all. I have lived through these things once, re-living them every day against my will is making me unwell. I will never forget some of those moments, nor do I want to; those moments are what will ensure I never take a moment with Freya for granted. But I don’t want to see them played out in my mind like a DVD on a loop every day of my life. Those memories are stopping me from moving on, and from seeing the beauty of life that is in front of me. And I want to move on more than anything.
My dearest Freya
I haven’t written to you in a while, your journey has been continued through my blog and I mostly write to whoever is out there reading your story. But today I found myself missing my imagined conversations with you and felt compelled to write.
I spend most of every day with you, my darling, and every day my love for you grows more and more. You are an inspiration to me, and you leave me awestruck. I cannot look at you without marvelling at how far you have come in such a short time. On Saturday you will be 6 months old. Just 6 months! It is hard to comprehend what you have been through, and I have to pinch myself to believe that you are still here. And you are still here, despite this nasty disease’s best attempts to reach a less favourable outcome. But despite the fact that you are doing so incredibly well, I cannot help the anxiety I feel for the eternity of fog that lies before us.
I read stories about KD all the time. Every day I see comments from parents of children who have suffered, or are still suffering at the hands of this disease. I feel the fear in their words. Sometimes, like today, there will be a post from a parent who wants to share the news that their child, so many years after KD, has had a clear echo, or is surviving against the odds and sticking two fingers up at Kawasaki Disease. Those stories are great, but they also act as a reminder that this never really leaves you. There are daily posts from parents airing their concerns about the perceived after-effects of KD; behavioural problems, anxiety, joint-pain to mention just a few. Reading those comments, I wonder what will become of you? I don’t know if it is a blessing or a curse that you are so young? I will never know how KD shaped your personality because you didn’t have one before it got you. What I do know, is that it feels like I will have such a long time to wait to see the real long-term effects of the disease on your body and mind. I can be thankful that you shouldn’t feel any anxiety as a result of your illness. You have no idea how close you came to leaving us; you have already forgotten what KD did to you. I don’t think I will ever forget.
I want to though. I want to be able to live our lives without that dark cloud looming above our heads, threatening rain. I want to be able to flick the switch that will stop the last few months playing over and over in my mind like a DVD on repeat. I want to look at you and see your sweet, beautiful face looking back at me, not the lost little face that is etched in my memory. I want to muse about the future without the niggling doubt that there might not be one. And that’s not because I think you are going to die, because I know that you are doing really well sweetheart. It’s just that I dare not say it out loud in case I jinx it and set in motion a whole new twist of fate. It’s true that there is nothing certain about life, but mostly people go through life taking it for granted that it will last forever, or at least for a very long time. Of course, a life can be taken at any time, and it wasn’t in anyone’s plan for this disease to take you when it had its strongest chance. I had never thought about death as a real possibility before. Now I think about it all the time.
I know it will get better. I know that every day we move further away from the diagnosis is a day closer to healing. And I am sure when you have had your next follow-up appointments in November I will gain some more comfort for our journey. It seems like such a long time to wait, and I wish there were a way I could see right through your little chest into that heart of yours. That’s the cruellest thing about this disease. On the outside you look like any other baby; happy and healthy, with little rolls of fat on those chubby thighs of yours, and a rosy flush to your cheeks. You can do everything you should be able to; you can roll over onto your front (mostly when I’m not watching, cheeky lady), and you chatter away all the time (this has most recently developed into a high-pitched scream whenever I am not paying you any attention!) But in there, something is happening. Probably good things, maybe nothing, but something. It is completely out of my control, and is a constant threat and source of anxiety for me.
One day we will sit and chat about all of this, and you will laugh and tell me how silly I was to worry (don’t tempt fate, don’t tempt fate). Oh sweetheart, I am sorry for writing in such a negative way. I ought to be telling you how strong you are, and how great your life is going to be.
I went to see my doctor today. You came too. I was hoping you would stay asleep so I could keep you in the car seat with the rain cover on, acting like some kind of immunity bubble. I hated that you were there with me, in that place full of germs, but I felt that if I took you with me maybe the doctor would fall in love with you and advocate for you as much as I do. I want them to agree to prescribe your aspirin so that I don’t have to keep facing the battle at the end of every packet. I felt like if they saw you, there would be a more personal connection and they might fight harder. The doctor appeared unmoved. I told the Doctor that I believe I may be suffering from post-traumatic stress disorder, and that as time goes on I am noticing some of the signs of an old ‘friend’ that I thought I’d managed to banish from my life. He asked what I had in mind, and suggested antidepressants. I’ve declined that for now, and asked to be referred for talking therapy.
I have so much hurt inside that I could lock myself in a padded room and just scream until there is nothing left. I am not what most people would describe as depressed (but then, how many people get that right anyway?!) I function pretty normally. I get up in the morning, shower and make myself presentable (in my humble opinion!) I change you, dress you and feed you, and I run around after your brother to make sure he is ready on time for the school run. I smile and chat to the other mums in the playground, and I genuinely enjoy seeing other people. I don’t cry all the time, but I cry a lot. It used to be that I just cried when I thought about all of this. Now I cry over a lot of other things too; like things I see or hear on the news. Yesterday, an 11-year-old boy in America shot an 8-year-old girl dead. That made me cry. I’ve started chewing my fingers again. That’s a sign of anxiety for me. And I’m angry and sad, and irritable and irrational all at the same time, which is exhausting.
It’s like my insides are all tied up in knots, and I feel like I am constantly holding my breath. I thought that writing about all of this would make it all better; that in some way it would be like self-help. It hasn’t worked out quite how I planned. I text my kawabuddy pretty much every day, and that makes me feel better because I know she understands how this feels. And yesterday we went to Nottingham to meet a lady who founded the Kawasaki Support Group here in the UK, and she still remembers how this felt for her 20 years ago. I think everyone else probably thinks I should just get over it and move on; that you are better now. You are here. I know I should too, but this disease is full of surprises and it’s like I am waiting for its next move.
The fact is that somewhere in between the 31st May and the 12th June my heart broke. I can’t say when the damage actually happened, perhaps around the same time that it happened to yours. What I do know is that, like yours, it is slowly repairing. But it remains broken. I have sought help to heal it, but accept that it may never heal completely and there will always be some small part that Kawasaki’s killed; the part that believed that I could protect you from anything.
I loved you from the very second you were born into arms that shook with fear that they might hold you too tight. I love you more today than I did yesterday, and I shall love you even more tomorrow. Your smile will help to mend our broken hearts.