If you love somebody, let them go…?

Dear Freya 

I hadn’t realised just how much I love sharing my life with you until just now. I have a pretty bad chest infection, and I’ve been told to rest as much as possible, and that if I haven’t improved in the next couple of days I may have to be admitted to hospital. So to avoid the latter, I have pretty much been holed up in my bed since 7pm on Monday evening (it’s now Wednesday).

I started to miss you yesterday. Miss your smell, and your beautiful eyes, and your constant babble and chatter. Jeez, I’ve even begun to miss The Little Mermaid! Lying here I feel bereft of the things that I usually take for granted, of the things that I often find tiresome if I’m honest. 

A moment ago you quietly whispered “mama” from your cot. You didn’t need to cry or shout because you know that I am always there for you, and I’ll come when you call me. Your daddy came to get you, and you popped into my room for a minute before he took you down for some lunch. And in the seconds after you left, the tears came spilling out of my face like big fat raindrops. 

Yes, I guess I’m feeling a bit sorry for myself being under the weather and all. But it’s more than that. When you softly called “mama” I was catapulted into a future where you awake in someone else’s care, calling my name into a space where it will not be heard, not by me. And it made me wonder how on Earth I am going to be able to part from you in 6 months’ time when I am due to return to work and pick up where I left off two years before. Two years. It’s a long time to get used to being around somebody, and I must say that I never considered how I would feel at the end of it all when I extended my leave. 

Right now I can’t even think about what I am going to do, so I swat those thoughts away like a pesky fly and try to use the strength I have to will myself back to health so I can propel myself back into our daily, humdrum routine. To think that last week this Groundhog Day kind of life was becoming wearing! That I felt hard done to for not being able to escape it sometimes! And here I am, escaping all of the things that are part of being a wife and mother, and it’s killing me that there’s a load of washing to go on, no food in the fridge, and that the 58,000th viewing of The Little Mermaid is taking place downstairs without me. 

I can honestly say that I have never felt the wrench of an impending return to work like I do now. After two periods of maternity leave, I went back without question to a career that I had not allowed myself to miss, but had been looking forward to returning to by the end of a year. But things with you have been different. Perhaps because you are most definitely my last. Maybe because I am older now, wiser. Possibly because what we went through together last year created a bond that goes beyond emotion; like chemistry. Maybe just because you are like sunshine on a cloudy day. 

So I will rest. I’ll ask for help and accept it with gratitude and grace. I’ll not let this develop into anything nastier than it already is, because I cannot be removed from you. These last couple of days have given me a tiny taste of life ‘without’ you, and a sense of urgency over how we make the next 6-months worth the pain I know I will feel at the end of it. 

I was always so level headed about childcare before you. Now I cannot picture myself dropping you at someone else’s door. What have you done to me, sweet, funny, determined little Freya? I am undone.

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A (rainy) Day in the Life of

When I was working, I often used to think about stay at home mums and wonder what on Earth they did all day.  I imagined it was countless coffee mornings and baby yoga sessions, and although I thought it could be quite a dull existence, I often envied those mums who got to spend all their time with their children.  Now I am one of those mums – well, for a time anyway.  I am not a forever SAHM, but I am on a career break following a year off on maternity leave, and am now 17 months into a 2-year break from my job.  And in my new role I have gained more than enough experience to know exactly what SAHM’s do all day, and it varies from minute to minute and day to day.

Mostly I consider myself lucky. Lucky to have my daughter here to share the time with (see previous blogs tagged Kawasaki Disease if you are not familiar with my daughter’s story), and to be able to share so many precious times with her.  It’s also nice to be able to take the other children to school, and to be here when they come home, cook a meal, do ‘normal’ family stuff.  One of the huge positives for me is that I pretty much always have a clean and tidy house, and I have never been on top of the laundry so much in my entire life to date!  Boring, I know, but I have a child who sleeps for three hours in the day so I have to keep myself occupied (although I will confess, I have been known to spray some polish into the air and watch a movie or two!).

Yesterday was a pretty nothing kind of day.  The weather forecast suggested it would rain  so I had already decided it would be an indoors day (much to my annoyance, given that we spent all last week on house arrest with my youngest whilst she battled chicken pox, hand, foot and mouth, or both!) Oh, joy!

So, here is what this SAHM did all day yesterday…

07:01     Text oldest daughter “What time do you get up?”

07:05     Text received “Now”.  Well that’s that sorted! The parental heaven that is a 12-      year old that can quite easily manage herself in the mornings.

07:10     Screaming of the house alarm! Eldest has remembered to let the dog out, but has forgotten to unset the house alarm before opening the back door.  Again.  For the millionth time since we got the puppy!   Baby stirs, lay as stiff as a board with teeth clenched, hoping for the chance to hit the snooze button!

07:40    Wake middle child (cue “I don’t want to get up!”, “I’m still tired!”, “I hate school!” or any combination of the three).  Manage to cajole him out of bed to get dressed (again to complaints that this isn’t the order he likes to do things in – he prefers to eat breakfast in his pyjamas, aka pants, but I want him organised as soon as possible!).  Go downstairs, feed the dog, make breakfast for the awkward one and prepare packed lunch.

08:00    Wake baby up.  She greets me as always with a huge cheeky smile – the only one of the family who seems to be happy to be awake! But then she did go to sleep 14 hours ago so I guess she’s all done with sleep!  In the interests of being organised, today I get her dressed before breakfast and vow to be extra careful with the Weetabix!

08:30    Leave for the school run.  Although it’s only just under a mile and a half we drive, because quite frankly we would have to be up far too early to get there on foot with my son.  In my defence, I do sometimes leave the car at school and walk home, returning on foot at pick-up time to get some daily exercise, but only on dry days or when I can be bothered!

09:00    Get home from the school run and make a cup of tea.  I made a decision yesterday that Freya needed more stimulation, and vowed to spend at least an hour per day in some kind of valuable developmental pursuit.  Got the painting stuff out and proceeded to paint at the kitchen table (or in Freya’s case, ON the kitchen table!).  Good job this stuff is washable!  She was bored after about 30 minutes – ok, ok, so it was me who was bored! I think she would have painted all day long if I had let her! But she’d managed to paint about 5 masterpieces using mainly her hands and the wrong end of a paintbrush, so I figured that was enough.   Took photographs of said masterpieces and posted on Instagram to show world just how good I am at this mummy stuff (I’ve got to love Social Media for allowing me to share all these perfect, wonderful moments.  Not sure the world is ready for the screaming banshee selfie!)

09:30    Bribe youngest with a biscuit to allow some sofa time and a bit of The Wright Stuff. Email Immunologist to ask for advice regarding the postponement of Freya’s MMR vaccination.

09:40    Check e-mail.  No reply. Eat half a packet of Rich Tea biscuits with a cup of coffee.  I don’t even like Rich Tea biscuits!

10:00    Check e-mail.  No reply. Anyone would think this doctor is busy….

10:20    Google “What to do with a toddler all day long.” Roll eyes at Netmums.

10:30    On first sign of tiredness, make up small bottle of milk (I know it’s a bad habit that I need to stop!) and put Freya in her cot for a nap.

10:42   Check e-mail.  Still no reply.  Consider phoning the hospital but decide to leave it until tomorrow. Very reasonable of me, I thought.

11:00    Through the baby monitor – “Mummyyyyyyyyyy”.  Half an hour isn’t enough for a nap, so I speak into the monitor, “Go to sleep!”.  And she does.  For another two hours!

11:10    Google “What to do all day when your toddler sleeps for hours”.  Limited resources available on this topic.  Eventually give up before I risk finding something I should be doing.

11:30    Settle down on the sofa with the puppy on my lap, and watch daytime TV – namely This Morning (got to love a bit of Phil and Holly) and Loose Women.  Check Facebook (ok, I don’t think this was the first time I did that, but you can make the assumption that I check  it every 5 minutes and save me writing every time down!).

13:00    A boring and uneventful day is broken up by a momentous happening – the postman arrives with mail!! Ooh yay! Excitement! Except for the fact that the mail seems to be a rock in an envelope and makes such a thud that it wakes the baby up.  Damned postman!  And to add insult to injury it is a Jojo Maman Bebe catalogue, sent by a company who clearly have no idea how skint this SAHM is!  

13:05    Discard catalogue in bin, and get baby up.  Change nappy (as with checking FB, please note this isn’t the first, or last, nappy change of the day).

What to make for lunch….

13:10   Decide to make omelette for lunch.  Whatever I make it will end up being a race against time to catch it before it hits the floor and the eagerly awaiting puppy.  I make sure she sees me cutting the cheese (“eeeese”, her favourite) and ham, (“am”, another favourite) in the vain hope that this might make the eating of the finished article more likely.  At the last moment before pouring the mixture into the frying pan I am struck with the notion that Freya may be more likely to eat the omelette if it is presented in a novel way.  Out come the pastry cutters; a star, a circle and a car.  She is sure to eat omelette if it comes in quirky shapes, right? Well, don’t bother trying it at home.  The mixture leaked out from underneath the cutters and by the time I had prized the cooked omelette out from the metal objects I was faced with nothing more than a heap of omelette.  I served up the omelette (“Urgh” <chuck>) with some sticks of red pepper (“Urgh” <chuck>), some cucumber slices (“Urgh” <chuck>),  and four little squares of cheese (“Mmmm eeeeese!”). On the third scream of “DOWN!!!” I took my little angel out of her highchair proud in the knowledge that after all that effort, the darling ate four fingernail-sized pieces of cheese.  Groan!

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14:00    Determined not to be put off by the epic fail of lunch, start to prepare vegetables for batch cooking of spaghetti bolognaise/cottage pie.  Cut vegetables with one leg firmly planted against the drawers to discourage attention-seeking daughter from removing all kitchen utensils and feeding them to the dog.

14:30    Chastise baby for pulling books from the bookcase and tearing yet another cover.  How is it that the bookcase has survived two children, and I now find myself blessed with a destroyer of one of my most prized possessions? Baby looks sorry, so I forgive her.

14:35    Chastise baby for pulling books from the bookcase and tearing yet another cover.  Replace books and repeat 58million times.

15:15    Bundle daughter into car and drive to school to pick up middle child.  He’s had a good day (“100%” – my son provides his evaluation of the school day in terms of percentages).  Remember one of my favourite movies – Rain Man.

15:40    Chatting with a mum outside the school gates ends in tears when Freya’s ‘unkind hands’ scratch the face of the little boy who is trying to be nice.  Make swift exit.  Must send mum a message when I get home to apologise for toddler’s assault.

15:55    “Can I play on Minecraft?” Most uttered sentence in middle child’s vocabulary.

16:00   Text mum to apologise for toddler’s assault.

16:30    Dish up lovingly prepared spaghetti bolognaise.  Wonder how much will end up on the floor. “Not again!” (Son’s affectionate response to being served pasta).  Surprised when youngest wolfs down an entire bowl of pasta and half a dozen pieces of bread.  Remember lunch.  Consider skipping lunch in future…

17:00    Clear away dishes.  Make tea for mother-in-law.  Sit and drink tea safe in the knowledge that there is now a second pair of adult hands in the house! Chastise baby for pulling books from the bookcase and tearing yet another cover….

17:30    Bath baby, pyjamas on, milk.

18:00    Put baby to bed.  Aaaaaand relax.

After that things are pretty easy.  Another hour before middle child is off to bed.  Dinner.  Eldest takes herself off to bed at some point during the evening.  Watch Cold Feet.  Go to bed.

And that’s about it.  In fairness, I try to avoid days like these, but with money fast running out I don’t have many options on rainy days.  Being a SAHM is a constant mix of emotions.  I’m lucky and glad, and lonely and sad all at once.  I would not change the opportunity I have to stay at home with my daughter, and I am lucky that she likes to have a long nap in the daytime, leaving me some free time to do whatever I choose.  Problem is, I get so bored of my own company whilst she is sleeping and it often makes me feel a bit miserable.  Right now, the house is silent but for the hum of the baby monitor beside me;  Freya’s nap was a little late today on account of us making it out of the house this morning for a visit to the local wildlife park.  In about 10 minutes I will have to wake her up to take her on the school run.

Today was a different kind of day, with a lovely (if wet) trip to Yorkshire Wildlife Park for a couple of hours this morning. The weather forecast was wrong though, and we got completely drenched.  Freya seemed freaked out by the rain dripping on her, and as a result I had to carry her around the entire Park! As an annual pass holder, entrance was free – result! Except for the amazing sweet shop on the way out where I spent more than the ticket price on Pick ‘n’ Mix and nougat! Doh!

With Autumn approaching, and Winter just around the corner, I need to have a serious think about how we are going to spend our days.  And I need something to pass the time whilst my daughter sleeps every day.  All suggestions welcome!

Virtual Company (or why I spend so much time on Social Media)

I am often criticised for how much time I spend on Social Media, Facebook mainly.  It’s like it should be something to be embarrassed or ashamed of, and I really ought to “get out more” or “get back to work” because apparently I have “too much time on [my] hands”.  But as I sit here in the second hour of my daughter’s three hour nap, with an empty laundry basket and a clean and tidy house, I can’t help but ask the question, “What else should I be doing?”  Today I’m completely stumped.  I am slowly developing cabin fever after four days at home with two unwell children (one went back to school today, but the other is on house arrest on account of some currently unconfirmed, but most likely contagious spots), and I have literally lost any motivation to get up off my backside and do something other than play 10:10 on my iPhone whilst watching Loose Women.  So I spend a large chunk of the day, whilst my little one is sleeping, with my phone in my hand and my butt firmly planted on the sofa, and that’s when I start to yearn for company and I’ll take whatever kind I can get, even the virtual kind.

You see, I’m a really sociable person.  I thrive in the company of other people (yes, the real-life human kind) and I LOVE to talk.  I have never been that good in my own company; I could never do a sponsored silence.  I’m one of those people who finds it difficult to stay quiet in situations when you really should.  I just about managed it in the Sistine Chapel (well, let’s face it, you’ve got to have some respect in there), but put me in a quiet place for too long and you’ll find me starting to fidget.  I’ve been known to giggle at a funeral (don’t judge me – it’s nerves, not disrespect).  

So what does someone like me do when I’ve got something to say, but there’s no-one here to listen?  Simple.  I tell the virtual world through Social Media.

Take yesterday for example.  My daughter had her phone confiscated at school and I received a call to tell me that it is the school’s policy for an adult to collect it.  I’ll not bore you with all the details, but let’s just say that the ridiculous policy really annoyed me – partly because I was home with two poorly children, partly because it meant my daughter would have to come home from school with no means of contacting me if she was unsafe. I was spitting feathers over the stupidity of the policy and needed to let it out.  Alas, there was no-one to let it out to, but if I didn’t get the chance to vent I would literally drive myself crazy with anger all day long.  When you let stuff like that out, you get the chance to have your feelings validated by others who share your views.  You also get the opportunity to  hear opposing views which provide some balance to your own take on the situation and help to calm things down.  So, in the absence of real-life human friends (not generally, just this week while we are on house arrest, lol!) I took to Facebook.  I immediately felt better after spilling out my rather long rant about the situation, and when the comments started to come in support of my rant, I felt better still.  So where’s the harm in that?  Or would it be preferable that this SAHM just kept her thoughts and feelings to herself in the silence of her own company until eventually drowning in a pit of misery….?

I also share a lot of pictures

Yes, I do.  And I’m sorry if you get bored of seeing pictures of my little girl clogging up your Facebook feed.  I don’t get the chance to share my little girl with many people (see above, on mostly being holed up indoors as she sleeps the day away) and Social Media is my way of sharing her with the world. And when I say ‘world’ I really mean it, because through our experiences with a rare childhood disease diagnosed last year, my daughter has connected us to people from across the globe.  Sharing her pictures has helped us to raise awareness of the disease, educate and support parents going through the same struggle, and inspire huge amounts of money for research, and because of that I will never be ashamed.  I have shared everything from shocking photographs of my daughter when she was sick (not for sympathy or self-gratification, but to show people just how awful the disease can be for a child) to beautifully filtered shots of her sniffing a daisy.  Those pictures show how far she has come, and I am grateful to have her here with us every day.  So whether it be Facebook, Instagram or Twitter, I am going to keep on sharing the photos that make me cry and those that make me smile.   I make no apology for not featuring as many pictures of the other two kids – it isn’t because I love them any less, it’s just that they’re at school all day and when they are around there is very little time for taking pictures!  Warning: you are likely to see as many pictures of the puppy as you do of my little one.

I go through periods of celebrity-hounding

I am not ashamed to admit it! If you follow @freya_story at all you will see that I go through phases of hammering different celebrities with requests to share my tweets aimed at broadening awareness of Kawasaki Disease.  I’ve had some success – Anthony Minghella, Miriam Stoppard, David Bull, Fay Ripley, Chloe Sims – but not even a fraction of the success I hope for.  I am targeted in my approach, choosing to follow people with medical links or with children of their own and might therefore empathise with our situation enough to share.  It’s not about the personal pat on the back, feeling like you have somehow connected with fame, it’s about audience reach.  If I could stand on a mountain with a megaphone to ensure that everyone in the world had heard of the disease, I would.  I don’t want another child to suffer because of ignorance.

I spend a lot of time in Facebook Group discussions

I follow a lot of Facebook groups connected with Freya’s illness.  Through those groups I have learned a lot, gained a lot of support, and been in a position to provide information and support to other parents in our position.  I have developed relationships with people with a common interest, who truly understand the pain my family has felt in the last year. I have built a strong network of support for my daughter – support that has helped me through the experience.  It is a good feeling knowing that there are so many people that care about her and are interested in her journey.

There was a time when I was active in all the groups pretty much 24/7.  It was a blessing and a curse.  My FB newsfeed was constantly streaming with stories about a new diagnosis or a new fear.  For a little while, when I was receiving counselling, I came away from all the groups.  Not because I didn’t care, but because I needed to focus on getting stronger which was difficult when I was constantly surrounded by sadness.  Now I am following those groups again (I never left them, just reduced their appearance in my feed) I feel more able to provide support where I think it is helpful.  I no longer feel the need to put my twopenneth into every post, choosing rather to scan the comments to make sure the questions or concerns have been answered.  If someone else has shared my thoughts, then that’s good enough for me.

I know that my involvement in these groups has helped people, and as long as I can be useful I will continue to be involved.  The balance that I have now is much more healthy, although clearly this week I have had a lot more time on my hands for such pursuits!

I get a lot of messages

Because I reached out to share Freya’s Story, we have become connected to the world of Kawasaki Disease.  I have received messages from many people across the world, from Hong Kong to Spain, Australia, the US and Pakistan.  Mainly mothers who have wanted to share their experiences, send good wishes for Freya, or who just need someone who understands to listen to their fears.  I am one of those people who believes that whilst I have the ability to help, I have the will.  I could not turn my back on someone who could benefit from talking to me, no matter how little I might help in the scheme of things.  And I’ve already told you, I LOVE to talk, so I guess it’s a win-win!

I blog

I don’t write so much these days, and I’m still working out what it is that I want to do  with that going forward.  My blog began as Bluemama – somewhere to share honest, candid experiences about motherhood.  With Freya becoming sick shortly after she was born, the blog very soon became focussed on her.  If you have followed Freya’s Story you will know that it started with a journal that I kept during the 6 weeks that she spent in hospital in the Summer of 2015, and I have continued to post updates, share information and occasionally blog about our experiences with the disease.  Blogs relating to Kawasaki Disease are always tagged as Freya’s Story and are shared on the FS Facebook page (www.facebook.com/freyasstory) and/or Twitter (@freya_story).  Mostly everything else is shared on the Bluemama page, which is the least active of the accounts.  Random stuff, like when I get the urge to write a poem, just stays on here.

I love writing – it’s another way for me to get all the thoughts and feelings out of my head. It’s great when someone shares a post, or is touched enough by it to make a comment, but mostly it just feels good to get it out.

And that’s about it.  Yes, I do spend a lot of time looking at my phone; enough to worry sometimes about how much damage that might be doing to my brain! But it’s rarely in some idle pursuit (with the exception of sleepless nights when I get a bit obsessed with 10:10!)  When the baby’s spots have all cleared up, no doubt I will make it back out into the outside world.  But while she is sleeping from 11am until 2pm every day, and the washing and ironing is all done, and I’m sitting in a clean and tidy house (and even if none of that were true) I am going to wholeheartedly and unapologetically embrace my virtual friends 🙂

The World keeps Turning

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

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

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

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

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

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Memories of another you

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

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

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

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

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

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

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

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

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

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

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

 

I have this noisy baby…

She likes to scream!  And I mean, SCREAM!  A high-pitched, piercing scream that drives right through to your bones.  It makes me wince, and is a source of anxiety for me.  It has me a bit stumped if I’m honest.  Up to now, I’ve been able to communicate verbally and non-verbally with my 11-month old (she knows sign language for ‘milk’, and has made up her own signs for most other things).  When she was a tiny baby, I even worked out the language of her cries, and I could tell the difference between the sound she made when she cried for food to any other cry she made.  But I haven’t quite managed to tune into the scream, perhaps because I am trying too hard to tune out..?

I might be getting close though.  It is somewhere in between frustration and attention-seeking I think.  It happens mostly when she is restricted; car seat, pram, highchair.  Add any of those situations to occasions when she doesn’t have my full, undivided attention, and you can multiply the decibels tenfold.  So, you can imagine how I feel if I’ve driven into town (car seat), walked to a coffee shop (pram) and sat down (highchair) for coffee with a friend (divided attention)!  I am living off my nerves!  That said, I keep telling myself that this is temporary.  She will soon learn to communicate more effectively, and the need to scream will lessen.  And as she starts to settle down in this new and amazing world she has discovered at speed as she commando-crawls across my wooden floors, I will be able to allow her more freedom.  Soon she might be allowed to sit on a normal chair, stand, walk a little, so as not to feel imprisoned by a 3-point harness.  Until then, I have to accept it, and perhaps try and work out how to help her break the habit. That’s the hard part.

Although, saying that, it’s not the hardest part.  Oh no, the hardest part is trying to deal with the noise that my child has decided best fits to articulate her thoughts when surrounded by selfish, insensitive, intolerant human beings who either never had children of their own, had perfect children, or who can’t remember what having small children is like.  Yes, that is the hardest part.

I’d like to address the above described human beings, if I may be so bold.  Perhaps you will need to share this blog post on social media to make sure it reaches the right audience; if you’re reading my blog I am most sure you would not be one of those people.  So here goes…

Dear Intolerant,

I know my daughter’s screaming is loud, and intrusive, and downright irritating.  I feel it too.  Except I feel it in a way that you will never come close to, because she is mine.  I carried her in my body for 9 months, and I went through 3-days of induced labour hell to bring her into this world.  When I beheld that little face staring up at me from the hospital bed (yes, I was on all fours like some kind of wild beast!), I had no idea that she would develop this rather annoying habit.  I could do without it too.  Don’t you think I would prefer to have one of those babies who just sits in their pram without making a sound so that I can engage in good old fashioned chatter with one of my girlfriends over a caramel latte?  Of course I do! Don’t you think that I don’t wish I wasn’t such a prig about dummies (not that my babies have ever been able to take to one when I’ve tried)?    

Do you think I can’t hear it? That every screech doesn’t churn me up so much that inside I too am screaming? Do you know the embarrassment I feel every time that sound leaves her tiny lips, or how I squirm in my seat at the thought that she is spoiling the experience for everyone else?  Well, trust me, I hear it. And I feel it.  And it makes me want to run.  But let me tell you this; seeing the looks on your faces, watching you put your fingers to your ears, seeing your shoulders scrunch up with tension with each shrill squeak, feeling your head snap in our direction and hearing you mutter “Oh for goodness sake!”, or “What a naughty thing!” to your friends not only makes me want to run, but makes me want to run and hide and never come out again.  

When you look at me with irritation, and not compassion.  When you say cruel things about my baby, without understanding.  Those things hurt me to my core.  I can’t expect you to love my little girl like I do, but know how much it hurts to think that others are thinking ill of her because she has learned to vocalise her frustration.  She is an 11-month old baby. She loves to crawl.  She loves to sit surrounded by bright and noisy plastic things that make her smile. She loves the challenge of that piece of furniture that looms like Everest, yet she can conquer it in one pull on those little arms of hers; the pride in her face when she makes it to the summit is something us grown ups have long since forgotten how to show.  She doesn’t particularly like being cooped up in a pram, strapped in because the floor isn’t safe or clean enough for her to roam.  I hear your unuttered thoughts, “Take her to a baby group then, and not our [insert favourite venue]” Oh, how I would love the normalcy of a playgroup right now. Where I could sip a cup of tea with likeminded mums whilst our children play happily in the soft play area.  Except I can’t.  I can’t because my child takes a drug that puts her at risk of serious illness (perhaps even death) if she comes into contact with certain childhood illnesses, so until her immune system is able to accept the relevant vaccines, a play area is the last place you will find us.  

“So, stay at home then, if that’s where she is happy.” Yes! Yes! That’s the answer. You’re quite right of course – she is happiest when at home with her toys and her freedom.  But what about me?  What about my needs?  Most days I do exactly that; stay home and entertain my little girl, or stay close by while she entertains herself.  It’s lonely.  Days go by when the only adult interaction I have had has been via Facebook.  So when that invite for a coffee comes in, with the opportunity to get out in the fresh air and meet another human being and talk, of course I am going to take it.  It is th antidote to my depression.

“Plan your time better! Go out when she naps!” Oh yes, another brilliant suggestion.  Except that I have this clockwork baby, that since spending 6 weeks laid on her back in a hospital cot has slept from 6pm to 8am without a murmur.  The trade off being that she is awake and switched on for pretty much all of the daytime hours.  Once there was a chance that she wouldn’t be here at all, so I’m happy to take the trade.

You see, this baby who looks like butter wouldn’t melt and screams like a fiend, has been through more in her little life than I have had to contend with in my 41 years.  And she has achieved more than most of us will in a lifetime.  She is an inspiration, and she is my little miracle.  And me?  Well, I suffer with anxiety on account of having been through the trauma of seeing my 7-week old baby get sicker and sicker until eventually a broken heart confirmed she had been struck by a rare disease with a penchant for the coronaries.  I haven’t dealt with that yet; these things take time.  But I am dealing with it, and for all you know that coffee I am drinking is the first I’ve had all day because that morning I went to my PTSD counselling straight after dropping the older kids at school.  

I remember the silence of the first few weeks of my daughter’s illness.  It’s a silence that will haunt me forever.  When I feel irritation at that scream, I feel ashamed for disliking a single bit of my little girl.  Sadly, the anxiety is making it difficult for me to see through the scream to the child, to understand what she needs.  But I cannot hide us away from the world.  She is bright as a button.  She has got things worked out that a child her age shouldn’t be able to figure just yet! So of course she is going to scream when I try to stifle her need to move, explore, discover and learn.  

I am not asking you not to feel annoyed; I have no control over that.  I’m just asking that you search deep inside for some compassion.  You have no idea what journey a person has been on.  You have no idea what a person is struggling with right now.  I have no idea what you might be struggling with right now either, which is why I will always look at you with kindness and a smile.  If you knew that I go home and cry after an encounter with someone like you, would you act differently next time…?

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A Recipe for Disaster

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

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

Sometimes, mental illness looks like this…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Follow me on Facebook at www.facebook.com/bluemamablog and if you are interested in learning more about Freya’s Story and Kawasaki Disease, you can visit www.facebook.com/freyasstory 🙂

 

 

An Exercise in Mindfulness

mindfulness
ˈmʌɪn(d)f(ʊ)lnəs/
noun
  1.  the quality or state of being conscious or aware of something.
  2. 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…Unknown.jpg…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.

Angels walk among us…

…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.

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The Maternity Thief

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.

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