Best before 31st May…

Two years.  Don’t they go by in a blink.  It is hard to believe that two whole years have passed since that day in May 2015 that we will never forget.  Harder to believe that we are living a life more ‘normal’ than we ever could have imagined possible back then.  Back then it felt as though the bottom had fallen out of my world, and I was shrouded by a blackness that I thought would envelop me for ever. Today, it’s mostly sunny with a tiny chance of rain.  Today life is about as normal as it is ever going to get.  The last two years have been two of the most extraordinary of my entire life.  And you, my dearest Freya, my little “Peanut”, were the single most extraordinary thing of all.  Meeting you was like walking into the sun, and in spite of everything you went through, we went through, the clouds were never allowed to cast too large a shadow because your light burned through them like a flame through silk.

The past few weeks have allowed a melancholy feeling to settle around my shoulders like a familiar, almost comfortable wrap; two hands that placed themselves upon my shoulders, whilst a low voice whispered, “Remember me?”  It was a rhetorical question, of course I remember her.  She is sorrow, and fear, and dread, and grief.  I didn’t consciously awaken her, but the date was drawing near and I guess my subconscious had figured it out before I did.  I had been cleaning out the kitchen cupboards, like you do every now and again when you realise the dust is beginning to settle on the shelves!  I emptied the bottom shelf of one of the cupboards – that’s where we keep all the everyday medicines.  It’s where we keep your medicine, in a little pink sandwich box with Barbie on the lid.  I take that box out of that cupboard every single day to prepare your aspirin. Yet on this day, when I placed the box back in the cupboard I realised that it had gone back in a different way to normal.  I realised because there staring back at me, was the hospital label – we had used that box to store your medicines when you were in the Children’s Hospital.  And there I was, right back in that cubicle behind the nurse’s station, and you were by my side, in your cot, all wires and bandages and looking like someone else’s baby.  Your Auntie popped in just at that moment and for a while I was somewhere else.  When she snapped me out of it, tears came out of nowhere and I shrugged it off as ‘a moment’. What it was, was a flashback.  The first I have had since I was successfully treated for PTSD last year.  Luckily it was short-lived, and I was nothing more than a little shaken afterwards.  I’ve not had one since, though the sound of that musical seahorse going off the other day threatened to bring another.  Instead I considered how the fact that you were playing with it was a good sign that you do not remember like I do.  That is indeed a blessing.

Anyway, enough of that miserable talk! I haven’t written to you in so long, and I have so much to tell you! I want to show you how far we’ve come in the last two years, and let you know how remarkable your life has been so far.  On the 28th May last year, I wrote a blog which I gave the rather despondent title of “Stealing Joy”.  You see, that is how I felt back then.  Kawasaki Disease had come into our lives and stolen everything that was meant to be joyful away from us.  Here is some of what I wrote:

“I want to allow myself to believe all the motivational clichés about things happening for a reason, about how far we have come, about how lucky we are to have Freya here in our lives and how we should count our blessings.  But today that all feels like bullshit.  Today I find myself mourning for normal…Today marks the anniversary of the last day we knew what normal was.  I wish that day were Groundhog Day and we could live it over and over and over so that the 31st May would never come.

I don’t want to wallow in the misery of the last year, believe me. I want to be thankful for what we have, and cherish every moment.  I want to believe that this happened to us for a reason, that we will all be better people for it, that I will look back on all this one day and laugh at how wrapped up I was.  I will allow that to come…”

And what I want to tell you now, sweetheart, is that it did come.  Normal came.  And with it came joy.

April 2016 marked the end of my maternity leave, but I wasn’t ready to return to work for many reasons.  For one, there were still issues with your immunity, and the risks connected to you being exposed to chicken pox were too great for me to consider placing you in any kind of childcare.  Heart-wise things were pretty unstable, with lots of unknowns, and much deliberation about whether we should allow the hospital to plough ahead with a procedure that I would prefer to avoid.  At that time the uncertainty filled me with dread and I was struggling to deal with what life had thrown at us.  I was about to receive treatment for PTSD (post-traumatic stress disorder), I had hit a very low point in my life where I felt let down by many people in it, and life itself.  I felt very alone, except for you.  You were the only one who could make me smile.  At that time I was sliding down walls in hospital corridors when an anxiety attack took hold, or crying alone in the early hours of the morning because there was nobody to share my grief or fear with.  When my employer agreed to allow me to take a career break to get back the time we lost, it was like I had been given a new beginning.  I was paired with the most amazing counsellor who helped me deal with what happened to you, and then some. And I began to believe in life again.

Don’t get me wrong, I don’t think I will ever stop being afraid of what lies around the corner.  And I am more afraid of death now than I ever was before.  I think about it a lot, almost daily.  Not in a macabre way, just a reminder that tomorrow isn’t promised.  Sometimes I feel deep sadness at the thought that I might not get to meet your children, my grandchildren.  I just have to try to stay young, so I might get that chance.  I feel a dreadful sorrow when I think about my own mortality.  I am so afraid to leave here, leave this place and my family.  I cannot bear the thought of being parted from it.  But then I guess it is our fear of death that keeps us alive.  If there is one thing I learned from my counselling it is this – that no amount of worrying about the future is going to change it.  I have learned to live in the moment (mostly).  Sometimes the resolve dissolves and I find myself fearful, especially as the seasons change and we head towards the Autumn, and the angiogram that I have such an issue with.   But mostly, we live in the now.  And since I went back to work full-time in April this year, there really isn’t much time to think any further forward than that!

When I was approaching my return to work, I became very sad.  The thought of not spending every day with you made my heart-break.  I wasn’t worried for you – I knew you would adapt and that it was time for you to experience new things and to make new friends.  I was worried for me though.  I honestly did not know how I was going to get through it.  We ended the two-year break with a fantastic holiday in Mexico.  We were finally able to fly, having managed to get you caught up on all the routine vaccinations you missed because you were so young when you got sick.  I had some contemplative moments on that holiday – each day that passed took me another day closer to leaving you. But I told myself that rather than think of what I was losing, I should think of what I have gained.  I was given the gift of time; another year to spend with you before I had to return to a ‘normal’ I never thought we would see.   A year to fill with a joy capable of erasing a year of misery.  And I have to tell you, that despite everything, these last two years with you have been extraordinary, because of who you are, and what you have achieved, and what you have done for me.  I am a better person because of you.

And you? Well, what about you?! Let me tell you what you have seen in this last year.  You’ve seen animals and sea-life, you’ve swam in pools and an ocean.  You’ve visited the home of a literary great, and learned where your name came from, my Freya Ellis Belle.  You have made firm friends.  You’ve danced and bounced, and you know your good toes from your naughty toes (thank you Mrs Riley!).  You have inspired a donation of £75,000 from a stranger across the other side of the world, and raised £8,000 from your 1st birthday party.  You’ve sat upon the knee of world leading Kawasaki Disease specialist, Professor Jane Burns.  You’ve been to Christmas markets, and Summer Fayres. You were awarded special recognition for Triumph Over Adversity at the Doncaster Free Press Awards. You have raised awareness of this disease, with tens of thousands of people having seen your face.  Last month over 5,000 people viewed a video of you on Facebook, raising even more awareness.  You have been in Newspapers and on ITV News.  You inspired me to give blood, and register for stem cell donation.  And you inspired me to run so that just this weekend I raised nearly £3,000 running 10km in the Great Manchester Run!  You, or Kawasaki Disease, or a combination of the two have made me stronger, wiser, more compassionate, kinder, more alive than I ever was before, and for that I am thankful.

On the train home from Manchester this weekend, I opened my finisher’s pack to have a look at what was inside.  My runner’s medal, a sick bag (I’ll tell you about that one day), some leaflets, a bar of chocolate.  I look at the wrapper to see what kind of chocolate it was and my eye was drawn to the best before date:

Best before 31st May.  

Perhaps you were best before then.  You were best in terms of being undamaged, your little heart was in tact and you were perfect.  But actually, you are so much bigger than the 7 weeks before you became sick.  You are more than Kawasaki Disease, more than a broken heart.  And I am more than a mum.  I am your mum, and that makes me a very lucky woman indeed.  I became my best after you.

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Proving them wrong..?

So today was Freya’s first cardiology follow up of 2017.  In case you don’t remember where we are at from the last visit, I’ll quickly bring you up to speed.  We had a cardiology follow up in September 2016 where I questioned the Cardiologist’s desire to carry our a cardiac catheter angiogram.  At that appointment I was told that I needed to trust the doctor or she would have no choice but to refer Freya to another hospital.  However, shortly after the appointment I received a letter which allayed some of my fears, and so I made an appointment with the Cardiac Intervention team to discuss the procedure.  At that appointment I was made to feel more at ease about the procedure itself, however the doctor said he was not happy to perform it on Freya given she was still so young, and asymptomatic.  I left it with the two of them to argue the case, and eventually it was decided that whilst there was a degree of anxiety about the speed of the remodelling of Freya’s arteries, it was in Freya’s interests to wait a while longer, and she was placed on the waiting list to undergo the procedure in the Autumn of this year (2017).  That was good news for me, as it seemed like a good compromise, although I then felt quite nervous about what could happen in the interim, and gave my consent to wait as long as Freya was reviewed regularly in between.

I believe the idea was for Freya to be seen in 6-months (from the last appointment), however I was keen to evaluate Freya’s current situation before we go to Mexico, so her appointment was made slightly sooner than planned.  And that brings us to today.

Now, at Freya’s last appointment they were unable to obtain an ECG reading as Freya was hysterical and kept pulling the electrodes off (“stickies” as she calls them).  Even when we managed to get her to lay still, she was just too distressed to get a proper reading.  Since then she has developed an acute fear of stickers – all kinds! She wouldn’t even allow us to go near her with a sticker, not even to stick one on her clothes.  So we’ve been working really hard trying to beat that phobia, and we had a breakthrough last week after a visit to Cannon Hall Farm.  I’ve spent the last week chatting to Freya about the hospital visit, talking about the ‘stickies’, where they’ll put them and that she has to be brave and not wriggle or cry.  On the way to the hospital this afternoon she told me and her Dad that she liked hospitals, and chatted away about the stickies and how brave she was going to be (I say ‘chatted’ but it was more like a mantra – “I like hospital, stickies on me, my legs, my tummy, me not cry, me blave.”)  I was hopeful that today’s appointment would be more productive.

When we arrived we were sent straight for an ECG.  Sitting in the corridor, one of the nurses that had looked after Freya before came and had a chat with us.  She made a fuss of Freya, and after a while asked if she would like her to do her ECG for her.  Freya said she did, so the ‘nurse’ (not sure what her actual job title is) went and asked the other staff if she could do this one as Freya is very nervous and she knew how to handle her.  She decided to place the electrodes on her arms and legs only, leaving her torso free.  Despite her best efforts, Freya still screamed at them to stop.  I managed to calm her down (by telling her that Paw Patrol would be on the ECG screen any minute!) for just long enough to get a reading, although I gather that it wasn’t a full reading with it only being on her limbs.  Freya then refused to be weighed or measured so we had to leave that part too.

We went into the Cardiologists room almost straight away, and she asked how Freya had been.  We updated her on the chicken pox vaccinations, which are now complete.  The episodes of single fever spikes in the early hours of the mornings (can be associated with angina) had ceased, and Freya was no longer having periods of suddenly lying still on the ground, so it must have just been a phase she was going through.  The doctor tried to do an echocardiogram but Freya resisted (for the first time so far on this journey), and the Cardiologist wasn’t able to keep her still for long enough to get a look at her coronary arteries, let alone measure them.  She kept fighting to get away, shouting “Stop it, stop it, please help me!” which was so upsetting to watch.  She did however get a look at the heart chamber and could see that the heart was functioning normally – this was also confirmed by the ECG results, and to be fair, heart function has never been a concern in Freya’s case. As long as Freya’s blood can keep flowing nicely through the arteries everyone is happy, and that’s what the daily dose of aspirin is there for.

I must admit I felt more than a little uneasy about not being able to get a close look at Freya’s arteries.  I mean, it’s the arteries that are the issue and I really wanted to be sure that there had been no further narrowing from her last appointment.  The doctor didn’t seem to be too concerned however so we sat down for Q&A before setting off home.

So, what did we learn? I am going to bullet point it to make some sense of it all:

  • The Cardiologist referred to the latest paper on the long-term treatment guidelines for Kawasaki Disease, and said that what she had read had given her some reassurance that the speed of remodelling in Freya’s case is not as unusual as she first thought.  I think she may have been referring to the latest JACC review which I actually sent her after our last appointment (I can forward it to anyone who would like it – you can contact me through the awareness page www.facebook.com/freyasstory).  Her initial anxiety was that with Freya’s aneurysms remodelling so fast it might be a sign of stenosis occurring.  However having read the paper, she established that actually it is common for remodelling to occur within the first 2 years, particularly in cases where children are treated more aggressively than the standard treatment, as in Freya’s case.
  • Freya was treated with the standard IVIG and high-dose aspirin at the time of diagnosis, with the addition of intravenous steroids.  Resistant to two doses of IVIG she was then given another drug called Infliximab.  This is not widely given in the UK, although there is a strong case for it’s use, particularly in severe or high-risk cases.  As a very young baby, Freya was in the high-risk category for heart damage, and also presented with a severe case of the disease.  The hospital had to apply to NHS England for permission to administer Infliximab to Freya – I still have a copy of the letter granting that permission.  Freya’s Cardiologist believes that the Infliximab was instrumental in Freya’s cardiac recovery from the disease and I have to say that I agree.  I think Infliximab saved Freya’s life.
  • I asked about our impending long-haul flight, and we were reassured that there should be no concern.  We should make sure we don’t forget Freya’s aspirin, and should keep her hydrated on the flight, but that was the only caution. Oh, that and that we had to remember to send the doctor a postcard 😉
  • I also asked about cholesterol testing, as there has been some information circulated about undergoing the test one year post-diagnosis.  We were advised that it may be standard in cases fitting the ‘normal’ age bracket for KD, but that Freya is too young for a low-cholesterol diet and would not be treated with statins for high cholesterol as her brain is still developing.  I guess that’s where we have to trust the individualisation of our children’s cases compared to the standard protocols.
  • I have also read that aspirin is best taken at night to reduce the risk of cardiac events during the nighttime hours.  Freya has always had hers in the morning, but with her soon going to be with a childminder, I wanted to switch it so I can give it to her before bed.  This is not a problem, and the anti-platelet effects of the drug will remain long enough for the longer delay between doses when I make the switch.
  • The last thing I asked was in relation to specific care plans/patient specific protocols required for the childminder, for example.  The doctor said that as long as the childminder knew what to look out for – becoming pale, sweating and quiet – there were no other ‘special’ arrangements to be made.  I expressed my concern that in the event of a potential cardiac issue, were an ambulance called it would take Freya to our local hospital which is not a PCI centre.  The doctor is going to provide me with a letter outlining the care Freya should receive in such an event, and advised that in coronary cases, Freya would be better transported to a local hospital for immediate care than risk the journey to Leeds.  Once stabilised, she could be transferred by the EMBRACE medical transport service to the cardiac unit if necessary.

We agreed that Freya will be seen again in 6-months, and that although they feel less anxious about the progress so far, they will still carry out the angiogram later this year.  I agree that it is prudent to take a closer look to be sure we know the full picture.  I also explained that whilst in the past I have questioned the steps they wanted to take, it was never from a place of distrust but only from making informed choices about what was best for Freya.  Even though I was the one who wanted to delay the procedure, I have still had to live with the fear that I may have made the wrong choice, and something terrible could happen without warning.  Overall it was a very positive visit today.

But (yep, there’s always a but with me isn’t there!), I can’t help but still feel a little uneasy that what was decided today was not based on what we could actually see (with the exception of the heart function being ok).  For all I know, Freya’s arteries could have remodelled even more than the last appointment and now be heading dangerously towards narrowing. I guess that is a possibility, but we have made decisions today based on probability.  The doctor thinks it is improbable that Freya is in any real or immediate danger.  Hopefully the aggressive treatment Freya received in the acute stages of the disease have set her up for a bright future.  There are still many unknowns, some of which we won’t get answers to until much later in Freya’s life.  For now, perhaps it is time to have a little faith

For some reason as we reached the exit level of the hospital, we turned the wrong way out of the lifts.  It wasn’t a big problem as you can get out either way.  This way, though, took us past the Brotherton Wing – the old part of the hospital which houses the parent accommodation where I had to stay, alone and far away from Freya when she was being taken care of in the cardiac high dependency unit.  As I walked past the entrance to the old wing, I couldn’t help but feel a deep sense of sadness at the memory.  And then I remember the chapel that I used to pass on that long, lonely walk to my room every night when I couldn’t keep my eyes open any longer.  I don’t consider myself a religious person, but not wanting to leave anything to chance, I had entered the chapel the day after being told there was a chance we could lose our daughter.  It as the day Freya was taken  back to the Children’s Hospital, and as a parting gesture I had taken a slip of paper from the table inside the doorway of the chapel and wrote on it, “Dear God, prove them wrong.”    I am beginning to think He might just have been listening.

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Return to Cannon Hall Farm

Dear Freya

I must admit the title of this blog post made me smile a little!  Sounds like one of those old stories I read when I was a child, usually involving four or five intrepid children and a dog off on some treacherous adventure.  Today was not quite so dramatic as any of those stories, but it was an adventure for us nonetheless, and I must start by saying thank you for making today wonderful, when it might have been otherwise.

Today we visited a local visitor attraction, Cannon Hall Farm.  It is about a 45-minute drive from home, in Barnsley, South Yorkshire, and is home to lots of animals that you can get close to. At this time of year, in the Spring, the farm gives birth to new life in the form of tiny piglets and little lambs and if you are lucky with the timing you can get to hold a guinea pig and stroke a fluffy rabbit too.  We arrived just after 11am, and you were excited about seeing the ‘aminals’ as soon as we got out of the car.  I’ve visited many times over the years, but this was the first time you were seeing it with your eyes, and it was magical.  I love seeing life through a child’s eyes.  Everything is new and wondrous and those big blue eyes sparkled with excitement at every new thing that you encountered.

We paid our £5 entry – there’s a special offer on at the moment and you were free anyway, so it was most definitely good value for money!  We bought a bag of animal feed too, so you could interact with the animals.  We were presented with stickers to wear to show that we had paid our way, but even though I confidently placed mine on my coat, you were reluctant to allow me to do the same with yours.  See, you have developed this fear of stickers, presumably a mixture of ECG memories and the steady flow of sticker offerings at every medical appointment, but whatever it is those stickers cause you to recoil, and back away like I have some kind of venomous creature in my hands.  I managed to convince you within about half an hour that you had to wear your sticker if you wanted to feed the animals – you may only be 22 months old, but you are  bright as a button and you were really keen to send the food down those chutes.  I took the small victory, and punched the air in my mind.

You were mesmerised by the Meerkats and ran up and down the enclosure as they chased you from the other side of the glass.  Seems they sensed your fun and wanted to join in.  And then we went on to the breeding barns, led by a very eager you running off ahead, giggling “What’s in there?!” as you ran. You adored the pigs and their piglets, and toddled excitedly from barn to barn shouting “Bye bye!” to the animals as we left them.  You weren’t too keen on the tractor cleaning out one of the stalls, but we moved on quickly enough for you to forget about the monstrous roar of it’s engine as it shovelled away all the muck and straw.  You gambled on the blue ferret to win the race, but sadly it had no intention of leaving its starting block and lay there curled up in the warm Spring sunshine, along with green and yellow, while red took the title with ease.  We walked past the birds on our way to the sheep enclosure, where you delighted in the sounds of the lambs, remarkably like new born babies crying for their mummies, until one of the ewes decided to utter a deep, groaning “baaaa” and you ran screaming “Help me, help me mummy” until I scooped you up and headed back towards the centre of the farm!  As we passed the birds again on the way back, I saw the network of tunnels in the children’s play area out of the corner of my eye.  Silly really, that it was the sight of those tunnels that drew an inward gasp and brought a tear to my eye, but I quickly brushed the thought away as we headed back to see the meerkats again – they would bring back the smile in an instant.

We had pretty much exhausted your attention span, and the use of your little legs, by around 1pm so we popped into the restaurant for some lunch.  I ordered a sandwich and chips for us to share and we took a seat in the corner where I could pen you in at the end of a row of benches!  You like to wander, and I needed you to stay put and eat some dinner.  On the table next to us were an elderly ‘couple’ (I could tell by their conversation that they were not married, and later found out that they were both widowed friends).  Both the lady and the gentleman were showing an interest in you.  I mean, at risk of sounding sycophantic, you do draw attention to yourself. Those huge ocean blue eyes, and your little curls, along with this way that you carry yourself that defies your 22-months on this Earth, seem to gather interest everywhere we go.  You are quite simply captivating.  I don’t know what it is that you have, but I guess although it sounds like far too mature a word to use to describe you, I would say that what you have is charisma.  Oodles and oodles of charisma.  Whilst I am most definitely your number one fan, you seem to be gathering a following wherever you go.

Anyway, to get back to the point of our ‘adventure’.  After a number of musings and comments from the couple next to me, the gentleman remarked at how clever you are – he had been observing you when you were let down from the table and noticed how considered every move you made was.  He said you seemed to be well aware of everything and everyone around you, and he said “She’ll go far that one.” He said you seem ‘lively’ and I laughed and said “Oh yes! She keeps me on my toes!” and the lady replied, “Yes, but better to have them like that,  than in hospital poorly.”  I could have brushed over that comment, but instead I remarked that you had indeed had your fair share of that, and of course this sparked some interest in your situation.  “In fact, the last time we were here was the day before she became sick.”

And there it was; the reason for our visit.  We have not been back to Cannon Hall Farm since that day before our lives were changed forever.  Saturday 30th May 2015; you were 7 weeks old and it was our first outing as a family.  I don’t know why we haven’t returned to visit the farm really.  There is absolutely no suggestion that your illness was linked to the farm, and whilst the cause is unknown so it could never be completely ruled out, it is more likely to be just a coincidence and bad timing.  I think I just didn’t want to undo the memory of that perfect moment in our history.  I mentioned earlier that the sight of those tunnels was the only thing that triggered an emotional response (though I had been working hard to suppress the emotions I could feel crushing my chest all the morning).  I guess it’s because we spent a while there whilst your brother and sister got themselves lost in the maze of tunnels.  I think I fed you as we sat on a bench and watched the children playing in the early Summer sunshine, and congratulated myself on this perfect life we had created.  And up to that moment, Peanut, it really had been perfect.  You were perfect.

That day in 2015 at Cannon Hall Farm marked the end of perfect for us, or so it seemed.  It feels so unfair that things changed so early on in your life, before we had a chance to make any more perfect memories.  I guess I’ve wanted to preserve the memory of that day, hold on to the precious moment that is captured in sepia images in my mind.  It has been a huge flag on a timeline, marking the change from perfection to imperfection, and giving me something to grieve, to pine for.  But do you want to know something, Freya? What I realised today is that there was really no need for me to hold that moment on a pedestal as something to be quite so treasured.  Because, with the exception of 6 long weeks in a hospital cubicle and all the trauma of 2015, every single moment with you is something to be treasured.  Yes, I felt sadness wash over me when I remembered how carefree and wonderful our lives seemed on that day at the farm, but when I sat and thought about it I realised that without what happened to you, without Kawasaki Disease and it’s gifts (yes, you detect sarcasm) then we wouldn’t have experienced the wonder of today.  Without Kawasaki Disease, I would have returned to work after a year on maternity leave, and our moments would have been reduced to the same precious hours on weekends that your siblings were lucky to grab in between the mountains of washing and ironing.  Because of Kawasaki Disease, you now have a broken heart and an uncertain future.  But because of Kawasaki Disease, I now have a heart that is capable of feeling more than it ever had before.  It showed me a glimpse of what it might feel to lose someone I loved, and made sure that I will never take you, or anyone else I love, for granted.

Of course, I wish that we had never been introduced to this insidious disease.  I wish that you hadn’t been so little and therefore susceptible to the very worst that the disease had to offer.  I wish we didn’t have to face a future with hope, but no guarantees.  Our lives would have been so different without it, but I am not sure if our lives would have been better.  Is that wrong? I don’t know.  I just know that what happened to you in 2015 created an opportunity for me to be a better version of the me I had once been.

Today, as I saw the wave of sadness cross that lady’s eyes when I told her that you had a damaged heart, it struck me at how terribly unfortunate your circumstances must seem to someone on the outside, even if, as the lady said, “You wouldn’t know to look at her!”  But to us, this is just our normal.  Today I realised that what we have is not an altered you or a changed you.  The you we had for 7 weeks at the start of your life with us was wonderful, but it was not a patch on what was yet to come.  You have given us 22 months of extraordinary, and I cannot even begin to put into words how grateful I am to you for today, and all the days just like it, both in our past and in our future.

Whatever it is that radiates from within your little body, it takes my breath away and  I love you with all my heart.

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.

The Loneliness of Motherhood

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

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

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

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

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

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

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

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

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

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

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

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