Wednesday, 25 April 2018

Reflections on appearance

It has been a long time since I last wrote here.  It's not for lack of thought, or feeling.  It's certainly not for absence of material.   There is a large part of me that finds talking about Freddie, my loss, my grief and the life which has followed, quite difficult.  Vulnerability continues to be an unwelcome guest at my table.  There is a huge back story to this and it's one which I find equally difficult to talk about, because I have a duty to protect those I love.  In telling my story publicly, it informs them of things which may cause them anguish.  The rest of my difficulties in talking about Freddie come from the work I have done for nearly twenty years - supporting other people, and my hesitance to trust and feel comfortable with how people choose to perceive me.   I have great difficulty in confidence, in allowing people their judgements and in letting go of that worry myself.  And so when I recently posted an Instagram photo, explaining what a wonderful time I had, one wild and independent weekend, I immediately felt unease.  Unease at how jovial it felt, perhaps even flippant.  Do I seem too happy?  Do I seem smug?  Have I just bought myself a stall to sell my (desired) lifestyle image on Instagram?.  

Actually the post was more about finding joy in small things, whilst weathering more storms.  There is a lot going on right now, some of it mighty unsettling.  Alongside several family hiccups, the royal baby headlines floored me, and I was surprised by how much.  I'm so sensitive to "it's a boy!" announcements but it ran deeper.  There were debates online about how mothers look several hours after birth, women posting pictures of themselves in bloody gowns, cuddling puffy babies.  They were the "keeping it real" posse, standing up for us average Joe's, showing the world that it's normal to look like shit after giving birth and that's ok.  The debate touched me deeply because it reminded me that each day when I smile and carry on as normal, I mask that something fairly abnormal happened to me.  My post partum photograph was nearly twelve hours after Freddie's birth; barely conscious and still receiving blood tranfusions, saying hello to him in an incubator transport trolley - knowing he was deeply unconscious and not knowing whether I would see him alive again.   And yet, even with those awful set of circumstances, I'd go back and do it again,  just to run my fingers over his soft tummy.   The news then turned to Alfie Evans.  I can't comment at all on the case, it's too difficult for me to untangle my own experiences of hospital advice, withdrawing life support and having a child that defied expectations and breathed unaided for so long.    These reminders and triggers aren't wildly unique of course, they are all around most days or weeks in some form, but these ones do seem particularly poignant.   The armoury that you build in the years post-loss can often fall off, very unexpectedly, leaving you feeling fairly bewildered and raw. 

I find that dealing with such difficult reminders, and living without ones child often brings about really deep and existential questions, as you battle to regain control of grief's wildest storms.  It can be difficult to find meaning (when there are no satisfactory answers).  I do sometimes have a very bleak, fleeting worry that when I reach the end of my days, I'll look back and see my life as sad and perhaps even disappointing.   That I failed, that bad things happened, and that I didn't make the best of it.    Losing Freddie has made me resilient yet weak, compassionate yet impatient.  It's so difficult to laugh in the same way, with so much trauma and loss and longing under the skin.   So here I am once more, trying to readdress the balance.  The trouble with containing feelings and worries within,  is that after time they leak; through tears, through words, through rage - like a wound oozing through muslin.   I have learnt my own grief techniques over these last years, and I largely feel I understand it, but sometimes this process of writing is needed.   For as much as we try and make lemonade from lemons, as the saying goes at least, we don't always want the fricking lemonade.   My mantra for these last few years has been "all I am doing is living and breathing", and it's stood me in pretty good stead.  Wallowing can't last long because breathing shouldn't be an opportunity wasted, similar to my Dad's fairly brilliant KBO motto (keep buggering on... ).    Life can sometimes be a very lonely, dark room; devoid of those photos you longed for on the walls, cold and unrelenting.  It is tempting to leave the door shut, because the world outside can hurt.  But when all's said and done, if you don't try and craft some light out of the prevailing chaos, it would be too dark to see those many moments of outstanding beauty. 

Tuesday, 9 May 2017

On being an outsider

Child loss is relatively unspeakable in our society isn't it.  It goes against the grain.  We don't like death generally, because it reminds us that this old world isn't permanent;  and because we can't imagine being nothing, we tend to avoid deep conversations about it.  None of us like endings particularly, aside from the moment a shit film finishes or we walk away from a terrible relationship.  But add in the death of a baby and this uncomfortable theme takes on a whole new level of awkwardness.  I have hypothesised many a time that baby loss is such a horrendous subject that most people try to minimise it, or shut it down, or try and draw parallels which just aren't really  appropriate.  People also don't like to imagine that there's an event which could happen of which there is no getting over.  An eternal pain.  I suspect human beings are generally, at the crux of it, optimistic beings, and so dealing with a person who may remain partially or wholly sad forever is uncomfortable to say the least.  Humans also like to try and fix things,  so it's doubly frustrating to realise there's no fixing this forever loss.  We can only take so much gloominess before we start wondering if we are absorbing negativity, without realising that the negativity is actually just love with no real channel.  It is those reasons why baby loss isolates us.  Very few people are brave enough to take that journey with us; to gently hold our hands and say "I'm willing to listen to your words forever, I will talk about your child always".

It is so sad that a common theme in our journeys is a breakdown in friendships and relationships.  We not only navigate the start of a new, unwanted life but also one which is often much lonelier.  How troubling that society forces us to the sidelines at the very time when we need surrounding with love.   We stumble across unfortunate comments and circumstances and find ourselves somehow needing to fit in, rather than the outside adapt to the shape of our loss.   We, the square pegs are expected to become round, to be understanding of other people's discomfort and to be forgiving of their clumsiness and avoidance.   Why  shouldn't the hole (society)  try and become more square?  Why can't it  take a minute and be understanding of our loss and forgive us our ongoing distress.

This January, two years after Freddie's death, I found myself suffering from more grief and anger than I ever had before.   The curious and devastating truth of my loss, was that for two years I mostly contained my grief.  I did it for my other children, for my rainbow child, but it was mainly shock and avoidance.  I have struggled with the guilt of his absence, the loss of a child before, feelings of being punished.. the list is fairly long.   But sadly by the time I had reached full acceptance and was hurting the most deeply,  everyone else seemed to want to move on.  They had dealt with what had happened as much as was comfortable, and by the time I was completely raw with the loss of my beautiful boy, they were fairly baffled by the strength of my feeling at this point in time.   He was forgotten in conversations about how many grandchildren there were, in presents containing photos OF the grandchildren.   I received two birth announcements - one the day of the anniversary of his funeral.  Only one family member messaged me on Freddie's birthday... just one.  My grief by that point was glossed over, minimised, or at best placated.   I tried on a number of occasions to talk about how I was feeling, to release my pain for them to see, to tell them I felt alone and was hurting.    I was told "people just don't know what to say, they just don't understand",  I was also told "you have other children to focus on " (as if they weren't my reason for getting up each day), and I was also told "perhaps it's time to move on".   Where do you go with grief when society bolts its doors?

Society needs to set itself free in its conversations about death.   Nobody should have to be the uncomfortable silence.   This week I'm getting involved with the Dying Matters Awareness Week  (http://www.dyingmatters.org/AwarenessWeek)  in the hopes that we can open up conversations and learn how to support bereaved people better, whoever they have lost and whatever the circumstances. Of course we'd rather ignore death until someone becomes so old or ill that it becomes a release (then we can insert comforting platitudes about "being at peace" or "having had a good innings" or "not suffering anymore"), but it  can happen when we least expect it, and ultimately we are all just a phonecall away from something life changing.   I can't ask you to imagine being without your loved ones, but I can ask you to imagine feeling like nobody wants to listen.   Let's be prepared to support, to love, to be brave and accept someone's journey however bleak or scary it may seem.  Isn't is what any of us would expect?




Friday, 27 January 2017

Rainbows

This blog has been many things to me.  It has been a shelter, catharsis, therapy, the pillow to cry into and the screen to rant at.  I set out for it to be a tribute to Freddie and to grief, and I hoped that someone, somewhere might read it and feel they weren't alone.  Yesterday I wrote for the first time in a long time, briefly about Freddie's due date and why that date will always be so special and poignant.  Since then I have been pondering on what life has become, given I've not really talked about much; and what I have blogged about is obviously what I had set out to discuss.  But there is so much more and perhaps it's ok to talk about my rainbow without it detracting from Freddie.  

When I was pregnant with my rainbow baby Sadie, it was literally the last thing I wanted to discuss.   It felt like a betrayal to Freddie and I felt a reluctance to mention it because acknowledging was to invite in real fear, and potential for further heart ache.  A pregnancy after loss is unimaginably hard for a myriad of reasons.  The first clearly being the psychological shit storm of how to bring a live baby home.  The weight of responsibility to get it right this time, for yourself, for your partner, for your other children.  The conflict of emotions when you want to love the new baby (and you do of course), but you fight against connecting in case you have to say goodbye.  The guilt for wanting more, or for moving on in any way.  The constant distrust of your own body.  The shielding of questions from people, the reassurances from people, basically just dealing with people.  Ideally,  all you want to do is race through 9 months and be as mentally and physically intact as possible, without having to talk to anyone at all.   Looking back on the pregnancy now, I have no clue how I managed it; though I know that having a good clinical psychologist helped.   I have learned (sometimes at least) how to stay in the moment.  I feel that is one of Freddie's greatest gifts to me.  My mantra for last year was "all I am doing is living", and it is.  Whatever we do, whatever we cope with, whatever sadness we carry, the time it takes to carry it is just living and breathing; and we do it without even thinking for so much of our life.

On 17th March 2016, Sadie Wren Elizabeth Bean entered the world, crying.  That sound heralded breathing for us all too,  we'd held our breath for so long.  I had tied myself up in so many knots of responsibility, for Sam who was on the cusp of his GCSE's and who I'd convinced myself would be ruined if I let another baby die.  For Tilda, who had been so brave after such huge loss and huge questions at the then tender age of four.  Biggest of all was the responsibility I felt to Simon, who had been so reluctant to go through another pregnancy, who was so fearful of another health emergency, losing another child, financial woes.  He had warned me that another pregnancy and baby could be the undoing of us.   So when she arrived, we collectively exhaled and prepared to get to know this tiny little daughter and sister, weighing a confusingly small 5lbs 8oz.  Sadie from the start has been a magical gift.  She has taught us to carry on with lighter love in our hearts and has given me an exceptionally unique opportunity to parent once more.  She has taught me a patience and calm which I didn't know I had - not because she has tested my patience in any way but because I appreciate every single bit of it.  She currently wakes up at 5am every morning and whereas my older children would've been hushed to go back to sleep, I am (mostly) delighted to have the opportunity to go downstairs and play with her.   Her presence does not make Freddie's absence any less painful but it does contain the loss like it has been put in plaster cast, still broken but gently protected from the elements.   When Freddie died, I often felt like I should join him.  I'm often overwhelmed by the feeling that he's alone, and it's excruciating.  I remember saying to Simon, on the first night I was moved from HDU onto the bereavement suite, that Sam would be old enough to cope, that Tils has such a strong bond with her Daddy and therefore would never be alone, but Freddie was without anyone and I felt I needed to remedy that.  Sadie has quelled that storm, because she somehow binds us all together and sandwiches Freddie right into where he should or could be.   The journey after loss is never over.  I hoped in the early days when I hurt too much and understood too little that it would be.  I imagined in some way that I would look back and think "bloody hell that was a horrid time, thank god it's over and I moved on", much as I do when looking back on my first, and very abusive, marriage.   Now I understand better I can see that as awful as it is to live with, it is equally wonderful to think of your child(ren) with pride.  How on earth could I forget or regret such a beautiful little boy?  And the fact that all my children look so alike means that Freddie is never truly gone.  Sadie has such a sparkle about her and a lust for life that sometimes, just sometimes, you could almost imagine Freddie sent her with a message to live every moment as well as you can .

Thursday, 26 January 2017

What is in a (due) date?

  At the very beginning of that journey, the moment where we stare down at that digital display or two blue lines.  We sit, mesmerised, stomach turning over with excitement, fear, love and trepidation; right at the beginning where the calculations start and a countdown commences.  This magical date becomes the centre of your new world.  It signals the start of hopes and dreams, of altered sleep; of new relationships, new roles, new dynamics.  It is anticipated to be the moment of meeting love itself.  And however much we know that this date may not be fixed, this is the flag in the ground – the focus of our attentions for the next 8 months or more.  How strange it is that this date has then become long since forgotten with the children who have come home with me.  It has become replaced by a more meaningful birthday and those milestones like first teeth, first steps, first words.  The memory of having future hopes and dreams is replaced by the daily peaks and troughs of real life.

Today is Freddie’s due date, and because his “firsts” never came to pass, this date is etched into forever as a marker for my hopes of meeting him, and my dreams of our life together.   Today I remember the innocence of that pregnancy and the wonder of growing him.  I remember those worries which accompanied our journey, from getting him here safely, to the fear that I might not have enough love to go around.  I remember the joy I had in seeing his feet thump around my belly,  and the huge impatience I had to meet him and tickle those feet properly.  I remember counting down the days to 26th January 2015, desperate for him to be early because in my mind I had waited for him for years instead of months.  How foolish that impatience seems now, to wish away what little I eventually had.  The due date continues to harbour those precious few memories, in a way which isn’t necessary with children who live.  It becomes a storage unit for that short but beautiful life of innocence that we shared with our child, and the heart-breaking reminder of a date which so cruelly dashed all expectations.

Thursday, 31 December 2015

NYE



This is the day I have dreaded all year, the new year countdown.  This time last year we were arranging for our two older children and close family to come to the hospital and meet Freddie before his breathing equipment was removed.  At noon everyone said their goodbyes and left Simon and I to hold our youngest close while he slipped away... only he didn't... not straight away like we thought. My CT scan was postponed (I remember point blank refusing to move - as if you'd forfeit any second with your child!), we sang songs and took videos and I think we probably convinced ourselves that he might even stay - despite his lack of vitals.  So at 11:50pm when Simon left the room to call his brother, it was a huge shock when he decided it was time to go.  Simon arrived back just as Freddie took his last breath, just before midnight and I remember the registrar coming in to confirm his death as fireworks went off and people in the corridors sang Auld Lang Syne.  A part of me remains convinced he meant it this way, a lesson or gift, making the old year firmly his own... I don't know.

His birthday passed by peacefully, brilliantly and positively a few days ago - it felt wonderful to have a day all about him and I've since wondered why it was so much easier than I expected. Some of it is possibly because I have no memory connected with his birth, I wasn't conscious. I didn't get to see or hold him for well over a day so perhaps this disconnection has made his actual day almost blissfully ignorant for me; if that makes sense.  I remember the events leading up to arriving in hospital but there is no sharp focus memory of his arrival.  Unlike today.  This day last year I remember it all, so I've been thinking all year that I wouldn't survive the celebrations going on around me this evening, that I would have to go to bed with ear plugs (for ever more). 

However, I'm lying here thinking about death and renewal, and whether that's the crux of the new year, not leaving anything behind as such, but a bow and a curtsey to the old year and a look towards the new with a view to new opportunities and growth.  This thought has made me smile because I feel it's another lesson from Freddie.  I don't need to have a wine in hand and a big old knees up, or see the new year in with a drunken kiss, because this New Year is about contemplation and new beginnings.  2016 will bring me a little sister for Freddie - whatever happens she exists, her heart beats and I feel her tiny feet in my tummy. It is so difficult to outwardly acknowledge her for fear of tempting in the title of "that poor woman who lost two children".  I guess it won't be OK until it's " OK".   But still, she exists within me, she is not Freddie, she is she, my gift from Freddie. I am enrolling in pottery classes and I hope that I can find a way to start learning reflexology and ultimately work for myself. Freddie has brought me so much already - a deeper understanding of myself and a need to rediscover my creativity. 

I suppose what I'm trying and failing to say, is that when the clock strikes midnight tonight, I want to acknowledge that and not hide away.  I want to say thank you to my boy for bringing so much love and wisdom to my life, and I want to thank him for the opportunity of another year to live life for the two of us.  This may be blind optimism of course, it's so difficult but I'm trying.  In some ways the New Year is an hourglass reset, it is the green light to put away the things you don't want to carry with you any more. Guilt, anger, isolation.   It is permission to discover new paths.  All of these are more than possible whilst still carrying those you love.











Wednesday, 23 December 2015

Freddie's 1st Birthday poem

This year we have gazed so many times upon your face
Studied your slumbering philtrum
In which you carry your Daddy's genes
Your peachy skin and clenched up fists
We've studied you so very well that
You are imprinted behind our sad eyes.
I've carried you within me for a double gestation
And kept you alive within my soul
On my ascent each night I walk past you
And every time ache for the yesterday and tomorrow missing within us.
I swam furiously until I realised
I wasn't going to drown
And you took me to another place where you gently made me submit to your absence
I finally found some peace in our deepest grief and gave up struggling to mend..
For whatever I do my heart always wakes up full for you, despite the journey of before.
And when I light a candle for your big day
I will hold you close
And tell you that you have taught me my true self
Imperfect, sad,  happy, self centred but full of endless love, newfound patience and acceptance.
My heart is fractured for the loss of all the times I haven't got to teach you things too.
The pots and pans and wooden spoon you never got to bang,
The mushy rusk you didn't throw on the floor
And the first tooth I didn't go sleep starved over.
Your firsts have been my firsts
We have to create our own unique future.
#FJB

Tuesday, 8 December 2015

Tis The Season To Be Jolly Grieving

So here we are.... December.  The question that keeps entering my mind is "how is it possible to survive a year without my child?".  It obviously is possible because we've nearly done it - another three weeks and Freddie hasn't been with us for a whole year.  A first birthday without presents or a party, without kisses and cuddles and wows at his latest achievements.  A visit to his grave and a look at his beautiful face in our few photos.  The little face which never grew big enough to smile and laugh.

I can't even sum up this year, in part because it isn't over - because I have his first Christmas without him coming up.  And because I know that hearing a joyeous rendition of Auld Lang Syne will be like my life ended all over again.  How on earth I will live the rest of my life having to endure the memory of life leaving his body as people began to sing that.. well I don't know.. we survive.   The one thing I have come to accept this year is that I AM brave.  I have picked myself up and endevoured to give Sam and Tilda the best I've got.  For Freddie.  For them.  For Simon.   Sometimes I wonder how I do it,  I wonder if I'm fake, or dysfunctional because I don't wail into a pillow every day.  I wonder how I manage to keep going when people ask me how the baby is or when people who I expected more from miss Freddie out of the equation.  I wonder how I stay sane when people look at my bump and ask me lots of questions that no longer seem safe, relevent or polite.  They are presumptious, naive but at worst well meaning.   When are you due?  How many children do you have? (me: "four" them: "wow you're brave, bet that's a handful") or when people know what happened to Freddie and tell me that things will be fine this time - amazing how psychic people become when they don't know what else to say...

But back to Christmas and New Year;  I am driven by the need for my children to know their brother and remember him, but to also never feel that his death has disadvantaged them.  I don't want them to be burdeoned by an eternally grieving mother; to be sat in therapy in ten years time saying how their mother was essentially emotionally void and vacant post their baby brother's death.   I want them to be able to speak without fear or shame but with conviction that life goes on and they have been happy and nutured and loved despite this tragedy.  So this Christmas and New Year, as much as I want to run and hide is going to be met face on.  The tree is up and Freddie's bauble and angel sit on it.  I grieve terribly for the boy who didn't get my promise of a lifetime together and didn't get to be so completely loved and doted on.   I will cry often and sometimes Tilda and Sam may ask what's wrong.... but really they know... and that's ok.  It's ok to miss him, all together.  It's ok to acknowledge the insanity of him not being with us for a whole year, it's ok for us to collectively mourn the empty space as we open our presents on Christmas morning.  But it is doubly ok for us to carry on loving and laughing during this time, in fact more so.  Freddie existed because of our bond, he was wanted by us all, and our strength together during this difficult season will keep his memory safe and warm.