Let there be light

Everything is solar powered.  If I don't see the sun, life takes a turn for the worst.  I also become vitamin D deficient and a bit of an arse ache to live with.  But today has been sunny and productive.  After over two years of talking about what we might do to the garden, we actually sorted the vegetable patch out.   With a little help from the FIL.  Freddie is tied into this really as it's my hope that one of our new flower beds will become his - a wildflower meadow where I can find some time with him.  So that combined with an offer of help, sort of kick started things.  Two days in the sunshine creating new memories which include him.  It can't be a bad thing (now that the bad thing already happened).


Let there be light on my skin to guide my soul outwards, to share in others and take down the walls of grief.  Let the sun melt away my worry and gently place freckles of hope across my body like particles of him.
Let him shimmer across all living things.  Let him be part of the crab apple tree that grows from his grave.  May the birds and bees enjoy the blossom and apples.  Let them carry his atoms and spirit across the sky to become a part of everything around and below.

The Madness of King George

We're now approaching anniversary territory... Nearly a year since my beautiful boy was conceived.   As far as anniversaries go I understand it's not the most profound but to me it marks the beginning of a journey in utero which was the only meaningful relationship I had with Freddie.  This combined with various other issues has made me a bit mentally unstable.   I seem to remember The Madness of King George being something to do with blue urine; so I'm not quite in the same league, though I do have a bladder infection and some very strange digestive issues which in my bat shit crazy world at the moment probably means something serious.  I mean now more than ever I've realised that terrible things can happen.  To me.  So why wouldn't these health issues be a precursor to something more sinister.  Sadly this thought has festered,  along with a crushingly awful wave of grief, my period and also a confirmation of school for September for Tilda. I've got to let my daughter go (in my mind this is far more profound that the actuality), and face the empty space left behind.  So I've been so anxious this week I can't sleep.   The level of anxiety is unprecedented - it has completely taken me by surprise.   I can feel it pulsing through my veins like some dodgy psychedelic drug and I feel peculiar.    Sometimes the panic is about Freddie, other times for Sam and Tils and the rest reserved for me and try as I might to be rational, it just ain't happening.

The oil drum soup that I have made during this journey is thick with realities, fears, sadness and desperate hope... But it's consistency is like jam, I can't stir it freely to make these thoughts more fluid and elastic - it is clogged, tangled and stuck.  In short nothing is making much sense apart from an over arching fear that I'm cartwheeling down a precipice with momentum propelling me further and faster - my life is out of control and sinister.  I have moments where I'm able to be rational and tell myself that it won't always be this way and it will pass, but rampant panic normally blocks out the less ludicrous thoughts.   In the weirdest moments I envisage my final resting place and wonder how near I can be to Freds, not that I'd know, but it's comfort of a sort.    I think of that night when I was rushed to theatre and I imagine my life before, and I wonder if on some level I knew I was hurtling towards this catastrophe.   But this is madness, the worrying, the missing, the ache.

It seems that blue urine and a title may be marginally more preferable.

The End of Perfection

As I drove along in the car yesterday,  Lou Reed's "Perfect Day " played on the radio and it occurred to me that for the rest of my life no day can really constitute as a perfect day again.   No family outing can truly hit the blissful heights again with the absence of Freddie Bean.   The closest  thing I have got to perfection since he died was Mother's Day where we all sowed wildflower seeds on his grave.   In the context of loss,  this was a perfect thing to do,  but no day can ever be bathed in absolute brilliance.

It is not necessarily an unhealthy thing to lead a life of lowered expectation.  Suddenly one finds pleasure in moments that would have previously gone unnoticed,  one ekes out the goodness from trivial things.   I watch a robin build a nest in the garden intently,  in a way not done before.   I notice the season of spring enter with such a profound and bittersweet sense; the blossom sweeping in as the snowdrops fade away.    Where previously spring brought me unbridled excitement,  it now brings me a sense of melancholy.  I am further away from the little gasping breaths of my son,  but nearer to a formed relationship with him.   I'm still learning.   One day,  when grief has comfortably found refuge within me,  perhaps I won't feel betrayal at moments of almost complete wonderment. 

The comfort of feeling miserable

Grieving for a child involves unprecedented levels of guilt.  Primarily because being a parent means you protect your children..and infants don't die.  So that assumes you did something wrong and because of this you then spend an inordinate amount of time self flagellating over what that may have been.  When you have finished (if in fact you ever do) feeling guilty over the actual events leading up to and during the passing of your child you then move onto the next batch of tortuous thoughts and feelings.   I found those early  days agonising and I would liken them to waking up in a horror show again and again.  The moment just after your eyes have opened,  before you remember.   The moment you go to look for your infant either with hands on stomach or eyes to crib.   The guilt and sadness of those early days and weeks overpowered me,  I was wrestled to the ground by it daily and I spent most of my time wishing I could go back to him, wishing I could die, and most of all wishing the pain would stop.    I lived in fear of eternal pain, not knowing how to fit its enormity into my sad little frame forever.   Grief at first is a death sentence.  Grief must be negotiated,  learnt and branded.  I am personalising grief with my continuing relationship with Freddie.


Learning to cope with losing him and with how to grieve has now brought me to a startling revelation.   I have discovered the unthinkable.  I CAN COPE (mostly).   I can find ways to love my child, I will always be taught important lessons through the rest of my life by my child, and he is always with me. And repeat.  This doesn't mean I have tucked a chapter under my belt in cavalier fashion and am striding forth with purpose,  quite the opposite.    Our old friend guilt would never allow it even if it were something I chose to do.   Guilt likes to encroach whenever more positive or strong behaviours emerge.  Guilt likes to remind you that you shouldn't smile, or laugh or feel that life is once again worth living.   I find that a few hours of watching a film, or finding some giggles and love again with my husband, or getting lost in a furniture project are wonderful but shortlived, because guilt tells me I am dishonouring my son.   If I don't think of him, guilt tells me I am a terrible mother.    But we can park guilt to one side when we consider this;  we are multifaceted creatures.  Mothers, lovers, wives, sisters, aunties, best friends, counsellors.  If Freddie were here I would still seek out that time for myself, but the stakes are higher now because he isn't.   His absence means I have to try harder to keep him alive in my thoughts, because if I don't think about him then he isn't anywhere.

So with guilt at arms length,  I've recently realised that there is comfort in all that pain.  I've realised that when I cry, something different happens - I no longer fight it and I no longer have the awful fear that life is forever ruined.  I feel soothed by the sadness, for when I cry he is with me.   I see that life can't be ruined because Freddie has left behind a subtle legacy.   I quietly write, I think, I garden, I watch, I drive in the sunshine to see him and sometimes I laugh and smile.   All of these things I do are because Freddie was born, and the poignancy and sharp focus of every emotion and act is an honorable tribute to his being.  So when the pain and suffering come along, triggered by anything from finding his little baby bath in the cupboard to watching something on telly or just simply waking up and feeling despair at his absence, I embrace it.  I cry willingly and wholeheartedly and indulge in it.  This is the closest I can be to him.  The comfort of crying for something precious beyond measure.  The sadness that makes my son the most important thing in my day.  I no longer mind feeling that pain because it is as real as he is.

One New Years Eve

A labour ward bustling with pregnant promise sets the scene for the sad farewell,
No balloons or smiles they gifted him but no time for sense to dwell,
The chaplain came with furrowed brow and blessed the sleepy cot,
While the family encircled him etching a time never to be forgot.
The children played with their yearned for brother for a moments first and last,
And then ushered away leaving Mummy and Daddy to nurture his path as he passed.
Twelve hours of loves last lingering tune, they bathed him til golden he shone,
And as midnight approached to bring in a New Year, in three breaths their baby was gone.
The corridors rang out with traditional song as fireworks lit up the sky
And instead of making their promises new, they made vows which were wrapped in goodbye,
That night as a mummy slept next to her crib in a ward which was bringing forth life,
Her baby lay quiet and needed no fuss from the tearful and present midwife.
When morning crawled in, the world carried on, unaware of what had departed ,
Leaving parents behind at the tick before midnight, desperate to stay where they started.
And so to a father who steps out of the room to spread the expected joy,
But instead he is calling a burial ground to give rest to his newborn boy.

Don't weigh me down

Grief would be easier to process if it weren't for the constant feelings of anger for other people's ineptness.  For instance when someone who should know Freddie's name and should also be aware of the need to hear it,  doesn't.   When someone doesn't acknowledge my loss when I've outlined it to them.  When someone reads out from an NHS database that my next of kin is Freddie Bean.   This list is by no means exhaustive.

Grief is a heavy backpack, it is rocks in your shoes,  it is a heart made of concrete.  When someone gets things wrong who shouldn't,  it adds weight.  It clips an added ball and chain around your ankles and extra longing in your soul.   We know people will get things wrong,   we wait with clenched fists and anxiety knowing an unfortunate comment will fly our way at some point.  But for some reason when professionals chuck an extra stone in our rucksacks,  we are caught off guard and vulnerable.

Disempowerment scares me deeply.  The idea of being powerless at your most pivotal life moments - and doctors and hospitals do just that to me.  I find myself speechless in our follow up consultants meeting when he tells us "you were lucky that it happened between shifts as we had double the staff to deal with it".  Define lucky, my son was born brain damaged and subsequently died.  This consultant never once referred to my son and never once said "sorry for your loss".  I find myself desparately trying to convince an NHS out of hours doctor who hasn't bothered to read my notes that I'm not pregnant.  By the time my appointment has finished I'm wondering if I am pregnant and if I just don't know myself at all - despite the fact we use contraception and despite having a period the week before.  And finally, amongst a catalogue of unfortunate comments by professionals, a hospital receptionist asks me to "confirm that your next of kin is Freddie Bean".  How hard can it be to not put someone's deceased child as their go-to contact in an emergency.   But instead of asking to see a manager - instead of making an immediate complaint, I am too ill, I am too tired, I am too shocked.  Another day where my luggage gets heavier thanks to the incompetence of those I place my health and mental wellbeing in the hands of.

To people with power, to people in charge of my health:  grieving is baggage enough, be mindful in all you say and do so as not to make it impossible to bear.