100 days without you

Yesterday was 100 days since William died. That’s 2,400 hours, 144,000 minutes or 864,000 seconds. People say to me take one day at a time, hour by hour, but even that seems too unbearable. The next hour seems to far away, part of a future that I’m trying so hard to resist, a reality that I don’t want to be part of.

There is no glossing over the hard facts of William’s post-mortem report and the care leading up to his death. I find myself once again in shock, physical shock. The tremors taking hold of me, my hands clammy, my pulse racing, the adrenalin surging through my body, in a constant state of fight or flight. The medication no longer touching the sides. I am exhausted, physically, mentally and emotionally. My mind feels scrambled, whirring round and around like a washing machine, trying desperately to process the devastating fact that William’s death was avoidable. So utterly avoidable.

Getting through each day, each hour is just too much to comprehend. This morning I rocked up to my appointment with my care coordinator in a mess. Immediately she was able to notice the difference in my demeanor, agitated, perched on the edge of my seat. My eyes darting round the room unable to focus on anything, our conversation flitting from one thing to the next until she asked me ‘how do you feel, right now, in this moment?’ When she asked this question I was busy thinking how the view from the window was very much like the view from the relatives room in the hospital the day William died. How the sky was the same colour, grey, but not just any grey, that grey, the grey that depresses your mood the instant you look at it, it was dull, sullen, with no break in the clouds for as far as the eye could see. That’s what my mind felt like, cloudy, no light seeping in, laden down with darkness. My mind left the relatives room that day and I was trying to focus, how do I respond to that question? How do I feel in this moment?

I pondered for a while, the silence in the room being broken only by the sound of scratching, I realised it was me, scratching aggressively at the palm of my hand. The skin hard and broken yet again, anxiety was destroying me. I could imagine William holding on to the table in front of us, walking round it and removing all the items, discarding them on the floor, ready to play with when he’d finished. I could hear his little voice, babbling to himself as he kept busy, the sounds almost becoming recognisable as words, the pitch in his voice changing as he progressed through each sentence. My goodness how much I miss him, the despair and grief the price I so willingly pay to love William so much. How did I feel in this moment? I could think of many things, I am feeling a mixture of emotions, but right now in this moment I just can’t comprehend how I will live without William here.

And that was it, it occurred to me, how do you feel in this moment? A single moment. Lunchtime seemed like a lifetime away, let alone tomorrow or what lay beyond. With every fixed period of time an unbearable prospect to live with, perhaps I could just live with this moment. Survive just this moment in time. I could just get to the end of this appointment. I could just walk back to the office. I could just turn my computer on. Getting through to the end of each day an impossible task to comprehend, but maybe I could just get through this moment.

Time has been standing still for me since William took his last breath. Many moments have passed, each bringing with them a fear of the unknown. Grief so underestimated. Like the septicemia that silently took my William, grief silently ravages you from the inside, destroying you, debilitating and relentless. To feel so much pain is to feel so much love.

So, how do I feel in this moment? In this very moment I feel tortured.

How can anyone be so wrong?

Last week the pediatrician from the hospital came to visit us armed with William’s post-mortem report. Although we were given preliminary results 9 days after William died, these were not conclusive and subject to change. ‘Unusual, if not lucky’ they told us, apparently it’s unheard of to have any indication that early when someone dies unexpectedly. Lucky is not the word I would have used, I did not feel lucky at the time and I do not feel lucky now. Looking back I suppose relieved would have been a more appropriate word. I knew William had been poorly, but I was dreading them finding nothing wrong, life was already unbearable, but the thought of my little boy going to sleep and just not waking up was something I knew I just wouldn’t accept. However, after the doctors telling me that he was ‘ok’ and had nothing ‘grisly’ it was a concept that I had to prepare myself for.

In those 9 days every second was spent relentlessly questioning why? why had William died? The doctor on the Friday had told us it was probably just a reaction to the booster. On Saturday the 111 call handler deemed his condition as a non-emergency. Later that night the Serco doctor explained it was likely a virus, he will likely get better without treatment. So with William asleep in bed, we felt rest assured we were doing the right thing, we’d been told lots of times it was nothing serious and he’d be back to his normal self in 48 hours. I expected a very unsettled night but William slept through Saturday night with no fuss, wriggling around his cot to find the most peculiar position to sleep in as normal. When I checked on him he was sleeping soundly, snoring faintly and clutching his reindeer teddy, nothing out of the ordinary. At 5:10am when we checked on him he had settled himself back to sleep after having a drink, nothing unusual. 36 hours was Sunday morning. I never expected that when I went to check on him that he would be gone. My beautiful little boy, gone. How could this happen? What happened? Why had William died? Those agonising 9 days were a constant battle in my head, with every question that I asked myself I came to a different conclusion. Meticulously going over every last detail, not just over those 36 hours but during his whole life, all 382 days of it. Had I missed something?

The reality was I hadn’t missed anything, I had never missed an appointment to get William weighed, his injections were always on time, I even have a diary with the amount of milk William drank and the time of day he drank it from his birth until he was eating normal food. From the time when William had begun to be poorly at the end of September until his untimely passing I had visited the doctor on 6 different occasions, this was in addition to the telephone appointments. So no, I couldn’t have missed anything, could I? No, the truth of it is I didn’t, when William was poorly I took him to the doctor, when he didn’t get better, I persisted and took him again and again, sometimes seeing a different doctor. ‘It’s just a cough’, ‘his chest is clear’, ‘his ears are fine’. Just give him Calpol and Nurofen.

How wrong can anyone be? Well on Thursday we found out.

When I cradled William in my arms on the morning he was taken away to Birmingham for the post-mortem I whispered in his ear that he had a job to do, ‘you hold all the answers sweetheart, only you know what’s happened, please tell the doctors what happened, mummy needs to know. Mummy’s asked to come with you, but she’s not allowed. Please don’t be frightened, be a brave boy, mummy is so proud of you, and she is always with you and she loves you so much, mummy knows you can do it.’ My little boy did exactly that.

On that last trip to the doctors William had septicemia caused by Inasive Streptoccocal A bacteria. He had an empyema which is pus in the pleural cavity, the space outside of the lung, 200mls of toxic pus to be precise. He had an abscess in his left lung and a heavy ear infection with fluid in both ears. These were directly caused by a chest infection which developed into pneumonia. William’s chest was obviously not clear, William’s ears were clearly not ‘ok’, his cough was clearly not ‘just a cough’, and he did have something grisly, Septicemia, something about as profoundly grisly as you can get.

I can’t begin to explain the feeling, the feeling of utter disbelief, how something that started out so simple, so easy to treat, so easy to diagnose resulted in William losing his life. It’s incomprehensible. An investigation is already underway into his care, those directly involved will have to answer questions at the inquest but it doesn’t change things, it’s not good enough, it’s not acceptable, it doesn’t bring William back. I will be in pain for the rest of my life, there will always be a huge hole, something missing but that is nothing, nothing compared to my little boy losing his life, losing his future, losing our dreams. All taken away. There are no sufficient words to explain how I feel right now. My little boy robbed of his life, and us, robbed of ours.

In one moment my life changed forever

As we slip further away from the 15th March, it marks the anniversary of the first Mother’s Day that I spent without William. Every day until exactly one year since he left us marks a first anniversary. The first mothers day, the first birthday and of course we have already lived through our first Christmas without him. Well, I wouldn’t necessarily call it ‘living’ but more surviving, existing. That’s what every day feels like. I get up in the mornings, sometimes, this morning I couldn’t face getting out of bed until noon, why? why today? today I tread the fine line, the fine line between being left here on Earth with what life I have left and how much I yearn to be in heaven with my William. It is a balancing act. One of great magnitude. The feeling that engulfs my body with sheer despair and dread, weighing me down so heavily, exhausted by the time I get out of bed. Grief is silent, but so powerful.

Every day brings new emotions, some days it’s easier to function through the meaningless tasks, other days the grief hits you like a tidal wave and carries you along, not knowing where you will be discarded along the way.  I function better than I did 13 weeks ago, but with that brings a heightened sense of clarity. I find myself often staring out the window or at my computer screen thinking about William’s lifeless body in the little white coffin. How every day that I visited him, I took him out of the coffin and cradled him in my arms. He was gone, he was cold, he was small, I would wrap him in a blanket but take his arm out. I would entwine his tiny little fingers in mine, warming his little fingers for the hour or so that I would sit and cuddle him. On one of the days that I went to visit him, in the hospital I was able to lay down on the chairs, William on my chest, just like he should be, to feel his skin on mine one last time. To drench his hair with mummy’s tears and for mummy’s tears to land in his eyes, for them to flow down his cheek. To trace my fingers along the small, perfectly formed eyebrows, down the contours of his face, following the curves of his cheeks, drinking in every last detail, never wanting to let go. In this moment, these precious last moments that I was able to hold my son for the last time, I closed my eyes, held William’s hand to my cheek and felt heaven, total peace at one with my little baby.

When I became William’s mum, long before I gave birth to him, the switch in my head carrying those maternal instincts that would allow my body and mind to nurture this little boy, switched on. When I was in labour, I said to Paul ‘what happens if he doesn’t love me? What happens if I don’t love him? What happens if I’m not a good mum’, Paul said ‘he already loves you, you already love him, you’re already a good mum, you’re all he knows’. I was all he knew. All of my senses to nurture, to love, to protect, to feed, to hold, to wrap him in my arms and keep him safe, that rush of love, a mothers love, so powerful, so sacred. Those deep brown eyes so trusting, so loving, held the bond between William and I, no words adequate enough to describe. But now, as I laid there with William on my chest, that look of love, that physical connection, my mind pleading with him to wake up. There was one memory so prominent, racing through my head, fighting for me to analyse it that little bit further. The one memory when I close my eyes I cannot escape from, the memory that I can reach in my mind and touch, feel, smell and relive over and over again. William’s eyes. William’s eyes on the morning that I found him. When I opened the blind that morning and I looked in William’s cot I knew he was gone, his eyes, fallen open. His eyes staring right through me. Cutting me in half. That look shattered my world, I was screaming, but William couldn’t hear me, when I touched him he couldn’t feel me, William no longer knew who I was, those eyes always fixated on a point behind me. No-one should ever see their child’s eyes like that, not knowing, not feeling or recognising me. I longed for those eyes to draw me in, fill me with the unspoken words of his soul, our connection. So, for now as I laid with him on my chest, I closed his eyes for the last time, I closed mine and drifted, begging this moment to last forever.

When OK is not OK

It’s a mask you know, one that I put on when I get to the checkout to pay for the shopping, when I go into the office, when I slip out of bed in the morning, that is, when I can bring myself to even get out of bed. You see, when I take the mask off my world is still at a stand still, nothing has changed underneath, when I wake up I still ask myself “why am I still here?”, today is no different to yesterday. No day gets better or any easier to live with, and as time passes my new life becomes more of a reality. Each day, with practise it becomes easier to hide the sorrow behind the smile, hide the emptiness behind the meaningless tasks, superficial tasks that now replace what was once a hectic, flurry of nappy changing, organising little clothes for nursery, brushing tiny little teeth, fitting together the wooden train track for the hundredth time on a lazy Sunday because William liked to take the pieces apart and put them back in the box, to only tip them back out two seconds later. Tasks that made me ‘mum’, tasks that I revelled in and couldn’t get enough of, no matter how many times I repeated myself they were never tedious or annoying, because that’s what mum is, that’s what you sign up for.

When I found out that a tiny little person was invading my belly, growing into my beautiful, perfect William, I knew that no matter what I would never be alone, I would always have a constant in my life, someone to love and love me back. Someone who needed me, gave me purpose and shaped my life. You see, William did that, probably without realising. William gave me such unconditional love, and needed me so much. I could look deep into those trusting brown eyes and know I would never be alone. I know I am not alone, William’s dad, Paul, is an integral part of my life that I wouldn’t  be without, but the love your child gives you, the love William gave me, with every look, with every kiss, with every touch was a love with no boundaries, limitless and endless. I miss this love, the warm, wholesome love that makes you feel fuzzy inside.  I miss everything about William, and having that outlet for my love. As the days succumb to the nights, I miss him more and more, like they say, absence makes the heart grow fonder.

Now just over 12 weeks from the day that my world stood still, nothing has changed. The minutes passing only make my stomach churn more and more, knowing that this is reality. This is life. From the day that William died we were thankful to be cocooned by family and friends. Wrapped up in love. Friends helping with day-to-day tasks like cooking and cleaning, taking you to appointments because you can’t concentrate long enough to drive yourself. And most importantly, those people who are just ‘there’ not saying, or doing anything, but just there, so when you break someone is there to pick you up, when you want to cry, someone will cry with you, when you want to be angry, someone will listen. But inevitably everyone else’s lives have to return to normal, people are hurt, people carry on grieving, but their worlds haven’t been turned upside down. Their lives, although tinged with sadness haven’t changed. We have to re-build our new lives, a way of life we did not choose to have.

So, over the last couple of weeks I have been into work a few times, although under no pressure to do so I know at some point I have to, I have no choice, I have bills to pay that won’t pay themselves. Being in the office doesn’t bother me, my colleagues are friends and two are William’s Godfather’s, but it is hard. Every time I walk through the door I brace myself for the question how are you? in its many forms. I already have a stock answer ‘you know, up and down’. Knowing full well the person enquiring really has no idea how to deal with my response should I be completely honest. No, I’m not ok. My son is dead. I feel no more ‘ok’ now than I did the day he died. When will I ever be ok? When can ‘this’ ever be ok? It can’t. I spent yesterday crying when I discussed the muscle biopsy from William’s post-mortem,  not crying because he’s given me a mother’s day card he made for me at nursery. I know that everyone asks because they genuinely care, I really know that, that is why I have a stock answer. The real answer is exhausting, exhausting to process, exhausting to vocalise.

Although I am not under pressure there are certain expectation’s in society that at some point you are ok, moving forwards, living with it or whatever society calls it. But when is that? You might see me in the supermarket or walking down the street but really I still only want to curl up In a ball on the sofa, but I can’t. I don’t want to get out of bed, but I have to. I don’t want to talk to anyone, but I have no choice. Life is happening, because I have no choice, because it is happens around me. I am continuing to live even though William isn’t. I get up and I put the mask on, the mask that allows me to be a bystander in life. The mask that really hides the grief. The gut feeling when you wake up in the morning and you can hear the silence, instead of being woken up by the sweet sound of babbling. Standing at William’s bedroom window alone when I close his curtains for the night, staring up at the stars and saying a prayer, not laying my tired little boy in his bed and kissing him goodnight. Walking out of his nursery, my eyes stinging with tears, rather than gently whispering I love you in his ear. Every tiny little detail is played out in my head, every scenario like a video player stuck in one moment of time, no matter how much time passes, how many smiles or laughs you see, I will always be part of the club, the club that no-one wants to join, the worst club anyone can ever be a part of.

A club that I will be in, forever.

The process of processing grief

To the world you were one person but to
one person you were the world.

Could have, would have, should have are the start of every single sentence that goes through my head or more to the point every single time I question myself. It is something that I cannot help but do.  As a parent it is natural to want to assume responsibility, although in this instance I did everything that I could, it is easier to question yourself than others. There are so many questions that need to be asked, so many what if’s, but realistically none of the answers will satisfy my mind’s hunger for answers.

Everyday my mind is processing thoughts, processing grief, life at the moment seems impossible, undesirable, and without meaning. I have never in my life been so analytical, my brain whirring at 100 miles an hour trying to make sense of everything. Trying desperately to balance my feet on the path of survival. The other day when looking at the birds from the window, I found myself oblivious to my surroundings, the next thing I knew I was getting changed to get into bed. Where had I been? What had I done? I didn’t know. I sat quietly trying hard to reflect back to what I was thinking about before, but I didn’t know. There was nothing specific that triggered this ‘zoning out’ and I could not remember what, if anything, I was thinking about during those few hours.

Up until recent days and you will have had an insight from my previous post that I have been totally consumed by despair, like a fog that completely envelops me, where thoughts of taking my life have been prevalent. Grief manifests in many ways and I like to believe that when I ‘zoned out’, rather than be consumed by despair, my mind was switching off and processing the darkest of thoughts and keeping itself safe. The mind is one of life’s most wonderful gifts so complex, but so fragile, so delicate and in some cases, dangerous. It is something that in my case, with grief, there is inevitably an absence of a medical diagnosis, medication can aid sleep, aid the symptoms of anxiety and depression but it cannot take the pain away. It cannot take away the desperation of needing William, the disbelief that he is really gone. It cannot stop my mind fighting for answers, contradicting, questioning and ultimately destroying me with my own thoughts.

Someone asked me recently if they thought the inquest into William’s death would give me closure, some sort of ending to the ‘process’, the legal aspect. William is not a process and neither was his death, and you see the inquest will not bring closure or answer any of my questions, because long after the inquest has closed its doors, I will always be sat there in the quiet of William’s nursery, looking at his cot, imagining his perfect, doll-like face in the cot that Sunday morning, wondering why? Why William? Why my beautiful innocent little boy who had so much to give, who asked for nothing but gave everyone so much joy, so much happiness and so much love? No-one will ever be able to answer this question, no matter how much they try. Maybe, one day, when my time comes, and I get to walk the stairway to heaven, I will find out. Maybe.