Life is a path: death is a destination

Can you imagine what it actually feels like to not be able to live with yourself. I don’t mean that figuratively but literally. All my life I have been very independent, and when I was told the chances of conceiving my own baby were slim to none, I focused on the practical side of life. Buying a house, studying for a job that wasn’t just a job but a career. I am a very black and white person, the most dominant part being logical, the part of me that has been my core survival. The emotional me has always only had a very small role in my life. That was until William was born. Wow, the intensity of love was frightening, I didn’t know love like that existed and it was all mine. There was nothing that could change it, I didn’t know how I had lived without it for so long. I had finally been born, I was finally alive.

My life it seemed had always been a journey of survival, a survival that relied upon my logical, practical side, a side that had never let me down. When William was sick, I did what I was supposed to do, I took him to the doctors. When I wasn’t satisfied I took him to another doctor, when he didn’t improve I took him back, again and again. In the hours leading up to William’s death I knew something was wrong, and I took him to those that we trust, I walked away reassured I was doing the right thing. The day before William died the niggling feeling, my mother’s instinct was telling me, he’s just not right, so I called for help and advice. Twice that day. Following advice, I was apparently doing the right thing. But it wasn’t the right thing. This I could tell you until I’m blue in the face that William’s death was out of my control, I would trade my life for his, but I still blame myself, I let myself down and I let my boy down.

With hindsight, there’s that word again, a curse word and knowing what we know now that William’s death was avoidable only reinforces that blame is warranted. I know every fine detail of the weeks, months, and those last few hours of William’s life. It doesn’t matter how many people tell me over and over that it’s not my fault, I shouldn’t feel guilty, I wasn’t to know, I did everything I could, the reasoning, but regardless the guilt remains. The guilt is born from what any mother would feel as her normal sense of responsibility for her baby, and the inherent belief that we have ultimate control over what happens to us, what happens to our loved ones and our built-in desire to protect. The despair only magnifies the deep-rooted guilt and makes me feel like a complete failure as a human being, and most importantly as a mother. Existing through each day, resisting the urge to end my life is potentially the hardest fight. A fight I know I’ll lose.

These feelings of guilt creep into every aspect of my day, every thought, intensified by my love for William, my need to close my eyes, go back to those moments and take away his suffering. This is something I have no control over, I can’t go back, I can’t change it but guilt allows me to control the situation I find myself in during every waking moment. I know that the decisions I made at the time were always in William’s best interests. The guilt I know is unfounded, feeling guilty is not the same as being guilty, this is so hard for people to understand. Guilt is all-consuming, made up of despair, regret, incompetence, failure, sadness, and these all form the worst feeling of all, blame.

I feel vulnerable, I am constantly anxious, I am worried, about what I don’t know, I no longer have anything to worry about. I have very little control over any of my feelings, the realisation of the horror that is my life is racked with guilt. My whole body aches with love, now I share my love for William with the world as my only witness. Guilt is the most painful companion to death.

William my sweetheart, you saw me take my first breath as you took yours, I saw you take your last breath, and when I take my last, we will be together. Forever.

Totally lost without you

That face xxx

That face xxx

I’m exhausted sweetheart, exhausted from the constant searching, searching every one of your photos, for a tiny scrap of comfort; but there is none. Sitting on the floor in your nursery, searching for something to touch, something to hold, to smell, to hold close to my heart, hoping that somehow I will feel closer to you. Absorbing myself in the smile that emanates from every photo, it is hard to imagine that it was your mummy smiling right back at you, the other side of that camera. Now, there is no camera lens between us, there is a lifetime.

I feel like I am floating around an ocean in a little rowing boat, a battered rowing boat, guided only by the moonlight, rowing as hard as I can, but I don’t know why, because the boat is filling up with water faster than I can row. I can’t see land. I don’t know where I’m going. It’s getting harder to row, the will power it takes to pick the oars up, the strength it takes to row is overwhelming, the idea of succumbing to the water becomes more and more inviting as each day passes.

The truth is I don’t know how to live without you and I don’t want to learn. Why should I? Is it because that’s what I am ‘supposed’ to do? Because I have no choice? Because the alternative is something people brush under the carpet, but I do have a choice, this is my life, and my choice. Some people say that is selfish, but isn’t it selfish to ask me to endure a lifetime of pain so they don’t lose me. The pain of grief is unrelenting, you can’t take a tablet and hope it’ll ease in half an hour. You can’t put a plaster on it. It is there every second of your waking day, and then when you manage to get some sleep, the nightmares make sure to keep you in the present. Waking up more exhausted than you were when you went to bed.

I stand in front of the mirror every morning and I don’t recognise the reflection staring back at me. What I see is broken, a shadow of the person that used to stand in front of the same mirror. Without you William I don’t feel like I belong, after all you are part of me, the only person to ever hear my heart beating from the inside. An unwavering bond that intensifies with every beat of my heart, but the beating hurts, the memories hurt, living hurts. I miss being able to touch you, hug you, and to be with you, I can’t hug memories, I feel like I’m trapped within 4 walls, every direction I go, life is an obstacle, suffocating and stifling. I miss the euphoric feeling that gripped me on each of your 382 days. Being with you, made me feel 10 feet tall, made me feel free, gave me a sense of belonging. Until I find you again, I will keep searching, and I know that I won’t belong anywhere until I find you.

 

You can’t hug memories

Impenetrable love xx

Impenetrable love xx

My dearest boy, how I miss you. It doesn’t get easier does it, does it get easier where you are? Those sentiments have proven themselves to be empty. Time does not heal, but has become my worst enemy, deepening the heartache and intensifying the pain. Every morning do you watch me as I raise my head, weary from another night of no sleep, my eyes hurt, another night of crying, crying because I just want to hold you my sweetheart. To run my fingers through your silky soft hair, to wiggle your little toes one by one, to watch the edges of your lips curl as you break into a gorgeous smile, and hear your sweet laughter as you revel in delight. What I would do to hold you again.

When you graced this Earth the Sun was brighter, the flowers blossomed longer, and mummy’s life was filled with a love that I never knew existed, it was heaven on Earth. You were heaven on earth. Now even on days that seem warm, bright and sunny there is always a darkness slowly seeping through. The depth of depression is debilitating, the anxiety exhausting, the intensity of love manifests in to what seems like a ball of fire in my chest, with no outlet, my heart aches. Now as I look up into the night sky, seeking to escape from a world with no light, the stars are brighter than they’ve ever been, because I know that you live among the stars.

As time has passed the reality of what life without you is relentless torture. There is no getting used to it, I can’t get used to it and nor do I want to. I have come to realise that my grief for you is mine alone, no one but me feels it, no one but me owns it and that’s because no one but me will ever love you more. All mummy wants to do is climb into your little cot, lay down where you last rested your head for the last time, lay my cheek where your soft little cheek touched the mattress for your last sleep, close my eyes and take my last breath, just as you did, to take the same journey that you traveled on. To open my eyes and to be with you again.

At the end of mummy’s bed, the jumper still hangs there, the jumper that I last cuddled you in, the jumper that you last snuggled into when you were so poorly. Mummy can’t wash it. Your sweet strawberry smell lingers, a couple of strands of your wispy hair still cling on, knowing you touched this jumper, knowing you cuddled your mummy, knowing you sought comfort from me in this very jumper. Knowing that this is the jumper I was wearing when I carried you to bed for the last time. It’s funny isn’t it Grumpus, how one jumper can be so significant. Sometimes I sit and look at it, like it’s a precious treasure, but you see, to me it is. This was what mummy was wearing the last time you ever hugged your mummy in. A part of the most prominent memory I will ever have of you, not a happy one, knowing now how poorly you were, but to me, it is the last time I ever hugged you and that is the most precious memory I will ever have; and no matter how many people say hold on tight to my wonderful memories of you, that’s all they are, memories, that’s all I have left, and I can’t hug memories.

Sepsis – The Silent Killer

The Sepsis Six

The Sepsis Six

I was so drunk on apprehension and high on anxiety that the moment I sat down after the inquest I hit the wall running, at 100mph. The full force of the impact manifesting itself in an all-consuming emotional hangover. In the months leading up to the inquest I had to focus on arriving at the one goal I knew I had to be part of. Representing William, and to be his voice. The enormity of the task that lay ahead of me was overwhelming. I had long since given up trying to deal with people’s expectations. I knew that the only way I would reach that goal was pressure, and the only pressure that was acceptable was from me. Only I could prepare myself for the inquest.

I knew the day would be fraught with tension. I didn’t understand why we were there, and I still don’t understand now. As Professor Peter Fleming said “I think there is a very good chance that his illness could have been treated successfully.” To hear those words made any possibility of healing the wound an impossibility. The wound irreparably damaged. William’s death we knew in our hearts was avoidable but to have those words spoken by a world-renowned paediatric specialist after reviewing the evidence was gut wrenching.

As parents, we are not doctors, we worry, we panic, we ask a million questions but we have every right to. We trust and believe the health professionals that we are forced to rely on. Professor Fleming expressed concern that neither the 111 service nor the out-of-hours GP, had acted on William’s temperature change which had been over 40C on the Friday but had subsequently fallen to 35C on the Saturday, a symptom of circulatory failure, and later we found out, a symptom of Sepsis. We took William to the doctors on the Friday because we were concerned. We were reassured it was “nothing grisly” we followed the guidance and advice we were given. I was still worried and called for help on the Saturday. From the analysis of this phone call, which was played at the 8 hour-long inquest, Professor Fleming said he “was disappointed the ‘algorithm’ used by the 111 service did not appear to have assessed the situation effectively…they are working from a script, not their professional knowledge.” Ultimately, our little boy had been unwell for months with what we were told was “just a cough” in the latter stages he developed pneumonia, this caused sepsis (septicemia).

Who knows what Sepsis is? Who knows what causes sepsis? I had heard of sepsis, septicemia blood poisoning, but I never for one second sat and thought in that last week that William had it because I didn’t know what it was. As parents we had it drummed into us that if our children are unwell, always check for a rash, meningitis, do the glass test, meningitis kills. Every doctor who William saw or I spoke to were always very thorough in checking for a rash, but no-one discussed the symptoms or the possibility of sepsis. We were not warned what to look or check for.  There are several clinical indications for sepsis, one is a temperature over 38C or below 36C and another is a rapid pulse of over 90 beats per minute. William’s temperature on the Friday was 40.1C and his pulse wasn’t even taken. I will never understand, with a doctor’s knowledge, how this was missed. How William’s cough was never investigated and subsequently how the pneumonia was never diagnosed.  Ultimately causing sepsis which took his life.  It is estimated that 3200 people per year die from meningitis, but 37,000 people die from sepsis. I think it’s about time that sepsis should be granted the air time that meningitis has. Parents need to be educated, no more children should die needlessly like William.

We were let down, in the most unimaginable way. It is not fair that William had to lose his life in order to recognise that changes have to be made. What those changes are only time will tell. All I continue to do is just take one day at a time, I no longer pressure myself or set any unrealistic expectations, I’m breathing, that is a huge accomplishment. After all, people can try to imagine what it’s like in my shoes, but no-one can imagine what it’s like being in my head.

Do you have any children?

Mummy and William selfie x

Mummy and William selfie x

The question that I have been dreading since the day that William became forever 12 months old. A very easy question to answer, of course I have a child, I have a little boy, his name is William. But, how can that question be answered without prompting awkward silences? I cannot and would not even imagine saying no, that would be like denying his existence, an intolerable thought that makes me feel sick just saying it in my head. How could I ever say no when all I want to do is shout from the roof tops, that I am a mother, my child may not be here, but he existed, he was part of the same world that you and I exist in today. And that’s exactly it, an existence, an earthly existence. I do not feel part of my life anymore. I feel like I am viewing life from behind a thick glass, I can see, I can hear muffled sounds but none of it is real, none of it is relevant. I can just see people moving from A to B. Getting in their metal cars, driving to work, not really paying attention to what is going on around them, making meaningless conversation about the food you ate and the television you watched the previous evening, undertaking a full day’s work to earn money to pay the bills for the small brick house you drive to at the end of everyday. A brick shell that you pay money for, take ownership of, clean, a place to nurture your family and keep them safe. A place where you make memories, but what is all this worth without those that make these memories so special. As much as I am attached to my home, of course, this is where William grew up, learnt to smile, learnt to laugh and learned to love. But it is also where he died, it feels so empty and desolate without him, but yet it is his home. I no longer feel I belong anywhere, not even in my own life.

It is so easy now to see how life was taken for granted before, since William died I have become incredibly hypersensitive. I am more aware of my surroundings, noticing the tree tops on the way to work, not getting sucked into the monotonous tarmac as the road forges on; were the trees ever that tall? I’m sure I would have noticed that before. There are so many different species of tree on the way to work, I wonder how many? So many different shaped leaves, such a wide palette of colour’s, all merging together to form a sea of ‘green’. Sitting on a cliff top allowing yourself to relax, really relax, allowing your arms to flop down by your sides, the tension to be released from your shoulders, what can you hear? Can you hear the waves? Can you hear the waves bearing down on the cliff? Can you hear the wind? As I sit there and close my eyes and let the darkness gather me up, i am aware of the hair on my arms tingling as they stand to attention. My skin succumbing to the sensation that is goosebumps, a reaction to my surroundings. This is what it is to listen, it’s not simply to hear, but to feel, feel your surroundings. Encouraging your body to let go of your peripheral vision and become part of the world. What does the wind really sound like? What does the wind really feel like?

It sounds relaxing, idyllic, at one with nature. Escapism. Freedom. To me I do not feel free, I cannot escape from my thoughts, my reality, the clarity of mind that keeps reminding me that William is not part of the life I’m viewing. The life that I am forced to be part of. By default I am here. Stuck, trapped. Suffocated. The breath knocked out of my lungs, by the wind that laps at my face as I sit there, no freedom, no escapism, just an annoyance, my long hair hitting my face as the unrelenting wind serves to keep me in the present.

As the date looms closer for William’s inquest. Just a little over 3 weeks. Preparing my impact statement seemingly an impossible task. How can i possibly find words adequate enough to write down, to read, to convey the depth of love for my little boy. Although I sit here and I write now. How can I do him justice. I don’t want people to listen to my words, I want those people to close their eyes and feel my words. I would like for just one solitary moment, for those people in that room to feel a tiny bit of my pain. There are no words for that. I cannot put into words the unfathomable pain that courses through my veins. As each day passes I find myself crying more and more, unable to articulate my pain. My body is tired, weary, the end I know is near.

I have an end date. When I close my eyes at the end of another day I mark off the calendar in my mind with a big black marker. Another day over, another day closer to the time when I can finally close my eyes, and open them with my boy.