Life hurts more than death

“Death is not the greatest loss in life.
The greatest loss is what dies inside us while we live”

In the end, it’s going to be ok, if it’s not ok, it’s not the end. That’s the problem. There is no end. There is no proverbial light at the end of said tunnel. It is just a tunnel of darkness. A tunnel which feels like the inside of my head, my voice bouncing off the walls with no-where to go. The words slowly echoing into silence. And the silence, the silence is deafening.

I have never been a defeatist person, I’ve always tried to achieve goals that are perhaps slightly out of reach. A challenge. William was my biggest achievement, but he wasn’t a challenge. He taught me that in life the biggest achievement is to love and be loved. The type of love you experience only when you have a child. The bond that love creates when this tiny perfectly formed being is passed to you, your own child, your own flesh and blood, grown within your body and part of you is so magical, it eclipses any other feeling of euphoria you think you have experienced. William was a miracle, my miracle.

My first cuddle xx

My first cuddle xx

Every new day brings with it a different emotion. I get out of bed already angry, angry because William should be here, angry at the situation, angry because there is nothing I can do about it or feelings of guilt, gnawing away at me, why should I be here when Grumpus isn’t? Feeling totally hopeless and knowing that nothing will make me feel better, knowing that tomorrow won’t feel any different. If you asked me if I really wanted to feel differently, my answer is no. I don’t want to feel ‘better’, I want to be free. I write to purge the thoughts and feelings in my mind, but it does not free me from this fog.

William taught me love that exists without saying I love you, love that is felt not heard, love that silences any room with one glance, love that is so tangible it bought me to my knees. Then death walked right in and stole him from my arms. Grief instead brought me to my knees as I stood in front of his tiny white coffin; but love made me get back up, love forced me to stand tall, death has no place to come between me and my boy. When I carefully picked William up, sat down and cradled him in my arms, I was home, where I belonged, where William belonged. There is nothing, absolutely nothing that could possibly pierce that love, not even death.

No matter the depth of grief the love doesn’t go away, it doesn’t disappear or fade, it continues to grow, just as it would if he were in my arms. Death is not a barrier, it is an obstacle but death no longer frightens me, I do not fear it, living without William scares me. When my wings take flight, I will overcome grief, I will rise above the relentless sadness and pain, and I will be free. Free of this life without William. Free to be with my boy for eternity.

The Blame Game

My Sleeping Angel x

My Sleeping Angel x

Each day it seems to get slightly easier to function, but emotionally harder to cope with. As the Sun rises every morning the same thoughts go through my head. How can it be possible to feel worse than I do right now? One thing for sure is that tomorrow will have that edge.

It feels like two parallel worlds, the logical one and the emotional one. The logical one functions okay, the emotional one doesn’t.

Each day I think it’s a particularly bad day. I can’t think straight, my thoughts are muddled and I seem to be jumping from one awful thought to the next. I don’t know why, but what I do know is that I feel total despair, the hardest thing is knowing that the one thing that could make me feel better, I am never going to have. There is no hope for tomorrow, only more of the darkness. The physical obstacles that plagued me several months ago are easy to overcome most days but with less time spent on the effort to get out of bed, the effort to get in the shower or the effort to go to work, I have more time to contemplate William’s death.

The logical aspect of my mind tells me it’s not my fault, in my very black and white mind, which is no longer so black and white, I replay the last few months of William’s life over and over again. The appointments, the cough, the vomiting, but most of all the last few days of his life. William was poorly at nursery, so I called and arranged an emergency appointment. They told us to give him calpol, nurofen and to keep up his fluids, I did that. When I thought there was no improvement, I again called for help and guidance, I followed the help and guidance. Later, I was reassured it was probably a “viral infection, likely to get better without treatment” I asked about every detail, I questioned his every answer. I was reassured I was doing the right thing. How was I supposed to know it wasn’t the right thing.  Cue emotional mind….

I do nothing but question and compare myself to another mother, would another mother have made a different judgement? Would another mother have taken their child to A&E? Would another mother have noticed something that I didn’t? I should have done this, I should have done that. I should have said this, I should have said that. The self-destroying questions are never-ending. Cue logical mind…..

I know for a fact that all of those questions are based on hindsight, the unbearable foe. The truth is if I received reassurance from different health professionals. I am not a doctor, I could never have known what was occurring in William’s body. When he was poorly, I did the right thing and took him to the doctors to be examined. I was extremely thorough in my explanations and I followed all the guidance and advice I was given. I took William to the doctors numerous times and gave them ample opportunity to diagnose his cough prior to even contracting pneumonia and sepsis. I trusted their diagnosis. Cue emotional mind….

Regardless of anything, he was my little boy, I love him more than anyone, I know him more than anyone, and I would have and still would do anything I could to bring him back, but only mothers can know, and only bereaved mothers can truly know the overwhelming burden of blame.

 

 

 

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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.

Invisible mother

 

William, 10 months old x

William, 10 months old x

On Sunday I went to the beach with my nephew Rowan, he is 6 months older than William and turns 2 next month. Standing at the water’s edge, with his toes curled up in excitement, he would steal backward glances to his dad to make sure he was safe. When the waves had receded he would throw his ball and run away, stamping his feet from side to side, impatient for his ball to be returned by the tide. William would be walking by now, and I’m certain would be playing with his big cousin, both working each other up, both screaming in glee at what seems a tidal wave to a small person but gentle breaking waves to me and you. The magnitude of William’s absence overwhelming. To watch the way that Rowan would wait for his dad’s words of reassurance, the trust so deep-rooted, Rowan hanging onto his every word.  The bond so inextricably woven into their eyes. I miss that. I miss having a little person being unconditionally dependent on me.

There was not a moment that passed without me thinking about what William would be doing, would William like the water, what would he be thinking. It’s moments on the beach that drive home the loss. Other parents playing with their children, building sandcastles, exploring rockpools, I want to do all of those things with William, but I can’t. To everyone on the beach that day I was a twenty something woman taking pride in observing her nephew overcome his fear of the “bubbles” getting closer. Edging a little bit closer to the waves with every throw of his ball, being careful not to let the “bubbles” roll over his toes. After all, it was a Sunday, the weekend, surely if she had a child they would be with her on the beach. The ‘people watchers’ who’ve decided that Paul and I are a childless, young couple, enjoying our weekend off. I know I am a mummy, but I almost want to broadcast it to the world, a big sign above my head which explains in big bold letters “I am a mummy too, I didn’t choose this, my baby is in heaven, we are a family.”

It is very hard to distinguish between love and grief, because they are one of the same thing. Grief is all the love you want to give but cannot give, the more you love someone the more you grieve. The happiness and joy love brings turns to sadness and despair when unspent. Grief is just love with no place to go. Missing William and grieving for William is not about not moving forwards or living in the past, it’s about me loving him in the present.

The moment those words were spoken “I’m sorry my love, but he’s gone” just like that, it was over. William was gone. In that moment, my soul died too. Leaving behind a broken shell to walk this earth. I feel like I’m stuck in purgatory, somewhere between heaven and hell. Since losing William I have read a vast amount online from similar bereaved parents, not wanting to go on, not knowing how. Finding that their surviving children, the only reason to put one foot in front of the other. Some of us in this club don’t have other children, trying desperately to find another reason amongst the pain to forge on an impossible task. My only drive is to get to the inquest, to be William’s advocate, to be William’s voice, to not just tell people how losing him has impacted our lives but to make them feel it, feel it for just one moment, the enduring pain that we feel, that we will be feeling for a lifetime. Beyond the inquest is a black abyss for me, not wanting to stick around the most desirable choice, to be reunited with my baby again. See, it’s very hard to understand these feelings, unless you’ve felt them. Some may say that taking ones life is selfish, but step back for one second and think; it is selfish to ask me to endure a life sentence, a life of pain with no desire in order to save the heartache of others. What you are asking is ‘please put up with your pain, because if we lost you, our suffering would be unbearable.’ To be there for me, to listen, to love, to help guide me, and sometimes just to know that you love me and that you would miss me is ok. But to say it’s selfish is not something anyone else can judge. You do not feel my pain, you do not feel this pain. You do not have to live through the agonising seconds, minutes, hours and days waiting, waiting for this to all be over.

I’m not asking you to accept it, to like it but just try to understand it. Suicide is the most significant part of my care plan. Knowing that I can do it tomorrow, discourages me from doing it today. My get out clause. My safety net. I know this will sound alarming to you, but try to understand. If you don’t want to know the real answer about how I am, it’s probably best not to ask.

I do not want to hurt, I do not want to die, I did not want William to die. It would be a waste of my life, but it was also a waste of William’s life. I know all of this, but mostly I know that I cannot live without my beautiful little boy. I did not choose this, it has been chosen for me.