The true reality of sepsis

Your last journey xx

Your last journey xx

Dear William,

844 days. Today is 844 days since you were taken and 824 since your last journey. A journey mummy and daddy took with you. Mummy wouldn’t let you go on your own so she asked for a hearse that we could travel with you. I remember sitting in your room, looking at the very spot you were last alive, and out the window I could see you coming. I shouted “William’s here”, the last time I would ever shout that, I ran down the stairs, opened the front door and watched as you were driven past. The hearse dwarfed your little coffin. Coffin’s should never be made that small. You shouldn’t be in one. Life is so unfair.

Your coffin surrounded by beautiful flowers spelling out your name, and your nickname ‘Grumpus’. There was a little pillow too, and sat proudly with you on your coffin was a little reindeer made out of flowers to match your favourite teddy and two red roses from mummy and daddy. To see your name in flowers took the breath right out of me. Your name should be in lights, not flowers. It didn’t look right, how could it ever look right? You were so small. As I stood there trying to take it all in, I couldn’t, that was you in there. My baby, My beautiful little William, gone, never to walk up the steps to the front door, never to learn how to ride a bike on this very road where I was stood. At this moment I had no recollection of anything else around me, only total awareness of you. Knowing I couldn’t touch you ever again, knowing you were in that little coffin and I couldn’t see you.

Grumpus xx

Grumpus xx

Mummy rested her hand on your coffin for the longest journey of our lives. The hand that fed you, played with your hair and soothed you when you were upset. Now all I could do was place my hand on your coffin. People were looking as we drove past. I could see the injustice written all over their faces. Their mouths forming an ‘O’ as their jaws dropped, shocked, no coffin should ever be that small, 30 inches to be exact. As we pulled up mummy climbed out and stood there, preparing to carry you for the last time. We carried you in to your own funeral to the words of Gordon Garner’s, Heaven Got Another Angel the words resonating through my body.

Mummy had asked for two seats to be placed right next to you, so that you knew we were right there, right there with you for as long as we possibly could be. Mummy placed your little photo by your coffin so I could see you, but I knew, I knew that I was inches away from you. Some of the thousands of photo’s we have of you played on a big screen. Everyone knew what a happy, gorgeous little boy you were. It was heartbreaking sitting there knowing that there would be no more moments in time making memories like in those photos. Mummy would never get to see you running, mummy would never get to take your hand and help you cross the road, mummy would never hear you speak, she would never hear the 4 words she had yearned to hear from the moment she knew you were coming, “Mummy, I love you”.

Mummy stood and read for you. As I stood there the only presence I could feel was you, only you were in that room. I have no idea how I managed to do that, but I had to, I had to do it for you. Mummy would do anything for you, it was the very least I could do, to be able to stand there and make sure you knew how much we love you. Did you hear mummy reading, I hope so.

And then it was time for the curtains to close. This was it. Mummy would never see you again. You were gone. Mummy was gone. In that moment I knew, I knew that the life had been completely sucked out of me. My heart and soul is with you Grumpus, I know it is in safe hands xxxx

I wanted to write this post because it is impossible for you unless you have had to say goodbye to your child to understand the depth of pain I am experiencing. Time doesn’t heal you know. I will never suddenly wake up one day and think ‘oh, I feel better today’. It doesn’t happen. I miss William today, I’ll miss William tomorrow and I’ll miss William until the day that I no longer wake up. Will the pain of being so far away from him lessen? no, it won’t. If I asked you which one of your children you could give up? Would you feel any better after 1 week, 1 month, 1 year, 10 years.

Society does tend to put you into a category, for the first year people look at you with sympathy. But as you advance into the second people have a certain expectation that you are ‘ok’. By and large I am ‘ok’. But what is my ‘ok’ is, and what is your ‘ok’ is, are very different. I’m aware, tolerant even, of the fact that people don’t understand, and I’m thankful that they don’t, that as days drift into weeks, months and years, we bury William every day. We are expert at wearing the mask. We can hold conversation, we can smile and laugh, and sometimes, especially with Arthur we are genuinely happy. But, William is still missing, William will always be missing. Although time gives us the ability to practice, practice being ‘normal’. Be under no illusion that there is not one single day that we don’t cry, that we don’t wake up longing for him. Simply, I miss him with every breath I take. My arms yearn to hold him, to feel the weight of his beautiful little being, to hold him close to me. To watch the gentle rise and fall of his chest as I watch him sleep. To be able to reach out and physically touch him, for real, and not just in my dreams.

Sepsis did this.

Sepsis, the ‘silent killer’. Sepsis sapped the energy from my life and plunged me into a place of silence. Sepsis may be silent when it creeps in to your life, unsuspecting, indiscriminate, and all-consuming but the silence to follow is deafening. William’s life was silenced, silenced forever. There will be no babbling, no first words, no ‘mummy, I love you’s’, no more crying or laughter. The silence that sepsis forces into your life is the most powerful scream. A guttural, earth shattering, animalistic cry that no one can hear, just you, in your head.

You see I didn’t know what sepsis was, it seems hard to look back now and believe, truly be able to tell myself that I didn’t know what sepsis was, now I seem to be equipped, chapter and verse on one of the UK’s biggest killers. How did I let my little boy down? Why didn’t I know? I should have known. But I didn’t. You can’t sugarcoat the truth that there are millions of you out there who don’t know about sepsis. You can’t sugarcoat the truth that without the knowledge you’ll be able to do anything about it. Simply put, today, there will be other families torn apart by something they didn’t know about. Families who will question their thoughts and actions for a lifetime, not being able to do anything about it, not being able to control it and forever wondering why they didn’t know. And forever feeling, despite people’s protestations, that somehow it’s their fault.

When William died, I didn’t know what to do with myself. I didn’t have a little human to pick up, to play with or cuddle. Every day I would thank God for William’s life. Every day I would hold William close and thank him for picking me to be his mummy. Thank him for giving me perspective, thank him for giving me love and thank him for giving me life. A life lived with no boundaries, that is limitless and endless. William taught me to be free. William gave me this without ever speaking a word. Sometimes there are no words for depth of feeling, emotion or reason. Sometimes life can only be conveyed with actions. When William died, I lost my window to freedom, I lost my boy, I lost a part of my life. How was I supposed to love, what was I supposed to do with this fire in my chest? Today I have the answer for that. The answer to that question is ‘this’. This is what I’m doing with that fire in my chest, the love with no place to go. I’m giving it to you.

I don’t know why or what I expected by sharing William with you. What I expected from talking so publicly about his life but also his death. It is painful, why did I do it and why do I still do it. I didn’t set out purposely to help anyone, I shared William because I needed to rescue myself, rescue myself from this silence. I needed to shout, I needed to share, and I still needed to love my little boy. I still need to be his mummy. So, very selfishly I started talking and a world opened up. A world in which I was still able to be William’s mum. I do wonder every day how many parents there are out there whose children have been silenced by sepsis, and how many children, children who’ve lost their precious mummy or daddy. How has sepsis changed their voice? Irreparably I imagine.

Did you know that this week alone a whole classroom of children will be silenced. The largest passenger plane, carrying 840 adults, will be wiped out, just this week. Knowing this really hurts, knowing that some of these people are in the position I was in on the 13th December 2014, a position of ignorance. Not knowing what nightmare is entering their lives. The UK Sepsis Trust desperately want to launch a national public awareness campaign for sepsis, and I desperately want them to as well. Did you know that with this campaign, with better knowledge 14,000 people could be saved? William could have been saved.

I have pondered over whether to show you this photo, this was taken a couple of hours after William had passed away, but he is still my little boy and this is part of our lives. This is what grief really looks like. This is what sepsis does.

The true face of grief xx

The true face of grief xx


www.justgiving.com/sepsisunited

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