This is my nightmare, you are my dream

“The days will always be brighter,
because you existed.
The nights will always be darker,
because you are gone.”

I just closed your curtains sweetheart, standing at your window, my tears landing on your windowsill as I sobbed my heart out. I lose my breath, my chest racking as I struggle to contemplate that when I turn around I won’t be kissing you goodnight and telling you that I love you. Instead I blow you a kiss at the window, hoping that somehow you will catch it. As always, every evening I tell you that I love you, this I promised you when I first held you, close on my chest, all warm, a tangle of arms and legs. Mummy promised you that she would love you with every ounce of her being, and she promised that every night, the last voice you heard would be your mummy’s, whispering ‘I love you’. Mummy kept both promises. The last voice that you ever heard was your mummy’s, and the last words that you ever heard were ‘I love you’.

The next time I saw you, you were gone. At 08:47am on the 14th December 2014 time stood still; and from that moment and every moment since time has slipped away into oblivion. My world stands still, I feel like I’m in a wreckage. Spread into many pieces, but no matter how hard anyone tries, those pieces will never fit together again, because you are missing, the most important part, the core, my heart, I am an empty shell without you. Just a shadow, a ghost of who I used to be.

Life has kicked me so many times but when you were born Grumpus, I had finally climbed the tallest mountain. I stood there my arms spread wide, my eyes closed, the wind in my hair, looking down on the world knowing that this is what life was meant to be like, what love was meant to feel like. It was euphoric. I never imagined that life would come along with a wrecking ball and swipe me off that mountain, taking with it my life. Leaving behind only memories, wonderful memories but wonderful memories that are enough to break my heart.

Can you remember pickle, when you first slept in your own room, I think mummy was more apprehensive than you. You took comfort from your trusty thumb and Mr Reindeer, your little eyes fluttered as the weight of your eyelids became too much and you succumbed to dreamy sleep.  Mummy was there, and every night after. When I laid you down, kissed you goodnight and whispered I love you, I pushed your door closed, but mummy was at the end of your cot. Watching your chest rise and fall with every breath. Listening to the soft noises you made as you slept peacefully. Mummy would sit and watch you for hours, not wanting to leave, because she knew when she left that she would miss you. Grumpus, I miss you. I miss you so much. I missed you even then, when you were asleep. I don’t know how to miss you. I don’t want to miss you, I want you here. I was in awe of you then, and I’m in awe of you now.

When people say they miss someone, I don’t think they really know what it feels like to really miss someone. Knowing that they are never coming back. Knowing that no matter what you do, you will never feel complete again, knowing that the biggest part of you will always be missing, knowing that your life will never be whole. I do. I know what that feels like. I miss us, I miss our future, I miss life, I miss you. Everything you are. Everything you mean. Love sometimes comes like a dream, and it leaves like a nightmare. This is my nightmare, you are my dream.

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.

 

Dear Grandad….

Me and my Grandad xx

Me and my Grandad xx

Today is your birthday Grandad, so I wanted to send you a very special message. I would be on Skype today, waving to you, and showing you how I’d learnt to say ‘gangan’ and wishing you a Happy Birthday. You would make me giggle and my laughter would fill your house. They don’t have Skype in heaven, I wish they did, because I miss seeing your face Grandad. I really wish I could give you a birthday cuddle and lots of kisses.

You see, I know Grandad, that you never imagined mummy would be able to have me after she had been so poorly, but I was your best surprise EVER. I was your little miracle, and I know how much you love me. I see you crying, crying because I am not there anymore. Crying because you don’t understand why life was so cruel to me, and took me away from the bestest family I could have ever wished for. There won’t be anymore cuddles or photos or new memories. But I’m so glad that mummy took me on my only holiday, on an aeroplane, to come all the way to see you in Spain. I was a really good boy and it was the best holiday ever.

You were so excited to see me, and I was really excited to see you. I got to show you what a good boy I was and you now believed mummy when she told you that I never cried. You got up early in the mornings with me and had breakfast with me everyday. You took me in the swimming pool everyday, you swished me round and round and it was so much fun and when it was too hot to go outside you would sit and watch me play with your slippers. They were much more fun than toys. Especially when you wanted to wear them and I wanted to play with them. A good game, that I always won, because I’m cute. I miss your slippers Grandad.

No-one sticks apple stickers on my forehead anymore or puts doily’s on my head like you did Grandad. You were quite pleased with yourself, mummy thought it was funny, I pretended I didn’t like it, but I did really. We made our own fun, didn’t we.

Naughty Grandad xx

Naughty Grandad xx

My new hat xx

My new hat xx

 

 

 

 

 

 

 

 

Grandad I’m really sad that I didn’t get to make it over to spend Christmas with you, I was going to show you how clever I was at walking, how I’d learned to clap my hands and most of all how I gave the most amazing cuddles. Mummy would have let you look after me, but we both know that it would have been me looking after you. I would have been your little helper.

I really miss you Grandad, I miss us, and I miss what would have been. How special our relationship would have grown to be. You make me proud Grandad, and I tell everyone that you’re my Grandad and that I got the best. So, although I can’t be with you, I’d like to wish you a happy birthday, I miss you so so much and I love you lots and lots. Your little William xxxx

I never said I was leaving,
I never said goodbye,
I was gone before you knew it,
And only God knows why.

A million times you’ve needed me,
A million times you’ve cried,
If love alone could have saved me,

I never would have died.

In life I loved you dearly,
In death I love you still,
In my heart I hold a place,
That only you Grandad, can fill.

 

 

The reality of grief – what grief really looks like

Your last journey xx

Your last journey xx

Dear William,
28 weeks. Today is 28 weeks 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 sit in 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 as I stood there. 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. With daddy and your two nanny’s I carried you sweetheart, I 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 read two poems and a letter that she had written 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, it was for you.

And then it was time for the curtains to close for the last time. 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. After you had been through this, held your precious child in your arms, begging him to wake up. Would you be able to live with it, because I sure as hell can’t. It’s easy to say ‘God only takes the best’ but you wouldnt say this if he’d picked yours. I am falling apart, desperately struggling, treading water to stay afloat, waiting for the right time for mummy to spread her wings and fly away.

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. So you see, please after 216 days, if you had been through this, held your little boy and fought for breath as you cried your life away you would understand that I feel no better today than I did when this photo was taken. In fact I feel worse, this is a life sentence. My life sentence. This is what grief really looks like.

The true face of grief xx

The true face of grief xx