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.

What acceptance means to me

My independent boy xx

My independent boy xx

This day last year you pulled yourself up for the first time and stood without mummy’s help. You stood and looked at the floor trying to work out exactly what you’d done and how you’d get down, but not before reaching everything you could on the table and gently placing it on the floor. I thought you would throw it, make a noise and want to repeat until bedtime, but not you. You were curious to work out what you could do, how far you could reach, you always carefully worked out your limitations. Once you had gently placed the television remote on the floor, you looked at it and knew that your body wouldn’t balance on your little legs and you wouldn’t be able to bend down to pick it up. So, when you figured it out, your bum hit the floor and the television remote was once again within your reach. You leaned over, grabbed it and popped it back on the table. Shuffling closer, out shot your chubby little fingers, gripping the edge of the table, once again you pulled yourself up. After you had practiced this several times, your eyes met mummy’s, the pride on my face sharing your own delight. It was time for a congratulatory cuddle.

These are my memories. This was the first time my little boy stood for the first time. I remembered every detail even then, I remember them even more vividly now, ingrained in my memory where no-one can touch them. Mummy had 382 days of firsts with you, 381 days of beautiful memories, until day 382 when death walked in and made the most awful memory. In that single moment, the most painful memory would be etched in my mind for a lifetime. As clearly and vividly that I can remember the first time you stood, opening the curtains to find you staring straight through me, cutting me in half with the eyes that once held your soul is a weight that I carry with me wherever I go. It is no less prominent today as it was back then, if you asked yourself, if you found your child like that, would it ever become less painful?

As every new day begins, it is a new day without you. The pain of reliving this nightmare is re-ignited. As the monotony takes hold, I imagine what I would be doing now if you were here? Would daddy still be coming in to pick you up in the morning, or would you be running into our bedroom? You would be able to stand on your own to brush your teeth, rather than mummy juggling a toothbrush and an excitable toddler. You would be able to pick what clothes you would like to wear and help dress yourself; then my imagination shatters. I collect my jacket and there was your little coat, on your peg, bright red with blue stars. As reality hit me at 100mph I took it down and held it to my face, inhaling your scent. I held it up next to my legs, imagining how tall you might be now. Imagining your excitement of putting it on ready to go to nursery. It took mummy an extra 30 minutes to leave the house, having to hang your coat back on its peg was like leaving you behind. It feels wrong.

To use the phrases with anyone that is grieving, especially a child, ‘moving on’, ‘coming to terms with it’, ‘letting go’ and ‘acceptance’ is like a knife through my heart. I don’t want any of these things. The pain doesn’t lessen, the days get longer, and the nights even longer. How can you move on? How can you come to terms with it? How can you let go? How can I accept it? How can I possibly accept that my little boy died, in avoidable circumstances, how can I accept that this is my life now, how can I accept that I will never see him again, the truth is, I can’t. So my acceptance is ‘i’m not going to accept it’. Yes, I’ve accepted that I’m not going to accept it. That is my acceptance.

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.

 

 

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 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