My way of being Williams mum

“Parenting a child that isn’t here is infinitely harder,
than parenting a child that is”

When William died I can remember coming home for the first time since I had carried him out of our house when he had passed away. What I came home to was silence, but that silence was so deafening, the silence pierced every thought and I wasn’t able to escape from it.

William was still wholly dependent on me when he died. He was only one. We had gone from a flurry of nappies and being late for everything to silence and having nowhere to go.

The first year after William died was pure survival, just to exist was difficult, to exist in a world that William no longer lived in. Every single second, minute, hour and day was painful. Physically painful. I had to survive to find out what had happened to William, I had to endure an inquest, I had to hear those words ‘with better care William could have and should have survived’. If it wasn’t painful enough already, that twisted the knife that was permanently lodged in my heart.

When William first passed away I lost count of the times that people used the phrase ‘time heals’. Well-meaning people, not quite knowing what to say, trying their best to help, to say something, anything. At the time my response, perhaps not out loud but definitely in my head was that nothing can ever heal the death of your child; and I still stand by that. Time doesn’t heal but it does allow you to learn how to live again and I guess in a way that is healing.

As the time passes though you feel isolated as if you are in a different life from everybody else. When William first died my whole world stopped, and so did everyone else’s around us, but although tinged with sadness, people’s lives inevitably return to normal. They had to work, had their own families to look after, whilst we were just stuck. For the first-year people will look at you with that tilted head and enquiring face, taking extra care with how they ask how you are but as time passes greetings return to normal, well the way they were before William died. They stop asking how you are, genuinely wondering about how things are to fleeting acknowledgments.

After a while I had a stock answer, “yeah I’m ok, yano” and do a little tilt of my head, the conversation quickly changes to something trivial, something that is happening in the now. I’m okay with this now. Every time that I bump in to someone I don’t want to have to say well actually, when I woke up this morning William was still dead and I’ve still got to endure another day without his cuddle, his smile, his touch, his everything.

Dead.

That word, the word that everyone is afraid to use. A cold, hard, definitive word that no one likes to use. It’s strange because when William first died, I would tell people that he was dead, but after a month or so it changed to much softer phrases such as passed away, died, fell asleep, you name it, anything to avoid that word.

People are afraid of death, people are afraid of talking about dying, death and the dead. I’m not quite sure why. Maybe its fear, maybe its ignorance of not knowing what to say in response, but whatever it is I find myself softening how I talk about William’s death so as not to make the other person feel awkward. When I talk about William’s death on a pre-planned platform, such as the recent HSJ Patient Safety Congress it gives me the arena in which to express the cold, stark nature that his loss represents. I do wonder perhaps without the sepsis campaigning where my mental health would be. For me I find that campaigning is my way of somehow being William’s mum in the present, here and now.

When he died I had no nappies to change, no bottles or food to make, the mounds of washing soon depleted. In fact I didn’t wash William’s clothes that hadn’t already been washed. There was nothing, the investigation into his death soon took up most of my time, but once this had, thankfully concluded there was a deep chasm in which I needed to ‘do’ something. This is where my campaign journey began, my desire to ensure that no other parent has to endure the indescribable pain of losing their child or a child that has to lose a parent when it could be avoided.

Campaigning has helped me, it has been my way of grieving. It has not just been a time investment for me, but every time I stand up and open up my soul, it is an emotional investment for me. The moment I say ‘thank you for listening’ the emotional hangover starts. I think to be honest the part of me that I can no longer give to William, I give to others. It helps me and I hope it helps them.

My most important job will always be mummy to two beautiful boys.

William and Arthur.


www.justgiving.com/williamoscarmead

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Sepsis and Me

I have a very strange relationship with sepsis. Ultimately it is what caused the most devastating loss in our family. It is what robbed my first-born child of his life. I didn’t even know what it was and hadn’t even heard of it before William’s death certificate was presented to me. Now I know so much about it that it seems impossible that there was ever a time when I didn’t know that it existed or that it was an integral part of my life.

You would think that because sepsis stole the life my of one-year old baby that I would never want to let the word roll off my tongue again but it is what consumes my life on an almost daily basis. It is something that I cannot let go of. It is something that I have to speak about and it is always on my mind.

I work for the UK Sepsis Trust but to me it doesn’t feel like a job. If I didn’t work for them I would campaign, I would blog, I would educate the public and health professionals about sepsis and the reality of what it can do. Sepsis is an integral part of my life that is unavoidable, perhaps not as unavoidable as William’s death. William couldn’t avoid it and neither can I.

When I talk to health professionals about William’s death, about those horrifying moments that I found my lifeless child in his cot, rigor mortis having taken over his fragile little body, the words catch in my throat. Reliving it, retelling it and recounting every single painful moment is almost like a punishment, dipping myself back in to that moment. I invest so much emotionally when I talk. But it is not something that I can escape from. I could of course choose not to talk about it. I could choose not to revisit, but these thoughts and those memories live in my mind, they are part of my make-up. As much as William’s life is made up of the most wonderful memories, William’s death happened too. It is part of my life and it is what has redefined me.

I am always asked when I arrive at a talk or conference whether I get nervous. I don’t, not really. I don’t have butterflies in my stomach, I don’t have sweaty palms and I don’t feel any sense of anxiety. After all, the subject I talk about is my life, I can’t get it wrong. It’s not a test and no one is judging me. Something that every parent wants to do is talk about their children. Their pride and joy. I cannot talk about William’s latest achievements or what he’s up to. I have finite memories that I can recall, there will be no more memories to make. So, in order to talk about William, I talk about his death, because that is also part of his life.

Sometimes I get messages from people, saying that because of a talk that I’ve delivered, or a blog I’ve written or a video I’ve shared that they heeded my advice and due to that their loved one was diagnosed and treated successfully for sepsis. This warms my heart and for every story, every child, every life it still gives me goose bumps and it still makes me cry. I cannot help but feel that I wish there had been a ‘me’ several years ago when William was poorly.

I know that whatever I do William lives on in the hearts of the lives that he’s saved. I cannot bring him back, if I could, I would. I have not accepted William’s death, how can you accept something that is unacceptable, but what I have done is made peace with myself that one day I will be with him again. I don’t know how, I don’t know when, but I know that it is but one heartbeat and one breath away.

I haven’t just seen the devastation that happens when sepsis enters one’s life, I live it, I breathe it. It is what tore my family apart, it crept in to my son’s life and it was what stopped that golden heart from beating. I will not forgive it, I will not give in to it. I have embraced it, I implore it, I share it, sepsis forms every part of my way of being William’s mum. If I can help just one family from enduring the pain that we live in, then I’ll keep sharing, I’ll keep talking, I’ll keep telling sepsis that you might have won the battle but you most certainly have not won the war.

Love prevails. Always.


www.justgiving.com/williamoscarmead

I wasn’t there and now you’re not here

I’ve sat here and just stared at the screen not being able to find the right words to write. The screen saver comes on, your face, I lose myself in those deep and loving brown eyes and I realise there are no right words. There are simply no words.

I’m struggling so much right now, as the sun sets on another day without you I wonder how many more sun sets I will witness before I get to hold you again. If only I knew, if only I was able to mark the days off on the calendar with a big Red Cross. Maybe God knows, Sometimes life feels like a punishment. I feel so cruel and guilty saying that, in part due to your little brother, after all, how ungrateful is it to not want to be here when your little brother is here? But it doesn’t work like that. I’m torn, irreparably torn. Forever divided between two places. Here and there.

The happier my day becomes the more sad I feel. How is it possible for these two parallel worlds to exist concurrently; how is it possible to feel happy but so sad all in one. It’s terribly confusing. As we prepare for your little brothers baptism next Sunday I just can’t help but feel laden down with your missing presence. It’s not something I want to put to one side, it’s not an emotion I wish I wasn’t feeling. In a way I want to feel it, I want to suffer, I want to hurt, I hurt for you, I hurt for all that you are missing, I hurt that you don’t get to grow, that you no longer get to witness the sun rise and set.

You would be four years old now, approaching your first year of school. I talk often about the boy that I think you would have become. Quiet, intelligent, calm and loving. A little boy with so much depth, you already had that. I would lose myself in those big brown eyes, your way of loving, when I looked in to your eyes I felt an overwhelming sense of home. I could feel the love, it was tangible. Your curious and quiet nature meant that we were able to spend many tender moments together, I will forever be grateful for these. My body aches for these moments again. I am full of questions and wonder about the little boy you would have become.

When I first found out that I was pregnant I was scared. I was scared that I wouldn’t be a good enough mummy for you, that I wouldn’t know what to do, that I wouldn’t know what your needs were. I had no need to be scared or nervous, you made being a mummy easy. After you died I spent many hours with psychiatrists, trying to fix me, trying to convince me that life was worth living. It was during these sessions that one particular psychiatrist tried to understand just why I couldn’t bear to live without you, as opposed to trying to convince me that it was possible. He understood that all of my life, like most people as we grow up we learn from those around us, society, family and friends lay expectations in your lap, as we grow into adults we feel as though we are finally getting our freedom, but we’re not. The moment that we witnessed the world around us and all the harm that it could do is when we lost our freedom, our innocence.

Growing up I was fiercely independent. I have always felt that I am my own responsibility. I have always felt that I have only ever needed to rely on myself because at least that way the only person who could let you down was you. I have always kept something back, been wary, never giving my entire being to someone, that was until you came along. When I could feel you growing inside me, when I could hear your heart beating I just knew, I knew that this is what I was waiting for. I was waiting for you. I invested physically and emotionally in you. I knew that you would be all that I ever needed, I knew that you would never let me down, I knew that you would always be with me.

Call me a cynic but I have always lived with the thought that I was only round the corner from something going wrong. Inevitably, in my life, it has. But when I had you I knew that despite all that I have been, all that I have done, I got you right. I could be everything you would ever need. Only two weeks before you died I put you in your car seat and cried, why? Nothing in particular, nothing set me off, I just couldn’t believe how lucky I was to have you, I knew that despite everything, no matter what happened, that I would always have you. It would always be me and you. Then you were gone.

I can’t help but feel, despite the failings in your care, the many apologies, that I failed you. I had one job. People joke about managing to keep their kids alive today, I couldn’t do that. I couldn’t protect you, I couldn’t save you. You closed your eyes, you slipped out of consciousness and you took your last breath, your beautiful heart stopped beating and I wasn’t there.

I wasn’t there and now you’re not here.

Today I have travelled nearly 400 miles to deliver a talk about your life, and also your death.        People often ask me how I manage to retell the moment that I found your lifeless body, how I tried in vain to pump life back in to you, how I laid, cheek to cheek and begged you to wake up, knowing full well that you never would. It is painful, it is hard, with every word that I speak I know that I am doing the right thing. The gaping hole that your life left cannot be filled, but somehow I have had no choice but to continue, and I suppose this is my way of being your mummy still, until we meet again my baby boy.


www.justgiving.com/williamoscarmead

Life after loss

I’ve not written for a very long time. I write often, in my mind, but sometimes I just can’t muster the strength to purge the words from my soul. This child loss game, I say game, it feels like one, constantly rolling the dice never knowing the outcome, day after day, roll after roll, it’s like one long game, not an enjoyable one and there are no winners. Waking each day and wondering whether today your piece will move forwards or backwards is a complete loss of control. That’s what happens when your child dies. You no longer have control.

I think after three and a half years life has a sense of ‘normality’ and we do, we do have some sense of normality. We had no choice. It was either sink or swim. At times I’ve wanted to sink and I’ve come very close. But Arthur forced me to swim, he is very much a protective factor in my life, a reason to live, hope, a future. For all the light that he brings to my life he cannot take away the turmoil that I feel inside. After this much time it is a deep inner longing, it weighs heavy and no matter what you do you cannot shake it off.

There is a common belief that anniversaries, birthdays, mothers days are the hardest; and they are hard, but they’re not the worst. It’s all the small things that grate the most. We took Arthur to the park recently, he absolutely loves the park, especially the slide. No sooner has he got all the way to the bottom he’s climbing up for another go, on repeat. The absolute joy on his face is irreplaceable, a complete freedom, innocence, joy, his laugh, infectious. It is wonderful. But with every heart stopping moment of euphoria there is a parallel deep sadness that shaves slices off my heart. William should be there helping his little brother to the top of the slide, they should be going down the slide together holding hands, squealing in delight. He should be here.

All I am left with are imaginations. When Arthur is playing in the garden what would William be doing? When Arthur goes to bed would William help me read him a bedtime story? What would they be like in the bath together? I imagine that William would have a calming effect on Arthur. I equally think that Arthur would drive William bonkers. William so calm, thoughtful, his every move a considered one. Arthur is the opposite, his zest for life oozes from everything he does, he barrels in to everything head first, head strong and determined. The two boys couldn’t be any more different, but the bond is there, the mannerisms are obvious, their likes and dislikes, and this is what hurts the most, I’ve lost my son, Paul has lost his son, but Arthur has lost his brother. He will never meet him, play with him, cuddle him, play fight with him, he will never know him. I feel desperately sad knowing this, and it will never change.

Child loss is colossal. It didn’t just happen on the 14th December 2014, it recurs every single day, it recurs every time I load only one toddler in to the car, it recurs every time I only kiss one baby goodnight. It recurs every single moment of every single day and it will last a lifetime. William will never start school, he will never graduate and fulfil his dream job, he’ll never fall in love, he’ll never get married or have children; but he’ll also never play on the slide with his brother, he’ll never read his first book, he’ll never confide in his brother, he’ll never be best man at his wedding. I won’t see him grow in to a man and I will never hear him say ‘mummy, I love you.’

Ultimately I am blessed, I am blessed with life, I am privileged to wake up every single morning, the one thing that William wants more than anything is his life, the one thing he cannot have, the one thing we gave him that was then so cruelly taken away. I cannot and will not waste mine. So can you see, every day is a tug of war. Constantly too-ing and fro-ing between here and ‘there’ wherever ‘there’ is.

These days my outlet is weekly therapy, but the sacrifice I pay for not wasting my life and living everyday as if it’s my last is that I internalise everything. The pain manifests itself wearing many different masks. Somedays I find myself very reflective, somedays I am plagued with PTSD, somedays I am frustrated, but everyday I am consumed by guilt. Every. Single. Day. I feel guilty that I couldn’t save him, I feel like I failed him because I should have done things differently, I feel stupid because I listened to people and followed advice. I feel sad for Paul, I feel sad for Arthur, I feel sad that he has no idea about all that has happened before him, I feel sad that one day he will know. I feel sad that one day he will share in our grief, that he will learn about death when he doesn’t need to. I feel sad that I will never be completely here, a part of his mummy that is always missing.

For every happy day there is a sad one, for every smile there is a tear, for every glorious memory there will always be moments that are incomplete. For every moment that I am ok, there will be moments that I am not ok.

So for all of you out there who struggle with your own demons, the only pressure you have is the pressure you put on yourself. Be gentle, go easy on yourself. Slow down, take a breath, step back and remember that tomorrow hasn’t happened yet; so don’t worry about it. And for those of you who see me smile, share in my laughter or create happy memories with me just remember that underneath I am fragile, I am still reeling, I am still trying to understand.

I am still missing him, and I always will.


www.justgiving.com/williamoscarmead

I’m so so sorry mummy couldn’t save you

I don’t ever know where to start sweetheart. It’s been three years. Three whole years that we’ve had to live without each other. Three whole years since I last held your warm, squishy, strawberry scented little self in my arms. Three whole years since I got to whisper ‘I love you’ in your ear. Three whole years. How is that even possible, how have I managed? Simply, I don’t know.

The first year without you was complete and utter turmoil, total and complete devastation. My mind was like living inside a tornado, I was picked up and thrown around at the mercy of my thoughts. It was relentless. Last year I begun to find my feet. Sometimes I was able to put my feet on the ground and feel stable, sometimes I was able to communicate, willingly. I was learning. Learning how to live with your daddy, as two. Not three anymore. We didn’t choose that, we didn’t want that. A complete and total loss of control. I don’t like having no control. Last year I learned to go with the flow. Knowing that I was not able to swim against the riptide of grief, I had to close my eyes, turn on my back and wait for it to set me down again. This year has been strange; ‘living’ has been slightly easier, perhaps because your little brother has given us an injection of life again. He has given us hope, a future, he was one of the greatest gifts you ever gave us. But missing you has got so much harder. I find myself crying more often, I am often sad, not just for myself but for you. I often think about giving up and retreating, I think more often about the injustice of your death, your treatment and how cruelly your life was taken away. I’m struggling quite a bit at the minute, but I know that for every step I take, it is one step closer to you. I think that because the better days have become easier to bear, it makes the bad days even worse. It is like being on an awful roller-coaster that sometimes gets stuck, I have no choice but to ride it out.

I can’t remember what life was like before you were born. It seems like it was a different life. It was a life that I thought I was happy in, content with my lot. I couldn’t have imagined how wrong I was. When you were born you showed me what really mattered. I can remember watching you sleep, feeling utterly in love. A feeling that is difficult to articulate. You were part of me, I was you and you were me. You taught me a love that I didn’t know existed. You are woven into the fabric of my soul. When you died, I didn’t know what to do. How would I love again? How would I ever smile again, laugh, be happy? Life was constantly referred to as ‘before William was born’ and ‘after William died’ like our life had somehow been truncated and completely fractured.

 

Then you gave us Arthur. I was worried, more than worried. What would happen if I didn’t love him like I love you? What happened if I resented him, because he wasn’t you? But you knew. You knew I could be a mummy to two little people, you knew just what mummy needed, like your little brother, you heal my broken heart. I feel incredibly sad that I will never feel complete again, that wholesome feeling that cannot be bought.

You have taught me so much William. You have taught me complete kindness, you have taught me to be compassionate always, to be patient, to love fiercely, you have taught me that no matter where I go, you are with me always, I know that you are mine, and death cannot take that away from me. I cannot even begin to describe how proud I am of you. You graced this Earth for just 382 days, but you changed everything so profoundly. Your love feeds my determination, enables me to live, helps me to put one foot in front of the other,  gives me the strength to somehow fight to try to stop others from meeting your fate. Your love has changed so much, changed so many people, saved so many lives. I know you live on in the hearts of the many thousands of lives you have saved.

But you are not here and I just want you. I want nothing more than to hold you one last time. Forever is a long time. I know that you are just one breath away, one heartbeat, but I don’t know when I will take that breath and wake up with you. I wish I did. I wish I could put a big cross through every day, knowing that I was counting down. What I would give to make eye contact with you once more, to rub my cheek on yours, to feel you in my arms once more. My arms ache for you. They are heavy, my heart is heavy, my head is heavy. The living might get easier but the longing gets so much harder.

I remember the last time I ever held you, before I placed you in your forever bed and closed the lid, I kissed your forehead, I ran my fingers through your hair, I kissed your lips and I rubbed my cheek on yours, and I said “I’m so so sorry mummy couldn’t save you.” This hurts me, physically hurts me. I would do anything for you, and Arthur, give you both all you need, physically, emotionally and mentally, but the one thing I couldn’t do was make you better. I tried so hard to get you the help you needed, despite the apologies for your care, you’re still my responsibility and your life is in my hands. I failed you in the worst way possible. I let you down when you so desperately needed me the most. I tried so so hard.

I love you darling boy. You know. I told you always, I showed you always, they were the last words you ever heard me whisper, “Goodnight sweetheart, I love you.” You knew only love but three years on, the words that still sting me every single day “I’m so so sorry mummy couldn’t save you.”


www.justgiving.com/williamoscarmead