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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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

Dear Arthur,

Today you turn one. A day that when you were first placed in my arms I never thought we would make. With every day passing filled with so much anxiety that you are on loan, that after day 382 we will have to hand you back, like we did with your big brother William, it felt like we would never reach this milestone. I have learned from losing William that I must manage my days and hours in bitesize pieces. Never looking too far ahead. A whole year seemed impossible back then. But here we are, we did it. You did it.

You my darling boy were born out of hope in the midst of grief. An innocent little boy with absolutely no knowledge of all that has happened before you. I have tried so hard to make sure that you have never witnessed mummy crumble, I don’t want you to be scared or worried about why mummy is upset. The time will come when we tell you that you have the most beautiful big brother, a brother who lived before you, a big brother that you will never meet but a big brother who is with you with every breath that you take. You see William’s photos all around you, you’ve watched mummy on the television talking about him, the time will come, but slowly you will get to know him.

But, you are you. You are your own little person. The most independent, determined and head strong little baby I know. Some say they wonder where you get that from…I don’t want you to grow up in your brothers shadow. Despite the attention your brother receives, it is YOU who bought us light out of suffocating darkness. You have been the reason that I have put one foot in front of the other. You are the reason I get out of bed on the days when life seems impossible; because do you know my little man, YOU saved my life. Some say that your big brother has saved hundreds, if not thousands of lives because he has given me the passion to campaign, but it was YOU that gave me the life to continue. You are part of this incredible journey. You are responsible for mummy taking a completely different path.

There was a time when mummy couldn’t bear to think about the next ten minutes of being alive. There was a time when mummy tried to take her own life; at the time believing that I could never exist without William. Had it not been for your daddy, mummy wouldn’t be here. There was a time when I couldn’t move, dress, speak coherently, or even think. I remember this time so vividly. A time I don’t wish to forget about, a time that is part of this indescribable journey of survival. It is a painful reminder of how many steps I have taken since then. They say there are five stages in grief, denial, anger, bargaining, depression and acceptance. I would say I have experienced some of these things. Not necessarily in that order. But the one thing I haven’t done is accept it. I don’t think I can accept the unacceptable. But during the most insufferable days when life has felt too much of a challenge I started to realise that the one thing your brother wants is his life. Who am I to waste the one, most precious gift that was robbed of him? I never realised this before you came along, you gave me the ability to see that as much as it’s okay to not be okay, it’s also okay to be okay. As they say the past is in our heads but the future is in our hands.

You have taught me that it’s okay to miss William whilst being able to love you too. You have taught me that it is okay to pine for William whilst being happy that you are in my arms. You have taught me that it is okay to be sad that William won’t reach the milestones that you will reach. As much as your brother floored me with the most overwhelming love, you have taught me that it can continue, for him AND for you. You have taught me that it is okay to live. You my darling boy, have lived on this Earth for 365 days and you will soon be older than William was but your innocence, your total, unrivaled, uninhibited love is something that I feed off daily, something that keeps me going and something that allows me to realise that you and William share a bond that is entirely unbreakable.

You are his and he is yours. You are both mine, and I am both yours, always.

Happy birthday sweetheart xxxxx


www.justgiving.com/williamoscarmead

My worst enemy is my memory…

William would be four this year. We would be planning his transition to pre-school. Buying him his first little uniform. We would be watching him play and encourage his little brother, perhaps having a calming effect, perhaps feeding his boisterous side; we will never know. We would have to keep reminding him to be quiet, be careful not to wake your little brother. So many things that we should be doing, but we’re not.

Everyday is full of moments, where we are stuck in a time, a time where life stood still. The only way I can explain what it is like to live with losing a child is like being on a train. You can see life, almost reach out and touch it but you have to mind the step. There is something permanent between you and it. Sometimes you sit, motionless from behind a pane of glass, taking in all that is going on around you, sensitive to your surroundings, hyper-sensitive, noises, colours, movements, proving all too much. Other times you sit back and watch it whizzing by, knowing that you can’t get off, you are in transit, your world is moving, but you are stationary, perfectly stationary. I feel as though I am a ghost. I can see in, but people can’t see me.

Sometimes I’m strong enough to stand and get off at the stations. Step over the gap. Feel the rush of air in my hair. Be a part of life. I think taking part gets easier with time, I suppose more experienced with the grief. Perhaps recognising your personal cues, noticing subtle changes in your mood, your  motivation, knowing when rough times are coming, eventually you learn that your train is waiting, all you have to do is get back on it when your knees buckle. And they do buckle. Sometimes I have a bad week, and I put one in front of the other just for one solitary ‘good’ day.

Every time I sit in front of a camera and talk about William, about his death, about how much it hurts to miss him, it takes days, sometimes weeks of sitting in my carriage on that train to prepare. My eyes shut, feet firmly rooted to the floor, preparing. Preparing to relive, preparing to reignite that fear, those emotions, and go ‘there’. But it doesn’t quite compare, it doesn’t even come close to what I had to endure today.

You know when you have children and all of a sudden a switch is flicked over, it is no longer about you, but this tiny, fragile, human being you have created, and the FEAR. People try to explain the fear to you, an emotion like no other, a feeling of complete helplessness, like you are living in constant dread that something bad is going to happen to your little bundle of joy, every time the phone rings and it flashes up ‘nursery’, you fear the worst. Every time they step outside, within 3 seconds you have visualised every possible option of what could go wrong. The cars, falling debris, is there anything they could potentially trip on, eat? anything? maybe a piano might fall out of the sky and land on them? irrational, I know, but we have all been there. That feeling of not having total control over our little ones, even worse knowing they have no fear, leaping around the front room like they’re in mortal combat, but what we see is mortal danger. Now imagine all those fears being realised. That moment, when completely out of your control, their life is taken, snuffed out in one single heartbeat, not because you put them in harm’s way but because those that were supposed to relinquish the danger, increased it. Because their incompetence led to your child taking their last breath at the tender age of one. That fear is no longer a fear, but reality.

Now I know, I know what it is like to live the unimaginable, the pain that just cannot be expelled. I know what it is like to live without my child, I know what it is like to have stretch marks, but no baby to cradle in my arms. I know what it is like to go in to hospital with my baby and to walk away broken, leaving my baby behind. I know what it is like to wake every morning, knowing I will never see, hold, touch, smell, kiss or soothe my baby to sleep ever again. Ever.

Now imagine living like that and then adding another baby into the mix. All the fear that I experienced first time round with William is now tangible, it is no longer fear to me but a plausible, possible outcome. It is almost an expectation. In 52 days Arthur will be 382 days old, the age William was when he lost his life. I feel completely and fully committed to the belief that Arthur is on loan, that in 52 days he will be taken away, and it is soul-destroying. No one can convince me otherwise, no one can assure me that Arthur won’t die, no one has that power. No amount of counselling, EMDR, mindfulness, yoga, meditation, writing, talking or other form of therapy will make me feel any differently; and if Arthur reaches 383 days old I am of the belief that it is borrowed time.

Arthur is now the same size that William was, he sleeps in the same positions and like most infants is living with an insufferable cold. Par for the course when they start nursery, multiple children together is like a germ fest, but you can’t stop them living, socialising and growing up. Arthur has been suffering with a cold for nearly four weeks now. It has been worse at times and I have taken him to the doctors on several occasions. I knew that it was viral and not bacterial but I feel reassured knowing that his throat, ears and chest were clear. Towards the end of last week his little cough had become worse but during the night he became a little wheezy, and the next morning it seemed worse so we called 111. We saw a doctor and he was prescribed antibiotics. Arthur napped at lunch time but when he woke he just didn’t seem himself and he had a temperature. We called 111 and they sent a paramedic. This paramedic determined based on Arthur’s observations that an ambulance should come to take Arthur to hospital. Arthur’s temperature was 39.1c, he started to vomit and his respiratory rate was double what it should be. He was just not himself at all.

I was already panicking and experiencing flashbacks from the paramedics being in our front room. The big, bright yellow wagon parked outside, just like when William died, blocking the road; a paramedic car too. It just haunted me. The equipment, the vocabulary, the dark green uniform. I knew Arthur was not seriously unwell, I knew he was ‘safe’ to some extent, but what I wanted was for them to go and revive my other baby, who I imagined to be lying on his nursery floor, dead. it took all my might to convince myself he was not there. The mind is a dangerous and powerful entity. You may not see it on the outside but if you could just see inside you would see torment.

Every single second of being conveyed to hospital in an ambulance was agonising. Cradling my little baby, one who looks so similar to William, sat on the same trolley’s, in an ambulance that looked identical, on the same route, the same visuals, the same sounds. As I sat there cradling Arthur I closed my eyes, and I smelled his hair, the same, sweet strawberry smell as William. Knowing that Arthur was safe, I wished and prayed so hard that the tiny little poorly baby I was cradling was William, that he was alive, that what happened on the 14th December 2014 was a nightmare and I was now waking up. But it wasn’t.

I will never wake up from that nightmare, but what is certain is that everyday there are triggers; reminders that force me back there, and I don’t want to go back there, but I have no choice. You see, living the way I live isn’t a choice, it is something that I must bear, I’m fed the tools with which I must rebuild my life. It is not how I want it, nor how I planned it. It is something that changes daily and no matter how much I fight grief I cannot change it. I must embrace all the changes that each day brings. I feel safe in the knowledge that with every step I take it is one step closer to my little William.

One Step Closer…


www.justgiving.com/williamoscarmead