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

Two years, life after loss

I can remember so clearly when and where we were when we found out we were expecting you. Earlier in the day I had been writhing around on my bed in agony. My first and genuine thought was that I had another tumour. Having had three ovarian tumours the pain was extremely similar. I didn’t want to believe it was another tumour, as I knew that meant I would have to go to hospital. Normally this isn’t  problem but this particular day Cornwall and most of the UK had severe weather warnings. Many places were under water from burst rivers and torrential rain. Our main road to the hospital had trees down and I knew we would have to go the long way round to even get to A&E. But alas I knew we had to go. Having lost my right ovary from tumour strangulation, and part of my left ovary for the same reason. I knew that if I didn’t catch it in time I would lose the only remaining slither of my left ovary. So your daddy packed me an over night bag and I text my boss to say I was poorly. We bundled into the car, I was in a serious amount of pain, feeling every bump in the road. What normally takes 20 minutes took over an hour but we made it.

Once inside I remember going through all the normal questions and answers. I was being investigated at the time due to an undiagnosed heart condition, so was used to being poked and prodded. After a little while the general consensus was that they would send me for a scan…but…the doctor came back to say…I don’t have a diagnosis for your pain, but you are pregnant. I was curled up in the foetal position on the bed and your daddy’s jaw dropped to the floor. After 8 years and no success we had given up believing that we could have a family and there we were, in the middle of the worst storm Cornwall has seen for years, we were being told that you existed. Wow. Just wow. From that moment it was all about you. You were the one who mattered.

As my stomach burgeoned and I traced my fingers over my belly I could feel your touch from the inside. I have never felt as good about myself than when I was pregnant with you. My body was your home. Everything I did would affect you. I had the most important job in the world. To be the best incubator for you. I was on the top of the world as I watched my body change to make room for you. Whilst I was pregnant with you I had 61 hospital appointments but you were worth every single one. You were worth all the fear and anxiety. You were loved so very dearly from the moment we knew you were there. I don’t think I really believed you were really real until you were placed in my arms.

It really upsets me to know that you will never get to meet your little brother Arthur. You will never get to hold hands, play together, squabble and grow into fine young men together. What I do know is that you share something so special. I know that both of you grew in my body, you have both heard my heart beating from the inside. I missed being pregnant when you were born, I missed having you all to myself, but I loved having you in my arms even more. From the moment I touched you, it was you who mattered. Always you.

I can remember when I woke up in the mornings and I could hear your little voice babbling away. Talking to your little reindeer. I miss that. I really miss that. I miss knowing that you are in the next room. I miss not being able to sneak in and just watch you sleep. I miss waiting until you were in a deep sleep and stroking your silky soft hair. I miss waiting in bed until you woke up, keeping our bed warm, so I could come and collect you. You would come into our bed every morning to start our day with cuddles. I miss talking to you and watching your face light up to the sound of my voice. I miss squidging your little cheeks and your bum. I miss not being able to soothe you and make things right. I just miss you.

But, I also miss what could have been, all the things we had planned but were never able to. As I’ve always said, what are milestones for other families are losses for us. I miss not being able to read you a bedtime story, and I miss your little face, excited for one more book. I miss not being able to teach you the alphabet and to count to ten. I miss not building sand castles with you and playing games. I miss not being able to take the first picture of you in your school uniform. I miss not being able to stick a plaster on your knee when you fell over for the first time. I miss hearing you say ‘mummy, I love you’. I miss you so much. I miss your life.

Today it has been two years since you have been gone. Two whole years, almost double the amount of time you spent here with us. You would be three now, you would be excited about Christmas, you would be such a wonderful little boy. People think that it gets easier to live with losing you over time, this isn’t the case, you know that as I’m sure wherever you may be you see the pain that we endure. It has been two years since I last held you, since I last cuddled you when you were poorly. It has been two years since I lost myself in your beautiful big brown eyes, and it’s been two years since I was blessed with your captivating smile.

This time two years ago I found your lifeless body. This time two years ago I tried in vain so desperately to pump air back into your body, I tried so damn hard. I heard the most devastating and world shattering words anyone can hear, “I’m sorry my love, but he’s gone”. From the moment I called the ambulance to the moment you were pronounced dead it was 7 minutes. 7 short minutes but 7 of the longest minutes one can bear. When we eventually saw the ambulance sheet, it said “life extinct”, EXTINCT. Somehow there is more finality to that word than ‘dead’. Extinct – no longer in existence. You were gone. Forever.

In one single moment, my whole world changed. The earth shattering guttural sound that came out of my body is one that I don’t think I could replicate. I felt as though my chest was being crushed by a train, the heaviest and most suffocating weight. Death is tangible. Your death is tangible. It overshadowed any other emotion I have ever felt. It reached deep into my soul and gripped it so tightly. When I lost you, I lost myself. Ever since that moment, I have had to re-build my life, not by choice, but against my will. We did not choose this. We chose you. We gave you life. We gave you everything. And you were taken away. I had to re-learn how to be myself. I had to re-discover who I was. Your daddy and I had to embark on this indescribable journey of survival as two, not three.

What is life after loss? Life after loss is the existence that is left behind when the most significant part of your soul and your self is irreparably changed in one single second. The shell of your former self, that has been forced upon you, not chosen. Until you have children you journey through life quite happily, making choices that will best suit your desires, objectives and needs, but when two become three that changes. Your needs suddenly become the lesser of the two as your life is enveloped by this little person. Overnight you assume responsibility for a person, a little person that is wholly dependent on you; and there is no better feeling.

Simply put, I write this now because of you, the little boy who died. But I am the person I am today because of you, the little boy who lived. Your life eclipses your death, and it does so, because I will always be the person I am today because I was blessed with your life and I will share your life forevermore. You will ALWAYS matter.


www.justgiving.com/williamoscarmead

Hope

Time is too slow for those who wait,
too swift for those who fear,
too long for those who grieve,
too short for those who rejoice
but for those who love, time is eternity.

When I gave birth to Arthur, I looked in his eyes and knew something very special had happened. For months I had been fearing how I could possibly love another child as much as I love William, but those fears were completely unfounded. During my pregnancy with Arthur it took me such a long time to realise that it was okay to love another baby, that it wasn’t betraying William some how. That is was okay to smile again, to laugh again, and to hope again. I know that despite how much I love Arthur, it doesn’t mean that I stop loving William. It’s very strange to feel as though you have a basket of love and to have another child was somehow detracting some of that love from William to give to Arthur, but that is simply not the case. I very quickly realised that I was adding to the basket of love. Nothing, NOTHING will ever stop me loving William, nothing will ever make me not miss him or yearn for him every minute of every day. I know that however much I smile on the outside, there is always a part of me missing.

Very early on I felt that Arthur was a gift, sent from his big brother in Heaven, a message. A message to me from William to say ‘mummy it’s okay, it’s okay to live again.’  There was a time that I wouldn’t have been able to say that. A time where my life wasn’t worth living, a time when my darkest hours were spent in a psychiatric unit for my own safety. I have sunk to the deepest depths of despair, I know what it feels like to not want to live, I know what it feels like to make that decision to end my life. In some kind of strange unparalleled universe, William was the reason I didn’t want my life to continue, to take the same journey that William took, from this earth to Heaven, to be with my baby once again. But it was William that kept me going, it is William’s life that ensured that I kept on with mine, that day by day no matter how slow time passed, I put one very heavy foot in front of the other.

I had to fight for William. Fight for the answers to the reasons about why he died. I had to fight to make sure those reasons were heard, and it still is the reason I fight today to make sure that by sharing William with the world that it doesn’t happen again. It has been an incredibly hard journey thus far. To talk so much and so publicly about William’s death and not just about what happened, but to describe what happened to us, how finding him shattered our lives, to explain to people what it feels like to give your child CPR knowing full well that he had already gone. To share our deepest most traumatic moments with people. But I know that by talking about our darkest moments, sharing William and the little boy who lived, others won’t have to experience what we do. I just cannot believe how much impact William’s short life has had, and I am incredibly proud to call him my son.

Silently and behind closed doors, Paul and I suffer. When the cameras are turned off, the microphones put down, we slowly retreat back to ‘life’. We have become expert at putting a mask on, not necessarily hiding our grief, but not always showing it. This journey has played out so objectively, always seeking to achieve something constructive, there are no ‘buts’ or ‘at least’s’ when your child dies. I know that because William died, many other lives will be saved. I am thankful for every person who sees me on television and doesn’t turn over, I am thankful that every person listens and shares my message. But most of all I am thankful that millions of people have seen my beautiful little boy, I am thankful that my child is a hero, because he is my hero.

After having to live a paralleled life, one that is objective and constructive to achieve change in William’s name we are now able to be subjective again, to love, physically. I have always explained grief to be love with no place to go. When Arthur came along he gave us an outlet for our love, but not only did he do that, he has given us a future again. It has only been recently that I have been able to say and believe when I say it that it is okay to live again. It was very difficult when we found out we were pregnant to believe that we would be able to be happy again.

This is a journey, one that isn’t planned out, we don’t know the next steps. We don’t know how we will feel from one day to the next. It is a path we haven’t chosen. It is path we tread very carefully with a fear of the unknown. But what we do have again is hope. I can honestly say that it is truly isolating to live without hope. It completely robs you of energy, of motivation and depletes any reason you have to live. Hope keeps us going. William kept me going until I found hope again. William gave us hope again and for that I will be forever grateful.


www.justgiving.com/williamoscarmead