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

Advertisements

An open letter to Jeremy…

Do you know what it’s like, what it’s like to lose your child, the one person that is dependent on you, and for whom your existence depends on? Do you know what it feels like to wake wondering if by the end of the day the burden of emotions will weigh lighter, not just on your shoulders but on your soul? Do you know what it feels like to know that you will never feel ‘normal’ again? Do you know what it feels like to know that for every step you take, you will never again be complete? The most important piece of my jigsaw, forever missing.

Do you know how hard it is to love someone so fiercely, but to know that love can never be expressed to that person? Do you know what it’s like to be able to look at your children, see their smile, hear their laugh and sooth their tears, I don’t. Do you know what it’s like knowing your child only exists in your memory? Do you know it’s those memories that ensure I lay frozen in the same position, fear, flashbacks and nightmares making you re-live that moment, the moment you tried so hard pump life back into your child. Do you know the determination it takes after 7 hours of that nightmare to get dressed and go to work.

Do you know what it’s like to lose a child to sepsis? Do you know what it’s like to be told, your child should have survived. Do you know how hard it is to live with myself knowing that despite everything I did, I could not protect my child? Do you know what it’s like going to bed every evening knowing that there are millions of other people just like us, who also cannot protect themselves against sepsis, because they do not have the information to do so? Do you know the force it takes for me not to break during every interview? Do you know what it’s like to have to answer questions about your child in the past tense? Do you know the anguish I face to sit in front of the one person in this country that can ensure that other families do not suffer our life sentence, but have little control in the decision. I don’t know what it is like to be in that position, but what I do know is that I don’t want you, or any other parent to have lost their child, or any child to be left without a parent from sepsis.

What you do know is that sepsis affects 150,000 people annually in the UK, what you do know is that of those, 44,000 will die. Every day 120 of those are adults, leaving children behind to grow up without their mummy or daddy, and 4 children whose parents are left in incomprehensible pain. What you do know is that one-third of those deaths are preventable. What you do know is that a large majority if treated sooner, would recover with less life limiting illnesses. What you do know is that “the time has come for sepsis”.

Do you know how hard it is to know those you trusted the most, let you down in a catastrophic way? Do you know that despite this, we somehow channel our grief into a campaign so that others don’t suffer the same debilitating pain that we do? Do you know that at the end of every day we do not blame anyone else but ourselves for somehow failing to keep our child alive? Do you know how many other parents there are out there who have had to say goodbye? Do you know how many children there are growing up without a parent? Do you know what it’s like for their family to tell them that their mummy or daddy won’t be coming home? The frustration I as a parent have to live with, being so close to our end goal but fearing it is so far away. Do you know how hard it is to think that my child’s death wasn’t enough to create change, evolution and a lasting legacy? What will your achilly’s heel be? When will enough be enough? When will you realise that you hold the answers in the palm of your hand, right in front of you. How many more children have to die, how many more mothers and fathers, grandparents and friends have to die before you realise that sepsis does not discriminate. Did you know that thanks to the symptoms being televised during one of my interviews a young mother’s life was saved. Her two week old son will now grow up with his mummy. This is about everyone. Adults, children and sepsis.

This life has been thrust upon me forcibly, in one single moment that took my breath away; and from that moment on every single breath has been a fight. A constant battle against myself. Do you know that I have no strength, no courage, no bravery, nothing but love.

Choice was taken away from me by sepsis; but you still have a choice. A choice and a chance to do the right thing. Please don’t make me continue to fight when I simply don’t have the strength to do so.

You know that we were let down; you know that William was let down with the most tragic circumstances. Don’t let us down again. So many lives depend on your decision. Make it the right one. Stand by your word that “we can raise public awareness of sepsis both in children and adults.”

See you Wednesday.

Melissa

Dearest William…

I hope you are ok? Mummy is missing you so much. Mummy is finding it so hard at the moment, it’s so hard to live without you. It has been 15 short months since you went to live in your new home. 15 months is longer than you lived for. 15 months isn’t very long in the context of a lifetime, well not mine at least. 15 months is long enough, what is 15 years going to feel like, or 50. I hope by then I’m with you. I hate this sweetheart I really do. I can’t remember the last time I was happy. The last time I really laughed so hard. I can’t remember the last time that I didn’t have a care in the world.

Losing you is the hardest fight that I will ever have to face, and it is a fight. The constant urge of wanting and needing to give in is prevalent. I am but one breath from being with you, but that feels like a lifetime away, well it is a lifetime. It is probably a good job that we don’t have on/off switches. I would have flicked that switch a long time ago, to end this part of my life in purgatory, and to spend the rest of my time, with you. Only with you. Well not just with you, but the two other little children, who sadly, mummy didn’t get to give birth to. See, you were so special, the little one that made it. I was honoured to share my birthday with you. You couldn’t get a more perfect gift than you.

You changed my life, you changed me as a person, you see I don’t think people realise quite how much. Before you arrived I had resigned myself to a life with no children. Growing up I was fiercely independent, I knew my mind and where I wanted to be. I grew up very quickly and left my childhood behind. Nanny and grandad worked so much, every day in fact, so I spent a lot of time with your great nanny, and auntie Joyce. But I learnt how to look after myself, I worked hard as soon as I was old enough, I did well at school, but I always did my own thing. I was the only one who really exerted control over me. When I was told at 11 years old that it was unlikely I would have my own children, I planned around it, I never grew up playing with dolls or talking about children. Even nanny and grandad didn’t think I was maternal at all, throughout my pregnancy I worried I wouldn’t be good enough, I worried that I wouldn’t know what to do, and I worried that I wouldn’t be a good mum. I remember being in labour and I said to daddy “what happens if I don’t love him, what happens if he doesn’t love me?” Daddy assured me that would never happen. Daddy was right (don’t tell him I said that), for once I have no problem standing on the tallest building and shouting, your daddy was right. My goodness I have never loved anyone or anything as much as I love you, and you loved me.

I knew how special you were, I knew then. I know now. I will always know. You were the one that allowed me to lessen the grip I held on myself, you allowed me to live with more freedom, allowing myself breathing space. You taught me there was more to life than working 24/7, you taught me that it didn’t matter if filing wasn’t done the moment the bills came through the door, you taught me that it didn’t matter if the washing didn’t get done, if the dinner wasn’t on the table at 6. I had spent the day encapsulated in our bubble of love. That is the power of love. A total force of nature. You taught me to be selfless, to be patient, to be compassionate, to love with no expectations. You taught me how to live. I owe my life to you. I owe everything to you. I gave you everything I have.

Being separated from you has ignited sheer desperation, a yearning and need that I cannot fulfill, manifesting itself as pain. The price I will pay for the rest of my life for loving you so much. That pain will only increase as the love intensifies and the ache in my arms becomes heavier. At the moment I’m not living peacefully, you probably know. You can probably see my struggle. The tears, the sleepless nights, the nightmares, flashbacks and hallucinations. You probably know that I’m not working. The visions of your broken little body now not just thoughts but tricks of my mind. I don’t like it. I can’t help it, your broken little body can appear on the windowsill as I’m sat in the office working, reflections in the mirror as I look at myself, or like the other night, I woke screaming, sweating, having had your little hand drop on mine, but not your plump, dimpled little hand that I used to hold but your stiff, cold hand, the entirely different hand that I saw after you had died. Why do I experience this, I don’t know. As much as I have experienced your waking moments, I also experienced your dying ones too. I experienced your death, and as much as your little life made the biggest impact on my life, your death did to. Your life happened, but so did your death.

What am I supposed to do without you? How am I supposed to live without you? All I want to do is come home, but I am ‘home’ but I’m not, my home is with you. We should have been making memories today, you would have been making me a card at nursery, you should have been here to see me open it, and help me eat my breakfast in bed that you and daddy made. We should have gone out and filled our day with more of those infectious smiles and laughed until our cheeks hurt, making memories. I should have heard you say ‘mummy I love you’ I should have been able to say, thank you sweetheart, I love you too. But I can’t, instead I’m sat in bed looking out of the window. I can see white smoke from the chimney across the road, make its way into the dark dusky sky, wishing I was a free spirit like the smoke, making its way into the atmosphere. I just want to be free again, but until we are together again, I know I never will be. I live everyday with the guilt, guilt that I couldn’t protect you, that somehow I didn’t do enough to save you. I hope you don’t blame mummy as much as she blames herself. The thought of letting you down, leaves me barely able to live with myself, but Daddy is doing his best to look after mummy’s broken soul.

William you allowed me to see life through different eyes, you allowed me to open my eyes and experience LIFE. William, you gave me love, a love that I didn’t know existed, you gave me love that was beyond my imagination. William, you made me a mummy, you made me your mummy, thank you. Thank you for picking me. It will always be you.

As another day draws to a close without you, another mother’s day without you, one more day closer to you. I look up to the night sky and like every other evening I say to you, goodnight sweetheart, I love you. Your mummy xxx


www.justgiving.com/williamoscarmead

 

 

 

Closure, what is that?

“Closure” – noun

  • a feeling that an emotional or traumatic experience has been resolved.

Amongst other more trivial definitions, this is the word that is commonly used when a non-bereaved person has no idea what to say to you. At least after the funeral you might get some closure, when the inquest has finished it should give you some closure, when you have received an apology from those that failed your son, you will get some closure. Erm, no. As it says above, closure refers to the resolution of an emotional or traumatic experience. Losing a child, losing William will always leave a gaping chasm in my life that can never be resolved, fixed or even emotionally explained away. The only way to resolve my profound hurt, is for William to be alive.

The last few weeks have been a real whirlwind, what you have seen in the news, the news papers, on the internet is a representation of the way my mind is bubbling all the time. It is everything that I have been hoarding in my brain for the last 14 months, and only a small proportion of it came out in one day. It was emotionally charged and overwhelming, something that I knew I had to do. A double-edged sword. I didn’t want to be there, but I did. I didn’t want to see William’s beautiful smiling face on the TV, but I did. The most unusual bittersweet sense of pride one can feel. I didn’t want to talk about what happened to William, there’s no getting round it, and having to revisit the most traumatic day and subsequent days of my life on repeat was a difficult task to endure. But it was a sacrifice. A sacrifice I made to see my pint-sized William make a difference. And what a difference he made.

As I sit here now, finally able to sit and write, the emotions that inhibit my body, from the pit of my stomach, the waves roll through my chest, my jaw clenches as the tears flow. I have barely cried these last few weeks, well, that’s not entirely the truth, I cry everyday, I cry in the morning, some days I am already crying when I wake up. I cry in the shower, in the car, at my desk whilst writing a memo. But, I haven’t cried so loud in the shower when no-one can hear me, I haven’t cried so hard I couldn’t focus and had to stop the car. I haven’t allowed my body to let go, to heave and purge the compressed tension that sits in my soul. Initially after the media frenzy I was simply so exhausted I would just sit and stare, and then I got scared, so scared that I held it in, knowing that when it came I would not be able to control it.

But today was that day, today I opened an attachment on an email, ‘re: William Oscar Mead, Deceased’, deceased. My son is deceased. My son, my only child, my everything is dead. It is so very easy to somehow objectify your actions, to travel to London, to go on the television and talk about the failings in William’s care, so easy to talk about what needs to happen, what needs to change, to educate people and help to raise awareness of sepsis. But I did that, because my little William knows what it’s like to die, my son shouldn’t know that, and no matter how much positivity you harness, how much you empower parents, and how much awareness you raise of the catastrophic condition that took our little boys life, William is still not here. We still came back to an empty home, no mess, no toys strewn on the floor, no laughter and contagious smiles. Nothing. No William.

You get to a point, and I’m at that point where people don’t approach you with caution, people no longer ask you how you are, with a sympathetic look, worried for the answer they’ll receive. No, now, there is an expectation that when people see you that you are okay. They will ask you how your weekend was, they will engage you in conversation, or as I like to put it, small talk. My tolerance levels are no better than they were six months ago. My tolerance levels are worse, I have just become a seasoned pro at wearing the mask. When you ask me how my weekend was, it was shit. Just like every other weekend. It was shit because on Friday after work I didn’t pick William up from nursery, I didn’t flop onto the sofa with a glass of wine when William had finally succumbed to sleep. It was shit because my weekend didn’t involve trips to the park, 25 loads of washing, chasing round after a cheeky two-year old, packing him into the car with ‘plans’. I will tell you it was ‘okay’, because I can no longer be bothered to explain, people no longer really want to hear it, people are busy with their own lives, people’s lives have moved on, albeit tinged with sadness but nonetheless, their lives have evolved.

My mental health has not moved on, it has not evolved. I am no longer preparing for an inquest, I am no longer bracing myself for the next version of the NHSE report, no, I know what happened to William, although I’ve known for months, however, it is not something that I felt able or inclined to speak about publicly. We’ve had every apology we can possibly have, the doctors involved in the failings in William’s care have apologised, face to face, last week. South Western Ambulance Service (111) apologised last year. NHSE have apologised, and now Jeremy Hunt, Secretary of State for Health, stood in Parliament and apologised on behalf of the NHS and the Government (see video below). But, where is William? It doesn’t bring my little boy back, it doesn’t take away the suffering he endured in those last few months, and in those last 36 hours, it doesn’t take away the guilt I feel, the blame I impose on myself, probably a form of self-harm. Control perhaps. I know it’s not my fault, I did everything I could, I sought help, I listened, I followed advice, I didn’t know what sepsis was, I didn’t know that William’s symptoms were life-threatening. But regardless it was me who took him to the people who failed my son, me. The one person that has ultimate responsibility for my son, he trusted me to protect him, trusted me to make the right decisions for him, he trusted me with his life, and as his mother I wasn’t able to do it. I was let down, let down by people and systems that are designed and are in place to help people, but until I take my last breath, the buck stops with me. No amount of changes, recommendations, lives saved, and sorry’s will ever stop me feeling that.

If you’ve ever faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it will make you a better person, or that somehow when responsibility is taken for it, it will fix it. They are lying. Grief in all it’s forms is brutally painful. People encounter grief in many ways, when relationships fall apart, you grieve. When dreams die, you grieve. When illnesses destroy you, you grieve. These are words that I’ve uttered countless times; words that are powerful and honest they remove the foundations of anyone participating in the debasing of the grieving. Some things in life cannot be fixed. They can only be carried.

This video is the link to the apology William received in Parliament, if you would like to watch.

http://videoplayback.parliamentlive.tv/Player/Index/563715bb-a8f2-41fe-9f36-642d670ed991?in=2016-01-26T12%3A37%3A45%2B00%3A00&out=2016-01-26T13%3A15%3A00%2B00%3A00&audioOnly=False&autoStart=False&statsEnabled=True



www.justgiving.com/williamoscarmead

I am always the mum whose baby died

One Step Closer...

One Step Closer…

Life is very busy at the moment, but not busy how I ever imagined it would be. I never imagined that I would be sat here preparing press statements, comments, being interviewed and scrutinising every document I receive in relation to the death of my little William.

I remember so well receiving William’s death certificate and putting it in the folder with his birth certificate. You don’t get a folder with the death certificate, it’s not free either, we had to pay for the privilege. When I opened the folder I thought, do I put it in front of his birth certificate, the OCD inside me needing it to be in date order, but the mother inside of me knew that it always had to be William’s birth certificate that had to be right at the front. William’s birth such a defining moment in my life. A moment that re-defined me as a person. No longer Melissa Mead, personal assistant, friend, sister, girlfriend, but mummy, a title that supersedes any of the former. A title I never thought I would have, a title I took seriously, a title that I did not treat lightly. A title that some are not blessed with, others blessed with children, but perhaps not deserving. Not me, I have the best title. I am William Mead’s mummy. I was born to be William’s mummy, I will always be William’s mummy, but I can no longer look after him like most mothers are able to. As I sat there for half an hour, reading William’s death certificate, I knew what the answer was, that it would be placed at the back, at the bottom, behind everything else that mattered. The world was a richer place when William was born and so much poorer when he died. Simple tasks insignificant to others, but tasks that consume me. Sad isn’t it, that I have to worry about such silly things, I should be worrying that William isn’t putting his fingers in plugs or staying up to late not how to file his death certificate.

The worry never stops. I worry about him now, is he ok? What is he doing? Is he sleeping ok? Is he lonely? Does he have little friends? I hope they’re not feeding him broccoli, he really doesn’t like it. William went to Heaven with no instructions. He wasn’t prepared, I wasn’t prepared, William was never supposed to go. It is not something any parent should ever have to knowingly prepare for, or have to endure. We are all used to death, and what it means. As we grow older, we begin to lose grandparents, eventually parents. It is not something that we invite, or wish to even happen, we hope that it doesn’t happen when we are young. We do hope that our parents, and older generations live a rich life, live their dreams and see younger generations being born. The natural order. The order we don’t like but expect and have come to accept. We have wonderful memories of our grandparents, tales of times gone by, always being able to get that extra packet of sweets because ‘we’re cute’. When we begin to lose loved ones as we age, what we are left with is memories. Memories of them, memories of their life, their achievements, memories we have created together, that we can look back on with happy tears. What I’m left with is imagination. For those who have lost a child in pregnancy, a baby born sleeping, or a child lost like William, we have some memories, but mostly what we are left with are imaginations. Would William enjoy school, what would be his favourite subject, would he prefer to read a book or play sports. Would he want to become a lawyer, a train driver or a professional footballer. I will never know. I will never know whether he would marry, whether he would marry a man or a woman, I will never know what his children would look like, what my grandchildren would be called. I will never get to experience that love, that pride of watching my little boy grow into a perfect young man, watch him create his own life, and have his own family.

Like you, when you share on social media precious moments you have with your children, when they master how to walk, when they swim 25 metres, when they are in their first nativity, when they ask silly little questions that only little children can ask, I need to share William too, but how can I share William? I cannot post that William started school today, I cannot share that William won his first spelling competition. I cannot share William like you are able to share your children. Regardless, I have to share William with the world, to teach you all about the little boy who lived. William did live, he lived for 382 days, and William’s 382 days have made more of an impact on this world than my 29 years ever will. The world needs William, just like I do. When I share William, I share with you little stories, but mostly I share with you William’s legacy. Sharing William’s story enables me to raise awareness of what happened to him, make sure the mistakes in his care do not happen again, and to make sure that anyone I come into contact with, whether that be physically, or online, knows what Sepsis is. That is William’s legacy, to save the lives of other children, and in doing so, for every person I engage with, I get to show them William’s little face. And that is how, a mother who has lost her child is able to feel pride.


 

www.justgiving.com/williamoscarmead