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

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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

PTSD and me

Today as I stepped out of bed on day 550 without you I looked out of the window for some inspiration. I didn’t find any.

There is no one day easier than another, I am yet to wake up any morning and think, well I don’t miss you as much today. My thoughts are always with you. My tears are all for you. I suspect you can see mummy from the little white fluffy cloud on which you now reside; but I know if you can see your mummy you’ll also know that she can’t help it. I have long since given up thinking that time heals, that one day I’ll come to terms with losing you. Simply, I won’t, how can I?

More than ever I can’t cope with knowing that I couldn’t save you. You didn’t deserve this. You deserved the world. You deserved to be happy. You deserved the chance to live your life how you chose. Your life so cruelly taken away from you by others. Maybe that day they went into work with something on their mind, perhaps they were tired. But you gave your life for their mistakes, there is no bigger sacrifice, and if mummy could she would give everything for you to have breath back in your broken little body.

Sweetheart, I think that some people think that after 550 days I should be functioning better, that I should be capable of getting through a day without breaking down. Or that perhaps I shouldn’t be as vulnerable and fragile as I am. I don’t think anyone will ever understand the path that I tread. It is not a path that anyone else can say they have been on, after all, only I know my pain of losing you. Daddy treads his own path, others tread different paths. But no one treads mummy’s path.

The moment that mummy heard those words ‘I’m sorry my love, but he’s gone’ my life changed irrevocably. There was no going back, no going back to the normal life we had created together. No more cosy morning snuggles, no watching you point your toes and jiggle your little feet when you are excited, no sneaking into your room in the night to stroke your silky soft hair. Mummy used to do that, you probably knew that, but you let me, because you know mummy needed to. What I would do to just hold you one more time.

Some people don’t understand that by the time I have managed to dress myself in the morning, I have already been awake crying for several hours, if I’ve been to sleep at all. Some people don’t understand that some days fast movement, lots of noise or colour gives me a sensory overload. Trying to explain to someone why I’m so hypersensitive is virtually impossible, let alone trying to explain how the flashbacks cripple me. You see people don’t understand PTSD, people think I should stop thinking about it. How can I? Could they? I don’t think so, not if they had witnessed losing you. I can’t stop thinking about it, I don’t have a choice. PTSD isn’t simply a memory recollection, something you can summon and then change to think about something completely different. When my brain decides, I will re-live the moment that I found you again. Frozen in bed, not being able to move, paralysed by fear, in my mind, you are next door, in your cot, passed away. Somehow the light, the sounds, the smells are the same. It is that morning again. I can’t remember how many hours I sat cross-legged on your floor, hands tightly gripping the bars of your cot, head pressed against the bars so hard there were two lines on my forehead, staring, my eyes pleading with the spot where you took your last breath, pleading for you to not be there, not like that, not again. I think it took 6 hours for my brain to realise that you weren’t there. For those 6 hours in my mind I had been staring at your broken little body. But of course you weren’t there. Try telling my mind that. It is like being trapped in a nightmare, not able to wake up because of course you are already awake. Being suffocated by the nightmare as you have no idea that it isn’t real or that it isn’t really happening again.

PTSD is so debilitating. I don’t get a choice, I can’t just not think about ‘it’. The trauma of losing you so vivid, mummy is forced to re-live losing you all over again, I can’t help it. It’s not just a memory, it’s not something that I can distract myself from. It is not something that I can explain to people unless of course they have experienced it. They do not understand that one minute you are seemingly ok and confident to the next minute being scared to exist in what is a co-dependent bubble. And when it strikes it is like having a wound re-opened, and left constantly open. Social situations are a no go area, draining, emotionally exhausting, overwhelming, frozen and incapable of functioning. In a nutshell PTSD is not being able to differentiate in your mind the past, the present and the future.

I wish people would be patient, I wish people would not judge. I wish I didn’t have to keep justifying how and why I feel like I’m in a sinking abyss. No one will ever understand the pain of losing you, a life sentence, one that will not be over until I take my last breath and we are together again.

You will never know sweetheart how much mummy needs you. You changed my life, mummy is so blessed that you picked me. I sit here looking at your photo’s, your captivating smile, your sparkling eyes coming alive from every photo. You probably see mummy touch your photos, hoping that she can feel you chubby soft skin once more; but I never will. I remember the last time I ever held you. I traced every inch of your little body with my finger, my eyes closed, assigning every little fold and crease to memory. Even then, twenty days after you had passed away you were still perfect. God, mummy misses you so much. People just don’t get it. It just does not get easier.

So, my message to the lovely people who I encounter every day in my life, please don’t judge, don’t criticise, be patient, be calm, be respectful and most of all, give me time. I estimate it will take a lifetime.


www.justgiving.com/williamoscarmead

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