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

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October – International Pregnancy & Infant Loss Awareness Month

William and his 1st birthday cake x

William and his 1st birthday cake x

Next month on the 27th November William will turn two, but he won’t be here to share his special day with us and celebrate like other children can. I simply cannot believe it’s ‘next month’. As time ebbs away I am hanging on to the days when I can still say ‘this day last year William was…. this time last year William took his first steps…’ soon, as we pass William’s birthday and the anniversary of his death approaches and passes, I will no longer be able to say, this time last year. A whole year. A whole year without William, and as the end of the year closes in the 31st December represents 382 days without him. I will have spent just as many days without him to those that he lived. I cannot tell you how incapacitating this is.

How can we celebrate William’s birthday without him, how can we smile, how can we do anything other than remember the beautiful first birthday we spent together. But, and it is the hardest ‘but’ I have faced. It wouldn’t be right for us not to mark William’s special day. The day that I birthed my angel. The day that sunlight came beaming into my world, the day that nothing else mattered, the day that I knew my dream had become a reality. The day that William showed me how exquisite unconditional love is.

So, as you know from my previous blog we have organised to release some biodegradable balloons so they can make their way to heaven for William to play with. We are doing this the day after William’s birthday on the 28th. On the 27th November I will be devoured by the eternal ache of spending the first birthday without him. How is it even possible that we only ever got to have one birthday with him? How is it possible that a little boy so loved, so achingly needed, and so desperately wanted could be snatched away so cruelly. I know how, but I will never understand why.

William died from sepsis, the most awful and in William’s case catastrophically fatal infection I have ever come across, and I wonder how many of you know what Sepsis is? What the symptoms of sepsis are? What causes it? Well I thought sepsis was rare, in fact in 2012 I had sepsis, caught after an operation. Well I can tell you that sepsis kills 37,000 people in the UK every year. William was one of those 37,000. A life-threatening condition that takes hold in a matter of hours. As October is International Pregnancy and Infant Loss Awareness Month I hope to be able to spread awareness of sepsis, so that no-one has to lose anyone to sepsis.

Sepsis occurs when the body’s response to an infection injures its own tissues and organs. Infection which can give rise to sepsis are common, and include lung infections, like pneumonia (this is what William was suffering with – although un-diagnosed), water infections, infections in wounds, bites or joints and problems such as burst ulcers.

Sepsis can lead to shock, multiple organ failure and in William’s case, death.

Life-saving treatment for sepsis is often relatively straightforward. Early recognition, and getting basic treatments including antibiotics and fluids into the patient within the first hour, can halt the progression of sepsis and hugely improve outcomes for patients. In the case of sepsis antibiotics are the single most important life-saving measure.

Sepsis accounts for 37,000 deaths in the UK every year. That’s more than bowel cancer, breast cancer and prostate cancer put together. This means that 1 person dies from sepsis every 14 minutes. What should you look out for?

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So, for William’s balloon release I am involving all of you, if you would like to donate to William’s Just Giving Page with all proceeds going directly to the UK Sepsis Trust, I hope by fundraising we can raise awareness of Sepsis. Whether through simply educating people, through innovation, research and the sharing of good practice. Sepsis needs to be recognised as a medical emergency and as a clinical priority for the NHS. We need to ensure that members of the public, patients and their relatives, and health professionals work together to think Sepsis. So, if you would like a balloon to release for William’s second birthday and to raise money for such a worthy charity, we are asking minimum £1 donation per balloon, you can email me your address and if you are abroad, don’t worry I will get a balloon to you too.

I hope you will all help our family, to mark William’s special day with as many balloons from around the world as we can, and raise awareness of Sepsis too.

 

 

Life is a path: death is a destination

Can you imagine what it actually feels like to not be able to live with yourself. I don’t mean that figuratively but literally. All my life I have been very independent, and when I was told the chances of conceiving my own baby were slim to none, I focused on the practical side of life. Buying a house, studying for a job that wasn’t just a job but a career. I am a very black and white person, the most dominant part being logical, the part of me that has been my core survival. The emotional me has always only had a very small role in my life. That was until William was born. Wow, the intensity of love was frightening, I didn’t know love like that existed and it was all mine. There was nothing that could change it, I didn’t know how I had lived without it for so long. I had finally been born, I was finally alive.

My life it seemed had always been a journey of survival, a survival that relied upon my logical, practical side, a side that had never let me down. When William was sick, I did what I was supposed to do, I took him to the doctors. When I wasn’t satisfied I took him to another doctor, when he didn’t improve I took him back, again and again. In the hours leading up to William’s death I knew something was wrong, and I took him to those that we trust, I walked away reassured I was doing the right thing. The day before William died the niggling feeling, my mother’s instinct was telling me, he’s just not right, so I called for help and advice. Twice that day. Following advice, I was apparently doing the right thing. But it wasn’t the right thing. This I could tell you until I’m blue in the face that William’s death was out of my control, I would trade my life for his, but I still blame myself, I let myself down and I let my boy down.

With hindsight, there’s that word again, a curse word and knowing what we know now that William’s death was avoidable only reinforces that blame is warranted. I know every fine detail of the weeks, months, and those last few hours of William’s life. It doesn’t matter how many people tell me over and over that it’s not my fault, I shouldn’t feel guilty, I wasn’t to know, I did everything I could, the reasoning, but regardless the guilt remains. The guilt is born from what any mother would feel as her normal sense of responsibility for her baby, and the inherent belief that we have ultimate control over what happens to us, what happens to our loved ones and our built-in desire to protect. The despair only magnifies the deep-rooted guilt and makes me feel like a complete failure as a human being, and most importantly as a mother. Existing through each day, resisting the urge to end my life is potentially the hardest fight. A fight I know I’ll lose.

These feelings of guilt creep into every aspect of my day, every thought, intensified by my love for William, my need to close my eyes, go back to those moments and take away his suffering. This is something I have no control over, I can’t go back, I can’t change it but guilt allows me to control the situation I find myself in during every waking moment. I know that the decisions I made at the time were always in William’s best interests. The guilt I know is unfounded, feeling guilty is not the same as being guilty, this is so hard for people to understand. Guilt is all-consuming, made up of despair, regret, incompetence, failure, sadness, and these all form the worst feeling of all, blame.

I feel vulnerable, I am constantly anxious, I am worried, about what I don’t know, I no longer have anything to worry about. I have very little control over any of my feelings, the realisation of the horror that is my life is racked with guilt. My whole body aches with love, now I share my love for William with the world as my only witness. Guilt is the most painful companion to death.

William my sweetheart, you saw me take my first breath as you took yours, I saw you take your last breath, and when I take my last, we will be together. Forever.

What acceptance means to me

My independent boy xx

My independent boy xx

This day last year you pulled yourself up for the first time and stood without mummy’s help. You stood and looked at the floor trying to work out exactly what you’d done and how you’d get down, but not before reaching everything you could on the table and gently placing it on the floor. I thought you would throw it, make a noise and want to repeat until bedtime, but not you. You were curious to work out what you could do, how far you could reach, you always carefully worked out your limitations. Once you had gently placed the television remote on the floor, you looked at it and knew that your body wouldn’t balance on your little legs and you wouldn’t be able to bend down to pick it up. So, when you figured it out, your bum hit the floor and the television remote was once again within your reach. You leaned over, grabbed it and popped it back on the table. Shuffling closer, out shot your chubby little fingers, gripping the edge of the table, once again you pulled yourself up. After you had practiced this several times, your eyes met mummy’s, the pride on my face sharing your own delight. It was time for a congratulatory cuddle.

These are my memories. This was the first time my little boy stood for the first time. I remembered every detail even then, I remember them even more vividly now, ingrained in my memory where no-one can touch them. Mummy had 382 days of firsts with you, 381 days of beautiful memories, until day 382 when death walked in and made the most awful memory. In that single moment, the most painful memory would be etched in my mind for a lifetime. As clearly and vividly that I can remember the first time you stood, opening the curtains to find you staring straight through me, cutting me in half with the eyes that once held your soul is a weight that I carry with me wherever I go. It is no less prominent today as it was back then, if you asked yourself, if you found your child like that, would it ever become less painful?

As every new day begins, it is a new day without you. The pain of reliving this nightmare is re-ignited. As the monotony takes hold, I imagine what I would be doing now if you were here? Would daddy still be coming in to pick you up in the morning, or would you be running into our bedroom? You would be able to stand on your own to brush your teeth, rather than mummy juggling a toothbrush and an excitable toddler. You would be able to pick what clothes you would like to wear and help dress yourself; then my imagination shatters. I collect my jacket and there was your little coat, on your peg, bright red with blue stars. As reality hit me at 100mph I took it down and held it to my face, inhaling your scent. I held it up next to my legs, imagining how tall you might be now. Imagining your excitement of putting it on ready to go to nursery. It took mummy an extra 30 minutes to leave the house, having to hang your coat back on its peg was like leaving you behind. It feels wrong.

To use the phrases with anyone that is grieving, especially a child, ‘moving on’, ‘coming to terms with it’, ‘letting go’ and ‘acceptance’ is like a knife through my heart. I don’t want any of these things. The pain doesn’t lessen, the days get longer, and the nights even longer. How can you move on? How can you come to terms with it? How can you let go? How can I accept it? How can I possibly accept that my little boy died, in avoidable circumstances, how can I accept that this is my life now, how can I accept that I will never see him again, the truth is, I can’t. So my acceptance is ‘i’m not going to accept it’. Yes, I’ve accepted that I’m not going to accept it. That is my acceptance.

Dear Grandad….

Me and my Grandad xx

Me and my Grandad xx

Today is your birthday Grandad, so I wanted to send you a very special message. I would be on Skype today, waving to you, and showing you how I’d learnt to say ‘gangan’ and wishing you a Happy Birthday. You would make me giggle and my laughter would fill your house. They don’t have Skype in heaven, I wish they did, because I miss seeing your face Grandad. I really wish I could give you a birthday cuddle and lots of kisses.

You see, I know Grandad, that you never imagined mummy would be able to have me after she had been so poorly, but I was your best surprise EVER. I was your little miracle, and I know how much you love me. I see you crying, crying because I am not there anymore. Crying because you don’t understand why life was so cruel to me, and took me away from the bestest family I could have ever wished for. There won’t be anymore cuddles or photos or new memories. But I’m so glad that mummy took me on my only holiday, on an aeroplane, to come all the way to see you in Spain. I was a really good boy and it was the best holiday ever.

You were so excited to see me, and I was really excited to see you. I got to show you what a good boy I was and you now believed mummy when she told you that I never cried. You got up early in the mornings with me and had breakfast with me everyday. You took me in the swimming pool everyday, you swished me round and round and it was so much fun and when it was too hot to go outside you would sit and watch me play with your slippers. They were much more fun than toys. Especially when you wanted to wear them and I wanted to play with them. A good game, that I always won, because I’m cute. I miss your slippers Grandad.

No-one sticks apple stickers on my forehead anymore or puts doily’s on my head like you did Grandad. You were quite pleased with yourself, mummy thought it was funny, I pretended I didn’t like it, but I did really. We made our own fun, didn’t we.

Naughty Grandad xx

Naughty Grandad xx

My new hat xx

My new hat xx

 

 

 

 

 

 

 

 

Grandad I’m really sad that I didn’t get to make it over to spend Christmas with you, I was going to show you how clever I was at walking, how I’d learned to clap my hands and most of all how I gave the most amazing cuddles. Mummy would have let you look after me, but we both know that it would have been me looking after you. I would have been your little helper.

I really miss you Grandad, I miss us, and I miss what would have been. How special our relationship would have grown to be. You make me proud Grandad, and I tell everyone that you’re my Grandad and that I got the best. So, although I can’t be with you, I’d like to wish you a happy birthday, I miss you so so much and I love you lots and lots. Your little William xxxx

I never said I was leaving,
I never said goodbye,
I was gone before you knew it,
And only God knows why.

A million times you’ve needed me,
A million times you’ve cried,
If love alone could have saved me,

I never would have died.

In life I loved you dearly,
In death I love you still,
In my heart I hold a place,
That only you Grandad, can fill.