Loving you is easy, missing you is so hard

You're on the front page baby xx

You’re on the front page baby xx

Well today my sweetheart your beautiful face graced every news stand in the United Kingdom. Over a million people will have seen your captivating smile on the front page of the Daily Mail, and even more online. As I stood in the shop this morning I stood looking at the news stand thinking, that’s you. That’s my little boy. That’s my life in one photo, and in one news article it summed up your death.

No matter how many times your story is shared, how many people read the paper, or how many lives it goes on to save, it doesn’t bring you back. I am left feeling a bittersweet sense of pride. I’ve had the breath knocked out of me, to see how you my darling are making such a difference, but at the end of the day, when people close their newspapers and shut their computers down, I am still sat here without you. I am still sat here missing you, I am still sat here loving you, I am still sat here desperately lost without you.

I miss everything about you.
I miss the way you would always point your big toe up.
I miss the way you always pointed your finger, even when there was nothing to point at.
I miss waking up before you and being impatient, waiting for you to wake up.
I miss when you would get excited, tensing and pointing your feet.
I miss you giving them a little wiggle for extra excitement.
I miss the way you stood at the stair gate posting balls from your ball pool into the kitchen.
I miss how you sat at the bottom of the stairs waiting for daddy to take you for a shower.
I miss your gorgeous little bum.
I miss being able to squidge your gorgeous little bum.
I miss your smell, your intoxicating smell, it was always the best in the morning.
I miss my morning fix.
I miss reading your nursery cards, what you’d eaten, played with, what you’d achieved.
I miss picking you up from nursery, to see your little face when you would catch a glimpse of me, to see the emotion erupt on your face, you would cry you were so overwhelmed.
I miss the way that mummy would pout her lips and huff, for you to copy.
I miss being able to say ‘up’, your little hands shot in the air and we would have a cuddle.
I miss snuggling you into my chest and giving you your milk before sleepies.
I will never forget that eye contact.
I miss not being able to lose myself in your big brown eyes.
I miss knowing that you’re sleeping in the next room.
I miss hearing your faint snore.
I miss getting to work and finding the toys you’d put in my bag.
I miss putting your shoes on for the tenth time before nursery.
I miss pointing out your bedroom window before sleepies, watching the stars.
I miss your laugh.
I miss missing yesterday.
I miss knowing that there is a tomorrow.
I miss the way you made me feel.

You are the sun in my day,
the wind in my sky,
the waves in my ocean,
and the beat in my heart.

I miss you.

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Life after death

Someone said to me the other day that it was less than 100 sleeps until Christmas. What does that mean for me? That doesn’t mean less than 100 sleeps until I can hang our stockings up, what that means is that it’s less than 100 sleeps until my darling boys second birthday, and shortly after will be the first anniversary of the worst day of my life. Christmas represents everything that I have lost. Like with everything that I do, it is done through gritted teeth. We went away to London, we had an ‘okay’ time, we visited places where there were multiple happy faces, stood outside Buckingham Palace feeling very patriotic as we witnessed the changing of the guards, but we were only doing all these things because William died. We wouldn’t have been there had William been alive. Other than going to work, doing anything else leaves a bitter taste in my mouth, knowing that we wouldn’t be doing whatever it is if William was here.

This Summer was supposed to have been full of days at the beach burying daddy in the sand, countless ice creams and evenings snuggled on the sofa. I visited the beach once, if I’m honest it was all too much watching those families having so much fun. Lathering their little person in enough sun-cream to protect an elephant and the never-ending queue to the ice cream hut. Before leaving London Paul wanted to visit the London Aquarium, as we stood in the queue, the man in front had a little boy about William’s age, as I stood there and watched him I could see the excitement emanating from his face. Eager to escape from his pushchair, impatient to see the sharks. Why wasn’t that William? Why were we here? As we made our way over the glass floor, sharks and turtles swimming beneath our feet. I could only stand there, close my eyes and imagine how William would react. Would he kneel down and point at the fish? Would he be scared and want me to pick him up? Would he run from one side to the other, not wanting to stop for fear of ‘falling in’? I will never know. I will never get to hold him up awkwardly so he could poke the starfish and limpets in the training pool. I will never be able to explain why he’s not allowed to take one home but promising him that he can have one when we get home, hoping he’d forget my promise. Instead I was stood there taking pictures of William’s teddy containing his ashes next to a starfish.

William and the Starfish

William and the Starfish

I have no idea what people must have been thinking, I didn’t really care, after all this is London. The one place someone asked us about the significance of the teddy was Buckingham Palace, as Paul took a photo of us both, a lady enquired why we had a teddy, Paul looked at me, I looked at Paul, as I started to explain the lady’s face dropped, the sentiments shortly followed. She probed further. I hadn’t experienced that, most people would generally shy away after apologising profusely, but this lady didn’t, she asked about William, she asked to see his photo, she asked about our trip. We stood there for 10 minutes talking to this lady. I don’t remember her name, I wish I did. That lady validated my sadness, she accepted my grief, right there in that moment. She didn’t treat me like a fragile piece of china, she didn’t walk away not knowing what to say. She accepted the way I felt, she looked in my eyes and told me how sorry she was that I had lost my son, but she didn’t dwell on his death, she wanted to know William, who he was, the little person that despite everything brings a smile to my face, even if it’s only a memory. The strength of love that bought us all the way to London to share him with everyone. She spoke his name, ‘what was William like?’, ‘had William started walking yet’. What this lady did was understand that by asking me questions about my son, she wasn’t going to upset me. She understood that nothing she could say would possibly make me feel worse. By talking about William, she was recognising that William existed, bringing his memory alive. I loved that.

William visiting the Queen

William visiting the Queen

For me everyday is full of memories that I won’t be making. Full of what if’s. What would William be doing now? I’m organising a balloon release for William’s birthday in November and I sat the other day and thought William would love that, but then of course if William was alive there wouldn’t be a balloon release. As time draws ever closer to William’s birthday my anxiety levels rise, I try to distract myself to keep busy, but it’s impossible. Regardless of what I do, my mind does not leave William, it does not leave that Sunday morning, it doesn’t stop whirring round, continual questions, the answers ever evolving, but it doesn’t matter how well I wear the mask, how well I manage to engage in conversation, inside I am crippled. People care, but people can’t share the pain because they don’t understand it, I wouldn’t want to share it, to share my pain would be to misplace my love. Grief is so isolating.

William and Aylan

I have found it terribly hard these last few weeks to watch the news, read the paper, or scroll through Facebook without seeing images of the devastation that Syria is being subjected to. We are then confronted with ‘those’ images of little Aylan and his brother, washed up on a beach, their bodies bloated and pale. The arguments in the media followed, should those images be shown? Where should they all go? Migrants vs. Refugees… and the list goes on, when will this stop?

The hypocrisy of which country should take what percentage of refugees, and that’s what they are, refugees, people fleeing war. People seeking refuge and safety. The morality of ‘numbering’ people is a stark wake up call, well it is for me anyway. It is a reminder of those treated inhumanely in Auschwitz. These are people who had a home, had a job, had a life, but now have none of those. Their homes no longer recognisable, their lives destroyed. I cannot imagine what it is like to know that my family was in such peril. I wake each morning in a warm bed, with my head on a pillow, not a cramped, dirty, concrete floor. Children should not see deep fear rooted in their parents faces and children should not witness violence, destruction and death on any scale. Children should not know such fear.

William never knew fear, never knew what it was to be hungry, never knew what it was to feel cold, to feel the cold that those children must feel on those boats, making those long, arduous treks for hundreds of miles on an empty stomach, freezing cold. How must it feel, to really know that this is a better option than what you are running from. What would you do if the street you lived on looked like those in Syria? Your ability to feed your family diminished, your life torn apart. If that was me, I would undoubtedly get as far away as I could, it wouldn’t matter what country, it wouldn’t matter how I got there but I would hold my little boy safely against my chest and I would walk until every ounce of energy had been squeezed out of me. Would I get on an over crowded boat to make the most treacherous journey of our lives? If what I was leaving behind was a one way ticket to death then the answer would be yes. If I had no other option then I would do anything to get William to safety. To watch the news, to see those photos of those brothers and many other children washed up on the shore, the perilous sea taking no prisoners makes me realise how lucky I am.

I lost William, I lost my purpose, my reason for living, but one thing I do know is that for each of those 382 days William never knew fear. As a parent can you imagine the utter terror you must witness in order to put your child at risk knowing that staying on land meant certain death, very few reading this will know that intensity, decisions no parent should ever have to make. A responsibility that comes the day you fall pregnant, responsibility for another life, to love, to nurture and to protect. I sit here now and close my eyes and I cannot even comprehend the position Aylan’s father and many others must be in.

Putting all political arguments to one side, I know people’s views are mixed on the humanitarian crisis that is happening. Throughout the industrial revolution, whilst the world economy grew, it was not distributed evenly. The refugees are just like me and you, and more importantly their children are just like your children. Those families experience the delight of finding out they are pregnant, the euphoria or holding their baby for the first time, the joy that comes with their milestones. Just as I go to work in the mornings, so do they. As a mother stays at home and looks after her children, so does a mother in Syria. We all want the best for our children, the best life, the best food, the best education, to keep them safe but those of us living in the western world do not really know what it is like to want real safety for our children. The difference between life and death.

So, Abdullah, from one bereaved parent to another, you did your best, you did what you thought was right, you tried to get your family to safety. Just as I did with William, I did my best, I did what I thought and was told was right, I always made sure William was safe. But we both know these things don’t matter, because their lives fall in our laps, when I look up at the stars this evening I will know that you are underneath the same stars. When death knocks on the door we were both powerless. Now our boys play in Heaven with no boundaries and no fear.

Day 1 – Houses of Parliament with William

My beautiful boy xx

My beautiful boy xx

Pride of place...xxx

Pride of place…xx

 

 

 

 

 

 

 

Arriving in London the tube gave me the opportunity to study my fellow traveler’s. Exhausted from the drive from Cornwall and the rush to catch the train, although quite why we were rushing I will never know. Swept along in the madness, I felt obliged to pick up my pace just to keep up. After finding a seat on the train I tucked the bag under my legs and hugged my handbag. William’s teddy safely tucked inside. 7 stops to go. As my body gently swayed to the motion of the train I gazed around. Who are these people? Where are they going? I was sat opposite a middle-aged man, I noticed he’d not shaved in a while, he didn’t have a manicured beard but an unshaven one. He was staring out of the window, trapped in his thoughts, rubbing his eyes, I wondered what was troubling this man. As I looked at him, through the reflection in the window I pondered whether he might have lost a child like me, all of a sudden my shoulders relaxed, my body giving way to sympathy. I didn’t think it possible that 2 strangers sat in the same carriage could be on the worst journey of their lives. As I studied the man’s face I knew that my initial anxiety was completely unfounded, I didn’t need to be afraid of strangers on the tube, after all what could they possibly do that could hurt more than the pain that engulfs me everyday?

I was worried about William being in my bag, knowing that this teddy was by far the most important tangible item that would ever be in my possession. Priceless. After arriving and checking into the hotel we were ready, ready to make our nerve-wracking journey over the bridge to the Houses of Parliament. As Paul took a photo of me holding my special bear in front of Big Ben we received some strange looks, did I care? not a jot.

William, Mummy and Big Ben xx

William, Mummy and Big Ben xx

William the visitor xx

William the visitor xx

Going through the security at the Houses of Parliament was interesting when the Police saw the teddy in my bag. I was almost itching for them to ask why I had a teddy, I couldn’t wait for the teddy to set the scanner alive with its metal heart and precious cargo, but it didn’t. William had his very own visitors badge. Deep inside Parliament we waited with William sitting on my lap. We couldn’t visit the commons where there was a live debate, because that meant leaving William in a cubby hole at security. I politely declined knowing that I would never be separated from my precious cargo. William stayed with me. Always. We waited, Paul, William and I on a bench, several high-profile politicians afforded us several sideways glances, why is that woman sat there, dressed up smartly holding a teddy bear?

Me and my boy xx

Me and my boy xx

It was time, 4pm. We filed through to the reception past security, with all the attendees, some with very small children, looking at them I felt a pang of envy, why do they have their children and I don’t have mine? Of course, I don’t wish them harm but why wasn’t mine lucky? Those parents were so lucky to have a ‘sepsis survivor’. Making my way into the room where the reception would be held, my eyes darted round the room trying to locate William, and there he was. A large easel displaying the most beautiful photo of my darling boy. I took William out of my bag and held him close to me, I stood in front of his photo drinking in his captivating smile, the sparkle in his eyes, I was overcome with emotion, the tears came. The reason we were there was overwhelming me. My amazing little boy was dead. As guests milled around I met others who have also lost children, young children like William, I was blown away by their courage, their strength to talk to a sea of unknown faces about their most tragic loss. I stood at the front watching in awe as Ron Daniels, CEO of the UK Sepsis Trust read an excerpt from my blog, holding William, my eyes never faltering from my bear. As I listened to the facts, to the alarming amount of lives claimed by sepsis every year, 37,000. 10,000 children of which 1,000 of those die. William was one of those.

It was extremely hard to stay vertical for the remainder of the event. I wanted my bed, I wanted quiet, I wanted William. I wanted William so much, not a photo, I wanted William. To hold him, to close my eyes and breathe in his sweet smell. To feel those delicate fingers on my cheek. To hold him in my arms once again. That should have been William running wildly around the room, a survivor, but he wasn’t, he was one of those figures, having lost their lives to Sepsis. It is surreal. How could he die from a complication of pneumonia? How could that pneumonia not be diagnosed? As I stood in that room, in the heart of the Houses of Parliament I have never felt so isolated. This was the first day I was to really test the mask out. I didn’t do a particularly good job. I was miserable, I cried, I couldn’t get my words out, but I was there, 400 miles from home, with William. I got my little boy to the Houses of Parliament.

William is off to the Houses of Parliament

Balloon for my William xx

Balloon for my William xx

Tomorrow Paul and I are off to London, with William of course, to share William and his legacy with the world. We have been invited to the Sepsis Parliamentary Reception in the Houses of Parliament. The event is with parliamentarians and clinicians to discuss sepsis, and to learn more about the support available and what more can be done around sepsis treatment. The Rt Hon Jeremy Hunt, Secretary of State for Health will be speaking along with other key speakers.

As you all know it was sepsis that ultimately took William’s life, a complication of pneumonia. The UK Sepsis Trust has been working with parliamentarians to raise awareness of sepsis. Sepsis is a life threatening condition and arises when the body’s response to an infection injures its own tissues and organs. Sepsis leads to shock, multiple organ failure and for 37,000 people every year in the UK, it leads to death. William is one of those. Sepsis is an easily preventable illness and easily treatable. We hope to raise awareness by sharing William’s story with the world, to lower this number as much as we possibly can.

On Thursday we will then be attending the book launch of ‘Three and a half heartbeats‘ a novel written by Amanda Prowse. This work of fiction takes you on a journey of a young family who lose their young daughter to sepsis, and the pain that follows. All the proceeds from this novel will be donated to the UK Sepsis Trust. Paul and I are attending after being invited by Amanda Prowse to highlight that the words so eloquently written in her book happen in real life. We will be meeting other families stranded in the same position as us, bereaved by sepsis.

I have made little boxes containing a balloon with string and a little notecard for a message to give to those who wish to release a balloon for William, to send all the way to heaven for William to play with. I have made sure that the balloon’s that we use are biodegradable so no harm on the environment.

We will be taking William with us, tucked safely inside his teddy. We’ll be taking William with us on every step of our adventure, an adventure for him, a journey to spread the word, and a journey to share William with the world. If you would like to release a balloon for William, please do, they were his favourite toy. He loved them, if possible we would appreciate you using a biodegradable balloon so it doesn’t cause any harm to the environment. If you do, please send me an email with a photo of you with your balloon and I will post it on my blog, amotherwithoutachild@gmail.com please watch this space for William’s big adventure xxx