Why I’m not angry and why I will always be positive

Is seems so cruel that this week you would have started prep school. I have found it particularly difficult to see all the happy, smiling children starting their big adventure. Without thinking last Wednesday, I returned home from dropping your little brother at nursery and I drove through the town, past the infant’s school. A herd of small children and their parents. You can tell the youngest ones, all neat, pristine and excited. That heady mix of excitement and fear of the unknown changes to normality as you advance through the years in school.

It really is that first step of freedom, independence if you like. Somewhere where you will be able to forge your own life, make friends, carve your future in to the universe. Where, I, as your mum desperately wanted to wave you off. I wanted to experience that mixture of pride and nerves, not because I don’t think you would cope, but nerves about letting you go just that little bit more.

Me and you dad had it all planned out. We had reserved your place at prep school and paid the fee when you were just a few months old. We’d poured over the prospectus, pointed at the amazing activities on offer and imagined how cute and grown up you would look in the blazer. It will always remain an imagination for us. We won’t ever get to dress you in your uniform and adorn a blazer on your shoulders, no doubt, swamping your tiny almost 5-year-old body, with an equally over-sized rucksack on your back. But it would have been perfect. I cannot imagine anything more perfect.

This past week got even harder. I had to complete a form which required me to input the number of dependants I have. Staring at the tiny white box, I could barely force myself to scrawl 1 in to the box. It just felt like those 4 solid black lines were stopping you from also being in that box, because of course I have 2 children, but I no longer have 2 children that are dependent on me. I only have 1 child that I need to buy nappies for, I only have 1 little mouth to feed, I only have 1 child to tuck in to bed each evening. Don’t get me wrong, I’m not ungrateful. I am desperately grateful, I consider myself lucky, lucky that I have a happy, healthy toddler. I consider myself lucky that you are my son, that you picked me, I consider myself blessed that I was able to carry you inside my body for 9 months, that I got to give birth to you and feel every second of it and that I got to hold you in my arms for 382 days. I would rather have had 382 days than none at all.

I quite often get asked how I cope, how I manage to be so resolute in my mission to raise awareness of sepsis. Sometimes I ask myself how I remain so positive. I have the answer to that question. It’s really very simple. The one thing more than anything in the world that you want is your life. I have mine. I will not waste it; to do so would be like undermining the fact you lost yours so needlessly. Sometimes, like this past month, it has been a struggle. But I know that by being miserable, the only person it is affecting is myself, and those around me. What sense is there in that? I could be sad and angry that you died, or I can be happy and entirely grateful that you lived. You gave me the ability to be able to view life in its entirety, simply because your entire life was limited to only 382 days. None of us know how long we get to wake up every morning. So, I am going to use my life to be just like you were, selfless, loving, and living my life with a glass half full, not empty.

In your short life you didn’t know anger, sadness, regret, or desperation. I was your mummy then, and I still am now. So, I am going to share your positivity and love with the world.

I won’t ever get to see you in your school uniform, I won’t get to collect you and listen to your ramblings about your first day, or any day, I won’t get to help you with your homework, or console you if you weren’t picked to be in the team, I won’t get to watch you grow, I won’t get to hear you say I love you. But I know you loved me, and you know how much I love you. They were the last words you ever heard me whisper. So, I may be without a lot but one thing I am is your mummy.

We will never know what you would have grown up and become but one thing you will always be is my son, my baby, my forever William.


www.justgiving.com/williamoscarmead

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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

What is this feeling called?

What is this feeling called? What would you say this feeling is called, the way I felt when this photo was taken 2 weeks before William was born. I can remember having this photo taken, and I can remember the photographer reminding me to keep my eyes open, I kept closing them, because I was in my own world, a world of just me and William. A world that I felt desperately safe in, a world where I knew my little boy way safe. A world that I couldn’t wait to introduce my little boy to, but equally not wanting to share him with anyone. I needed to see his face, I needed to touch him, I needed to hold him, to know that he was real.

Every day of his life, I felt that way, totally safe, totally comfortable, encapsulated in his love, and I sincerely hope that William felt that way too.

How do I feel now? As most of you know NHS England visited us with their final draft report into William’s death recently. As well as the final Serious Incident report from South Western Ambulance Service (NHS 111). I’m not prepared or ready to disclose their contents or comment on them yet. Many of you know me by now, so you will understand that I have highlighted several areas for fine tuning. But….

For the last 333 days my body, my mind and my whole being has been pushed, pulled and tested in ways that I didn’t know possible. I have fought with strength I didn’t know I had, I have forced myself through each day knowing that tomorrow I would need to continue the fight for my little boy. My whole being has been running on an inner strength I didn’t know existed, but I did, that inner strength has been there since the moment that I fell pregnant, that inner strength, that fight, that refusal to back down, that passion, is called love. That strength is William. That is what William was and still remains to be, my strength, my inner strength. Everything I live for. That is what the definition of what a parent is. That is what the definition of a child is. There are no breaks, there are no gaps, there is no contest, there is no divide or anything material or intangible that will come between the love that a mother has for her child, the love that I have for William. Simply, there is nothing that will ever impact the bond I share with William, even death. In death I love him just as I did when he graced me with his beautiful presence.

I have fought so hard, every phone call, every meeting and for each of the 237 emails I have sent, I have achieved what William deserves, recognition that his life, that his 382 days are worth just what my 10,571 days are. The last 11 months I have been carried along by this desperation to achieve recognition for William’s life by those that did not save him. I have almost accomplished this. There is relief, there is anger, there is total disbelief, and my whole body is fizzing with anxiety, pent-up anxiety that i have needed to drive me forwards, I cannot lose the grip I have at the last-minute.

In 2 weeks it will be William’s second birthday, a day that he would delight in. A day he would eat cake and spit out because it’s too sweet. A day he would stay awake all day and not cry. A day that he would grace us with that ear to ear smile, a smile that melts everyone’s heart. That smile belongs to my little boy. My. Little. Boy.

I still get through each day knowing that tomorrow doesn’t have to come if I don’t want it to, that theory has worked for the last 333 days, so I’m sticking to it. I don’t know how to be brave, but I’m not afraid of falling. The hardest feeling in the world is knowing that all of the love I have for William is now spent sharing him with the world, when all I want to do is have him with me and keep him to myself as the most precious secret, but I can’t, my love for William is ploughed into sharing him, allowing others to love him, allowing others to understand the love intertwined between him and me. I hate that this is the only way I can share him, show him off to the world, but I have no choice, it is the most unusual sense of pride, a guilty pride. I just know that every step I take is ‘one step closer’.


 

http://www.justgiving.com/williamoscarmead

The conflicting emotions of a bereaved parent

William in his final outfit xx

William in his final outfit xx

I can remember back when I sat down on Thursday 18th December, 2014, and I typed into Google ‘baby coffins’, closely followed by ‘coffins for children’. It was about 4 pm and I had been awake since the 14th of December. I knew we would have to pick a coffin, but when the funeral director mentioned to us that we would need to pick one I didn’t want to, I didn’t want to search for it, I didn’t want to see it, I did not want to know. I knew I had to pick it. I knew I couldn’t delay the decision, my little boy was coming home from his post-mortem and he would need somewhere to sleep. It took all day of staring at the screen to raise my trembling hands and type those words into Google. I didn’t want to but I knew I had to, but I also knew I had to get it right, it had to be perfect, this would, after all be William’s final little bed. Rather than moving William into his toddler bed, we were preparing to encase our little boy in the most beautiful satin. A bed that once closed would never be opened again. This decision was agonising, my whole being pulled in every direction. My mind was screaming WHY, WHY, WHY, my heart was screaming NO, NO, NO but my head was trying desperately to fight to make this decision.

We did make a decision, and on Christmas Eve at 3 pm, William’s coffin arrived, and instead of taking him to sit on Father Christmas’ knee with our family, I opened the door at the funeral directors, alone, and I opened the lid, and there was my little William, the fierce pain that drove me to walk forwards, the intensity of love that allowed me to wrap my arms around my delicate little boy and lift him into my arms.

The mother in me that needed to nurture him, he was cold, he needed to be warm. Being torn in two, I didn’t want to be sat there holding my little boy like this, but I knew I needed to dress him. Paul and I had carefully picked out the little clothes that he would wear. The little baby grow, ‘Mummy’s little star’ emblazoned across the front, could not have been more perfect. He is mummy’s little star, and now he really was the brightest star in the night sky. I was shocked how hard it was to dress him, it was easier to dress William when he was wriggling all over the place, but now, he couldn’t help me, his weight so heavy in my arms. We had picked his little birthday outfit to wear. We didn’t want to let these clothes go, we wanted to hold onto them forever, but we knew that his little first birthday party was so happy, we have so many photos of William in that little outfit. So we knew we had to do it. Before doing the little button up on his chinos, I took the opportunity to poke that little bum, still so squidgy. After putting his stripey little top on, I pulled his socks on, and I couldn’t help but let out a little giggle as I talked to him, and made him promise mummy that he wouldn’t take them off. He didn’t promise, but he didn’t take them off. I wish he could. We didn’t put any shoes on him, he didn’t like shoes, the shoes he took his first steps in are now hanging on our wall at home.

The shoes of 'those' first steps xx

The shoes of ‘those’ first steps xx

After dressing my precious little boy, I sat in the box chair, my legs over the arms, cuddling my little boy into me, so tight, and I broke, I hated this, I hated this so much but I loved it, I loved holding him, I felt safe, I felt at home, I felt like we were one. His beautiful hair was still so shiny, so much hair, I ran my fingers through it as my tears soaked their way through. The glitter still in his ear, from the little Christmas Tree he’d made us on his last day of nursery. I now knew I’d made the right decision to ask the pathologist not to wash him. I couldn’t bare to think at the time my beautiful little boy laid out in an operating theatre to be washed with cold water, but I knew I had to ask them not to, I knew I needed to see this glitter in his ear again. There it was. A painful but beautiful reminder of my little boy having fun.

When i knew William was going to have a post-mortem I toyed with the decision of whether to look at the scar. I knew I would. I had to know. I didn’t want to know, but I had to. I did look. A red raw Y right there, it was horrible, someone had touched my little boy, someone had hurt him, but I knew they hadn’t, I knew they’d been gentle, the scar, just like red pen. I spoke to the pathologist that carried out William’s post-mortem, I didn’t want to, but I had to talk to the man who had known my little William, had seen his beautiful little soul. Amongst other things, he said to me, ‘he’s simply so beautiful, such a lovely little boy’ I hated that, but I loved that, even in death he was beautiful. I had asked him not to cut or shave William’s hair, I just couldn’t bear that, to strip him of the feature that made him look like a little boy and not a baby. He didn’t, you could barely see the scar. I traced my finger along the stitches, I slowly covered them up with William’s locks, a scar never to be seen again.

William was 70 cm long when he died. Too long for a baby coffin, but too small for an infant coffin. We placed a little teddy with him to keep him company, a photo of his mummy and daddy on his chest, his arms wrapped around us both. How I wish I was going with him, to not be trapped here without him. Everyday I struggle with this inner fight. Not wanting death to separate us, I fight not to join him, knowing how precious life is, but at times, and more often than not, this fight is impossible. Living, existing, but not really wanting too, but not wanting to die either.

I didn’t want to see William this way, but I knew it was the only way that I would be able to, so I did, everyday until the day I was no longer able to. Sometimes if I was able, I visited him twice a day. Christmas Day I sat with him alone, my coat wrapped around him, his head resting on my chest, I closed my eyes, and for the first time since he fell asleep, I could fall asleep, safe in the knowledge that he was here, with me, where he belonged.

January 3rd, the day the angels came to earth and took my boy away, 9.45 am, that was the last time I ever saw my son. Ever. I couldn’t close the lid, but I did, because I knew it had to be me. How could I close the lid on my son, knowing I would never see him again. Darkness enveloped me as I stood staring at my boy for the last time, but I knew that I had to turn around and leave him. It hurts, it hurts now, it really fucking hurts. It hurts, knowing that was me, it was me who closed that lid, it was me that walked out backwards, not taking my eyes off him. It was me standing in the way of the light that would take him. In that moment I knelt on the floor and I prayed to God to take me too. I begged him, like I begged William to wake up, our cheeks touching, as I wailed on the floor next to him. God didn’t listen and he wasn’t listening now, if he was he wasn’t doing much about it. It’s not his fault though, I know that. There is one person who the ultimate responsibility for William falls, and that is me, one of the biggest conflicts of all. I know it wasn’t my fault, I know that, I would have, and still would do anything to put breath back in his body, but I couldn’t save him. I tried, I fought so hard. I fought with every ounce of my body and my soul to get him the help he needed, but he didn’t get it. There are people out there who know this and they will live with this knowledge for the rest of their lives. But they don’t have to live without their son, they don’t know what it feels like to blame yourself but also to know it’s not your fault, they don’t know the pain of finding their child, dead. They don’t know the pain of picking their child’s coffin, they don’t know the heartache of picking the last outfit their child will ever wear, and they will never know the pain of closing that lid and walking backwards out of a room, never to ever see their child again. I will never forgive them.

So you see, every moment is a fight, every moment is painful, every step hurts. Every breath is taken wishing it was your last, but knowing that it’s not. And i can tell you that the more you love, the more you fall. And I have fallen, I’m still falling, at a million miles an hour.


http://www.justgiving.com/williamoscarmead

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.