My inspiration for 2016 – William

My boy and I

My boy and I

As the evening draws in and darkness approaches, I say goodbye to 2015, but I do not welcome 2016. For I would not have cuddled my baby in 2016. This year I didn’t hold my baby alive, and next year I would not have held him at all. Although William lived for 382 days, he did not live one full calendar year.

Not only does today represent the end of a very hard and very painful year, today marks 382 days without my baby. William has been gone the same number of days today as we were blessed with him. How does that seem possible? The most exhilarating and amazing 382 days, compared to the most harrowing 382 days. I simply cannot make sense of it, I still cannot understand, accept or seemingly learn to live with it. I’m happy with that, right now, I don’t want to. Why should I? Losing William has enriched my life with the ability to see past what most people understand as a ‘good life’. To really understand the depth of love is to lose it, not until after you lose it do you realise how much you relied upon that love. How much you needed that love. How much you needed that person.

Earlier, I sat and thought to myself, ‘you’re not even 30 and you’ve outlived your child’. I sat in William’s room and looked at his tiny little clothes, thinking how small they would look next to him now had he been here. His room should not be tidy, it should be cluttered with his toys. His cot should be a bed. His changing mat replaced with a potty. Our home is stuck in a particular time. A time that stood still the moment William took his last breath. Will that change? I don’t know, not yet, I don’t want it to. William’s high chair is still in the kitchen, his cups and beakers are still in the cupboard, his cereals still stand on his shelf along with his other food bits. Well past their sell by date, but somehow to get rid of these would be like somehow getting rid of a piece of William. I am not ready for that separation yet. William’s pram is by the front door, the stones in the wheels from the last time it was used. His little coat still hangs on its peg and his toys still have pride of place in the front room. His car seat still adorns the back seat; every time I look in the rear view mirror I see it and it makes me smile. Imagining catching his eye as I drove along, his little face would burst into the biggest smile, babbling away, deep in conversation with himself after nursery. The replacement beaker still stands on my bedside table from the night he died, in case he needed another. The beaker that he last drank from in his cot is where he left it, the last thing he ever touched. I sometimes pick it up and place my fingers round the handles, knowing his chubby little fingers gripped this very handle. Knowing that his touch was once here. I still haven’t washed his handprints from the inside of my bedroom window. An ever lasting reminder that ‘William was here’. His toys are still in the bath and his toothbrush and toothpaste still in their little pot. For us, nothing has changed, our life hasn’t moved on, our life at a standstill, forever waiting, but I know we’ll be waiting a lifetime, William’s sweet giggle won’t ever resonate through our house again, his cheeky grin won’t fill my rear view mirror and his little fingers won’t ever hold that beaker again.

Some might say that we struggle to move on because we keep those things in their places, but that is not true, William was and still is a part of this household and this family. I need William’s things around me, to look at, to touch and hold, sometimes I remember a different memory and it makes me smile. Time does not heal, whoever said that was so very wrong, time may give you the ability to live a different life but it does not heal the gaping chasm that William has left. The scar tissue has not begun to form. I have no protection from falling in that pit. As time passes my flashbacks and PTSD seem to be increasingly more and more crippling. I don’t need triggers, those thoughts, visions and memories are right there, right in the forefront of my mind. This is what grief really does to you. There is no let up. It does not discriminate. It holds you firmly in its grip. Am I depressed? Yes, clinically so. Do I take medication to help me sleep, to stave away the crippling symptoms of anxiety, to help lift my mood, to help discourage suicidal ideation? Yes. Do I have a drink? Yes, just like you I have shit days, sometimes things go wrong, normal things, like the washing machine that William decided he needed in heaven on Christmas Eve. Do I struggle to get out of bed? Yes. Do I struggle to concentrate? Yes. Do I struggle to remember things? Yes. Do I struggle to go out, to be motivated? Yes. Do I care? No. I am simply a machine. I plug myself in at the end of the day, I recharge and get up and do my jobs the next day. Do I do them with conviction? No. Do I do them with care? No. Do I do them because I want to? No. Do I do them with hope? No. Am I worried? No. This is life. This is the card that I have been dealt, but goodness me, I’m in better shape than William is. His little life snuffed out because people did not do what they were supposed to do.

This year I have been well and truly submerged against my will into everyone’s worst nightmare. The terror that runs through my veins, the fear that makes my heart beat, very few people have experienced and I’m thankful for that. My eyes have been opened to a world of mental health that I only knew existed in the media. Don’t walk around with your eyes closed, make eye contact with people on the bus, the tube or walking down the street. If someone drops something, help them to pick it up. If someone elderly say hi, say hello back. Take the time to love, because you don’t know however small these little gestures are to you, to someone else they will be the highlight of their day or week. For someone else you can bring joy and comfort. Not just family and friends but strangers. Life is too short, I know this, you know this, please don’t walk around with your head down, rushing everywhere. Don’t sit on the bus on your phone, say hi. Give that homeless person a sandwich and a hot drink. Pick up the phone to your elderly relatives whom you rarely speak to, they won’t be there forever, they helped create the world that you live in today. You are their inspiration, be someone else’s. Most importantly. Look at your child and know, really know that you are their world. So make sure they know that they are yours.

My life is run on passion and love and drive and determination, my life is run simply on my resounding, unwavering love for William. He is my guiding light. He is my hope. He is what drives me, knowing I must get the answers, knowing I must fight for him, knowing that I will never settle for anything less than the truth. My life is not run on hope for the future, nor happiness but a bittersweet necessity to share my son with the world.

To be blessed with William, was to be blessed with love. My life furnished with everything it could ever possibly need and more. I cannot even begin to put in to words the sheer desperation I have to be with my son. The only hope I have is that is not too far away, hard I know, but the truth. But for now, my only wish for 2016 is that everyone will learn what really happened to William and what should have happened and in doing so educate themselves about sepsis and hope that those that made mistakes never make them again.

For now, I say goodbye to the last year that I ever held my child. Something I don’t want to do, but of course, no one can stop time. If they could I would have stopped it a long time ago. My wish for all of you in 2016 is that it brings you as much comfort as you have all brought me in 2015. That it brings you time with your loved ones that cannot be replaced. Love, learn and be inspired. William is my inspiration. My life and my love.


www.justgiving.com/williamoscarmead

 

Advertisements

What is mental health?

Before William died I had no experience of the mental health care in the UK. I’d had no reason to need it personally, nor had I known anyone personally suffering with their mental health. It wasn’t even taboo, because I didn’t even afford it much thought. I would often catch the news, mental health being known as the cinderella service of the NHS. Hard to access, not enough facilities or not the right facilities. This may be true in some areas or for others experiences. But, I can say that had it not been for the care and guidance of the mental health team in Cornwall, I would not be here. They have been the scaffolding that has been wrapped around me for the last 11 months, and continue to be. When I fall I know they are there. When I’m falling and I don’t know it, they catch me.

Anyone in my position will know that time is like a punishment. Nothing you can do to stop it, always ticking by, excruciatingly slow. Initially, days passed in shock, weeks passed in disbelief and months have passed without me even knowing, carried along on the tidal wave of grief, churning me round and round in the eye of the storm, discarding me just where it wants too. In the initial few months, everyone has time, everyone touched by William, and they now have a life tinged with sadness, but albeit a life that they return too, maybe after the funeral, maybe after the inquest, maybe when I returned to work. Slowly people drift away back to their own lives, no time to sit with me anymore to go over and over things like I did back then. I still need to do that, so who do I lean on, who do I turn to when people are living their lives and I am on my merry-go-round of despair and can’t get off? I turn to those who I know will always be there, with a bucket load of time. Whether it be when I have a complete meltdown in the dairy aisle of the supermarket and the crisis team need to come and rescue me or whether it be the day before my scheduled one to one appointment and I need them now. I know I can rely on them to change my appointment.

I have full capacity. I am not mentally ill. I have a problem that they cannot fix. They cannot bring William back. I could be hospitalised because of my suicidal ideation, but knowing they could not fix me, and they would only be removing me from everything that is William would increase the intensity of those feelings. So, what do they do? One thing they haven’t done is give up. But, one thing they have done is respect me and respect my decision. I am a vulnerable, high risk adult. What does that mean?

Vulnerable Adult – A vulnerable adult is described as a person aged 18 years or over, who is in receipt of or may be in need of community care services by reason of mental or other disability, age or illness and who is or may be unable to take care of him or herself, or unable to protect him or herself against significant harm or exploitation.

High Risk Adult – Current or recent moderate / high risk of intentional self harm

So that is what I am. Am I embarrassed or ashamed to be in this category of society? No. You see just like any other debilitating illness, mental health problems are real. They don’t go away when you take medication. You can’t ‘just get over it’. You can’t make yourself want to live. You can’t make yourself eat or sleep if your body is telling you not to. You can’t stop tortuous memories of finding your son passed away in his cot. You can’t stop hearing the call handler’s voice as she talked you through CPR. You can’t ever stop the image of your child in his coffin just pop into your head. You can’t stop that fear of knowing that tomorrow will be just as bad, after all William won’t be here then either. With these flashbacks and thoughts come physical side effects. Chronic insomnia, days with no sleep, after two, three or four days you start zoning out. In a complete daze, losing hours at a time. Sometimes you imagine things to move, sometimes you think you hear something, but you are alone. It is terrifying. Sometimes the anxiety is so bad, regardless of how much medication or exercise you do, you cannot write, because the tremors control you. Sometimes I cannot stand colour, movement, noise. Why? Because I simply cannot process it. The scores of pock marks on my skin, when in an effort to control my anxiety I pick my skin. Or bite my nails. Or pull a few hairs out. Sometimes I don’t want to talk, or involve myself in the conversation. Why? Because sometimes it is such a huge struggle to even be in another person’s company, when all you want to do is be swallowed up by the gaping pit of grief.

Mental health is not a choice. It does not discriminate. No matter your colour, your religion, or where you were born. If it wants you, it will take you.

Everyone in their life at some point will have suffered a bout of depression, most people have seen or gone through trauma like a car crash, a marriage breakdown, or the loss of a parent. But life after losing a child, is an indescribable journey of survival. A life sentence.

People move on. But I am stuck, sometimes the quicksand is deeper and the struggle to fight to get out is just that, a fight. On these days, I know that if I call the mental health team, they will come with their scaffolding, they will build it up around me as high as I need it to go. They don’t just build it and leave. They wait. They listen with compassion. They cry when I cry. They don’t try to fix me, knowing that I can’t be fixed, they guide, advise, and aid. And most importantly they do not judge, they understand. They understand that mental health is not a taboo. It is very real.

I saw one particular psychiatrist for months. We had intensive EMDR sessions, followed by psychotherapy. As a doctor he wanted to fix me, make me better, but he knew, he understood, all he could do was help to make the path I am on a little easier, so maybe when I get to the end, it wouldn’t be the end.

Not many of you know but at the end of January I spent time in a secure psychiatric unit, why? Because I had tried to take my life earlier that week, I was found in time. Had I not been found, I would not be here. Several days later I knew what that feeling felt like. The desperation to be with William, it is not a means of escape, it is not me trying to escape the pain. It is about wanting to be with my son. To sit there and actively know that what you are about to do is end your life is an extremely courageous and brave step to take. Knowing there is no returning. No going back. To be at a point, where for whatever conflict is taking place in your head, people need to exit their life, is not a cowardly way out. For some it is the only way out of a lifetime of enduring pain. For some it is a means of escape, who are we to judge, that whatever is happening in their head is tolerable or not? Because I for one moment ask you to put yourself in my shoes. If you lost one of your children, what would be your oblivion?

When I was in that psychiatric unit it was very apparent that I am not mentally ill. I have heard of schizophrenia, and psychotic disorders, split personality disorders, bipolar as I am sure most of you have, you might know someone with one of these mental health conditions. But wow, those people do not need shunning, do not need bullying, those who are very poorly require the most intensive round the clock care that can only be given in a secure unit. I sat with one man. I won’t tell you his real name, but I’ll call him John. John was 35, that is what he said anyway. He shook my hand and said hi, my name is John. I politely replied, that my name was Melissa. Within 15 minutes we had repeated that very small conversation over 30 times. Did I mind? No. John told me about his job in a shop. Told me about what clothes he sold, he told me about the people he worked with, he told me where the shop was. John had been in that unit for 5 months. John didn’t have a job. John didn’t work with anyone. I don’t even know if he was 35 and his name was John. But it didn’t matter, because for those 15 minutes he was happy. Is it his fault that he has been afflicted with a terrible mental health illness? Does he deserve it? Did he ask for it? The answer to all those questions is no. But John didn’t get a choice. Schizophrenia and psychosis picked him. I was there purely for my own safety. John was there because that is where he was living.

So I ask you, when you see me walking down the middle of the high street, my eyes bloodshot from the lack of sleep, my hair not brushed because when I left the house I was too busy kissing my son’s casket goodbye to remember to brush my hair, that I am on my way to have more scaffolding put up to help me continue the fight. Without that scaffolding I wouldn’t be here. Without the mental health team I would not be here. I can’t help the way that I feel. I can’t just change the way I feel, it’s very real and all-consuming. Knowing I can make that choice tomorrow prevents me from doing it today. It has worked so far. I have a safety net. Suicide is my safety net. I don’t need judging, I don’t need fixing, I need scaffolding. If you want to judge or fix then please don’t. If you want to scaffold, build away. I do not see it as ending my life, I see it as going to continue it somewhere else with my son, for eternity.

Www.justgiving.com/Williamoscarmead

Your definition of hope, my definition of hope…

“Hope” – noun

  • a feeling of expectation and desire for a particular thing to happen.
  • a feeling of trust

“Hope” – verb

  • want something to happen or be the case

Today I answered a question when submitting content for a book, What is your definition of hope? No-one has asked me this question, nor have I spoken of hope. This word has peppered so many conversations since William died, but never mentioned by myself, because what do I hope for? Honestly, I hope that when I close my eyes tonight, it is for the last time. That when I wake it is with William.

My desire to be with William constantly squares up to the pain that I feel. A daily battle, there is no choice, there is no mercy, no resolve. The only desire I have is for William to be here with me. My life dictated by this desire, some days the hope of not waking for another day over-rides the pain, the hope that tomorrow might not happen. Other days, the pain paralyses me in its unforgiving grip. You see, the only desire i have, will never happen, not ever. Stripped of this desire leaves me with nothing apart from the hope that tomorrow is the first day of my eternal life with William.

Have you tried to live without hope? It doesn’t matter what I have in my life, a good man, a good job, wonderful family and friends, the list is endless, but it’s not William, my son, my world, my life. There is nothing that I wouldn’t sacrifice including my own life to give William his, to give him the chance to breathe, to love, to grow, to learn, to live the life that we gave him. Everything pails into insignificance, there are no variable factors, there is nothing that I would rather have in my life than the opportunity to be with William. I am focusing on William’s Legacy, I am busy, I do work, I am fundraising, I am doing my degree, but these are not reasons to stay here, these are not hope. They are part of a life that I have been left with, not by choice, but forced upon me.

I suppose what I’m trying to say is I would like you to try to understand the difference between your hope and the hope of a bereaved parent.

You hope that your child will sleep through the night so you can get a few hours sleep. I hope that I don’t sleep, because sleep induces nightmares of the day that I found William  in his cot, never to wake again.

You hope you’re doing the right thing, the guilt that disciplining your child brings. I hope that William doesn’t blame me, I hope he doesn’t wonder why I couldn’t save him, the burden of guilt I carry, a heavy weight around my neck, always.

You hope that your child’s first day of school goes smoothly, hope they will be full of smiles when they greet you at the end of the school day. I hope that one day I will get to actually see my child again, hope that I get to see William with my own eyes.

You hope that as your child grows up, makes friends, becomes more independent, that they return to you when they need a hug. I hope that one day I will be able to hold my baby again, physically, be able to smell him, to touch him and to never have to ever let go.

You hope that when your child has flown the nest, you secretly hope they have washing they need to bring home so you get to see them, hope they come home for a meal. I hope that William will be waiting for me, when I arrive in Heaven.

Hope for me is defined as being relieved of the sheer pain that emanates from my heart daily, but knowing this will never happen until I am with my baby again. Hope is that one day people will understand William isn’t replaceable, I don’t want another child, I want the child I had. Hope is that there is more understanding and compassion in a world that can feel so harsh and isolating.

Hope is knowing that one day, I will close my eyes and when I open them, I am with my forever child. I hang onto this. This is my only hope, and I hope that day is tomorrow.


http://www.justgiving.com/williamoscarmead

This is my nightmare, you are my dream

“The days will always be brighter,
because you existed.
The nights will always be darker,
because you are gone.”

I just closed your curtains sweetheart, standing at your window, my tears landing on your windowsill as I sobbed my heart out. I lose my breath, my chest racking as I struggle to contemplate that when I turn around I won’t be kissing you goodnight and telling you that I love you. Instead I blow you a kiss at the window, hoping that somehow you will catch it. As always, every evening I tell you that I love you, this I promised you when I first held you, close on my chest, all warm, a tangle of arms and legs. Mummy promised you that she would love you with every ounce of her being, and she promised that every night, the last voice you heard would be your mummy’s, whispering ‘I love you’. Mummy kept both promises. The last voice that you ever heard was your mummy’s, and the last words that you ever heard were ‘I love you’.

The next time I saw you, you were gone. At 08:47am on the 14th December 2014 time stood still; and from that moment and every moment since time has slipped away into oblivion. My world stands still, I feel like I’m in a wreckage. Spread into many pieces, but no matter how hard anyone tries, those pieces will never fit together again, because you are missing, the most important part, the core, my heart, I am an empty shell without you. Just a shadow, a ghost of who I used to be.

Life has kicked me so many times but when you were born Grumpus, I had finally climbed the tallest mountain. I stood there my arms spread wide, my eyes closed, the wind in my hair, looking down on the world knowing that this is what life was meant to be like, what love was meant to feel like. It was euphoric. I never imagined that life would come along with a wrecking ball and swipe me off that mountain, taking with it my life. Leaving behind only memories, wonderful memories but wonderful memories that are enough to break my heart.

Can you remember pickle, when you first slept in your own room, I think mummy was more apprehensive than you. You took comfort from your trusty thumb and Mr Reindeer, your little eyes fluttered as the weight of your eyelids became too much and you succumbed to dreamy sleep.  Mummy was there, and every night after. When I laid you down, kissed you goodnight and whispered I love you, I pushed your door closed, but mummy was at the end of your cot. Watching your chest rise and fall with every breath. Listening to the soft noises you made as you slept peacefully. Mummy would sit and watch you for hours, not wanting to leave, because she knew when she left that she would miss you. Grumpus, I miss you. I miss you so much. I missed you even then, when you were asleep. I don’t know how to miss you. I don’t want to miss you, I want you here. I was in awe of you then, and I’m in awe of you now.

When people say they miss someone, I don’t think they really know what it feels like to really miss someone. Knowing that they are never coming back. Knowing that no matter what you do, you will never feel complete again, knowing that the biggest part of you will always be missing, knowing that your life will never be whole. I do. I know what that feels like. I miss us, I miss our future, I miss life, I miss you. Everything you are. Everything you mean. Love sometimes comes like a dream, and it leaves like a nightmare. This is my nightmare, you are my dream.

Do you have any children?

Mummy and William selfie x

Mummy and William selfie x

The question that I have been dreading since the day that William became forever 12 months old. A very easy question to answer, of course I have a child, I have a little boy, his name is William. But, how can that question be answered without prompting awkward silences? I cannot and would not even imagine saying no, that would be like denying his existence, an intolerable thought that makes me feel sick just saying it in my head. How could I ever say no when all I want to do is shout from the roof tops, that I am a mother, my child may not be here, but he existed, he was part of the same world that you and I exist in today. And that’s exactly it, an existence, an earthly existence. I do not feel part of my life anymore. I feel like I am viewing life from behind a thick glass, I can see, I can hear muffled sounds but none of it is real, none of it is relevant. I can just see people moving from A to B. Getting in their metal cars, driving to work, not really paying attention to what is going on around them, making meaningless conversation about the food you ate and the television you watched the previous evening, undertaking a full day’s work to earn money to pay the bills for the small brick house you drive to at the end of everyday. A brick shell that you pay money for, take ownership of, clean, a place to nurture your family and keep them safe. A place where you make memories, but what is all this worth without those that make these memories so special. As much as I am attached to my home, of course, this is where William grew up, learnt to smile, learnt to laugh and learned to love. But it is also where he died, it feels so empty and desolate without him, but yet it is his home. I no longer feel I belong anywhere, not even in my own life.

It is so easy now to see how life was taken for granted before, since William died I have become incredibly hypersensitive. I am more aware of my surroundings, noticing the tree tops on the way to work, not getting sucked into the monotonous tarmac as the road forges on; were the trees ever that tall? I’m sure I would have noticed that before. There are so many different species of tree on the way to work, I wonder how many? So many different shaped leaves, such a wide palette of colour’s, all merging together to form a sea of ‘green’. Sitting on a cliff top allowing yourself to relax, really relax, allowing your arms to flop down by your sides, the tension to be released from your shoulders, what can you hear? Can you hear the waves? Can you hear the waves bearing down on the cliff? Can you hear the wind? As I sit there and close my eyes and let the darkness gather me up, i am aware of the hair on my arms tingling as they stand to attention. My skin succumbing to the sensation that is goosebumps, a reaction to my surroundings. This is what it is to listen, it’s not simply to hear, but to feel, feel your surroundings. Encouraging your body to let go of your peripheral vision and become part of the world. What does the wind really sound like? What does the wind really feel like?

It sounds relaxing, idyllic, at one with nature. Escapism. Freedom. To me I do not feel free, I cannot escape from my thoughts, my reality, the clarity of mind that keeps reminding me that William is not part of the life I’m viewing. The life that I am forced to be part of. By default I am here. Stuck, trapped. Suffocated. The breath knocked out of my lungs, by the wind that laps at my face as I sit there, no freedom, no escapism, just an annoyance, my long hair hitting my face as the unrelenting wind serves to keep me in the present.

As the date looms closer for William’s inquest. Just a little over 3 weeks. Preparing my impact statement seemingly an impossible task. How can i possibly find words adequate enough to write down, to read, to convey the depth of love for my little boy. Although I sit here and I write now. How can I do him justice. I don’t want people to listen to my words, I want those people to close their eyes and feel my words. I would like for just one solitary moment, for those people in that room to feel a tiny bit of my pain. There are no words for that. I cannot put into words the unfathomable pain that courses through my veins. As each day passes I find myself crying more and more, unable to articulate my pain. My body is tired, weary, the end I know is near.

I have an end date. When I close my eyes at the end of another day I mark off the calendar in my mind with a big black marker. Another day over, another day closer to the time when I can finally close my eyes, and open them with my boy.