Christmas and grief

Sitting on Santa's knee for the first time

Sitting on Santa’s knee for the first time

Today is a sad day, every day is a sad day, but this time last year we announced when William’s funeral would be. Instead of uploading hundreds of photos that all seemed to look identical, William covered in paper and sellotape, playing with the boxes that the toys came in, instead we were inviting people to his funeral.

Christmas, a time of year that over the centuries has evolved from its very religious beginnings, now a commercialised time of year, that we all use as an excuse to down tools and spend time with our loved ones. Who can blame you? No-one needs an excuse to see that joy on their little ones faces, that excitement of knowing Father Christmas is coming, writing a letter to Santa, leaving a mince-pie, carrot and a tipple for Santa on Christmas Eve, visiting any number of events laid on by local attractions for our children to sit on Santa’s knee, and finally that sound of tiny stomping feet and squeals of glee, when they discover Santa has been, a stocking brimming full of toys that will be played with once, a tree that is barely recognisable under the weight of all the gifts.

We had none of that. We will never have any of that. William didn’t get to learn about Father Christmas, William didn’t get to star in his first nativity, William didn’t get to write a letter to Santa, he did sit on Santa’s knee, his bear containing William’s ashes gripped tightly by Santa, but that isn’t what we imagined would be the first time William would sit on Santa’s knee. We didn’t get to track Santa’s sleigh as he visited those in the Far East before he made it to the UK, we didn’t get to buy him a personalised book from Santa. On Christmas morning we awoke to silence, no little feet stomping down the corridor, no squealing, no excited little face, no ‘mummy, daddy, he’s been’. No William.

Our floor was clear of wrapping paper, we didn’t have an obstacle course of toys littered around the house. We didn’t have a little boy to give his first brussel sprout too. We didn’t get to show him a cracker, he didn’t get to wear a party hat or a cute little outfit. We didn’t have the struggle to put him to bed, too high on the simplicity of playing with his toys. We didn’t get to pack him and 500 toys into the car to visit family and friends, where his beautiful smile would make anyone’s Christmas. No, we had nothing.

Instead we went away, we went to stay somewhere completely unfamiliar, needing to get away from the suffocation of William’s absence in our home. But, regardless of where we were, the crushing pain packed itself in our suitcase and followed us. My heart hurts, it physically hurts in my chest, it doesn’t go away when I breathe in or out, whether I lie down or stand up, whether I have a glass of wine or not. My chest is crushed, my heart aching, aching to hold my little boy on Christmas. Last Christmas William’s fragile and broken body was still with us. I held him for several hours twice on Christmas day. I cried over his beautiful presence, I held him so close, I feared I might squash him. This year, we didn’t even have that. There are very few that will understand this pain.

Paul and I stayed in a beautiful hideaway in Dartmoor National Park, there were families with children there, but we spoke to lots of couples who like us were ‘hiding’. Christmas not a happy time for them either. Some vastly wealthy couples, but grief does not discriminate, a loss of both parents recently meant one couple needed to be somewhere unfamiliar. At Christmas dinner, we had William’s teddy in a high chair, the chap on the next table ordered his parents favourite wine. Simple things, that somehow bring us closer to those loved ones we so desperately pine for. We met a U.S district judge, a man with a very powerful and influential position in society, reduced to tears by William’s story. For some Christmas isn’t a time of joy or craziness, it has become a time of painful reflection. A time that you look at your watch and hope that another hour has passed.

Every painful aspect a reminder of what should be, William would have loved the Christmas tress in every room, William would have loved splashing in the muddy puddles in his wellies, William would have loved the array of treats littered around the castle to keep the kids entertained, William would have loved afternoon tea, bitesize little sandwiches, perfect for his dinky little fingers, William would have loved to have found the stocking hanging on our door on Christmas morning, William would have loved to decorate the Christmas tree in our room, William would have loved the table magician, William would have loved the owl that sat on the reception desk, William would have loved watching the hunt as the horses and hounds made their way off the estate, William would have loved to sit in front of the grand fire by the most extravagant Christmas tree waiting for Father Christmas to call his name out to go and collect his present, William would have loved to watch the ferret racing, William would have loved the playbarn, William would have loved everything, but William was robbed of all of those things and we were robbed of William. All I wanted for Christmas was my son. Just one second, just one cuddle, just one stroke of those chubby little cheeks, just one look at that infectious smile, just one smell, just one touch. Just William. This is a wish that will never be answered.

I have felt nothing but guilt, my whole body consumed by Williams last few hours, what must my boy have been feeling, what did he want to say but couldn’t, what sort of mother am I to listen to what I was told to do, what sort of mother am I to listen to people who had no idea what they were doing, not just one person but multiple people, not just once but multiple times. The one thing I wanted to do and prided myself on was protecting my little boy, knowing that no-one could ever protect him and love him like I do. But sepsis does not discriminate, William was not unlucky, William was let down in the most unimaginable way possible. They have taken away our Christmas, our birthdays, every day, our life, our William. No manner of apology or putting right what went wrong will change anything, nothing will bring William back. Nothing can make Christmas bearable. Nothing can take away the fear, the anxiety and the guilt that any mother would feel for not somehow saving her child.

During midnight mass in the local church, William’s teddy wrapped in my embrace, I struggled to make it through the service, the tears came rolling down my cheeks, choking on the tears, the words the heart cannot speak. As I stood, I went to the vicar and I asked him to please pray with me. He held me and William, and he prayed that his little soul would be in peace and to bless his beautiful soul. He also prayed for me, William’s mummy, to find comfort. I am yet to find any. I know that day will come, I know that day will be when I get to join my son again. In a place where there are no hours, days or years, where it is eternity. Where there is peace from this suffering, where I know that I will never be separated from my darling little boy again. A place where the first thing I will do is find my son, and the second will be to never let him go again. On that day, and that day only I be happy.


 

www.justgiving.com/williamoscarmead

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

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.

Are you dealing with depression?

I have just typed ‘depression’ into the Google (UK) search engine to see what the definition is according to the official Oxford Dictionary. It wasn’t until page 4 that I found it: “A mental condition characterised by severe feelings of despondency and dejection, typically with feelings of inadequacy and guilt, often accompanied by lack of energy and disturbance of appetite and sleep”. People, me included rarely reach page 4 of the search engine. Our impatience and need for information sees us settling for an answer on the first page, even if it isn’t the answer that we are looking for, we make it fit. Those of us searching for depression looking for information or self-help on the internet more often than not find it on the first page. Especially with a very general term like ‘depression’. It remains to be seen whether the answer we are really looking for is on the first page, we operate under the same veil, we accept what we read, less than 10% of people advance onto page 2 of Google, like they say ‘when the glove fits…’

So what information did I glean from the first page? Well, there are links to the NHS website, several large charities and a self-help website. If you had any doubt before starting your search whether or not you are depressed, you will diagnose yourself after the first few excerpts. Who of us doesn’t suffer with low moods? Who of us doesn’t experience stress at work? Who of us doesn’t have periods of time when you feel tired or you can’t be bothered to go out? I would guess, and it’s only a guess that a large proportion of the population at some time in their lives experience these symptoms. So does that mean we are all depressed? Feeling low maybe, a little worried or anxious about something, but would you be concerned enough to visit your doctor thinking you are suffering with depression?

Whichever website you read, on as many pages you can bear to scroll through, the common denominator is that depression is a mental health condition. How a person behaves, how a person reacts to certain information and situations, what threshold a person has to cope in different situations, their thoughts, feelings and sense of well-being. Not only can these factors alter when a person is depressed, these factors can alter, resulting in depression. A condition that cannot be seen, a condition that is judged, a condition that people loosely use ‘oh, I am sooo depressed’. It is a condition that is very personal. Unique to the person that it is plaguing, treatment varies from person to person, antidepressants might suit one person but another might need a more holistic approach. Some don’t talk and suffer in silence. One thing for sure is that for those suffering with depression, hearing the words ‘snap out of it’, ‘you just need to do something to get over it’, ‘think more positively’ amongst other things, is not only ignorant it is very hurtful.

I am grieving, does that mean I am depressed? Initially probably not, as I succumbed to shock, numbness, anger and denial, you ride on the crest of a wave of grief, and as the wave breaks you come crashing down. At this point reality sets in, I am left to resume what my life is now, having to live life on life’s terms not my own. The pain of being left behind by someone I can’t live without. My natural reaction to grief persists, and will do until my last breath, but depression loiters, how can it not. Do I feel low? Yes. Do I have an aversion to going out or doing things? Yes. Do I feel hopeless, helpless and useless? Yes. Do I feel guilty? Yes. And the worst feeling of all, do I feel suicidal? Yes. These are some of the reasons I have been diagnosed with major depressive disorder. Reluctant at first to diagnose any medical condition, after all, a mother is likely to react in such a way to losing their only child, but I have progressively sunken lower. I function, but emotionally and mentally I’m stuck in a washing machine on a never-ending spin cycle.

Do I suffer with anxiety? Yes. Do I suffer with PTSD? Yes. Do I suffer with insomnia? Yes. I have never been familiar with these conditions, let alone experience them. So this is new to me. Do people understand why? Yes. And I find myself thinking, well my baby died, my beautiful little boy died and I found him, the way I feel is totally justified. But why do I think this. I think this because unless people know what your story is they judge you. Stood behind me in the queue in the supermarket they whisper ‘you’d think she’d brush her hair before going out’, but what they don’t realise is that going out is a major feat on its own, being in an environment where there a smiling, happy toddlers, my mind constantly trying to process what William would be doing in that moment. Would he be running off up the aisle, giggling? Probably. Would the cashier lady comment about how cute he is? Definitely. Would I struggle to juggle my keys, purse, shopping bags and wriggly toddler all the way to the car? Absolutely. So no, I didn’t make sure my hair was neat, because when I got out the house the last thing I thought about was brushing my hair. I got in the car and looked in the rear view mirror at William’s empty car seat, and drove past his nursery on my way to the supermarket. The last thing I was thinking about was the way my hair looked.

My message here? Don’t judge people. When you bump in to someone in the street and they’re in a dream world and they don’t apologise. Don’t think they’re rude, that could have been me walking down the street after visiting my son in the chapel of rest. When you are sitting in a cafe having a coffee and the person on the table next to you is moody, and has a face like thunder. Don’t tell them to ‘smile love, it can’t be that bad’ that actually was me, I was waiting for my grief counsellor. And when you’re stood behind someone in the supermarket whose hair isn’t as neat as you’d expect and you think they’re scruffy. Don’t judge. That was me. If you knew why, would you think the same? Would you judge me as you had done 5 minutes earlier? No.

Depression in all its form’s, largely isn’t visible. Just because we don’t walk around on crutches with a limp doesn’t mean we aren’t suffering. Don’t make assumptions about people, be kind to people, be understanding and compassionate in all that you do. Life is too short in comparison to the length of death.

 

 

 

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.