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

 

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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

One Year Without You

I loved you like there was no tomorrow…
and then one day, there wasn’t.

At 6.43pm on the 13th December 2014, I held you alive for the last time. The very last time that I cradled you alive, the last time I felt the weight of you in my arms. I didn’t know that would be the last time you would hear my voice, I didn’t know those would be the last words that I would ever speak to you; “Goodnight sweetheart, I love you.” I didn’t know that would be forever.

I remember making two promises to you when I held you on my chest for the first time, a bundle of arms and legs and warmth. I remember cupping your tiny little head with my hand, a head covered in the most beautiful dark hair, I remember so well, being scared to touch perfection, a euphoric experience that I can close my eyes and imagine, I remember thinking to myself, wow, after what has been a tumultuous life, I had struck gold. I knew from that moment, it was you, it was you that I had always wanted, it was you that I had always needed, it was you that through the hardest of times I held out for. My prayers had been answered. In that instant, in that moment, that moment of total peace, it was a strange feeling, a love so fierce it burned inside my chest, I promised you in that moment that I would love you with everything I had, that I could ever give, I knew that you were the key to my soul. So I made you that promise. Through the tears, the first words you ever heard your mummy speak, I promised you that I would love you with every ounce of my being, I would give you my heart, my body and my soul. I knew that you were the essence to what made my life meaningful and full of purpose.

The second promise that I made you came from my fear, my fear of being separated from you. After having extensive surgery I knew that in any moment, mummy could be taken away from you. Never having been in good health, having nearly died twice I knew that life was so fragile. The second promise that I made you was to make sure that the last time I saw you, whether that be when I tucked you up at night, when I dropped you off at nursery or when you were older and were off to play football with your friends, would be to tell you that “I love you”. I wanted to know that in case anything ever happened to your mummy that they would always be the last words that I would ever say to you. It wasn’t supposed to be the other way round, it was never supposed to be you. Shortly before you made your ascent to Heaven they found another tumour on mummy’s ovary. After seven surgeries and the tumour’s I have endured, I had never been scared, never had any fear of dying, in that moment, when they found that tumour, I cried, I cried so hard, I collapsed in a heap on the floor, begging daddy to tell me it wasn’t real, the fear that I would be taken away from you, why now? why me? why us? Hadn’t I gone through enough. Life now was perfect.

Then a few days later I whispered those words, what were to be those final words “Goodnight sweetheart, I love you.” I didn’t know that it would be forever. I kept my promises, I still keep my promises. I still love you with everything I have to give, and I still kiss your little bear goodnight and blow a kiss to the stars and say “Goodnight sweetheart, I love you.”

 

On the morning of December 14th 2014 I climbed out of bed and made my way into your room, I opened the door, I didn’t have my glasses on, the blackout blinds not letting any light in, I crept round to the side of your cot and I stoked your cheek. A chubby little cheek, warm to my touch, but you did not stir. I knelt down, put my arm through the bars of your cot, I stroked your arm, it was cool, I didn’t think too much of that, you slept in a sleeping bag with your arms out, and because you’d been poorly you had a vest on rather than a onesie. Still you didn’t stir. I stood, I stroked your side, you were stiff, your whole body moved with the motion of my hand, I turned, opened the curtains and blind and then I saw you. Your eyes cutting straight through me, I will never forget that moment, those words, “he’s dead, Paul he’s not breathing, Paul”. I ran to get the phone, I called the ambulance, daddy lifted you out of your cot and placed you on the floor, you were gone, we knew, your little arms and legs not moving. As I screamed down the phone, the operator calmly talked us through CPR, with every compression, I begged, I screamed, as I tilted your head back, I saw your chest rise and fall with every breath I gave you. You didn’t wake. You didn’t move. The paramedics arrived, they tried in vain, the chest compression’s they administered were so hard on your little body, I wailed at the shoulder of the paramedic as his hands scooped your body in his grip, desperately trying to pump life back into you. And then, those words, the most crippling words that any parent will ever hear, “I’m sorry my love, but he’s gone.”

As I fell backwards another paramedic caught me, they tried to take me out of the room, the breath like yours, gone from my body, I could not stand, I could not breathe, I could see you. You were gone. 8:47am you were pronounced ‘dead’. On the vast amounts of paperwork, there are no terms that are less cutting, ‘deceased’, ‘dead’, ‘no signs of life’, and the worst, ‘life extinct’. Life extinct. Your life was ‘extinct’. Two words that were spoken to your grandparents that shattered their dreams and their lives, “William’s dead”. There were no other words in that phone call. There were no other words needed, no other words could be spoken, nanny and grandad could hear your mummy wailing in the background, so did the street we live on. The ambulances blocking the road, the front door open, mummy’s wailing pierced the ears of those wondering what was going on. It was only when I walked outside with your fragile and broken little body in my arms, that people knew. Their faces on mummy’s, their heads bowed down. Your beautiful, lifeless little body spoke a thousand words. Mummy was broken. I could write a thousand words for every minute of that day.

That day I took the longest walk of my life, in reality it probably took several minutes, but to me it was a lifetime. As our family were escorted from resus, through the hospital, it had to be me that carried you, my face not leaving yours, it was me that handed you to the mortician, “please, look after him I said. I could not turn and walk away, it had to be him, this strange man, cradling my baby, taking you somewhere unfamiliar. He turned, and through those doors you were gone. “No, no, no, no, please no”. Never was a word spoken with so much power, one word spoken by mummy, a mummy who had just lost the most precious cargo she would ever carry. A word delivered with conviction, a word that encapsulated all of the pain and love I would ever feel. Please. Please give me my baby back, please don’t let this be real, please, God no, please, please baby wake up. Please.

It wasn’t time to say goodbye, it wasn’t time to let you go, I never will let you go. It has been one whole year since my world was shattered. I sit here today, reliving every moment that we lived this very day last year. There were and still are so many goodbyes. It wasn’t just that moment that I knew you were gone, it was being told, it was having to walk out the room whilst they examined you, it was handing you over to a stranger. The goodbyes are not just those first days but the milestones that you would pass that we’ll never reach with you. Your first plaster, the first time you would have said “mummy, I love you”, your first day at school, you first nativity, for me these aren’t first’s instead they are goodbye’s. A future that was robbed from you and from mummy and daddy. We regularly have to say goodbye to the dreams we had.

I miss you baby, I don’t know how to live without you, I don’t know what to do. I function but every step, every word spoken, every little job I do, is done without heart, is done simply because I have to. Life has lost its sparkle, the sparkle that you bought. I no longer trip over toys, I no longer worry about whether there is a hot cup of coffee within your reach, I no longer have to change after you’ve been sick on me, I no longer sleep through the night, I no longer have control over my mind or my thoughts, I no longer get that feeling of euphoria over one little smile, I never get to look in your eyes and cry with admiration, I no longer get to hold you, my sleeping baby, simply because I don’t want to put your down. I never knew that something so small, and so perfect could affect my life as it has, I never knew that I could possibly love someone so much, I never realised how much I would love being ‘mummy’. I never knew what it would feel like to have my heart-broken into irretrievably small pieces, I never knew how much I could hurt. I never knew what it would feel like to live with my heart outside of my body. You have my heart sweetheart, and with you it will always remain.

Loving you is easy, the best and biggest impact anything has ever had on my life. Missing you is inextricably hard. My heart breaks and will keep breaking until I hold you in my arms again, our souls are tied forever, an unconditional love that remains unbroken and more powerful than death. I love you my sweet William.


 

I would like you to think about what the last words spoken to your child/ren were before bed, before they went out to school, before they went back home to their own family, or hung up after calling you. Don’t take life for granted. Make those words “I love you”. Please.


 

www.justgiving.com/williamoscarmead

William’s Birthday Fundraiser

So, William’s birthday.

I’m going to write this blog purely about you, and how you have all helped us as a family to raise nearly £10,000 for the UK Sepsis Trust for William’s birthday.

The final figure hasn’t been totalled up yet, as we still have donations coming in and payments made for auction lots that were won. But as a rough breakdown, we raised over £3,500 via William’s Just Giving page (including giftaid), for those who couldn’t attend and bought balloons and raffle tickets. The online auction raised over £950, the auction at the event raised £400. Donations on the day for raffle tickets, balloons and donations exceeded £1,000. Worldwide Financial Planning (where I work) have agreed to match fund £1,000 and we are currently waiting for Santander Bank to match fund, the amount has yet to be confirmed. A cake sale at Standard Life raised over £400 with Standard Life matching the amount raised. There was a balloon release held in Spain where my family live, this raised over €300.

There are some events still taking place, these funds will be added to William’s Just Giving page. With a target of £10,000 I think with future fund-raising we might consider a new target!!

There are so many people that we need to thank, those that donated raffle and auction prizes. Their time, their help and most of all the support. Not just from family and friends but the wider community, including all around the world. There have been balloons sent to heaven for William from the States, South Africa, all across Europe including the UK, Australia, New Zealand, and Hong Kong. I am absolutely certain that William caught every single one.

Given the awful weather conditions, lots of people turned up to help us celebrate William’s birthday, it was extremely windy and rainy, typical UK style, but nevertheless, people put their wellies, hats, gloves and coats on and mucked in to help the family through what was an extremely emotionally charged day. At one point half of the balloons blew away, when a gust of wind was determined to steal our gazebo. But that didn’t spoil anything, we blew the reserve balloons up and let them go instead. As Paul, helped by all the children, let the balloons go from a big net, the Sun broke through the clouds, a perfect, tranquil and beautiful moment, I’m sure William knew. Our little two-year old was watching over us.
I would also like to say a very special thank you to a lady in Canada (I haven’t been specific with location from where they were set free to allow the students anonymity). Lydia along with her students raised and set free beautiful Monarch butterflies in William’s honor. They did this a couple of months ago, however, I thought it would be lovely to include these photos with William’s balloons. These elegant butterflies, one male and one female are currently making their way to Mexico.  Their wonderful teacher explained about William and his story and when they set the butterflies free, they all said a prayer for our little boy.

We are fast approaching one whole year without William, but that is an entirely different blog altogether. I want to sincerely thank everyone who has supported us, and restored our faith in humanity. I will shortly be putting up a gallery on my blog of all the photo’s we have received, so if you have any, please send them to me. If you are able to help us reach our £10,000 target, you can by visiting William’s Just Giving page by clicking this link I’m sorry that I might not have thanked everyone personally but we love you all xxxx