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

 

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 strength of a bereaved parent, the strength of friends

When someone is going through a storm, your silent presence is more powerful than a million, empty words…

Since William passed away I have lost count of how many well wishers imparted their advice that Paul and I need to be strong for each other, all said with a kind and heavy heart. But those who have lost a child will know, this is almost impossible. It is an uphill struggle to tread water let alone try to support anyone through their grief, this may sound selfish, but it’s really not. We have lost the same little person, the bomb that exploded in our lives left no prisoners. How, when I constantly resist the urge to join William can I support Paul? How can Paul when he is devoured by grief even begin to imagine trying to prop me up in the process. The most we can do is simply be ‘there’. We support each other, we are there when the other falls. When one crumbles the other crumbles, both consumed by an avalanche of what if’s, searching desperately for the answers. Grief affects everyone differently, everyone reacts to it differently, and everyone is on their own journey.

I have found solace with other bereaved parents, those that truly understand what the definition of strength is. Day to-day, strength for a bereaved parent can be defined as getting out of bed, maybe taking a shower, eating when you really don’t want to.Opening the mail and paying that bill that really is no longer relevant. But, real strength is holding your child for the last time and knowing it will be the last time you ever hold their perfect little being, the last time you will ever place a lingering kiss on their flawless skin. Strength is placing them in their forever bed and closing the lid, knowing that you will never touch them again, never see them, or be in their presence.

Strength is having to pick a beautiful coffin, when this is the absolute last task you ever want to do but knowing it has to be absolutely perfect, beautiful and comfortable. Strength is carrying your child into his own funeral knowing you will never feel the weight of him in your arms again. Strength is going to the crematorium and collecting your child’s ashes. So small, so light, in a bag you carry your child to the car, not to put him in his car seat but to hold him on your lap, not taking your eyes of this tiny little box that contains what remains of your precious child. Strength is battling for months and months for those involved in your child’s death to apologise, but knowing that until that happens you have to fight until there is no fight left. Strength is putting one foot in front of the other when the last place you want to be is walking this Earth without your child.

There is no-one stronger that walks this Earth than a parent that has lost a child, whether that be a child lost during those months of pregnancy, whether it be a baby born sleeping, an infant like William, or a child that you have watched grow into the most amazing person, and there is nothing stronger than the friendship between two bereaved parents. That one person you meet in the most excruciating circumstances, but that one person that understands, that just knows. Knows that when you are feeling desperate, they know just what to say, that what they say comes from the same painful experience. I have spoken to many bereaved parents and I always will. It is a world I knew was there but I never knew just how many are affected.

So, to those bereaved parents out there, and to one person in particular who I think I’d be lost without, not only do I share your pain but I share your strength, and when you wobble, you can have some of my strength. I admire your courage to keep going for your little boy, the little boy who lost his beautiful little brother. Many will say “I don’t know how you do it, I don’t know how I’d cope.” I’ve heard this many times, but it really doesn’t help, somehow it makes me feel that I’m coping when I shouldn’t be. We don’t know how we do it, we don’t know how we cope, or even that we are coping. We have no choice, but I do know that we wouldn’t cope without each other. So I know that when you, my friend take your little sidekick to the soft play area, you’re doing it because your strength is insurmountable; but I’m not fooled, to watch one child play rather than two creates a pain so palpable I can feel it. I share your pain, I know THE pain, I don’t know your pain, but know that I’m here when there are few people who can really say the right thing. Thomas is an absolute credit to you, and he will be so proud of you, as am I, always.

Dearest friend please know you can do the impossible because you have been through the unimaginable.


 

http://www.justgiving.com/williamoscarmead