Another year over

It feels like a lifetime since I last blogged. I can’t believe another year is over. Another year without you.

How are you meant to move on following the loss of your child? I have been diagnosed with a complicated grief adjustment disorder. How could anyone not have their mind and emotions completely blown by what has happened. How am I meant to adjust to life without you? Should I stop wondering what you would become? Should I just accept you will always be our baby who flies instead of walks? Should I just accept some people just don’t like to talk about you or to acknowledge you in front of us or your siblings?

Counselling is tough, but it is a good kind of tough. My memories are so stuck at 29 hours of trauma, excitement, and more trauma, that I have been advised to extend my memories to include my pregnancy, the music you liked, the scans, the excitement of you.

I have done a lot of revisiting lately. I went through your memory box, I looked through the birth congratulation cards a well as sympathy cards. It reminded me due to the speed we had you and lost you we had a couple of weeks of receiving both birth and sympathy cards at the same time. I remember the Tesco delivery man arriving just a couple of days after loosing you, and he congratulated me, I then had to correct him and say ” we did have a little boy, but he died”. It was and still feels so normal for me to talk about, I feel so detached from it all.

I have gone through the press cuttings following your death, the inquest and the learning. When I feel stronger I will be compiling them all to tell the full story of you Charlie. Right now they are just kept safe.

The most precious thing I have, that still smells of you is my cardigan. The last few weeks I have taken to lifting it out of the box and just smelling it. Weird for some but it takes me back, back to you in my arms. I love that smell and I hope it will never go, but I have a feeling it will, like memories fade into the distance, I worry the smell will to.

Just lately going through daddy’s camera, we discovered some pictures (we forgot all about them), taken just 1 month before you were born. They capture a beautiful moment of mummy, Lottie and Harry’s hands all on my Bump, you. We were all so excited. Finding these few photos have been both amazing and heartbreaking. Amazing as I remember it was Easter, we were all so excited, Harry and Lottie loved feeling you move. But also heartbreaking, because in that picture you were safe, you were alive, you were a wonderful surprise.

Revisiting is tough, but it reminds me of how important it is we talk about you, we allow your siblings to talk about you, to wonder what you would be like. We understand not everyone thinks like we do, not everyone wants to talk about you, and as much as it hurts as it feels they don’t care, that is their choice and we can’t change them.

But it reminds me that when someone you love dies they don’t disappear, they just move on, they are always there, just a heartbeat away. Charlie you will always remain in our hearts and our lives. We will continue to tell your story to ensure people learn, we will openly talk about you, and wonder what you would be like, we will continue to sign your name on our cards.

An important lesson I have learnt on this journey, is that just the simple acknowledgment of your name in our family card means the world to me. As a mum to know my child is talked about and mentioned shows they aren’t forgotten. They aren’t making me sad by reminding me you died, they make me happy and proud that they have remembered you and aren’t afraid to talk about you.

As another year closes and a new one begins, I wonder what it will bring?

You will forever be our robin in winter time who visits the garden, a beautiful white butterfly that flutters with us wherever we go and the delicate white fluffy feathers that land at our feet when we need you the most.

Love you always and forever baby boy xxxxxx

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How photos can speak a thousand words….

This week I did something I didn’t think I could do. I put up a new photo of our family. Yes a normal thing for a family to do. But a really big change for me.

When you died we realised we had very few photos of you, the ones we did have we cherish, and have a few of these as well as your foot prints on our wall in the lounge.

But this week I realised we have no photos of your sister (our rainbow) up. After talking with my counsellor about this change, that I didn’t want to remove your pictures, I made the decision of replacing one of me, daddy, Harry and Lottie. In a way you were with us in this picture, I was pregnant with you. A precious surprise. This was the easiest photo I could replace. I couldn’t bear to take down any of your beautiful face with soft hair and chubby cheeks.

I quietly replaced it with one we had taken at Grandads in Kent, a sunny day and a snap of us all together, Lottie being funny, Harry smiling, Molly squinting in sunlight. The only thing missing from the photo is your little face. Would you be running around refusing to join us for a picture, digging around in grandads garden?

I didn’t tell anyone I had replaced it, for me it was such a big thing. So quietly while everyone was out, I placed the beautiful snap amongst your pictures. We are all together, everyone included in one way.

And so now Molly also has her identity in our family, Molly is included in everything, but by no way does she replace you. She never could. She has just helped us to wake each day and carry on.

Molly now says your name, when we come to tidy up your grave, to lay fresh flowers she likes to play with your teddy, draw on your chalk board and play peekaboo behind your headstone. It’s lovely to hear, that she knows who we are visiting, but I also know she is beginning to understand and that the day draws closer where she will ask the inevitable questions who is Charlie? How old is he? Why did he die? These are easier to answer, he’s your big brother, he would be —— years old but he was only 29 hours when he grew his wings, sadly things were missed when he born and he died. But the hardest question of all, would I be here if Charlie lived? How do I answer that, I love her so much, I’m glad I have her, it doesn’t make loosing you any easier, it just gives us a little ray of sunshine on some very dark days.

Who knows where life leads us, how many babies we will be blessed with, or how long we get to keep them. But no matter how many, one doesn’t replace the other, they just teach us to cherish the ones we have a little bit more, to hold them a little tighter and longer, to enjoy the good times and the not so good times, the strops, the tantrums, as well as the achievements.

I like to think there’s a little bit of you in Molly, her cheeky character, her mischievousness. She has double the trouble to make and double the love to give.

No one can ever replace you Charlie, no picture on the wall will ever erase those precious few hours we had together, that first cuddle, that first feed, the skin to skin, the memories of your dark hair, long finger nails, chubby cheeks and that last precious cuddle when you grew your wings.

I will love you forever. You will always be my baby boy xxxxxx

Death is a lifetime of missed memories

I haven’t blogged for a while. Too exhausted trying to put into words the madness in my head. But the last month has made me realise no matter what we do, there is still that gap where you should be.

Lottie finished her reception year, so proud of her mixed with emotions of you. You should be on my lap clapping and calling your big sister. She should be smiling and waving back. I wonder if she would be the same little person that she is today if we hadn’t lost you. She’s a ball of emotion and anxiety, which they say is from her understanding and response to grief and loss.

Harry finished year 3, and is still football mad. He has attended some football festivals in the last month, and today we had the chance to go and watch a presentation and clips of their two days of football. I sat there with so much pride for Harry, but you are never far from my thoughts. Would you like football? And so as I sat there with all the other parents a few tears trickled down my cheeks as I realise you didn’t just die that day, we lost our future with you, you lost the chance to experience life events.

There have been two occasions lately where your presence has really been vivid for me. Your siblings playing and chasing in the park, Harry leading, Lottie close behind and then a gap, followed by Molly trundling along. The gap is so clear you would slot perfectly into it. Which reminds me that even though you aren’t with us in person, there will be always be a gap where you belong. Another time it has happened was playing in the field with the dog. Again Harry leading, Lottie, a gap and Molly. It just proves to me Molly hasn’t replaced you in any way, all she has done is enabled us to love and cuddle another little person. But no matter what it’s you I still long for.

We visited you tonight, put fresh flowers on your grave and tidied your toys. Molly drew on your chalk board and played peek a boo behind it.

And so after a busy few weeks, and lots of events in the children’s lives, I go to bed tonight wondering what you would become? Would you like school? Would you like football? And knowing we will forever wonder what if????

People think it’s been three years now and we should be moving on, actually it’s been 1181 days since you grew your wings, and each day is hard. Missing you doesn’t get easier. I feel like I live in a parallel world. Before Charlie and after Charlie. I get up each day because I have to, there are three children here who deserve to have a life with memories, laughter etc. Each memory made with them is a memory missed with you. It’s all so bittersweet.

You didn’t just die that day, our life changed forever, our children’s lives changed forever.

Always missed and never forgotten Charlie xxxxxxx

Our last goodbye

Well 4th June marks the 3 years since we held your funeral. Our final goodbye.

The night before we came down to the funeral directors for our last time with just you. Harry and Lottie had drawn on your beautiful white coffin, and we gave your duck to Sam, the funeral director. We had cuddled duck, gave him kisses and filled him with so much love. Before I left you that night I did one last thing. I picked up your coffin and held you. It was the closest I was going to get. How I wished I had actually asked to cuddle you. You were so light in that tiny white coffin. When we left that evening, Sam placed duck inside your coffin, to keep you company on your next journey. And then he sealed you in.

You had so many things in there with you, a football from Harry, duck from all of us, a book, photos, a letter, a decorated heart from Lottie. You were wrapped in your shawl which Nanna had knitted, I still have a piece under my pillow today. It still has your label from when your were rushed to hospital ‘baby Jermyn’. You had only had your name ‘Charlie’ just an hour before you slipped away.

We chose to have the funeral at a local hotel, where we had got married. We watched you come in. Carried so carefully. The flowers and teddy we had picked for you were placed beside you.

We had planned a beautiful service, with songs which meant a lot to us as a family, Kieran made a little speech, Sophie read a beautiful poem. Friends and family came to celebrate the short time you were with us.

It’s amazing how having so many of our close friends and family in a room yet you can still feel so lonely and unattached from the whole thing. I remember looking round and seeing others cry, yet I couldn’t cry, I couldn’t break in front of Harry and Lottie. And so I kept it deep inside.

The last song played was by Eric Clapton’s ‘tears in heaven’. I chose this one as the words were so fitting. ‘Would you recognise me when I come to heaven?’. To make this easier for you I have kept my cardigan and daddy’s jumper, safely tucked away. When the time comes we will be buried wearing them. Hopefully then you will recognise us. And what will you be Charlie? Will you be my 29 hour old baby? Or will you grow up as you would if you were here on earth.?

We visited your grave today. It’s looking beautiful. Certainly more beautiful than three years ago when we watched you being lowered. I still find some comfort knowing if I lie down there is just a short distance between us. How I long to hold you one last time.

And so three years on it isn’t any easier. The days are the same, long, lonely and wanting to be with you, yet at the same time manic with Harry, Lottie and Molly. I wish I could be in two places at once. I wish I could be the mummy to you that I am being to your siblings.

Lots of love Charlie xxxxxxx

The waiting and hoping has gone

Charlie

Three years ago we were let down by systems and procedures and policies within the NHS. Sepsis wasn’t very well known about then, not like it is nowadays. There is a massive campaign for the public to be aware of the signs and symptoms. Sadly we are one of those families that will forever live with the destroying affects of Sepsis.

In your short time Charlie you were seen by three midwives. Sadly these individuals didn’t have the training to identify you were poorly, dying before our eyes.

Midwife 1 assessed me at hospital, allowed me to go home, when in hindsight I should have been kept in hospital, you would have been born in hospital, and all the signs of invasive strep A and Sepsis would have been spotted and treated, with the high chance you would be here tonight.

Midwife 2, we first met her two days before you were due, she gave excellent advice on if we felt it was a quick labour not to get in the car, it was unhygienic. We saw her again the morning you arrived, she came to the house after four paramedics, she stayed with us for a couple of hours. She felt you were a well baby, that I was well. She didn’t feel there was any need to go to hospital to be checked.

Midwife 3 we first spoke to just 6 hours after your birth, you wouldn’t feed, you weren’t stirring for feeds, you were sleeping a lot, you were making a funny noise. She said she would get to us as soon as she could. Five hours later she came. You still hadn’t fed, she noticed you were grunting, but still didn’t admit you.

Midwife 4 we met the next morning, you had barely fed, you slept, you grunted. She noticed you were poorly. You collapsed in my arms and she tried to bring you back.

All these people could have made a difference. The very least they could do was apologise, to learn and to never make the same mistake again.

We pushed for answers when you died, Me and Daddy spent so many hours researching the trusts policies, of other cases where babies were born down the toilet, of neonatal infections. We were persistent with passing all the information we had found, all the policies that hadn’t been followed onto the coroner. She realised there was no way she could hold an inquest of a couple of hours, that this was much bigger than just a sad death. She got professionals from Bristol, London and Birmingham.

At the inquest was the first time me and Daddy faced some of the people involved. There were 13 witnesses plus reports from others.

We were asked by the Trust if we would meet the four midwives involved, away from the camera and press. We agreed. We felt it would be rude not to, and at the end of the day they didn’t intend for you to die, did they?

Even today Charlie I find it hard to accept that they learnt lessons from your life and death. Midwife 1 apologised and said she wished she hadn’t sent me home. Midwife 2, didn’t apologise, just asked how we all were. Midwife 3 was clearly upset and had learnt from it all, she apologised. And midwife 4, well she was the one who had to resuscitate you, she was so sorry.

They all took the stand, they all gave their evidence. They got questioned by the coroner and the professionals as well as our legal team. Three of them were sorry, sadly there was one midwife who remained defensive, she failed to apologise, she failed to accept there was things she could’ve done differently. She remained defensive throughout.

Following various meetings to improve services for other families, we have learnt midwife 3 had taken time off, due to the stress and press coverage she received. She has recently gone back to work but no longer does newborn baby checks, it’s affected her confidence. Midwife 4 continued to work, but was woken for a long time after with nightmares, she could feel your lips on hers as she resuscitated you.

But midwife 2 continued to work, failed to acknowledge us whenever our paths crossed. First I was sad that she couldn’t even speak to us but this slowly bubbled to anger. A boiling bubbling anger that lead me to ask questions about her practice, her learning from it all. We got told that sadly she was diagnosed and it was terminal, that she was off sick so the trust couldn’t even pass on the questions I had that I needed answers to, that only she could answer. I asked to be able to email, for them to pass it on, to explain that it was for closure for me.

I finally got access to some of her reflective learning, which took a lot of asking for. And as much as I told everyone “that’s ok, if that’s all I get I can accept it”, what I was still longing for, hoping for was that there would come a day where she would be able to have a meeting with me, to answer an email, to give me the answers I needed to move and most importantly to tell me “I’m sorry”.

At my recent counselling session I got told she had passed away. And what did I do. I burst out crying, uncontrollable crying that I couldn’t explain. When I could finally catch breath I was able to say ” well that’s it then, she’s never going to apologise”.

Everything I had hoped for had gone. Just two simple words.

A massive part of me is filled with anger and hate. She got away with it, she didn’t apologise and she didn’t learn. And at the moment this is how I feel. There is a small part of me that does feel sorry for her family, for her young grandchildren. But there’s a bigger part of me with a longing that will never come.

You changed our lives Charlie, and I know you have made changes within the NHS, that there are professionals that think of you on your anniversary.

Some people have said maybe she couldn’t apologise because it would have meant her accepting she could have made a difference, that now she is in heaven she has found you and apologised to you. And yes that is a nice thought. However she beat me to it. She got to see you again before I did. Somehow I have to find peace with this feeling of longing, and right now I’m not sure how.

I truly don’t know how to find peace with this.

Night night baby boy

Love mummy xxxxxxx

Yet another birthday in heaven

Well Charlie today you would be three. Wow where has the three years gone. It’s been a day of mixed emotions. Pride that I am your Mummy, anger at the midwives that failed you, sad that you aren’t here. I’m really proud of how Harry, Lottie and Molly have dealt with today. Daddy wanted me to check this year whether they wanted to wrap gifts or just place them with you. I’m proud of the caring children they are that they both said “no we have to wrap his presents it’s his birthday, and we can unwrap for him”, they both wrote a card, Lottie drew a picture, Molly loved your balloon. I’m proud of how they have handled all the chaos in the past three years.

They still talk about you, Harry today remembering the bath we gave you in the sink, I remember your really long fingernails. All these little things are what we will teach Molly about you. She will learn about you through us. Her big brother who in his short life is making a difference.

I wonder today what you would be like as a three year old. Would you have blonde hair like Harry and Lottie, or darker hair like Molly. What colour would your eyes have been, when would you have smiled, talked, walked.

Dreams of you are both lovely and heartbreaking. I long to stay in them, to cuddle you, to be with you. In dreams you are a little fair haired boy, a bit darker than Harry, running around chasing Lottie, in a lovely blue pair of dungarees, with the biggest cheekiest smile.

I hope you are with my grandad, who was the best grandad anyone could ever have. He taught me to ride a bike at about your age, so I hope he is doing it with you. I hope he tucks you into bed each night and wipes away tears when you miss us. Grandad used to give us mars bars just before our Sunday lunch, no doubt he will be doing the same with you. I know no matter what he will love you, and will be with you until I can. Until I can be a proper mummy to you. Until I can hold you in my arms and never ever let you go again.

All I can say is happy birthday my beautiful baby boy. I love you more than anything, I miss you more than ever, we are one day closer to being together again. Fly high baby boy. I love you xxxxxx love mummy xxxxxxx

Revisiting the ED where you died

Dear Charlie

This week me and Daddy went back to the emergency department where they took you and tried so very hard to bring you back. And it was hard.

Of course the hospital has good memories as well for us, it’s where your sisters and brother were born, its where we first saw you wriggling around, a black and white image. I was so excited that day. You were our third baby, a beautiful surprise. We didn’t know if you were a boy or a girl. We just wanted you here safe and well.

You came dramatically into our lives on your due date (9/5/15). We had previously been at the hospital for over five hours the night before but got reassured to go home and wait, but wait you didn’t want, and so you were born into the toilet. Daddy scooped you up, unwound your cord from your neck and did amazing at keeping us calm. We had four paramedics and a midwife here, all surprised at your speedy arrival. Little did we know in a few hours time we would have a further 6 paramedics here, at home fighting to save your life. I wish they had, I wish so so much we could bring you back.

You collapsed in my arms, lost consciousness whilst cuddled to me. You were rushed in the first ambulance with three paramedics and the midwife, all trying to bring you back. We got rushed in the second. That was awful, what was happening? What on earth had gone so wrong?

And so we arrived, rushed through the doors, rushed to a room. Daddy entered and saw so many people trying so so hard to help you. I couldn’t go in, I just knew you were gone. I knew when you were in my arms, when your cheeks went dusky, the colour draining before my eyes, and then seeing you look at me before your eyes rolled. I just knew I had lost you, my beautiful baby boy.

We got taken to a relatives room to wait, it was so quiet in there. Your consultant came to us and said you had been down for an hour, there was no heartbeat. We asked if they carried on what would your life be like? The answer was simple, you wouldn’t have the life we wanted, you had been down too long, your poor little body had had no oxygen, it was time to call it a day. We agreed it was best for you to stop.

Then we got told we would have to speak to police, there would need to be an inquest. It was too much sat in that quiet room, with nothing to do but wait.

We got told we would be able to see you again, and as I had no photos of you and me together we were told this could be done. We got led from the quiet room into the resuscitation bay. I will never ever forget walking in and seeing your tiny body, wrapped in your shawl and a blanket on such a huge bed. You were lying on a white sheet, but you were too small, you weren’t meant to be there. The nurse asked if I wanted to hold you, I did. You were so cold, I placed my cheek on your head with your soft fluffy hair, and I wrapped the blankets round a bit tighter trying to warm you up, I just wanted the warmth to wake you. But it didn’t.

We didn’t stay very long. We both gave you a kiss, and said sleep tight. We spent almost 7 hours at the hospital. The smell, I will never forget. It was busy, but I remember the sound being muffled as though my brain was trying to block it all out. The staff were amazing that day.

Daddy had to ID you, that was so hard for him, you were in a separate room now from where we had seen you. I wasn’t allowed to go, they only wanted Daddy. That was so so hard for him.

And then finally we were allowed to go home , the police had their statement, they had been to the house to take photos and temperature readings etc. We could go home with your memory box. We had to walk out the corridor we had rushed into hoping you were ok, we had to walk out and leave you behind.

It’s been nearly three years since we walked out those doors. Luckily for us we haven’t needed to go back, too many ghosts, too many smells and too many sad memories. However we decided now it was time to face those fears. We are so lucky that we have contact with your consultant, a lovely lady who has supported us so much. She came to your fundraiser last year, she pops in for coffee when she is able, she met Molly just after she was born and she has spent so much time answering all my weird and wonderful questions.

She met us to go through this journey of revisiting, along with a nurse who is working to improve bereavement services for parents in ED. After a chat, it was time. We went back to the corridor where you were rushed in. I’m surprised by some rooms along the corridor, I don’t remember them, I remember a long white corridor. The smell is the same, a clean hospital smell, but it takes me back, so much I have to breathe through my mouth to try and stop smelling it.

And then there is the room, turn to your right and it’s there, the bay where you were when Daddy rushed in, the bed where so many people fought for you. The bed where you lay when I came to see you. There’s pictures on the wall, I don’t remember these, I even ask if this is the right bed. Daddy says yes it is, but it looks different, simple things have changed like a whiteboard being removed, but the marks are still there where it hung. On that whiteboard was all the information about what you had had, your temperature, when and how much adrenaline you had had. I know it was there it’s in the photos I have of me and you. But like you, that too has gone. I remember the blue curtains and the floor. I hate that room. I hate that bed.

Next we go to the little room where daddy had to do your formal identification. Daddy has always said it was like a store room, I didn’t see it until this visit. We found out it’s called the decontamination room. The reason you were here was because the skin sample they had to take had to be done under sterile conditions, and in a licensed room. This is one of the rooms. Daddy said you were placed on the stretcher, it was black, not even made up. Staff apologised for that today and we talked about how it could be done better for others.

And then we are back out in the corridor. That long corridor where everything changed. We left there through the same doors we did almost three years ago.

The revisit was good. We needed to do it, to lay some ghosts to rest, and to prepare in case we ever need to go in there with your siblings. It helped having your consultant there, she was able to go through anything we needed her to. But most importantly she knew you, she had met you, you weren’t just a name on a piece of paper.

Some people think we are brave for going back, but in a weird way it’s comforting to be there, that’s where we last saw you, where I last cuddled you. If only I could go back in time, if only.

Instead you are wherever you are, and I’m here just waiting, waiting for the day I can cuddle you again.

I love you my beautiful baby boy,

Love mummy xxxxx