Monday, 29 September 2014

up and down

Since Charlie died I have had good weeks and bad weeks. 
Last week I have to say was a bad week. I found my emotions were up and down and the silliest of things could reduce me to tears. I found myself wanting to spend time on my own and that the company of others was hard to handle.

I think that not only was I thinking more about Charlie but it was also my mums birthday. 
I wasn't able to get back down to Leicester to go and visit family or visit Bradgate Park, where my mum's ashes are scattered. 

There were a lot of positive things happening for the charity and different things in the pipeline.
All our hard work seems to finally be paying off. 
We had secured a meeting with a NHS Dr to discuss the future of midwifery provisions for bereaved families. 
We had received the cheque from Asda that we had won in their green coin scheme.
We are even nearing the target of £5000 needed to enable us to register as a charity. 
We had even been to see a wooded area that we may possibly be able to rent to use for the charity.
So many positive things, so why did I feel so low. 

Sometimes I think when things are going well and we seem to be getting somewhere with the charity it makes me miss Charlie more. It also makes me feel a little angry as well, Why did we have to go through all of this?
I often sit and think to myself, I wish we weren't having to do this, we should have Charlie here with us to be making a fuss over and playing with not organising fundraisers in his memory.

None of us had ever had the thought that we would set up a charity, to be honest I don't think any of us would have ever wanted to set up a charity. 
We were just an ordinary family doing ordinary things. 
Never did I ever imagine us sitting round a boardroom table discussing NHS policies and procedures. 
None of us have any experience in doing any of the things we have found ourselves doing. 

There have been times when I think we could have all given up, but none of us ever would as that would have felt like letting Charlie down.

I know that it is normal to have times where things feel harder and more raw, and I know that different times of year are more difficult to cope with. 
When I am feeling low I often look at my step daughter, Carrie, Charlie's mum and see how strong she has been. 
She gives me the motivation to keep going, as whatever we are feeling is nothing compared to what she is going through. 
She shows such strength and courage and keeps on fighting for what is right in her sons memory. 

Another thing that helps me get myself together again is spending time with my granddaughters, and my step children. They make you realise that life is worth fighting for and that we can make a difference. 

We will all miss Charlie every day but I hope he feels proud of all the things that we have achieved in his name.

Friday, 26 September 2014

Bereavement services

We continue to campaign for better bereavement services and this week we have heard that we are to be having a meeting with a Dr who is looking into what services are already available and what improvements and changes need to happen within the midwifery sector. 

This feels like a big step in the right direction for us and for other families going through similar situations. 
There needs to be that close working relationship between service users and the professionals if the systems are to work properly. 

We were not given adequate care when we were going through our loss and from talking to other families we were not in a minority. 

We hoped that we were just unlucky and that our experiences were rare but now we know that this is not the case. We have heard from families all over the UK who say that they have gone through similar experiences. 

I still don't understand how the NHS as an organisation can let down so many people all across the country. I could probably get to grips if it was just within one authority but for it to be such a widespread problem makes it impossible to comprehend.

For the NHS to agree to meet with us to listen to our ideas is a huge step forward for the future provisions. 
If we can work with them and get them to listen to the families that have been through a bereavement this can then hopefully influence what new services are developed.

Communication has been the biggest area that we have felt let down in. From the moment we left hospital the communication system broke down and no one seemed to talk to each other, no one seemed to tell each other what had happened resulting in Carrie being severely overlooked. 

If we can get the doors open for more communication then this can only be a good thing. 

Tuesday, 23 September 2014

It was around this time, two years ago when Carrie went along for her first scan. 

She was full of excitement and anticipation, expecting to hear things such as when her baby was due. 
Instead she walked out of St James Hospital with her world turned upside down.
It hardly feels possible that it was two years ago, it all feels like it was a lot less time.

As this time of year comes around again we start to see a subtle change in Carrie. 
She has been amazingly strong and although she doesn't say much we can tell that she is finding it harder at the moment. 
It is hardly surprising that she is finding it hard and I think she copes with it very well. 
I don't think anyone could approach this time without feeling different, emotional and a little stressed.

It is also now that Carrie starts to think about Charlies birthday, it is a gradual build up to the date. 
She wants each birthday to be a special day where we all get together to celebrate Charlies life and send him love and birthday wishes. 
Just because Charlie is not here to celebrate with us doesn't mean she won't go all out to plan a lovely day for him. 

We find it good to all be together at this time and support each other. 
Last year Charlies birthday was a lovely family time with laughter and smiles. 
It was nice to be together being happy. Carrie didn't want his birthday to be a sad and somber time.
When we first spoke about his party I was worried that some of us might find it difficult to feel positive and happy but when the day came it wasn't hard. 
Yes we all felt amazing sadness that Charlie wasn't with us to celebrate being 1 but focusing on his amazing strength and fight helped us feel pride and love.

We all have our times when we take ourselves off and have down times but we made sure that Charlies birthday is a positive day.

I know that whatever we do on his 2nd birthday we will all do it together and with smiles on our faces. Inside our hearts will be aching but we need to stay positive to be able to get through this and support each other.

Carrie will make sure that she once again honours her son's brief but very special life. 

We all except that the next few months are going to be extra hard for Carrie and we will all always be here for her.
None of our lives will ever be the same but we are are eternally grateful for having known Charlie.
Whatever we can do to make it easier, smoother and less painful for his mummy, we will do. 

Saturday, 20 September 2014

Effects of grief

There are many effects of bereavement that can strike while you are coping with grief.

Many grief symptoms are very unnatural and scary. But almost all of them are perfectly normal.  You're not losing your mind your just going through a normal and healthy grieving process.
These are some of the physical symptoms you may experience:
  •  Exhaustion, muscle tightness or weakness, body pains, fidgety restlessness, lack of  energy. The act of grieving uses an amazing amount of energy. 
  •  Fatigue is usually self-limiting and will improve over time.
  •  Insomnia, sleeping too much, disturbing dreams.
  •  Loss of appetite, overeating, nausea, "hollow stomach", indigestion, intestinal  disorders like  diarrhoea, excessive weight gain or loss. 
  •  Headaches, short of breath, chest pressure, tightness or heaviness in the throat.
  •  If your loved one died because of an illness, it is not uncommon to worry that you  might get sick and die, too. You might even develop symptoms similar to those they  had.
  •  The hallmark of emotions during grief is unpredictability - you'll be up, down, all over  the place! It feels crazy, but it's normal. As long as your emotions are constantly  changing,  moving and evolving, you're on the right track.
  •  Most people stricken by a loss report an initial period of shock, numbness, or  disbelief  that the tragedy has even occurred. This is a normal defense mechanism of  the mind to  protect you from being overwhelmed. This allows you to absorb the loss  at a pace you are able to. When the shock wears off, unfortunately, the grief strikes  full-blown. At first it may seem helpful to separate yourself from the pain, but that is  not a  good thing. You must go through it sooner or later in order to bring your grief to  resolution. 
  •  Of course, you'll feel overwhelming sadness, and miss the physical closeness of your  lost loved one. You'll shed many tears, and then be worried when you can't cry any  more. 
  •  It's also common for you to feel at least some degree of relief, especially if the death  followed a long illness, or it was a conflicted relationship.The feelings of relief will  likely be  followed by guilt. You may also feel some "survivor's guilt" ("Why her and  not me?").
  •  You may have many regrets. You may regret things left unsaid or dreams not yet  realized.  You may feel guilt and regret over the circumstances of the death.Try to find  comfort in the fact that most every bereaved person goes through such emotional  turmoil. It's one of the common effects of bereavement.
  •  You may feel helpless and panic-stricken at times. A myriad of strong human  emotions is part of the whole package known as bereavement. As time goes on, the  emotions will soften and the intensity will less.
  •  Trouble concentrating, finishing tasks, forgetfulness, inability to make decisions,absent-  mindedness. It is sometimes said that you should avoid making any life-changing decisions  for at least a year after the loss. 
  •  Anger is a "biggie", almost universally experienced by all who grieve. It is perfectly normal  and understandable for you to feel rage at the horrible injustice that has happened to you.
  •  You may feel mad at your loved one (for leaving you, especially in cases of suicide).The  situation (such as a drunk driver),The doctors (for not saving her),God (for allowing this to  happen) and The whole world.
After suffering a loss, you will be a changed person. You'll survive grief, but life, and you, will never be the same again. This will impact your social life in some way. You may well lose,or gain, some friends over this. Social support may be abundant soon after the loss. Friends and family will gather to provide support for you in the traditional mourning rituals. After a while, though, the cards and flowers will stop coming, and relatives will go back home. Your support system will get back to their lives, and it can feel like they have abandoned you. Months later, when you are truly realizing all that you have lost, when you are achingly lonely, that is the time that you probably need support the most. Unfortunately, a lot of people will have gone by then, and those who are around may be urging you to "get over it" and move on with your life. Sadly, some of your friends will not be calling anymore, and may even be avoiding you. It was easy for them to give you hugs and shed tears with you at the funeral, but now is the difficult part. It is hard and awkward for them. They don't know what to say to you, or how to help you anymore. So they stay away. 
You might want to withdraw socially, voluntarily isolate yourself from others. You may feel detached, disinterested in your usual activities and  interests. You may feel suspicious, irritable and even hostile. 
Your social life will normalize somewhat as you progress through your grief and slowly rejoin the land of the  living. But some of your prior relationships will be forever altered.

To get through grief you need support, not only from family and friends but sometimes from professionals. If this help is difficult or impossible to access then your journey through grief can be further prolonged or made so much harder.
Everyone should be entitled to the correct support needed for them but all to often this is not readily available. 
I heard recently that in some areas of Mental Health Services people are having to wait for years to be seen by the appropriate professional and sadly in some cases people have even taken their own lives whilst waiting to be seen. 
This cant be right and shouldn't be allowed to happen. 
Every time I hear about people struggling to get help and support it makes me even more sure that our centre is needed sooner rather than later.

Tuesday, 16 September 2014

Today I have done another interview with Radio Aire to promote our latest venture with our charity. They came out to see me at work during my lunch break. They are hoping to put the interview out on air tomorrow so if you can please try and listen.
I am starting to get used to hearing my voice on the radio now, I think I sound very different and strange but I don't find it quite so daunting now. 

I have now done quite a few radio interviews but it still makes me feel a little nervous. I'm always a little worried in case I say the wrong thing or a swear word slips out.

If I know I am doing an interview I will usually spend a couple of days thinking about what |I am going to say and sometimes I run through it all in my head.

Today's interview was to promote our new 'Charlie Bears Adventures' and our 'free holiday for a bereaved family nomination scheme.' 

We are hoping that with their help publicising them we can help lots more children and families going through a tough time. All we want is to make life a little easier during a rotten time. 

If we had been able to have this kind of help we might have found the journey through grief a little easier.

The interview started quite up beat and looking at what was available in the pack, then we started focusing on how we want to support children going through or having gone through a bereavement. 

The reporter then asked me to talk about how having Charlie bear had helped my granddaughters. As I began to talk everything was ok and I was explaining how important I thought it had been for them when suddenly I felt like someone had taken all my breath away.
All of a sudden I just started crying and I couldn't stop. I don't know what triggered it but it felt very unsettling. 
It took me a while to compose myself and I apologised to the reporter. 
She was worried that she had upset me but I told her that usually I am ok talking about things for the centre because I focus on what we want to achieve.

I think it showed me how grief can just suddenly just jump out and slap you round the face, you may think you are coping and dealing with things but it is still there just below the surface waiting to get out.  
We all put on a face and go about our daily lives as its the only way we can keep functioning, but the need for support is still there. 

Again it shows just how much charlies-angel-centre is needed. 

Sunday, 14 September 2014

Rhiann & Amy

I want to share with you some of the things that Charlies Cousins, Rhiann & Amy, have done since his death to help us raise money for Charlies charity and things they have said.

When Rhiann saw this picture she sat and looked at it for a while and then she asked "why were the sleeves so big on Charlies arms", but before anyone could answer she then went on to say "Oh yes its bigger because it has to fit his angel wings in". I think it made everyone of us cry.

This design that has become the emblem for our charity started out as a design made by Rhiann. She wanted to get involved from the start so we asked her to make a picture to go on a badge. Once she had made her design she worked with Carrie to make it look clearer. It was initially made up as badges to sell for the charity but now gets used on most of our products and posters.

 Right from the start both girls have wanted to be fully involved with raising funds for the charity, they even gave up a Saturday to walk around Leeds city centre with their Nanna Curtis and Grandad Key shaking charity buckets.

                                                             More fundraising

Our recent venture 'Charlie Bear Adventures' was inspired by the girls and they love to take him out on days out and holidays. They have taken him to the seaside, museums, visits to family and the local parks. 

The girls even got involved making posters advertising our website and facebook pages.

This is Charlies 1st birthday, we all went out for a meal together to celebrate Charlies short life and then finished the evening by releasing balloons. Amy was adamant that we had to have cake for Charlie and needed to send some up with a balloon for Charlie to get. Carrie commissioned special cupcakes for the event and Amy and Rhiann did send some cake up for Charlie.

I think the girls will always be involved with any fund raising or events we do, they are proud to call Charlie their cousin and want to do what they can to help. 

We all love you girls very much, you are very special little girls, and i'm sure as Mila grows up you will tell her all about her little cousin.

Thursday, 11 September 2014

When you go through  bereavement as an adult it is a very difficult and confusing time. 

Imagine how it must then feel for a child. 

When we lost Charlie the main focus was obviously Carrie and Charlie. 

However it soon became apparent that Charlies nieces (Rhiann & Amy)were finding it really difficult to understand what was happening. 
They were 6 1/2 and 4 1/2. 
They had known that their Aunty was pregnant and you could see that they were getting excited about seeing her tummy get bigger. We tried to explain to them that Charlie was very poorly but at such young ages it was hard for them to fully understand what that really meant.

After Charlie died their mum and dad, Charlies aunt and uncle, had to sit down with them and explain that he had been too poorly to stay with us and had gone to heaven as an angel. 
I really don't know how they managed to do that. 
They were having to deal with their own grief as well as making it understandable to their girls. 
Shane was also having to see his little sister go through such a traumatic experience.

The girls then had to see their mum and dad upset, their grandparents upset and their aunt and uncles upset. 

The oldest girl, Rhiann, found it much harder to understand. I remember her coming to me and giving me a hug and saying 'I will look after you nanna, don't be sad'. Just remembering that and writing it down has made me cry. Such a small innocent little girl feeling such responsibility and empathy.

I think they helped us all get through the very dark days when all we wanted to do was close the doors and curtains and hide away from the world.
They gave us all a reason to go out, try to smile and face the world. 
I know Carrie has often said that seeing their beautiful smily faces has helped her see the positives in the world again. If its possible I think she has become closer to them and loves them deeper than ever before.

Both girls were given a framed photo of Charlie which they both kept by their beds. I remember their mum telling me that they used to give the photos a kiss and say goodnight every night when they went to bed and would say hello to him in the morning.

It is so important to make children  feel part of the grieving process. They still feel the loss and they feel the impact it has on their family. A lot of times children get overlooked because the adults are so busy grieving.

I couldn't be prouder of how their parents have dealt with explaining the loss and made it easier for the girls to be able to talk about it and deal with the emotions it has bought up. We have all felt that being open and honest with them about what happened was the best way to help them cope.

Our grandchildren have found an outlet for their grief through a teddy bear called 'Charlie Bear'. They have used him to give hugs to, talk to and share their worries and to go places with him in their cousins memory.

They have been the inspiration behind the new Charlie Bears Adventure Page.

Both girls have wanted to be so involved with the charity and want to raise as much money as they can. They have taken part in cake baking and selling, walking round Leeds shaking charity tins and even taking part in the sponsored walk we did. 
They are both so proud to do things for Charlie and want others to know all about him.

Rhiann and Amy have had the support of their extended family to help them through this very tough time but other children aren't always as lucky. They have still found it very tough and at times have struggled with their emotions but they know we are all there to talk to and love them.

Monday, 8 September 2014

Grief/bereavement training

During my nurse training I remember having an hours session on Grief and bereavement.
At the time I thought that this was fine, I thought that these professionals knew best and knew how to train their nurses. 
I don't know how long the current bereavement section of nurse training lasts but i'm sure its probably not much longer than I got. 

Until you actually go through a bereavement and grief I don't think you realise how a ridiculously small amount of training that is.

How can nurses be expected to help their patients if they are inadequately prepared for it. 
It's not the nurse fault, it's the systems fault. 

There is not enough emphasis on bereavement and when you think about it if they were trained properly then they would be able to help people before they became too unwell or needed health care. Surely it's better to prevent rather than cure. 

Wouldn't it be better to invest in more bereavement midwives and nurses to help people going through a bereavement or to give input even before the loss, therefore reducing the rates of people needing crisis care or inpatient care. The government is always looking for ways to save money and this would surely save the NHS money in the long run. 

I know through my own nursing experiences I often felt ill prepared to answer patients questions regarding loss, especially when I first trained and was only 19 years of age. I didn't have the life experiences to draw on at that time to be able to reflect on my own feelings and how I dealt with things. 

I know grief cannot be dealt with in the same way with everyone. Everyone deals with loss and bereavement differently, but if nurse and doctor training included more training and revisited it at regular intervals for them to reflect on any experiences gained, then surely this would be beneficial to their patients.

I'm sure if they asked nursing staff they would be quite happy to do more training, most nurses like to undergo further training to increase and update their skills. 
All Nursing staff have to undergo continual professional development to keep their registration up to date so I don't see why bereavement training isn't/couldn't be included in the mandatory training sessions.

Recently, due to our loss and experiences, we have found that a lot of grief counselling is provided through local hospices and through volunteers as there are not enough bereavement counselors within the NHS. We also found that in Leeds alone there are 32,000 people awaiting bereavement counselling. 

It doesn't take a genius to see that this in unacceptable and shows that the current NHS systems in place to deal with grief and loss is totally inadequate. 

I know we will get told that the reason is lack of funding, I think that is a totally poor excuse and an inadequate reason. People going through a loss deserve the same standard of care as every one else and should be able to access help when they need it.

If you agree with anything I have said tonight go along and sign our petition on calling for the Minister for Health to address the current lack of bereavement support. …

Saturday, 6 September 2014


We have been doing event after event over the last 18 months to raise money so we can get our support centre up and running. Everyone has been so committed to getting the money and have been prepared to do (nearly) anything to make the dream come true. 

We have got up at unearthly hours of the morning to go and do car boots sales, stayed awake for 2 days to complete a 66 mile walk, baked mountains of cupcakes to sell at fairs and put in endless hours of work promoting our cause. 

Two of our fund raisers who raised £130 running the Leeds 10K

Everything we do we do with the focus of Charlie in our mind and the thought that no other family should go through what we all went through. We know we can never stop babies and children dying but we can try and stop there being no or little support out there for people to access. If we had had people to talk to and to share our loss with then we might have found the journey through grief a little easier.

Each time we have completed a fund raising event and have added up how much we have raised it always astounds us how generous people can be. 

Over the last eight weeks we have been one of the three charities chosen by our local Asda store for their green coin collection. They run a charity scheme that runs over 8 weeks and shoppers are given green tokens. They choose which charity container to put it in and at the end of 8 weeks they are weighed. The charity with the heaviest load wins the cheque for £200. The people of Leeds have done us proud. 

This week I got the call to say that our charity was the outright winner of the £200. 

I felt like a child at Christmas. I was sat in my car when I got the call and if anyone was watching they would have thought I had gone a little crazy, I was actually doing a victory dance,(embarrassing I know ).

Not only have we now increased our total funds raised we have also raised the profile of our charity so much. There are now so many more people out there who know our name and what we are trying to achieve.

Our dream of opening Charlies-Angel-Centre is getting closer and more real. 

The memory of Charlie will live on for many years to come.

Thursday, 4 September 2014

After Charlie Died and we had got through the first few months when our brains were just mush we all knew we wanted to do something to honour his life.
We also knew we wanted to make a change to the services that were out there to help bereaved families. Our experience had been so negative. We had to make a difference for future families going through the same thing. 

Initially we decided to set up a website. None of us had ever done this before so a lot of research was done. We had to decide on a name, what we wanted there to be on the site, who we were aiming the site at and how much info we wanted to put on. 
Charlie's mamma, Sam, has been the main contributor to the website. She found the right page provider to go with and spent many hours finding out what had to go on and how to do it. The rest of us helped by providing written articles and ideas.

We went live with the website on June 1st 2013. was now a reality.

I remember feeling very excited but also a little strange. I wasn't sure at first how I felt sharing Charlie with the world. I knew that I wanted the charity to work and for Charlie to make an impact but I wanted to keep him for us. I think maybe it was the feeling that once everyone knew about him and saw him then it had all been real. I don't know if that makes any sense. 

Then we had to deal with all the interest generated by the website. We had local radio stations and newspapers. The first time I had to go along and do an interview was so nerve racking. I remember that I was fine talking about what had happened to start with but as it went on I found myself getting quite emotional and tearful. I had to stop for a little while to compose myself. I was so glad that the radio interview was recorded.
Carrie also did an interview with Radio Aire. She found it very difficult to talk about Charlie and what had happened. I think it was too soon for her to be able to do it. After that first interview for Carrie she decided that she wasn't comfortable at the time to do interviews. I think she was amazingly brave doing the first interview and I really don't know where she got the strength to do it. I found it hard so how much harder must it have been for her.
We all just wanted to protect Carrie and take away anything that made her feel uncomfortable.

Since the website we have gone on to start a Facebook profile,

A Twitter account

Google Plus






We have also gone on to start petitions, both epetition and 

one one

Although it has been a tough journey i think we are all 

happy to do it for Charlie.

Tuesday, 2 September 2014


I have experienced many deaths throughout my life and each one has been faced differently.

Growing up I experienced death first through the loss of a pet. I think this is most children's first loss and it is an important step in helping you deal with death. 

When I went into nursing as a career I knew that I would experience death and would have to care for people who were dying. Whilst I found this difficult I think because I could distance myself and put on a professional front it made it easier to cope with. There were patients that I became closer to and there passing did effect me, but I wouldn't usually let it show whilst at work. I often shed tears once I got home and had the support of my mum. 

Seeing death regularly can desensitise you to it and you learn to put on a facade. This doesn't mean you don't feel the emotions you just suppress them. I think I did this as a way of protecting my own mental health. If I had allowed myself to be upset all the time I wouldn't have been able to do my job properly or offer the right support to my patients or their families.

The first close family loss I remember was my Nan, she died suddenly and unexpected so none of us had time to prepare ourselves for her going away. I think when a death is sudden like this it is often harder to deal with and come to terms with. I remember thinking that although my nan was getting on it wasn't her time to go. She hadn't been ill and was still pretty active. 

When my dad died it was very strange emotionally. My parents had split when I was young and whilst I did still see my dad I don't remember us being close. His death was also sudden and unexpected and I remember exactly where I was when I got the phone call telling me. The emotions I felt took me by surprise, Yes I was sad but it felt very different to when my nan died. I know I loved my dad because he was part of me but I didn't feel the same loss and upset as my nan. That sounds awful but because of the distance that had happened between me and my dad I felt like I didn't know him that well.

When I was working as a school nurse I worked 1:1 with a life limited girl. When I took the job I knew her medical history and prognosis but at the time I didn't realise just how much she would get into my heart. Working so close with her and her family made it so easy to fall in love with this wonderful young girl. She had so many difficulties but always faced each day with a smile, she was truly inspirational. Her death was the first time that I had been deeply effected by a loss. I felt totally lost and alone and didn't know how to deal with her going. You feel a physical pain and you can't see it ever getting better. 

The loss of my mum 6 years ago and then the loss of Charlie 20 months ago have been the hardest things I have ever had to deal with in my life. I felt like part of me had been ripped away. I felt helpless and hopeless. Why did the most important people in my life have to go. My mum had been ill most of my life but she was the most stubborn determined lady you could ever meet. She always said her children were her life and we were what kept her going. As we grew up we all became mum's carers and we did this because we loved her and wanted to make sure she had the best care. I still miss my mum and think of her everyday and she effects the way I continue  to live my life. I don't think I will ever get over the loss of my mum.

I feel the same about Charlie. With my mum I can rationalise that at least she had a chance at life, she got to experience life. Charlie never got that chance. That still doesn't seem fair. People have said to me that perhaps it was for the best and that he is in a better place now. How on earth can his death have been for the best. The best thing for Charlie would have been to be in his mummy's arms, learning to crawl and walk, being loved by all his family. I know people mean well when they say these things but if they actually thought about it before saying it they would realise how ridiculous it sounds. 

Grief affects everyone differently and I know that I have been changed forever by the loss of my mum and my gorgeous grandson Charlie. No one is ever the same again but I have learnt how to carry on with life. I will never stop missing them and thinking about them but at least I can now get through each day without crumbling into tears.