Friday, 18 August 2017

Parental grief is overwhelming; there is nothing that can prepare a parent for its enormity or devastation; parental grief never ends but only change in intensity and manner of expression; parental grief affects the head, the heart,  and the spirit.


For parents, the death of a child means coming to terms with untold emptiness and deep emotional hurt. Immediately after the death, some parents may even find it impossible to express grief at all as many experience a period of shock and numbness. All newly bereaved parents must find ways to get through, not over, their grief to go on with their lives. Each is forced to continue life’s journey in an individual manner.

Parental bereavement often brings with it a sense of despair, a sense that life is not worth living, a sense of disarray and of utter and complete confusion. At times, the parent’s pain may seem so severe and his/her energy and desire to live so lacking that there is uncertainty about survival. 

Some bereaved parents feel that it is not right for them to live when their child has died. Others feel that they have failed at parenting and somehow they should have found a way to keep the child from dying, 

Grieving parents should learn to be compassionate, gentle, and patient with themselves and each other. Grief is an emotionally devastating experience; grief is work and demands much patience, understanding, effort, and energy.

Parental grief can and often does involve a vast array of conflicting emotions and responses including shock and numbness, intense sadness and pain, depression, and often feelings of total confusion and disorganisation. Sometimes, parents may not even seem sure of who they are and may feel as if they have lost an integral part of their very being. At other times, parents may feel that what happened was a myth or an illusion or that they were having a nightmare.

Each bereaved parent must be allowed to mourn in his/her own way and time frame. Each person’s grief is unique, even that of family members facing the same loss. Bereaved parents shouldn’t expect or try to follow a specific or prescribed pattern for grief or worry if they seem out of sync with their partner or other grieving parents

Bereaved parents need to know that others may minimise or misunderstand their grief. Many don’t understand the power, depth, intensity, or duration of parental grief, especially after the death of a very young child. In some instances, bereaved parents are even ignored because some individuals are not able to deal with the tragedy. They find the thought of a child’s death too hard, too Inexplicable, or too threatening. Many simply don’t know what to say or do and so don’t say or do anything.

Probably the most important step for parents in their grief journey is to allow themselves to heal. Parents need to come to understand that healing doesn’t mean forgetting. They need to be good to themselves and absolve themselves from guilt. They should not be afraid to let grief loosen its grip on them when the time comes. Easing away from intense grief may sometimes cause pain, fear, and guilt for a while, but eventually, it usually allows parents to come to a new and more peaceful place in their journey. Allowing grief’s place to become a lesser one does not mean abandoning the child who died.

In the end parents must heal themselves. It was their baby; it is their loss; it is their grief. They need to gain closure, to experience release, to look to their new future.

Friday, 11 August 2017

As a charity we are always looking at different ways we can support the families who come to us following the death of a baby or child whether that loss is through a miscarriage, stillbirth, soon after birth, compassionate induction or neonatal.

Recently we have been getting many more telephone and email calls from families following a miscarriage or multiple miscarriages. 

This seems to be an area that is not always given the attention it needs. Often women will say to us how they feel that others almost dismiss their loss saying things such as "At least it was an early loss", "your lucky as you haven't had the time to get to know your baby" or "you can try again". Whilst many of the people saying these things probably meant it as a comforting thing, ask any family experiencing this and they will tell you a very different story. There is also the common misconception that the earlier the loss the less there is to grieve. 

Another area that is so difficult for families to talk about is the issue of compassionate induction, this is also called medical termination. 
There is still a negative connotation around the word 'termination' and many see this as the couple not wanting the baby and making the decision to get rid of it. 

This is so far from the actual truth. 

The couples who have had to come to the agonising decision to end their baby's suffering, through illness or congenital abnormalities, have done so through many hours of talking with professionals and family. They have made the decision out of love for their baby.
Many families tell us that they will often tell people that they have had a miscarriage as they are afraid of people judging them. They are then not only having to deal with the loss of their baby but they are also having to lie about what happened which can be very traumatic for them.
There needs to be so much more education and discussions about compassionate induction so that families are not left feeling alone and isolated in their grief.

From the moment the lady takes the pregnancy test and sees the positive result she has become a mummy.

Her and her partner will start to see their future and make plans for where their child fits in to it all. Their life has changed forever and they will have already started to get excited about telling their family and friends their news. 
Each week that passes is another week of getting to understand your body and your baby inside. 
The first scan comes and this is yet another chance for the parents to meet their baby, no matter how small they are. Seeing that little heart beat on the screen is a very emotional feeling and makes everything feel more real.

To then have this all taken away from you is so cruel, unfair and totally devastating. 
The father is also affected by the loss of their baby, a lot of people will often feel that the dad doesn't feel it as deeply as the mum. This is not true. 
Dad's grieve just as deeply as the mum. However they are often made to feel like they have to be the strong one and support the lady. Whilst the lady really does need support so does the man.

I once read a saying that I think is true, 'The family that grieve together heal together.' 

It doesn't matter how early a loss may occur or under what circumstances, it is still the families baby. They have had a part of their future taken away and the plans they had began to make are all now just a dream. 

To then have people belittle or undervalue your loss or underestimate the impact it will have on your life can make your grief feel even harder.

We have spoken with many families that have said how they have felt under pressure to be 'normal' again or have had friends/family react in a way that makes them feel like they should 'be over it' by now. This can put so much pressure on them and make them feel that they are wrong to grieve.

No one should ever feel that they cannot grieve and no one should ever tell a family how long they can grieve. 
Grief is a personal experience and is different in every person. There should never be a time limit on grief as this can then make the family feel pressured or even feel like they are wrong to be still grieving.

There have been many improvements made to the provision of support for grieving people over the years but the families that have lost a baby seem to be lagging behind in the support network.

We have recently been in touch with a nurse who works on a gynaecology ward in Leeds who works with many families on a day to day basis who are going through a miscarriage. The staff want to make changes to the care they can give/offer the people they look after. They are already providing a vital service but they know that the support these families need does not disappear once they leave the hospital. 

We are hoping that we will be able to collaborate in the near future to make an impact on the support these families need. Our aim is to have care and support in place for families upon leaving hospital until whenever they are ready for us to withdraw. 

As this service develops and becomes available we will keep you informed. We see this as such an important service that so many families could access. 
The national statistics say that 1 in 5 pregnancies will end in miscarriage, so surely it makes sense to have a support network in place to help these families through their loss.

Friday, 4 August 2017

I am so proud to be part of the amazing charity Charlies Angel Centre Foundation.



Four years ago I honestly don't think any of us could have imagined what we would have achieved in such a relatively short time. 
Not one of us had ever had any experience in setting up a charity let alone how to run one. We went into it totally unaware of everything it takes to start up and sustain a charitable organisation. Naively we thought we would be able to complete a few forms and answer a few questions and that would be it - A charity.

We can look back now and laugh at what we imagined it would be.

It is definitely not an easy thing to do and it causes lots of headaches, sleepless nights and even some tears but I would not go back and change any of it. We have all changed throughout the last 4 and a half years and I feel it has definitely been for the better. Despite all the difficulties encountered we have not given up, in fact we have become more determined and stubborn.

Our knowledge and understanding of how the Nhs works and how difficult it is to make a change has grown immensely. Through our stubbornness and constant questioning we have managed to get ourselves in on many different important National Health Service meetings. Initially we found them very daunting and often felt confused by all the jargon used but we were never deterred. We would go away and do our own research to make sure we totally understood what was being discussed.
Now we go along to these meetings feeling like equals, we are confident in our ability to get over our concerns and questions.

Now we work alongside many health professionals and have become work colleagues. We work in collaboration with several departments to ensure that families do not slip through the net and are given the support they need. We have even been asked for our input on leaflets that are given out from the hospitals. This really shows to me what a huge step we have made and what a huge impact we are now having.

We often get told by friends of the families or the families themselves that we support of the difference we are making and how the support we have given has enabled them/their friends to keep going. It is when we hear things like that that we realise what a massive ripple Charlie has made in the provision of bereavement support.

Initially everyone involved with the charity was from the family but over the years this has changed. 
There are now more and more people wanting to become involved with the work we do and several have now come on board as trustees. Some have started out as families we were supporting and have made the decision that they too wanted to help other bereaved families at the darkest points in their lives. These people are amazing and have helped us in so many ways.

The charity has almost become like an extended family.

We are a group of people that have come together in a group, and it is a group that no one ever wants to be a part of but once you are in it your life changes forever. The families we have helped or are supporting come from all walks of life but we all have one thing in common - GRIEF.
Everyone who comes along all have their own area of expertise they bring to the table. Some are amazing fundraisers, others are great at getting companies to donate goods or services but one thing we all have in common is the passion to see a change in the provision of bereavement support after the loss of a baby or child.

2017 has been an awesome year for us so far and it doesn't look like it will be slowing down. This shows us how much a need there is for charity like ours. We hope you stay with us as we continue to move forward getting bigger and bigger.

Charlie Arthur Curtis inspired the charity and his name and story will continue to be spread across the country and the world. 
What an amazing achievement and legacy for someone so young. 

Charlie will always be a very special little boy to us but he has also become someone that is special to so many more.  

Saturday, 29 July 2017

All of us have been following the heart breaking story of Charlie Gard and his family. 
It must have been the most traumatic and devastating time for him and his family made even harder by the presence of the press and court appearances.

Yesterday hearing the sad news that Charlies fight was over was so overwhelming. 
Although we are not related to him or know his family the UK and further afield have been privileged to have been allowed into their world and their fight. We have been given a glimpse into the awful reality of their situation.

We will all have our opinions on what has been happening but at the end of the day the people that mattered were Charlie and his family. They were the ones that were having to live each day with all the difficulties that entailed.

No family, in an ideal world, should ever have to go through the trauma of losing their baby or child, but to have to do this in the public eye must be overwhelming. 
I truly hope that the press now leave the family to grieve in private, to let them organise and have Charlies funeral to say their goodbyes & to try and continue to live their lives without their precious little boy.

One thing I really hope they have in place is a co-ordinated after care package to support them through the darkest times of their lives. We know how difficult it is to keep functioning even when you have support but if there is no support available it can be virtually impossible to keep going.

This is what motivated us to set up this charity and to petition the Department of Health to make changes to the current provision of bereavement support. 
If the family find it difficult to find support Charlies-Angel-Centre Foundation would definitely be there for them.

Your fight is now over Charlie, you are now free of pain and able to fly high with the other angels. You have been such a brave little boy, now its time to rest.





Friday, 21 July 2017

Who is Charlie Arthur Curtis?

This is a question I will never tire of answering, all of us are so proud of Charlie and what he has inspired us to achieve. 
Even when we are finding it difficult or emotional to talk about him we just remember how brave and strong he was.
When we are asked to do an interview or write about him it fills us with pride to tell them all about this incredible little boy.

Charlie always will be a very very special little boy to us, his family, but over the last 4 years he has also become special to so many others.

He is a Son, a Grandson, a Great Grandson, a Nephew, a Cousin and now a special Angel.

He was a fighter from the day he was created to the day he left us to gain his angel wings. Someone so small and vulnerable should not have to fight like he had to but he showed so much strength.

He fought against his illness with great vigour and showed his mummy what a tough little cookie he was. 
Through his show of strength he also gave her fight to keep strong and protect his life for 32 precious weeks. 
He then gave her the strength to carry on after his death and to try and help other families.

Charlie also gave the whole family strength to support his mummy through the hardest challenge in her life as well as enabling us to be able to keep going. 

We have all come through as much different people, all of us changed in different ways. 
Issues that we used to think were massive problems now pale into insignificance. When you go through a loss it puts other things into perspective and makes you reevaluate your reactions to situations.

None of us have been left untouched by Charlie's presence.

Now his fight is being felt by so many more people all across the UK and the world. Because of him there are now so many more families that are able to access the support and friendship they need to help them.

How amazing is it that such a small little boy can be making such a huge effect and making major changes all over the world. 

I want everyone to know about Charlie because I feel so proud of what he achieved and is still achieving in his memory.

Charlie Arthur Curtis, an inspiration, a motivator, a little prince.

Friday, 14 July 2017

Since we set up the charity in 2013 we have been the ones who have organised and hosted all the fundraising events. We have really enjoyed the things we have arranged and have tried to make them a variety of events to appeal to a wider audience.

It has got easier over the years as we have gradually gained experience and confidence in our abilities but at times it has been very time consuming and stressful. 
Our hope has always been that we would get to the point where other people would be holding events or taking part in sponsored events. 

Well 2017 seems to be the start of this happening.

It has been absolutely amazing being contacted asking if it was 'ok to do an event for us'. Some of them have been friends of families we have supported, some have been families who have lost a child or baby and others have been companies that have seen our website and liked what we are doing and want to help.

The first company to contact us was Touchstone, who are themselves a charity that work in the field of mental health. One of their employees had found our website whilst looking for a local charity to support. Every year they choose a charity to raise money for and luckily for us they liked our vision and plans to change the current provision of bereavement support.
They organised 2 events, one was a fun day at their offices, and the 2nd was a sponsored walk at Roundhay Park, Leeds.

                            

                            

These are a couple of pictures from their first event. The day was a great success and everyone had a brilliant time. They managed to raise a fantastic £298.53.
The sponsored run was also a great morning, I went along originally to cheer and support them all but ended up joining in and completing the walk myself. It was  really good getting to walk round with them all and get to know a bit more about them.



We are hoping that we will be able to meet up with all of them again. In total for the two events they have currently raised over £500, what a wonderful group of people they are.

 
The next event that has turned out to be a huge fundraising success has been the Leeds 10K. 
Originally we had just one runner taking part for us, Charlies Uncle Shane. In his youth Shane had been a brilliant cross country runner so I think he saw this as an event he could excel in. He has not really ran much in his adult years but he was truly determined to do it.

A couple of weeks before the race we received an email from Bevan Brittan Solicitors letting us know that there were 9 of the employees taking part in the 10K for us. They had chosen us because we have been supporting a family who are one of their employees close friends. We were really surprised but very excited and grateful.

 
In the week running up to the run we were again contacted by a lady, Ruth Childerson, who had decided to do the run for us as a close friend had recently lost a baby and we are now supporting her. It is very touching when things like this happen as it shows us how important the work we are doing is and that there are people out there who want to do something to show their support.


On Sunday 9th July several of us from the charity, along with Charlies three young cousins, went along to cheer everyone on. It had forecast unsettled weather but it turned out to be a blazing hot day. 
Charlies cousins, who are Shane's daughters, had been busy making posters to wave in support of everyone.




They were very excited to see their daddy along the route and were even shouting out 'run daddy run'. Shane excelled himself and finished the run in 1 hour 8 minutes. We are all very proud of him and know Charlie will be as well.
Lyndon Cambell from Bevan Brittan completed the run in a personal best time which in such hot weather is fantastic.
Ruth ran the race in 1 hour 21 minutes. To complete the run is good but to do it in such scorching sunshine is outstanding. 







  The current total for the money raised from the run is £4,226.46.
What an absolutely phenomenal amount, we would like to say a massive thank you to everyone who took part in the race, you are all wonderful people. 

The funds you have raised will enable us to continue to provide our services to bereaved parents and families across the UK.

We hope that it continues like this and we get many more people organising events to fundraise for us. We love getting to meet so many amazing fundraisers.

Friday, 7 July 2017

Each week things seem to be getting bigger and better for the charity, and this week has been no different.

On Monday 3rd of July we took a huge step forward on our road to opening our bereavement centre.

We have been looking around for a bigger office to move into for a little while as we have been growing out of our current one. A few weeks ago we finally found the one that we could see us developing our services in.


 We had been to see a few but this one just had that feeling about it, it felt comfortable and spacious. The office is situated close enough to the town centre for good transport links but not too close to the hustle and bustle. It also had parking spaces available which is important to us when we have clients or counsellors visit.


We have spent the last couple of weeks sorting out the furniture and decor and we think it is looking really great. 
We feel like we have made a nice welcoming environment for anyone to come along to. 

Having this room will enable us to see many more families and will allow us to start up our Community Support Group here. We are also hoping to start up drop in sessions and a men's support group.


The office will also enable our counsellors to arrange to see clients there.

Last week we held our first committee meeting at the new office which was a great opportunity for our trustees to see how things are developing. They were all really positive about the room and commented on how warm and friendly it was. We couldn't have had a better response which just confirmed that we had chosen the right one.

This week we invited 2 professionals, from the hospital, that we work closely with to come and see what we had to offer and they loved it. They agree that this is a huge step forward for us and will ensure that we can continue to grow and get our services out to as many families as possible.


The next chapter in our charities development has well and truly began. If you are ever in the area of the office please pop in to see us, let us show you around and see what we have on offer. 

We are really proud of what we have achieved so far and feel that this is just the start of something even bigger which will make sure that bereaved families are able to access the help and support they deserve and need.

Thank you to all of you for getting behind us and for your continued support it really has made a difference to us and the families we support.

Our address is Sandway Business Centre, Shannon Street, Leeds
LS9 8SS. 

Charlies-Angel-Centre.org.uk