Saturday, 28 February 2015

Dear Mr Cameron,
We were a normal run of the mill family until December 29th 2012.
We then became a bereaved family and life has never been the same since.
Our daughter, Carrie-ann Curtis became pregnant during 2012 and after the initial surprise we were all getting excited at the thought of becoming grandparents.
When Carrie went along to her first scan, our world was turned upside down. We were told that there was a problem with the baby, and Potters Syndrome ‘was eventually diagnosed. After several visits and scans we were told that the condition usually means that the baby is incompatible with life.
Carrie showed amazing strength and said that as long as her baby had a strong heart beat and was fighting to survive then she would also fight for his survival.
Unfortunately Charlie Arthur Curtis only managed to fight for 19 minutes after his birth on December 29th 2012. He showed so much strength and fight but the illness was too strong for him.
We left the hospital on the 31st December after spending quality family time with Charlie on the Rosemary Suite at Leeds General Infirmary.
Once we were out of the hospital we seemed to become invisible to the services. Carrie was given minimal support, only getting two midwife visits, despite her body still going through the same things every new mum experiences.
We have fought to get bereavement counselling for her but we kept getting pushed down the mental health route. Carrie was bereaved not mentally ill.
We have worked hard to campaign for improvements to bereavement support and have been lucky to get our local radio station behind us. We requested a freedom of information report into the provision of bereavement support within the Leeds area. When we got the reply it took our breath away. It showed that at the time of the report that there were 32,000 people awaiting grief counselling.
In March 2013 we decided to set up a charity in our grandsons name with the main aim being to set up a 24 hour bereavement centre. We also decided, due to our own experiences and those of other families we have come into contact with, to campaign for improvements to the current provisions of support for families going through a loss. We have attended meetings with our local NHS CCG and have set up an e-petition.
We are writing to you to ask if you could get behind us and give us your support and help the lives of thousands of families out there going through the hardest battles of their lives.
There needs to be a change.
We have had so many families contact us through our website ( and our social media sites telling us of their own experiences and lack of support.
Surely all these families deserve the correct care and support to help them deal with their losses.
We would be more than happy to talk to you about our experience and what we would like to achieve.
Yours sincerely
Gary & Ruth Curtis, Sam & Clive Key
(Charlie’s Grandparents

Friday, 27 February 2015

This week has been another week when I have seen how important it is for our bereavement centre to open, and open as soon as possible.

Another family that I know are currently having to go through the trauma of losing their little baby boy.

The mother and her family are waiting for the birth knowing that her little son is not going to be alive.

What worries and saddens me is what support this family will be able to access when they have left the safe confines of the hospital.

This is yet another family that will join the 32,000 already awaiting bereavement counselling in Leeds. 

How can this be right.

It is starting to make me feel very angry and frustrated towards the system that allows these families to struggle on alone.

When we were going through the loss of Charlie none of us knew how wide spread this problem was. 

We had never had to consider the provision of bereavement services and were ignorant to the fact that the provisions were so inadequate.

I wish we never had to find out that there was a problem but I am now glad that we are able to try and make a difference.

Every time I hear of another family or meet another family going through a loss it makes me more determined that a change will happen.

I really do think that we were chosen to go through this tragedy because we are all stubborn, strong willed and the sort of people that once we start something we will not give up until we have achieved it.

I believe that everything happens in life for a reason and although you may not like the reason and it can feel very unfair you are given the event because you can get through it.

Charlies short but amazing life will make a difference to hundreds of families both now and in the future. 

This makes me feel so tremendously proud to say he was my grandson.

Sunday, 22 February 2015

I have been trying to find out what kind of support is out there for bereaved/grieving  dads.
However, I haven't been able to find much information about what I was looking for. 
For most men it is a process of researching online what is available in their area. 
I think one of the reasons I haven't found much is because most men do not feel like they can tell their story or share how they are feeling out of fear of being looked at as less of a  man or weak.  
We all know that society is not comfortable with an openly grieving person, but they are even more uncomfortable with a man showing his emotions.
This problem comes from men being taught at a young age that they should not show “weakness” and that they have to “be the strong ones”. 
As a result of this they do everything they can to hide their pain and be 'the rock'. 
Men try to take on the role of protector.  
They feel it is their role or duty to help their partners and family through the loss and to keep everything going in the house. 
This approach doesn't work though, it only extends the grief process and can actually delay it for years.
Because most people in society feel uncomfortable with a grieving parent’s pain, they want to try to solve their problem, but they can’t.  
This isn’t something you can have a friendly chat about and expect the person to walk away feeling different or better.  
You cannot solve this problem.
It takes a long time and a lot of pain to realize that you have to face your own grief before you can help your partner through theirs.  
It is important that couples should travel this journey together, helping each other when they can.  
Sands is an organisation that helps both the mums and dads going through a bereavement.
The whole family is welcome to attend their monthly meetings and get support off other families experiencing the same loss.
Most support groups that are out there for men have usually been set up by other grieving dads once they found that there was little out there to provide for their needs. 
Some dads also start up blogs as a way of expressing their grief and as a way of other dads seeing that they are not alone.
  Here are a few ways to help give support to the grieving dads you may know or come into     contact with:
*      Encourage them to talk about what they are feeling and thinking.
*      Remind them that they are not alone.
*      Let them speak openly about their pain.
*      Do not try to solve their problems.
*      Encourage them to find support groups for men.  These groups don't need to be                    specifically grief related. 
*      Do not push them through their grief, allow them to tell their stories in their own                       time.
*      Allow them the time to process what has happened to them.
*      Allow them to turn to or away from their faith as needed.
*      If they start to cry, let them.
*      Let them know you are there for them at any time of the day, and mean it.
These points are just as valid for anyone going through a bereavement and they are good to refer back to when you are helping someone through a loss.
Remember that people that are grieving are very sensitive, so it is even more important than normal to think before you speak. 
If you really don’t know what to say, say nothing.  
There is healing in silence so it is better to sit quietly and listen than to say words that are not helpful.

Monday, 16 February 2015

There is no right or wrong way to honour and remember your baby.  Do what feels comfortable for you and your family.  Don’t let anyone tell you that what you choose to do is ‘wrong’.  The list below is merely a few suggestions for things you can do to remember your baby and keep his or her memory alive.
Keep a memory box of your baby’s special items. 

If you had a late miscarriage, a stillborn baby or a baby who died after birth, you may have hand and footprints, hospital bracelets, clothes and photographs of your baby. 
Most hospitals now provide families with a memory box, and will have items in it such as a lock of hair, blanket baby was wrapped in, a candle, the first hat that your baby wore and babies umbilical cord.
 If you had an early miscarriage or a termination for medical reasons, you may have scan photographs or photographs of special places you visited while pregnant which you could store in your Memory Box. 
You could also include letters to your baby, sympathy cards you received when your baby died – anything at all that reminds you of your baby. 
If you were not given a box by the hospital buy or make a special box to store all these items in, so you can take them out and look at them whenever you wish.

Buy a piece of  jewellery with your child’s name and special date on, or with their prints on.  There are many different companies that provide this.

Some people find it helpful to write a blog to record their journey after losing their baby. 
 If you are not comfortable with openly sharing your experience with the world, you can make your blog private. 

Write a letter to your baby.  Writing down your feelings and things you would love to have said to your baby can sometimes help you cope with the emotions, or at least make them a little more bearable.

Release balloons for your baby. 
You could attach notes, letters or poem to your balloons if you wish.
Buy keepsakes and memorial items that remind you of your baby. You can buy things not only for the home but also the garden. If you had a funeral and buriel you could buy memorial items to have forever at their grave.

Name a star or a flower  after your baby.

Make a donation to a baby loss related charity or a charity that means something to you and your family in your baby’s name.

Order a Charlie Bear from our website, not only for you to hug to fill your arms, but to help other children in the family.
There are some companies that provide bears that are the exact weight your baby was, thus giving you that comfort of hugging something the same size.

Donate Memory Boxes to your local hospital.

Become a bereavement befriender and support other parents who have lost a baby (you will need to be a year into your loss to sign up).

Contact your local council and find out if there will be any local tree plantings.  You could arrange to have a tree planted in your baby’s memory.

Plant a flower garden for your baby.  You could do this in your own garden if you own one, or you could buy large planters to use on a patio or balcony.

Organise a fundraiser or sponsored event to raise money for a baby loss charity, or our charity, in your baby’s name.

Speak about your baby as often as you feel like it, to whoever will listen. Acknowledging that your baby was here and was important is an important step.

Make a scrapbook or photo album of photographs of your baby, or photographs of things that remind you of your baby.
Light candles for your baby on special dates, or whenever you wish.

Organise something special on your baby’s birthday or a special date.  You could ask friends and family to join you in releasing balloons, or you could do something small at home by yourself to remember your baby, such as writing a letter, lighting candles on a cupcake, or buying a special keepsake that reminds you of them.

Take photographs of items that have your baby’s name on, or you could take photographs of your baby’s name written in the sand, on pavements, made out of pebbles, leaves – anything at all!

Thursday, 12 February 2015

Any change or loss can be really unsettling for young children. 

Children like stability and find great comfort in it.

All parents have had the experience of a young child insisting that they read the same story over and over and over again, or that they continually want to watch the same video or listen to the same song. 

Young children benefit from having routines - ways of getting ready to go to bed, rituals about what is said and done when they get up in the morning,the way they walk to school. 

Children need to have boundaries of lifestyle and behaviour set for them, and lack of boundaries can lead to a poorly-developed sense of self, poor self-control and inadequate social skills.

In most cases, children are not as good at anticipating change than adults, but can often appear to adapt more quickly once the change has happened. 

Any form of change, such as going to a new school or moving to a new area, can be very unsettling, regardless of how many improvement the change brings. 

An adult moving to a bigger house may think that this is an exciting and wonderful time. 

They look forward to the change and can only usually see the long term positives.

However, the child may dread the change or find it disturbing no matter how much they might want to have a bigger room. 

It is totally normal for them to feel this way.

Once the change has happened, the child's mood may change very quickly and they may appear to adapt very quickly to the new situation. 

In traumatic circumstances, however, this doesn't mean that the change has had no effect on the child.

Reactions may surface later, even many years later. 

If given the right support, children can be very resilient and adapt to changes more quickly and positively.

A child's reaction to a loss may appear illogical or disproportionate to an adult. 

A child who has just lost a parent may not appear to grieve openly at all, while the rest of the family is devastated and finds it hard to comprehend that they want to go out and play as usual. 

On the other hand, the loss of a special toy or security blanket may be overwhelming for the child and they may find it difficult to sleep or eat until the toy is found.

Many changes are no one's fault and cannot be stopped from happening. 

A parent may change jobs and have to move the family to another city,
parents may not get along and may separate or divorce, or a loved one may die. 

In such situations, adults may understand that no-one is to blame. 

However, it is common for children to blame someone when they experience an important change or loss. 

Sometimes they blame themselves, regardless of how unrealistic this may seem to an adult. 

If this is the case, it is important to say specifically to the child that many children do this but that they are not to blame. 

They also need to know that you don't blame them. 

They see that you are upset and wonder if they could have done something to make you feel better or stop the event happening.

Parents' divorce may be extremely traumatic for a child, and as a result they may feel worried, angry and lacking in trust and confidence. 

Children who have suffered trauma may be aggressive, withdrawn and less able to learn. 

Respect and understanding from teachers and classmates is therefore crucial to helping the child. 

Boys in particular may be badly affected if, as is often the case in divorce, the father leaves home. 

As most early years teachers are women, these boys may lack any stable male role model. 

Teachers and parents should be aware of this.

Children should also be encouraged to recognize changes within themselves. 

At this age, they become very aware of their own level of maturity in relation to other children - they can start to see that younger children are more 'babyish' than them, they can see the toys that they no longer play with, and when they start school they quickly learn to define their classmates in terms of years or grades. 

In this way, they learn at first hand that changes, both good and bad, are a part of life.

Friday, 6 February 2015

MYTH: The pain will go away faster if you 

ignore it.

Fact: Trying to ignore your pain or keep it from

surfacing will only make it worse in the long run. For

real healing it is necessary to face your grief and 

actively deal with it. You may feel that the only way 

you can cope is to ignore the pain but this will only 

work for a very short period of time and in the long 

run will only delay you on your journey through grief.

MYTH: It’s important to be “be strong” in the

face of loss.

Fact: Feeling sad, frightened, or lonely is a normal 

reaction to loss. Crying doesn’t mean you are weak. 

You don’t need to “protect” your family or friends by 

putting on a brave front. Showing your true feelings 

can help them and you. It can feel very scary to 

admit your feelings but once you open up to those 

around you it will help all of you.

MYTH: If you don’t cry, it means you aren’t 

sorry about the loss.

Fact: Crying is a normal response to sadness, but 

it’s not the only one. Those who don’t cry may feel 

the pain just as deeply as others. They may simply 

have other ways of showing it. Some people find it 

hard to cry as they see it as a sign of weakness, 

others have also said that they are afraid to let the 

tears start because they don't think they will be able 

to stop them.

MYTH: Grief should last about a year.

Fact: There is no right or wrong time frame for 

grieving. How long it takes can differ from person to 

person. Don't let anyone ever tell you that there is a 

time limit on grief. Everyone is an individual and 

deals with their grief in their own way. Some will 

find it easier to express their grief and ask for 

help/support. Others will hold it inside for longer and 

don't want to burden others. Grief takes as long as 

is needed by each individual.

Monday, 2 February 2015

When you are going through a bereavement or loss there are some days when you actually start to think that maybe life can be 'normal' again.

You begin to enjoy things that you thought you would never be able to deal with again.

It doesn't matter what part of the bereaved family you are, everyone will be affected in a different way, and I do believe that everyone will be affected.

Sometimes the effects may not be obviously apparent to the person or to others but their life will have changed in some way.

It can even take many years for the effects to show up and sometimes they can just happen out of the blue and take the person by surprise.

One minute you can be getting along with your everyday life when 


it hits you.

Some describe it as feeling like they were just hit by a baseball bat and it totally winds them.

Don't ever underestimate the impact bereavement or a loss can have on you or your family.

There may be times when you try to hide your difficulties away from others because you do not want to burden them. 

You often won't tell other family members as you think that they are going through it as well and it could upset them even more.

You also then think that friends may not want to keep hearing about your problems or won't understand how you are feeling. They have their own lives and you don't want to bother them with yours.

Just remember though that they may be feeling the same and then the issues never get discussed and everyone still feels anxious.

Talking about your feelings is one of the hardest but also the most helpful ways of helping all of you to get through this period in your lives.

Your life will get back on track, maybe a different track, and you will still have days when you feel as if you are out of control. 

But if you support each other and work together then you can feel more in control of your future.

Be kind to yourself and don't expect things to happen too soon.