Friday, 19 May 2017

Losing a child is the loneliest, most isolating journey a person can take and the only people who can come close to appreciating it are those who share the experience.
No one wants to belong to this group.
The loss of a child is a pain all bereaved parents share, and it is something that is impossible to understand fully without experiencing it firsthand. Often, when we know someone else is going through grief, our discomfort keeps us from approaching them. But those families want the world to remember their child or children, no matter how young or old they were.
If you see something that reminds you of their child, tell them. If you remember them at the holidays or on a birthday, tell them you remember them. And when they speak their name or relive memories relive them with them, don't hide away.
 If you never met their child, don't be afraid to ask about them. They are usually more than happy to tell you all about them. Talking about their child validates their existence and can bring comfort to the family.
Child loss can break a person in a way that is not fixable. They will learn to pick up the pieces and move forward, but their lives will never be the same again.
Every grieving parent must find a way to continue to live with their loss, and it can be a lonely journey.
The grieving family appreciate your support although at times they may find it difficult to show it.
Don't tell them it's time to get back to ‘normal’ life, don’t tell them it's been long enough, or that time heals all wounds. These all mean nothing to a grieving parent, they are empty words.
A grieving family will count birthdays just like any other parent, and imagine what their child would be like if they were still living. Birthdays can be especially hard. They long to celebrate their child's arrival into this world, but they are left feeling intensely aware of the hole in their hearts instead. Some parents arrange celebrations while others prefer to be on their own. Either way, they are likely to need time to process another year without their child.
Then there's the anniversary of the date their child became an angel. If their child had lived they would be marking milestones, counting days to start with then months until they hit their 1st birthday. They are still counting in days, weeks, months and years but they are not seeing milestone achievements they are measuring the time they have been without their child.
No matter how many years go by, the anniversary of when their child died brings back deeply emotional memories and painful feelings. The days leading up to that day can be unbearable or feel like it is difficult to breathe. It's an ongoing battle to balance the pain and guilt of outliving your child with the need to live in a way that honours them and their time with them.
As a bereaved parent, they are forever balancing grief in one hand and a happy life after loss in the other.
 You may not know what to say or do, and you may be afraid you might upset them. Whereas in reality they have already been through the most upsetting time of their lives and you talking about their child can break the silence that is often put their as a way of self preservation.

They will never forget their child. And in fact, their loss is always right under the surface of other emotions, even happiness. They would rather shed a tear because you have spoke their child’s name and remembered their child, than try and shield themselves from the pain and live in denial. The stronger and deeper the love the more grief will be created on the other side. 

Friday, 12 May 2017

Tonight we are sharing with you one of our trustees experiences of how her and her family have dealt with their own bereavements. 
They are a very brave family to be able to share such personal and difficult times in their lives. 

Talking and sharing our experiences can be a good way of beginning to understand and cope with our grief.

Dawn's Story
In 2002 I gave birth to my second child Charlotte, I was delighted when I found out I was having a girl!
My pregnancy went well but as my first born Lewis was premature I expected Charlotte would be too. 
At 32 weeks my little girl arrived.
She appeared fine but then within 24 hours she had a pulmonary haemorrhage due to her blood not clotting and was heavily sedated and put on a ventilator. We were all puzzled as to what had gone wrong and it was about day 7 until a diagnosis of liver failure was found. 
After a long battle Charlotte passed away in our arms at 14 days old.
It felt like my world had fallen apart. Nobody can ever be prepared for the pain of losing a child.
On the evening Charlotte passed I remember walking out the hospital with just a blanket and a handful of leaflets feeling numb.
Apart from a routine visit from my GP I felt there was no professional support. 
I’d never even been to a funeral let alone organise my own baby's. I had a 3 yr old boy to look after who kept me going and a purpose to carry on.
We never got a reason for Charlotte's death except liver failure but as we wouldn’t agree to a post mortem there wasn’t a medical reason.
Several months past and I found out I was pregnant again. 
We were delighted but very nervous. I was monitored very closely but at 36 weeks my baby girl Sophie arrived, she was perfect and healthy and helped comfort those empty feelings and dark days.

2008 I gave birth to another girl Ruby Isabelle, I always had a niggle that she would need tests and monitoring but I was reassured by the doctors that I had 2 healthy children and not to worry. Shortly after birth Ruby had her routine bloods done. Her blood sugars were extremely low. They took her the neonatal unit and started to do further tests. Within 24 hours Ruby’s clotting levels were low and our heart sank when they told us Ruby was very ill. They were pretty confident the results indicated there were medical issue that Charlotte had when she was born.
We were truly devastated how can life be so cruel. The doctors knew there had to be a medical reason not just bad luck. To have 2 babies presenting liver failure must be caused by something else. The obvious condition to them was something called Neonatal Haemochromotosis. This is a very rare condition but with the little knowledge known about it they tried their best to keep Ruby alive and treat her with various drugs and blood products.
On day 4 Ruby deteriorated quickly and we had to make the heart wrenching decision to take her off life support.

Having been through the pain already didn’t make it any easier, in fact it made it worse knowing how difficult the journey ahead was going to be. Once again I had to walk away with yet more leaflets, a blanket and a broken heart in the cold night sky.
Hours felt like days and weeks felt like months, I had Lewis and Sophie at home and telling them their baby sister had gone to heaven was the hardest thing I’ve ever had to do. Through my own pain I had to comfort them too.
We agreed to a part post mortem for Ruby to give us some answers. The results were clear cut, Neonatal Haemochromotosis was the reason my babies were taken from me. It is a very rare disease that happens during pregnancy when the mother develops an antibody that causes a buildup of iron in the baby’s liver and other organs. After the index case it is an 80-90% chance of recurrence and the survival rate is very poor.

We know now that Sophie really was a miracle! 

The liver consultant told us that a doctor in America had done a lot of research on the disease and found a preventative treatment during pregnancy. I needed to know more about this and began to have contact with the doctor in America.
I had to give it a go! 
Everyone thought I was crazy but I needed to try the treatment I wanted to bring home a healthy baby. I felt a lot of guilt that my body had caused the death of my baby girls. I felt having a successful treatment I would be giving other families hope and I was doing it in the memory of Charlotte and Ruby.

In December 2009 I had a miscarriage at 9 weeks and a couple of chemical pregnancy’s following that. I didn’t know if I could take much more heart ache but I did fall pregnant again and began my treatment which meant sitting on a drip 11 hours every Thursday for 20 weeks! It felt like a massive mountain to climb and a very difficult journey as I didn’t really know what the outcome was going to be.

There had only been 1 other lady in the UK who had gone through the treatment but it was successful.

10th September 2010 my precious Hannah arrived after a planned delivery, it was nerve wracking waiting for her blood result but miraculously she was fine! the treatment had worked. She had some scarring on her liver but after 11 days we brought home Hannah Faye healthy and a little miracle.

As a family we had been through so much and years of heartache.
I always wanted to help other families but didn’t know where to start. I openly talked about my girls to people and kept their memory alive. 

About 18 months ago I came across Charlies-Angels and could relate to their mission to put better after care in place. Their story about Charlie touched my heart and I began to attend fundraising events and having contact with Sam and Clive.

The work they have done and are continuing to do is amazing and I wanted to help them make a difference so I became a trustee. 

Helping other families who are feeling the pain I have felt gives me comfort and helps me cope.

Friday, 5 May 2017

Saturday 29th April saw 2 very special girls take on the challenging 'Radical Run' at Temple Newsam Park, Leeds.

Rhiann (10) & Amy (8) took on this event in memory of their cousin Charlie. They have always been involved with so many of our fundraising events and as they have got older they have wanted to try new and exciting challenges.

When they initially agreed to do the run I don't think they actually truly understood what they were taking on. Once we got to the park they began to look a little nervous bless them. It did look a pretty daunting course especially when you are only small.

We got them registered and took them down to the warm up area. They were definitely looking very nervous by now and matters weren't made better when Amy had to take off her glasses to run. The officials had been told that for health and safety reasons glasses were not allowed. For those who know Amy they can understand why she was a bit upset, her vision is not the best without her specs.

The organisers began to let the kids of a row at a time.

Suddenly they were off, Granddad went with them to the first obstacle to help them conquer their nerves and when they ran out the other end of the inflatable maze they were both smiling.

They then began to look as if they were really enjoying themselves and were even laughing together. For those of you with this age daughters you can truly understand how 'unusual' that can be !!!

Part of the course involved the girls going round a short course on a space hopper, it was so funny watching them bounce round.

Both girls ended up thoroughly enjoying themselves and Amy has already said she would love to do the Colour Run next.

The girls managed to raise the amazing total of £565. Well Done girls we are all so proud of you.