Thursday 23 October 2014

Since Charlies diagnosis of Potters Syndrome in September 2012 I have spent many hours looking on the internet at information and Potters Syndrome support groups. 
It amazes me now to think that none of us had ever heard of Potters Syndrome/Sequence. 
It feels like Potters has always been in our lives.

After we lost Charlie I even joined several online groups to support families affected by the illness. 
I hoped that they would be able to give me some answers and help me understand why we had lost our 'little man'.

At times I find these sites can be very helpful and give you somewhere that you know you can talk about your child without worrying about people being upset or offended by you talking about death. 
You also know that the people can empathise with you and won't judge you. 
They won't be telling you to 'get over it' or 'pull yourself together'. 

You can even share your photos of your angels, again without fear that someone will have a go at you or report you for sharing a picture. 
I know some people don't always realise how upsetting it can be when they complain that people are putting pictures on of dead babies. 
What they don't think about is that those babies are someones child, grandchild and those families are proud to share their photos. 
We are like any other family who has just had a baby, just our babies have not been able to stay with us. 

Sometimes though I find it very difficult to visit these sites as I know that everyone on there has been through the same traumatic events we have. 
It makes me feel very sad that there are so many people out there currently going through the process of grieving for their baby. 
At times this can be very overwhelming.

It is so important for bereaved families to be able to share their difficulties to help them get through their journey and to have a forum where they can feel safe and supported. 

Sometimes I can find it difficult to read other peoples stories, some going back 20 to 30 years, and seeing that there has been very little progress or research done into this devastating illness. 
You can read some of the stories and feel like they are telling your story.

Hopefully it won't be too long before we can start to offer face to face and telephone support for some of these families and families that have lost their babies through other reasons.

As we get more and more support,both financially and physically,it starts to feel as if we are so close to being able to open the doors to our support centre.

I think the more places out there offering different methods of support for bereaved families the better. 
People need to have options and choices, something that is severely lacking at the moment. 

I think that the next 18 months will see a big change in the provisions of bereavement support, especially in Leeds, and we will be a big part of this. 



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