Children’s Hospice Week 23-29 May 2016

This is the first year that Charlie House have joined in with Children’s Hospice Week and the key theme for this year is time to put families first.

I’ve just read my friend Kirsty’s latest blog about being a mummy carer and how caring for a child with a life-limiting condition throws all sorts of curved balls at you, the daily emotional roller coaster and the feeling of just wanting to be able to do everyday things as an ordinary family without the potential for having a serious situation develop in public and losing your confidence. It is not surprising that many of my fellow mummy carers can feel isolated and alone as they care for their special children, particularly at the start of their caring journey as they have probably also given up their careers to take on the caring role full time.

Louis spent the first 6 months of his life in the Neonatal Unit in Aberdeen, it was a bizarre experience of being torn to be with him and needing to be at home for my then 3 year old son. My husband, Craig & I, pretty much did shifts at Louis cotside and being at home for Ellis. The Neonatal staff were amazing but it was difficult as time went on to see all the other babies only spending a few days or weeks and being discharged from the unit. The absolute worst time was when Louis was sent to Glasgow for surgery, he was just a tiny thing and we were given the usual doom & gloom story of expectations of the outcomes of the surgery etc. We stayed in the accommodation provided with lots of other families all going through their own personal nightmares with their very sick children – it was the most lonely place that was full of people that I have ever experienced.

I cannot express how important a lifeline it is being able to talk to someone else who is experiencing the same roller coaster journey, to share your stories with each other, to laugh at things that some would probably think inappropriate and to offer a shoulder to cry on. Someone who understands completely what you are experiencing and you know that you are not alone and to feel like a normal regular everyday family.

Providing mechanisms for families to meet, support each other, relax, have a little fun and to make friends is something we do at Charlie House. Our Saturday Club is growing in number and as more families with younger and older children are contacting us we plan to develop more clubs in the coming months that will cater for the specific needs of different age groups, this is only possible because we have some amazing fundraisers and volunteers who support our work. We are still planning and dreaming of bigger things and hopefully in the future we can give these very special families what they really need, a haven, a place to go, somewhere to recharge their batteries, somewhere they can be a family.

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