Children's Hospice
The word hospice elicits feelings of fear for most people, and 'Children's Hospice' is a coupling of words bound to make anyone feel a little sad. Before Elodie was born, we knew Julia's House to be one of the better charity shops that we like to frequent in Dorset. We had no idea what they actually did. And now I am painting a 7 foot mermaid tail for them (more on that below)!
When we came home from hospital, we were assigned a Community Children's Nurse (CCN) who would visit us occasionally in our home, bring medical supplies, and most importantly do loads of important work behind the scenes on our behalf. Paperwork in particular and helping us with forms that we had no mental capacity to even consider was especially helpful. She also put in requests (with our permission) to a few charities who could help us.
Julia's House is a Children's Hospice- a place where children with life limiting conditions can go and spend time having fun, being cared for by qualified nurses and carers, giving their parents and families a much needed break. However they do so much more than this; since Elodie was two weeks old, we have had home visits from her little team of nurses who come with bags full of sensory toys and play with her here in our house for a precious few hours so that I can have a much needed shower (!), do some cleaning or artwork, or even try and get some sleep.
When they are with her is one of the few moments when we can truly relax and think about other things without feeling the urge to constantly supervise or be overprotective. We know she is in the safest hands, with people who really care about her and are will do whatever they can to keep her happy.
Julia's House also have helped us with paperwork, organised a trip to stay in their New Forest caravan, referred us to other charities, and I've even had a massage at the hospice while Elodie had fun in the sensory room.
They also organise family trips and get-togethers which we know we can attend safely, as everyone there is in the same boat-both in the sense that they understand the need to distance or use endless amounts of sanitiser, but also the underlying pain and anxiety that comes with being a parent of a child who you know you probably don't get to keep forever. This is why events like these are so important as making memories takes on a whole new level of significance when every time you do something could be the last. My husband raised over £7000 for them running a half marathon last year, and I am SO happy to be part of the Great Tail Trail, painting a huge mermaid tail which will be on display next April until June when it will be auctioned off and hopefully raise even more for this wonderful charity. Please do check it out and go and enjoy over forty beautiful tails whilst helping families like ours.
A few months ago a team of family and friends joined Elodie and I on a beautiful coast walk raising money for the Three Ells Trust, another local charity who have been incredibly generous and helpful to us, and the Rainbow Trust Children's Charity also provide us with a wonderful care worker who comes and plays with Elodie at home for a few hours every few weeks and you can now even watch a film about their impact on us if you scroll down on the link below.
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