Jessica Rose Knowles Jessica Rose Knowles

Eddie has taught me far more than I’ve taught him

I often think Eddie has taught me far more than I’ve taught him. He’s taught me to constantly question things, he’s taught me patience and responsibility and more about ‘being in the moment’ than anybody else has ever tried to unsuccessfully teach me in 27 years. 

We often don’t think of children as remarkable or extraordinary, we don’t look to them to teach us how to see the world or how to respond to life but children are far more resilient, caring, sensitive and less judgemental than many adults I meet. Eddie shows me that on a daily basis but this week I had another reminder. 

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In December I was honoured to be amongst the guests at the EACH gala dinner at The Natural History Museum. As well as their own 3 hospices, East Anglia’s Children’s Hospices provide resources and a blue print to many other children’s hospices in the U.K. and abroad as well as providing care and support to children and their families. I was so touched by the stories I heard that December evening that I decided I wanted to work with EACH this year and do some fundraising for them. 

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On Friday I looked around the Milton hospice in Cambridge. On arrival what surprised me was that the hospice looks like a home; I was expecting a cold, hospital-like building not a beautiful, large, house set amongst mature trees. The hospice features incredible but necessary facilities such as the hydrotherapy pool – essential relief for children in constant pain, and the sensory room designed to calm and delight. At times I forgot I was looking around a hospice as it has been so subtly and carefully designed – it’s a double edged sword because there are such a beautiful facilities but also you would rather the children didn’t have to be there to use them. EACH also provide music therapy for terminally ill children and their siblings. Debbie – Lee from EACH recounted the time a little boy recorded a song for his mummy and daddy so they would always have a record of his voice, his words “Don’t be frightened I’m not frightened” are heartbreaking – for a child to have to come to terms with their own mortality is just too cruel. EACH focus on a celebration of life and continue to celebrate the memory of each child after they have passed. The sight of the cooling cot, designed to preserve tiny bodies so parents have a little longer to say goodbye, was beyond heartbreaking. It’s impossible to put into words and do justice to the emotion of that day and the incredible work that EACH do. 

The memory tree marked with the words ‘I have different dreams of you now’ and ‘I see you in the butterfly’ was very emotive. A lot of the work that EACH do is not only supporting the child in need of care but their families; siblings that are struggling to cope with their loss, dads who feel they have to be ‘the strong one’ but are falling apart inside and mums who have lost their entire world. I have so much admiration for the team that work there and give selflessly; providing endless care, support and positivity.

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Following on from the visit, this weekend with Eddie felt more precious than ever. I had heard that Kindness and co in Cheltenham were children friendly; believing that children should eat the same as adults, just smaller portions and they even have a toddler table and chairs which Eddie was thrilled about. I forget that he’s constantly a little body in an adult world and it must be wonderful to arrive at a cafe that has a table and chairs in your size. The children’s portions are served in bamboo bowls which are non toxic even when heated. We drank our green juices (Eddie’s favourite) and ate sweet potato muffins and banana bread whilst we drew pictures of our holiday in March and all the things Eddie wants to do; eat ice cream, play catch with a ball in the pool, go on an aeroplane and play football on the beach. Simple requests and memories I can’t wait to create with him. 

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This week was a sobering reminder that life is the most precious gift and should be enjoyed whole heartedly EACH and every day. 

www.each.org.uk

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