This is the story of amazing Mr Joe, who sadly passed away at home on 30th May 2015. Joe was born with an undiagnosed neurological syndrome and for several years came to Bluebell Wood for respite, where he could relax and enjoy sensory play.
His mum Claire said: “Joe was born three months early, weighing less than a bag of sugar. My pregnancy was different; I underwent dialysis every day because I have Renal failure. My many scans showed Joe wriggling around and although not the biggest of babies, my doctors were happy with his progress.”
It was a complete shock when Joe decided to make a very early appearance. After his birth, Joe was resuscitated, ventilated and popped into an incubator. Claire said: “I couldn’t wait to see him and when I did, I remember this overwhelming feeling of love. I’m so very blessed to have had my brave special little man in my life.”
Joe and Claire first visited Bluebell Wood in 2008. “I was really scared and was so worried it would be just like being in hospital, where Joe had spent so much of his little life. But from the minute you walk through the doors, you realise it’s just like being at home,” said Claire.
He was an incredibly brave boy with a range of complex conditions; having been born with anophalmia, which means he hadn’t got any eyes. Claire said: “Although Joe couldn’t talk, for such a little man he had a big shout when he needed to tell people things.”
Joe sometimes let the play co-ordinators at Bluebell Wood paint his feet, he also loved the Jacuzzi. Claire said: “The Care Team and play co-ordinators are fantastic at creating wonderful memories, keepsakes and artwork; always adapting things to each child or young person. Joe wouldn’t use his hands for any art work but my living room is full of Joe’s gorgeous little feet pictures from bluebells to frogs.
“Joe couldn’t sit unaided as he had weak muscle tone, but he loved being pushed in his buggy around the gardens at Bluebell Wood, as they are very sensory even for children with little or no sight.”
Due to Joe’s blindness he never slept well and needed drugs every three hours, he was oxygen dependent and often forgot he needed to breath. Claire said: “Bringing him to Bluebell Wood meant that he could stay with the nurses while I got some much needed sleep. For me, leaving Joe with other people was really difficult. But Mr Joe was always safe in the amazing care of Bluebell Wood’s Care Team members.”
As well as respite stays, Bluebell Wood’s community team and counsellors visited them both at home. Claire still receives counselling from Bluebell Wood. “It is very reassuring knowing someone cares and will listen to how you’re feeling,” said Claire.
After Joe passed away, Claire stayed in the Bluebell Wood End of Life suite, called Forget Me Not. Claire said: “This space gave me precious time to spend with my beautiful boy until his celebration, which meant more than I can say, us both being surrounded by love and care.”
Claire added: “Joe didn’t always understand things, due to having a large bleed on his brain at birth causing neurological problems, but he knew when a voice was angry or happy and loving too… And at Bluebell wood he was always surrounded by lots of love.
“Thank-you Bluebell Wood for making my time with my Amazing Mr Joe the best ever.”