An inspirational mum has taken to the water and raised over £1,000 for Bluebell Wood Children’s Hospice in memory of her son Joe, who passed away in May 2015.
Claire Malcolmson, 39, from Gleadless, completed an impressive 50 lengths for her sponsored swim at Graves Tennis and Leisure Centre.
Claire and her son Joe, known as the Amazing Mr Joe, were supported for several years by the North Anston hospice, which helps children and young adults from across South Yorkshire, North Nottinghamshire, North Derbyshire and part of North Lincolnshire.
Mr Joe was eight years old when he passed away at home. He had an undiagnosed neurological syndrome and a range of complex medical conditions, which meant he was blind, never slept well, needed medication every three hours and had sleep apnoea.
Claire said that the swim for Bluebell Wood, where she still receives counselling, helped her to focus on something positive: “I have been training and it’s been hard but my Mr Joe was so brave. This was something I needed to do in his memory as Bluebell Wood has been wonderful throughout.”
For several years Joe came for respite at Bluebell Wood, where he could relax and enjoy sensory play. 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 placed 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 meant 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 and 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.
Joe was oxygen dependent and often forgot he needed to breathe. 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.”
As well as respite stays, Bluebell Wood’s community team and counsellors visited the family 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, the family stayed in a 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.
“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.”
Bluebell Wood offers a wide range of support services, including end of life treatment and care, music therapy, counselling, sibling support groups, home visits and more. Its motto is ‘living with love and laughter.’