By Jesse’s mum, Becky
My son Jesse was diagnosed at 2 days old with a complex heart condition. It’s hard to convey just how terrifying having a child with a serious illness can be. Fighting for their life, the waiting and the unknowing … It’s an exhausting and lonely place at times. you live in fight or flight mode most of the time and being hypervigilant long term can weigh heavy and I have since been diagnosed with PTSD.
We were referred to the trust just shortly after my son had his first heart operation. He’s had 5 in total now with 2 major open heart surgeries but his condition is complex and requires a life time of medicines, surgeries and monitoring along with many other complications ( I think maybe 30 different health professionals have been involved in Jesse’s care )
I was nervous at first of coming to Sebastian’s Action Trust. I was aware of the charity having previously volunteered in their gardens and planted trees in their memorial gardens a few years earlier. Never in a million years did I think when I became a mum would I end up coming back as a supported family. In a way I think I thought of this as the end, but I was so very wrong it was just the beginning, the beginning of something wonderful.
Sebastian’s Action Trust has become almost like an extended family to me. The staff are so welcoming, nothing is ever too much for them, and they genuinely care about the wellbeing of each of the family members.
I would describe The Bluebells as my safe space. Its a place free from judgement, a haven (and a hot cup of tea or a hug) to combat the high level of anxiety we can find ourselves in as medical parents.
It’s a community of families, who know the challenges of having a child, with complicated illness, a lifeline of knowledge and empowerment! It’s help to navigate through difficult appointments and often over coming and rallying to fight for the care of your child.
For my children it’s excitement, it’s happiness, its friendships, it’s their childhood!! They don’t know any different!! The bluebells protects them, away from the poking and prodding of medical examinations, or the parents going missing for hospital stays, and all the grown up medical language that hospitals bring. Instead it provides fun, joy and laughter.
Whether that’s a fart machine gun from house keeper Laura ( oh the endless laughs ) … or the encouragement for dare devil bike stunts ( whilst I close my eyes with dread !!) or running round in the garden through fountains of water and water pistols ! Or sneaking biscuits from the biscuit tin, forgetting all your worries in the pool, or being mindful in the music room. It might be getting messy with paint, or building skills with Lego, or relaxing in the sensory room…. it’s going on Holiday for a special sleep over in the apartment, making movie nights in the theatre, and endless hide and seek but in a safe environment. It’s hunting eggs at Easter, carving pumpkins at Halloween, it’s sneaking in a quick health treatment and me time whilst you know your kids are having the time of their life with the bluebells staff.
It’s a happy place to build everlasting memories. A chance for our children to be what they deserve to be …. children.
The challenges these children face in life are tough. Tougher than we as parents can even imagine. The things they see, and hear, the pain, they don’t deserve it. That’s why the services provided by Sebastian’s action trust are invaluable to the families …
From sensory experiences, to help development , or celebrating Christmas in July during very uncertain times, even flying in planes to give incredible life experiences … Sebastian’s action trust has been amazing at providing such wonderful opportunities.
This has been amazing to provide Jesse with some normality, but also great support for his sister Harriet, as many of the siblings supported by the trust often watch huge levels of trauma and disruption to normality, and day to day life is just very complicated ! So the Bluebells has been a great place to provide respite for the whole family, and also to make new friends too.
Our world is often a scary place, but I’m so grateful we have the Bluebells to lighten that load and keep us smiling.
This week it was lovely to attend for some much needed time out together. Il always be grateful for everything the trust does for us. Thank you to all the amazing volunteers and sponsors who make Sebastian’s action trust a true life line.