Adam and Isla’s story

Adam was born at 32 weeks, and was starved of oxygen at birth. He spent 13 weeks in intensive care, and during the first two years of his life went through lots of surgery and hospital admissions. Mum and dad, Kerry and Karl, tell his story:

“When Adam was born we knew he would have some problems; he never learnt to feed from a bottle, never rolled over, and couldn’t sit or control his head.  After his birth he was in and out of hospital and he had to be resuscitated several times,” explained his mum, Kerry.

Adam has quadriplegic cerebral palsy, chronic lung disease and uncontrolled epilepsy.  He has lots of seizures and severe reflux, which means he has to be fed directly into his stomach. As Adam has grown, his condition has worsened, as his chest and lungs are damaged due to the amount of chest infections he has endured.

The family first came to Bluebell Wood when Adam was six, and his little sister, Isla, was a baby.  Adam visits Bluebell Wood for respite, often with his parents, Kerry and Karl. Adam enjoys arts and crafts, going in the Jacuzzi, music therapy and trips into the garden.

Kerry said: “At first, we didn’t know what to expect. Passing your child over to someone else to care for is daunting at first.

“We’ve been coming to Bluebell Wood now for several years and it really feels like we’re part of the family.”

“Now Isla’s at school, she sees that other children get to go on days out, to the cinema, or to the beach.

“It’s really hard to do those sort of trips out with Adam’s needs – it’s impossible to take a wheelchair onto sand!

“We took Isla on a day trip to Cleethorpes recently while Adam was looked after at Bluebell Wood – it rained all day but Isla loved it.”

Kerry said she can feel guilty that she doesn’t spend enough time with Isla, but then also feels guilty about being Adam’s nurse, rather than his mum. She said:

“Last night at Bluebell Wood, I just sat and cuddled Adam.

“Usually I live my life round time; what time he has his medicine, or his hospital appointments. For someone else to get his drugs ready, means I can relax and get to do the nice Mummy bits rather than the nursing bits.”

Kerry also finds it really helpful and supportive to speak with other Bluebell Wood families experiencing similar emotions.

“You sometimes feel very isolated at home, so meeting other families at the hospice reassures us. Bluebell Wood is a support network; we really feel like we belong.

“Thank you so much to all the people who fundraise for Bluebell Wood.  Without them it wouldn’t be possible for families like us to have these experiences.”