When Beverly thinks of her daughter Jalene at Christmas, it’s of her smiles in a room filled with balloons, squealing and laughing at all the colours and textures.
Jalene was full of sparkle. She had an amazing smile and an infectious giggle. Although life caring for her profoundly disabled child was hard, when Jalene looked up and smiled at Beverly, she knew every battle and every struggle was worth it.
“I had the chance to live with this amazing person.”
Jalene’s care regime was very intensive. She required round-the-clock support, including special feeds, physio, and what was basically intensive care unit level support at home. On top of that, Beverly also had to maintain the equipment, manage doctors appointments, arrange nurses to come in… is it any wonder that sometimes Beverly was so focused on the day-to-day work of keeping Jalene healthy and alive, that she felt she’d become more like Jalene’s nurse than her mum?
Together for Short Lives helps to change that. We give parents like Beverly the space and time to be mummy, not just a carer.
“I’m not in any of the photos with Jalene. But then I realised, when she’s smiling up at the camera, it’s me she is smiling at.”
One of those big smile moments was the day Jalene met Father Christmas at the children’s hospital. As soon as he walked into the room, Jalene couldn’t stop grinning. She followed him around everywhere he went, and when he said “ho ho ho” to her, she twinkled right back at him.
Jalene’s condition had left her partially-sighted. But at Christmas time, she loved to see all the sparkling lights that lit up the family Christmas tree and the local town. Every year they had together, Beverly took Jalene to see the Christmas displays sparkling in the December dark.
Jalene loved Tinkerbell and everything to do with fairytales. She had the sparkle and twinkles of her favourite fairy story characters. So when it was sadly time to say goodbye to Jalene, Beverly told her little girls that she was going to join her friends Tinkerbell up in the sky.
“She was a little fairy and she’s just gone home to Tinkerbell. She’s having fun and games, playing on the beach and swimming with dolphins.”
After Jalene died, Beverly started volunteering with Together for Short Lives. The teams there helped her to grieve so she could remember the magical and sparkling times with Jalene and the precious memories they made together. Being part of the Together for Short Lives community also helped Beverly to meet other parents who had faced similar losses – including parents who felt that same fear that they had been a carer to their child, not mum or dad.
“Together for Short Lives helped me tremendously.”
This Christmas, as Beverly remembers Jalene twinkling at the lights and squealing at the balloons, will you send in a special donation so another family of a seriously ill child can get the care and support they need to be parents, not carers? Your gift today will help them focus on being a family and making precious memories that last a lifetime. Your donation will also mean that a family grieving the loss of their child won’t have to struggle on alone.