After an unusual night’s sleep with no monitor I bounced out of bed early and sped off to Alton Towers to collect Tilly from her CAST sleepover. My mission was to pack up Tilly’s things whilst she was having breakfast and generally help out with the morning routines. Upon arrival everything was magically done – equipment dismantled and put away, case packed, Tilly dressed in school uniform and breakfast sorted. Sue helped me load the car and Tilly waved a cheery goodbye to her room-mate and the nurses.
On the journey to school Tilly told me every detail of her most amazing overnight stay. The van was filled stories of Santa’s grotto; presents, hot chocolate; dressing up for dinner; disco dancing; entertainment; party games, Christmas crackers; high jinks at bedtime, but most of all, an overwhelming sense of camaraderie and achievement that could only be shared with such an inspirational group.
These wonderful youngsters are incredibly challenged, some needing help to take their very next breath, yet with the vision of the Children’s and Airways Team, they have had the opportunity to experience this independent adventure. It must have been an interesting time for Tilly to be among other children needing as much, if not more, care than her. It must have been an unusual feeling for Tilly not to have the focus of all activities based around her needs. The outcomes of this magical trip are probably endless; the most outstanding of all, is that Tilly had fun and can’t wait for the next one!
Rolf, however, is not so sure and is still ecovering from Tilly’s nightstop. He requested the monitor be turned up full blast last night so that he could drop off to Tilly’s rhythmic breathing on her ventilator. Daddy’s little girl was home and Daddy was pleased. I just know that my Dad would have been the same.