One such story, shared by Together for Short Lives via social media today, is Tallulah’s story:
Mum Keely and dad Curtis had just 19 days with their baby daughter Tallulah but their local children’s hospice EACH helped them capture precious family moments.
When Tallulah was born doctors found that she had suffered a cerebral infarction resulting in severe brain damage.
Keely remembers: “It is the hardest day to look back on, trying to read between the lines and moving so quickly between hope, despair and distress at seeing all the tubes and wires. That evening our world collapsed completely around us, when the doctors told us there was nothing they could do for Tallulah. We were in complete shock.”
The family moved from the hospital to EACH in Milton, not knowing how long Tallulah would survive or what to expect.
It was a great relief to receive support and gentle guidance at the hospice. Keely says: “I remember a feeling of being able to breathe out for the first time in days. Every member of staff made us feel that we were not facing this alone.”
The whole family, including grandparents, were also able to spend time together at the hospice, which was especially comforting for Tallulah’s two-year-old brother Teddy.
Special family moments were also created when the staff arranged for Santa to visit Tallulah and Teddy at the hospice and the family had a Christmas tree to decorate and lights to put up. Keely says: “The four of us would lie under those lights at night cuddled together – these are memories that we will have forever.”
Remembering their time together is now helping the family as they receive bereavement support from the hospice.
Curtis says: “The memory making, which staff at EACH encouraged us to do, gave us irreplaceable keepsakes that continue to comfort us even now and showed us a means of expressing our love for Tallulah.”
This week, national charity Together for Short Lives and hospices up and down the country are sharing stories and memorable moments to let the world know how hospices and palliative care services help children and families make the most of the time they have together.
Get involved by sharing a memorable moment on social media, using the hashtag #momentscount and follow Together for Short Lives on Twitter and Facebook to see what else is going on during Children’s Hospice Week.