An incredibly important week to bring attention and awareness to the vital role that hospices have in caring for medically complex children, and their families.
As a supported family by Shooting Star Children’s Hospice, I can say from personal experience that the support and care provided to children and the families caring for them is both unique and necessary. The holistic care given from the start of a child’s life limiting illness through to the end of a child’s life, and afterwards with bereavement support is so needed.
No one ever wants or expects to have a child with an illness that requires round the clock care, a child that they know will die one day. Having the support of a children’s hospice like Shooting Star hospice is a lifeline for families as they navigate the most challenging times of their lives.
The holistic care covers all the medical care needs, and so much more too. Children’s hospices like Shooting Star hospice offer a place to make beautiful memories together as a family; to go swimming (normal pools are usually too cold for medically complex children), to relax in the sensory room with lights and gentle music, to walk in a pretty garden with accessible and interactive fun. They provide respite care (like a fun holiday) so exhausted parents can rest knowing their child is safe. A hospice is often the only place equipped to care for these children safely, and they have a fun time too.
When it comes to the end of a child's life, hospices can offer a quiet place for families to spend the last days with their children. Following that bereavement support for parents, and siblings can be provided.
When my son died my family and I spent almost a week at Shooting Star hospice. Looking back it means so much that we had that time in a quiet haven away from the world, to carve every part of our boy into our hearts and minds. While we did that, we had the wonderful care of the team at hospice. Every need we had was met, no request was too much. All the staff were caring, patient and sensitive.
In the years that followed the hospice was a grounding force for my family. I was given over three years of bereavement support that was truly life saving for me, helping me find my way in the darkest times after my son died. The hospice was the only place that gave my older son the support he needed. So often siblings are the forgotten mourners, but not at Shooting Star Children’s hospice. Charlie received one to one counselling, group counselling and he also enjoyed Sibling Activity Fun Days. This support was essential for him helping him understand and express his feelings, it was the place his grief was understood. When I felt worried about Charlie I could talk to his counsellor and receive the help I needed to be able to support him too.
We were always so well cared for as a family by the counsellors at the hospice.
In gratitude, and to continue to support the incredible work the hospice does - all the profits from my children’s book ‘Ruairí’s Rocket to heaven’ go to Shooting Star Hospice.
Photos; My son at a year old
My son’s Memory Star in the hospice garden
The Tranquil suite garden at the hospice where families stay after their child dies