Every family is unique and every family situation is different.
There is no definitive right way or wrong way to go on this journey however we know from what families tell us, that amidst the often challenging times, the love and pride they feel for their child is what keeps them going.
Many parents tell us that the first time it is suggested that their child should use children’s hospice service, is a very difficult moment. It is not what any parent wants for their child and the word ‘hospice’ evokes many negative emotions. Often people will see hospice as merely a place to die, and that it would be a sad, dark and depressing place. However once parents come to hospice or meet staff for the first time, their opinions are often changed and they understand that this is the right service to support their child and their wider family.
"It’s good to talk. Everyone thinks that Children’s Hospice is not for us, not the place to go but that first time we walked through the door we said why weren't we here a long, long time ago." - Kevin Jones
Kevin talks about his daughter Jordan and how Children’s Hospice supported her and their family. He also reflects on his feelings when it was first suggested to him that Jordan could use Children’s Hospice services:
Throughout their child’s journey, parents will experience many changes and often they are required to take on more responsibility for the clinical care of their child and to develop new skills. Children’s Hospice staff are skilled in both training and building confidence within families.
"We couldn't have asked for much more. Children’s Hospice built up our confidence; they did it slowly and at our pace. We’ve nothing but positive thoughts about Children’s Hospice" - Reilly Family
Jolene and Keith reflect on the care they received at Children’s Hospice when their baby, Bethany, was very ill and wasn’t expected to survive: ‘
Sadly baby Bethany has since passed away. However, her family still want her story to be heard.
Children’s palliative care is different to palliative care for adults. Many children will require care for months and years. Children’s Hospice recognizes this and our focus, as well as clinically supporting the child, is to support the parents through their journey, however long that may be.
"At the time I didn't think this was the place for Aisling because she was still well but I look forward to it now. The staff are almost like family. Its peace of mind that all the medical staff are there if you need them. Children’s Hospice is like your home." - Peter Hawkins
Peter talks about his daughter Aisling and their journey as a family with Children’s Hospice. In particular Peter reflects on the time that Aisling was believed to be very close to the end of her life and went to Children’s Hospice for end of life care
Some conditions can affect more than one child in a family. This brings a further level of complexity for parents. Sara Coates shares her experience of creating normality, when both her children have a life limiting condition.
"Creating normality, whatever normality is, when their hearts are breaking because they feel different’’ - Sara
Sarah is Mum to two children, Noah and Gracie, both of whom use Children’s Hospice services. In the video she talks about the challenge of ‘creating normality when both your children have a life limiting condition’.
Caring for a child with a life limited or life threatening condition can at times be a lonely journey. At Children’s Hospice we recognize this and therefore we reach out to support both the child and the wider family.
"You can be out with other people and still feel lonely but it’s different in Children’s Hospice. Everyone understands." - Anna
Anna is Mum to three children. Her daughter, Connie, uses Children’s Hospice services. In this short video Anna talks about the support she gets through Children’s Hospice and the friendships she has made with other parents.