THE BLOG

Children's Hospice Week 23-29 May 2016

24/05/2016 09:49

Being allowed to stay at a Children's Hospice, is one of those things no-one wants to be eligible for. There are lots of these 'clubs'. Small groups of people that deep down we don't want to be like or don't want our life to be like. Being good British folk, we try not to talk about these awkward aspects of life in polite company.

BUT Together for Short Lives, a charity that supports families like mine is pioneering Children's Hospice Week and it's theme #puttingfamiliesfirst

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So, here is a short extract from my book, 'The Skies I'm Under' where I mention my love-hate relationship with Children's Hospice Care.

"We began to take respite as a family at the local children's hospice, where nurses provided Sam's care. Over a twenty-four hour period, four to five nurses were required to give the care I gave every day.

It was a relief when someone else was responsible for Sam, although I struggled when I felt they didn't do it correctly. The food was great, the bed comfortable, and we had space in the day to relax and do fun things with Sam and Jonah.

But guess what, I hated it.

Although I appreciated all the care, it was in a hospice.

hospice |ˈhɒspɪs| noun

a home providing care for the sick or terminally ill

The only place I could get enough support to provide a break for my family was where children go to die. The only reason we were eligible was because Sam had a life limiting condition; he isn't expected to grow up.

One evening we were sitting at dinner when an ambulance turned up with a couple and their newborn baby. The baby had only a few hours to live and the couple chose to walk around the gardens with their precious child, squeezing the essence out of every minute they had left.

As I sat finishing my meal, I looked across at Sam wondering how life would end for him. I looked at Jonah and thought about how I might explain his brother had died. In the weeks before, we had begun making plans for what would happen in the event of Sam's death. I had met with the community palliative care nurse and discussed what would be the procedure if Sam had a fatal fit at home.

I looked out the window of the hospice and couldn't imagine the grief-stricken path that this young couple were embarking on, when my thoughts were interrupted by someone asking me if I wanted ice cream for pudding.

Death and ice cream.

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At a hospice, they live comfortably side-by-side and as much as the respite was a relief, the reality that Sam is not expected to live to adulthood was heartbreaking. I found it hard resting at the hospice and the frequent cancellations reduced the respite it provided. Life without respite, however, was long and arduous."

The book isn't all doom and gloom. It's much more about life taking an unexpected turn and leading you down a difficult but, at times, truly remarkable and beautiful path.

You can buy 'The Skies I'm Under' from The Skies I'm Under website or Amazon.

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