Carolyn Voisey's avatar

by Carolyn Voisey

I’d planned on writing about the difficult in searching for Christmas presents suitable for kids with disabilities, but life has a habit of changing your view of what matters. 

This week two dear friends are facing every parent’s worst nightmare, as their little boy is moved to our children’s hospice for end of life care.

The end can’t be far away, and although we’ve known for many many months that his condition was life-limiting, it doesn’t make it any less of a shock or any less painful when that time approaches.

We first met little Harry as a tiny baby, not long out of the NICU, on a family fun day arranged by the PMG family support charity. He was so, so beautiful, with his tiny elven features, perfect blond hair, and eyes that looked into your very soul!

As time moved on and new diagnoses were added to the mix, it became obvious that Harry was a precious child who would not be blessed with a long life.

I held my own boy a bit closer than usual last night.

Thank God for our childrens hospice.

It doesn’t look much from the outside; nothing special, just a modern building with lovely gardens at the front. But it really is a Haven for families at the very worst times of their lives – the staff are angels on Earth, nothing is ever too much trouble and they’re always there ready with a shoulder to cry on or arms to hold you up when your own legs fail.

I know that gorgeous little Harry will be very well cared for there, and that his whole family will be given the love and support they need.

And when the end comes, they won’t be alone unless they want to be. And on that day, a wooden windchime will be hung by the entrance door to the hospice… gently singing in the breeze and letting visitors know that a bereaved family are in residence; as a mark of respect and honour to the little life now run its course.

I can’t believe I’m even writing this down.

I think we all dare to believe that the Dr’s are wrong, that the problems can be cured.

It’s against the natural order, a child passing away before his/her parents.

Our children teach us much, my special little man has made me the person I am and I have to say I like me a lot more now since he’s done some work on my beliefs, skillset and attitudes!

No-one ever leaves our lives the same as they were before they came into them, we are forever changed by our love for these amazing kids.

So thank you, Harry, for everything you’ve given to everyone who knows you.

Life is far too precious and short to be wasted 

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