It was our first family holiday after a time
when we thought we'd never have a holiday again.
In fact it was our first family holiday
shortly after a time when we thought we'd never be happy again.
It took some persuading to make us go.
We were scared, really scared.
We'd been told our son would die in childhood.
At one point he wasn't expected to make his second birthday.
And when things started to get better we were
too scared to believe it lest the walls came crashing back down.
We'd been living on a knife edge for so long.
We recognised the overwhelming need to make
happy family memories but were terrified of the consequences of our ‘risky’
actions. We were torn between wanting to make every moment count and the fear
of something catastrophic happening while we were away from home.
But our
wonderful palliative care nurse coaxed and persuaded. The charity React provided us
with a lovely little caravan by the sea. We went prepared with notes and
documents and back up plans; details of local hospitals and ambulance response
times, a car packed with life saving medicine and medical equipment.
That holiday was magical; a week in Wales by
the sea. The sun shone every day; there
wasn’t a single cloud in the sky.
We laughed, we played, we relaxed, we had
fun.
We made memories we can cherish forever.
#momentscount
This post has been written to mark Children’s
Hospice Week (11-17th May) in conjunctions with the charity Together for Short Lives. This year’s theme is
about ‘Making Every Moment Count’ focusing on how precious time is for families
by capturing moments in time.
Facts about hospice care & life limited children:
·
Most
children need round the clock care – 24 hours a day, seven days a week
·
Families
need support so they can make the most of every moment together
·
There are
53 children’s hospice services in the UK providing a lifeline for families
·
Children’s
hospices are bright and happy places focussing on helping families make the
most of every moment
·
Children’s
hospices are all charities that rely on public support
Our local hospice has been a huge source of support
for us. You can find out more about Acorns
and the work they do here: Acorns Children's Hospice.
Get involved:
You too can take part. A social media campaign will
run throughout the week encouraging people to share the moments that matter to
them by posting pictures, videos and comments on Twitter and Facebook, using #momentscount. Your
moment could be a wedding, a celebration, a party, with friends and family
or a career highlight... anything that captures a moment in your life that
you would like to share.
So come on – share some of your precious moments
using #momentscount too.
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