Events this week has reminded us all how life can change in a minute. The tragedy in Manchester has shattered the hearts and lives of so many families. For 49,000 families in the UK, we know the reality of a life defining moment. Our children have a life-limiting diagnosis and so we have experienced first hand that instant when everything changes; perspective, expectations and dreams.
This week is Children’s Hospice Week (22-28th May 2017) organised by Together for Short Lives. Last year they were ‘Putting Family’s first‘ and this year they’re asking everyone to turn up the volume on children’s palliative care.
But why do we need to #upthevolume?
Here are 5 reasons why we need to turn up the volume
1 To be louder than the background noise
There are so many good causes. So many challenges, conditions and charities. Sometimes you need to be a little louder to be heard above the rest. So, for just one week, we need to turn up the volume on children’s palliative care #upthevolume
We need to share our stories. To tell about the lives that have been touched by loving children with a life-limiting condition. We must explain the impact of living life, so close to death. And inform others about the people and service that improve our lives when we need it most.
2 Some things are hard to hear
My son’s hearing varies greatly depending on whether I’m asking him to do his maths homework or if he wants pudding.
It isn’t easy hearing about life-limiting conditions in children. Hearing about heartbreak and unexpected journeys is difficult. It’s easier, nicer, to have selective hearing but sometimes we need to hear the hard parts of life too. Because hard isn’t bad and there is so much to learn. There is so much beauty amidst the challenges. So, when it’s hard to hear, we have to turn #upthevolume
3 Your song comes on the radio
Sometimes we’re in the car and Adele’s ‘Hello’ has us howling in unison. Or Up Town Funk causes wheels to spin and some kitchen moves to break out.
One minute dinner is being cooked and the next, a tune catalyses the whole family into a jiving horde because this is our song and it needs to be on full blast.
*Cute alert, E singing ‘Hello’ soprano up front and S the tenor behind.
Well, for families like mine hospice care is part of our groove. We didn’t want it to be but there you go – that’s how it is. It’s part of our family’s rhythm, the melody of our lives, so we’re going to crank it up this hospice week and #upthevolume.
4 Something important needs to be said
Often, it’s the intense, important conversations in films that I miss.
The music fades, atmosphere stills and voices dim. I find myself inching to the edge of my seat, not wanting to miss a word. I don’t want to miss the critical conversation. I want hear the vital words important to this story.
We need to listen to families’ voices. When a powerful message is being communicated, we need to turn up the volume #upthevolume.
5 More people need to hear
And sometimes the most basic reason for turning up the volume is because we just want more people to hear. More people need to understand the challenges and triumphs of families who love children with life-limiting conditions. More people deserve to hear how invaluable palliative care is, and how dependent it is on financial support. More people would benefit to hear the stories of families like mine, the path we tread and the network of people needed to support us.
All this week we will be hearing the heartbreaking stories of families who have lost their loved ones in the most sudden and shaking manner. For those families, life will never be the same again. For us who love children with a life-limiting condition we also need to take the time to share our stories and those of other families. Tell the tales that lie behind Facebook and Twitter. The stories that hold deeper truths, of the joys and challenges of living this particular kind of life.
It’s serious, it’s tender, it’s vulnerable and you’ll need to #upthevolume
If you want to know more about families of children with complex needs, one of the groups who use hospice care, you can read my memoir, The Skies I’m Under.
Slip off your shoes for a moment and try on mine for size.
You might be surprised to find out what it’s really like. All of our stories are different but the emotions entwined within them are the same. And with love, courage and hope, from brokenness, exceptional beauty can be found.
And this Children’s Hospice Week, you can #upthevolume by changing your profile picture with this Twibbon, share this blog, tweet #upthevolume, watch this message from HRH Duchess of Cambridge or visit Together for Short Lives website and find out more.