Oh No Big Trouble!

I feel a bit out of sorts I tell Mom when we chat on the phone, it’s because I am increasing my epilepsy drugs. It’s always tough for the first few weeks

I don’t know how you cope with it all she replies…

Because I would rather be here, have a life and these symptoms, than not be here at all I chirpily tell her…

And I mean it. When ill health gate crashed my life and death stood at the end of my hospital bed I realised I wanted to live whatever the cost. As I recovered I swore I would make the most of what I was given.

Now like a child in a sweet shop I sample everything I fancy. When I got my first taste of the Voices Together Choir last December my heart pumped out pure joy. I had found a place where I could sing out emotion in words. A room full of warm smiling faces has now become a room full of warm smiling friends.

One of those friends is Julie who has her own story to tell. We have smiled and shed tears together as the parallel paths of our completely different journeys shine their lights on us…

When Julie shared a book with me in which she has written a chapter about her twin daughters Josephine and Francesca, I settled down one afternoon with a cup of tea…

As each story of children with life limiting conditions unfold, I read of struggles larger than most of us will ever encounter. The tug of war Mums and Dads endure to get the right care, information, equipment and support for their child. And for themselves. Parents tell of fast track training in complex medical and nursing skills and of outings which resemble a hospital on wheels… But sooner or later grief weaves its way into their days, weeks and years…

But the pages are also full of a rainbow attitude to life. Stories of wonderful adventures make me smile as I turn each page. Tales of chocolate, jam sandwiches and cake loved by cheeky and lively children as they live hectic and happy days.  Lives full of giggles, trips to the seaside and Disney films. Lives revolving around the gift of beautiful children…

In their early years, Francesca and Josephine, with their dark hazelnut hair, were bundles of boundless energy. Mischievous Josephine’s giggle and cries of Oh no big trouble had them all grinning. While Francesca’s intense gaze made people feel she could see into their soul…

The girls changed our lives Julie often tells me and who knows where they will lead us in the future…

If you read this book you will find that the stories have one thing in common, the discovery that all we can ever be sure about is the moment we are living…Now. This minute…

I had never heard of Little Bridge House (a Children’s Hospice in Devon) or Jessie May (a Children’s Hospice at home in Bristol) until I met Julie and read the book. The proceeds from Lives Worth Living go to these two incredible charities which cradled these families and children as they helped to make their short lives worth living.

You can purchase the book directly from Southgate publishers by clicking here… Or if you are lucky enough to know Julie then ask her to sell you one…