24 Aug 2018
I like to think of books like meals.
There is the ‘McDonald’s book’. It looks so enticing and you devour it in seconds, only to wonder if you’ve read anything of actual substance.
There’s your ‘meat and two veg book’. It does the job. It fills you up without being spectacular.
Then there’s the ‘gourmet meal book’. It may not even be a lot on the plate, but every mouthful is succulent, every taste explosive, and each moment a glimpse of eternity.
This book is one of those ‘gourmet meal books’. It is not often that I read a book that makes me laugh and cry in equal measure. Even less often do I read a book that is written by a boy who is just 12 years old. And even less often… hang on… never, by a boy who writes using his eyes.
Yes, you read that correctly. Jonathan Bryan has severe cerebral palsy, making him incapable of voluntary movement and speech, so he writes with his eyes. This book is the remarkable story of how that came about. From a boy labeled ‘PMLD’ (Profound and Multiple Learning Difficulties) to an unlocked poet full of wit and pathos. Read his “Hope in illness, part 2”:
Life’s light illuminated
Stable rock, steadfast ground
Voice of peace, nourished in sound
Strong arms enfold, solid hope renewed
Anticipation of Home revived by love imbued
This book is an insight into a boy locked in. Unable to communicate using traditional means, he was trapped. So much going on inside, but no way to express it - for 9 years. I can’t imagine being silent for a day, let alone 9 years. The frustration is palpable in his poetry:
Numbness making sensory dead!
Inhibiting freedom, fearing change,
Sanity seeping sadly down,
Shutters closing, everyday night.
I have worked as a musician in Special Educational Needs settings and seen the problems facing the institutions seeking to help these young people. Lack of funding and resources mean the one-to-one time needed to unlock children like Jonathan is just not there. Thankfully I had already started to engage with Jonathan and his story (they are family friends of my older brother) and this helped me see the potential in these children and begin to show what might be possible. And that’s precisely what this book does. It helps us to understand how the awesome image of God can still be seen in each and every child.
Jonathan is a passionate advocate for other children having the same opportunities as him, being unlocked to express what is hidden inside. He’s met with MPs and Princes. He’s been on TV and set up a charity. At the age of 12, I was still playing with model aeroplanes! The recognition that his time is short in these shadowlands has prompted him to work hard for others: Any parent who wants help walking their child through illness, suffering or death would be helped by this book. He wants the world to know what is there, hidden beneath the surface. Rather than PMLD he prefers the label ALD - Access to Learning Difficulties. You will never look at a child like Jonathan in the same way again. And that can only be a good thing.
Jonathan is a funny boy. He’s full of love and generosity. He has phenomenal perseverance and strength of character and all at such a young age. However, what is even more wonderful about this book is that it is the grace of God that shines through. Jonathan has a deep faith in Jesus and sense of heaven (or ‘Jesus’ garden' as he describes it). His desire to be with his King seeps through the pages. You can almost touch eternity with him.
Jon-Jon! Jon-Jon! Turning ten
In the presence of young men,
What enormous love and joy
Could gift the mighty faithful boy?
Why the sorrow? Why the pain?
Will we celebrate again?
And when earthly time has passed.
What beauty lies? What peace at last?
Any reader should expect to be crying at some point in this book. Whether you read this on your own, with your child or you give it to your nine year old (or older) to read for themselves, keep the tissues to hand. You’ll journey with the family as they battle through dark times, riding the waves of suffering. You’ll walk with Jonathan as he comes close to the very gates of heaven. Together you’ll sit and marvel at the beautiful things of creation afresh and take hope in the promise of a better world to come.
Review written by: Michael Tinker
Michael Tinker is a song writer, performer, actor and author. He can currently be seen touring his Christian family show, “Michael and the Topsy Turvy Kingdom” which accompanies his latest children’s album. Click here to read our review of it!