WOW!
One of the most poignant and 'special' books I've read in a very long time.
I was passed this book by a PA/Carer of my son's who knew of Jonathan Bryan from a teacher who knew him.
I started the book in earnest and literally read the whole book in a few hours ... only taking stock to give my tear ducts a break and to let my emotions settle.
As a mother of a young man with profound medical and complex special needs, a wheelchair user and someone who is pre-verbal ... the one thing that I took away from this book was guilt.
I love my son, unconditionally, he is now my life's work and to say we've been through a lot is an understatement. The first half of the book could have been written by me, so many similarities, so many hospital visits and 'near death experiences' and shall we say 'new starts!' Every time my son had a big upheaval in his health, spent any time away from school, or in hospital, it meant/means retracing his steps, re-learning some simple skills and re-building all the securities that are lost.
My son is nearing his 18th birthday ... yet at 5 years old was pretty much 'written off!' Your son's understanding is minimal, he will never speak, 'he has the mental age of a 9-12 month old infant' are the words that resonate again and again... but, as his mother and the one that spends the most time in his company, caring, feeding, nursing, educating and loving him with every fibre of my being, I know that there is more going on inside his head than anyone gives him credit for. He knows things - the smirks, the knowing smiles, the tell tale side-glances, and being in his constant presence tell me that.
My biggest fear, my biggest regret and my biggest question is why hasn't my son been given the same opportunities, and is it now too late?
Jonathan has overcome such a huge obstacle in his path and as a mother of a son with special needs, I am so ridiculously proud of what he has achieved and the questions he has posed ... but there is also, I cannot lie, a hint of underlying jealousy - that I'm hoping will spur me on to seek out and to challenge what indeed resides inside my own son's head. If I can ever manage to unlock even a hint of what he wants me to know then I am most definitely winning.
For me this book is not over. Thank you Jonathan, for opening my eyes, my heart and unleashing a ferocity of 'questions' that only a special needs mother will fight tooth and nail to get answered.