The song above is one of Emily's favourites. It details sadness but also optimism and it's been on my mind for several weeks now. Mostly it makes me think of the day Emily left and how that time, one of the most difficult and painful we ever lived through, has turned around now so positively and in ways I couldn't possibly have envisaged. She's thriving, she's achieving and she's embracing her life so completely that I smile every time I think about it.
It gives me hope that singing a new song can be positive.
Both of my children have enormous courage a trait that they inherited directly from my Mum along with her stoicism.
This month I’m going to be 48. It’s not an age traditionally deemed to be a landmark birthday like others I could name, but won’t because they are so far away it makes me depressed, but for me this birthday carries it’s own significance because of the age my mum was when she was diagnosed with Alzheimer’s.
She was 68, twenty years older than I am about to be and it makes you think. Well it’s made me think anyway.
The last twenty years of my life I’ve spent I hope, both well and productively.
Not in terms of building a CV and a glittering career, no 'I’ll give you that son', but in caring for and loving the people who through no fault of their own needed caring for and who it was an absolute delight to love.
It hasn’t always been easy and it hasn’t always been difficult. It’s just been my life and the planet is mostly populated by people like me who are neither remarkable nor high achievers, just people pottering around occasionally bumping into challenges and getting on with them.
Anyway….My point is what to do with the next two decades.
My girls are now getting on with their lives and this is so delightful to me in a way that all parents will recognise but only parents of children with disabilities will understand.
In 2012 I was lucky enough to interview Warwick Davis and Baroness Tanni Grey Thompson for the Guardian and they both had the same gift in life. Brilliant parents, who raised their children to know, not just to believe, that their lives were theirs for the taking.
This is an ideal for all parents of disabled children to aspire to. I’m not suggesting that all disabled people can be a gold medal winning paralympian, or a famous actor, a notion which is deluded at best and frankly dangerous at worst; as it offers a notion of equality of ability which we know isn’t always the case.
I’m just saying that letting your disabled children go, after you’ve equipped them with a belief in themselves as individuals is crucial, irrespective of ability. We all need to nurture and promote our children’s self-esteem.
For me the fear of Alzheimer’s is one which walks beside me but one which I can’t look in the face all of the time.
There’s just no point. This, as yet, incurable and devastating disease will make its arrival known, if it chooses, or it may pass me by entirely; either way it’s not my decision.
It would be a kind world indeed if worrying about potential events stopped them in their tracks.
As I move into the next two decades, if of course I’m lucky enough to realise them, I’m going to try and do so with hope and with optimism, because I choose to.
Cynicism is an easy blanket to cover ourselves with and we do live in cynical days. I’m not exactly sure why, but possibly because we have in the main achieved and evolved so much with the staples of life so readily at our disposal that we have the time to question everything and to be guarded about being fooled.
This is healthy in respect of those who govern and inform us, but it can seep through into our dealings with one another and this lack of compassion and empathy, this fear of kindness and this austerity fuelled disinterest in vulnerability, is not healthy at all; to us as a collective, or to us as individuals.
I still hope and I still dream and I’ll still fume and I’ll still believe. I may be an old bird who is about to become older, but I think I’ve been lucky because my life has been shaped by love.
Not a CV plus in terms of career I grant you but I don’t have a single regret and I wouldn’t change a thing.