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.
