Williams Syndrome Turning 40?

Funny things started to happen to me soon after I turned 40, big life-changing things. I began to consider changing careers. I started to develop entrepreneurial ideas for the first time in my life! I bought a sailing dinghy. Did my friends think I was having a mid-life crisis or a revival? My mum got sick, and she died. I don’t think these events were particularly connected but each in their own way, they certainly contributed to times of big change!

For 8 years I learned new skills like building a successful business and developed new hobbies, exciting times for new adventures. Life was good.

But I also knew there was a time I would be called to walk a path I had not chosen. I did not choose this way of life, it chose me but I walked the path willingly if in some ignorance of the price I would be called to pay. I don’t know why I was chosen for this task, to care for Linda – for it feels like a vocation, a calling and one I am hardly worthy of. How do you suddenly learn to care for another life, one so vulnerable, so simple, so full of joy and occasionally of pain.

When my Dad also died I knew I was going to be the one who would look after Linda. All her life Linda was different and she has recently been diagnosed with Williams Syndrome. Now we know, her disability – and her remarkable abilities – have a name. Linda, as is typical of many Williams Syndrome adults, sees the world very simply. For the most part it is wonderful, kind and loving. Occasionally it is terrible.

For Linda, one of the Williams Syndrome symptoms is always true – the world is musical. Her great gift is her musicality and her voice. Not that her voice alone is of outstanding quality but she can pretty much memorise a tune at one hearing and reproduce it. She can intuitively add in harmonies and confidently hold a different tune – once she figures out that she’s meant to be singing something different to the melody. And of course, she knows no fear of hitting the wrong note!

Her life also changed just after turning 40… she came to live with me and Beth after losing her Dad. Will she also have other mid-life events? How will she put them into context? And what about her health, her future development? What should I expect her to do??

I guess there are few answers beyond “Wait and see.” Even as I search the internet there are few contributions from carers of Williams Syndrome adults so not much to go on – If you are reading this and have some thoughts to share, please do get in touch!