This has to be my favourite photo of 2019. It's a picture of my wife looking happy, in a cafe next to the ocean close to where we live. It's a very special photo because of what has come before it, and where we are now.
Nearly eleven years ago we experienced a life-transforming event. Our two daughters, then aged 10 and 13 became very ill following an infection. The symptoms were complex but one primary factor was severe, often acute, pain. Neurological problems are another. There are more. Until then they had lived a normal childhood.
Over the years their condition has gradually deteriorated, despite the best efforts of medical professionals, who remain unable to make a definitive diagnosis of cause or conditions. As their care needs increased my wife found it necessary to leave her academic studies - she was obtaining qualifications to become a clinical psychologist - and I had to leave my career of over 30 years, in order to care for them. We now care for them in overlapping shifts 24/7.
Not all days are bad. Sometimes one daughter or the other is well enough to get out of the house with us for short excursions to the shops or a cafe. Perhaps once every two weeks my eldest is able to ride her beloved motorcycle. Often she will ring me to collect her because she is in too much pain to ride the bike home, even if only 10 minutes away.
Both girls were too ill to finish high school. Prior to their illness both were academically bright students. They had high ambitions. Both now suffer memory and learning problems to the extent that it is unlikely they will be able to study again. Of course, we live in hope. But our hearts are filled with sadness. Our daughters missed out on a normal school experience and adolescence, and now they are missing out on life itself.
We are both emotionally and physically exhausted but my wife much more so than me, as she is the one our girls call out for in the night to comfort them and help manage their pain.
There have been no holidays or weekends off these past 10 years. Our only respite together is a short break at one of the local cafes once a day, where we can relax over a coffee for a quarter hour or so. Weather permitting we ride my Vespa, which gives a feeling of freedom.
This picture was taken at the Bower cafe at Manly beach, less than 10 minutes from our house. It's a special place right on the water front. There are usually people and dogs and children everywhere and it's a happy place to be.
It is not often that I see a real, relaxed happy smile on my wife, so this is a picture I treasure.
