Sylvia's gift

I’ve just returned from my run. It’s so tough to get out on that pavement every morning. The slightest excuse delays me, and not much needs to happen for me to cancel. But as soon as I hit my pace, my thoughts connect and I disappear into another world. My brain is so focused, it’s like I lock into my mainframe. My mind becomes clear, true feelings pop up to greet me, problems become more resolvable and the shackles of stress slightly ease.

There have been times when I just couldn’t face running, the thoughts I had were way too painful. To connect to my mainframe was the last thing I could cope with. A few months ago I lost my mum. She died of cancer of the oesophagus, a long, slow death over a period of a year. It was horribly painful, cruel and savage. She told me she ‘never knew there was so much pain in the world’. On the last day of her life she turned to me and held my gaze saying,
‘My love, get a gun and shoot me’. I knew then that it was over.

For that final year of her life I didn’t pay very much attention to Down’s syndrome. My mum and her impending death was my only thought, my only focus. I had always imagined the shock of having Max and trying to cope with his DS would be the hardest thing I’d ever have to deal with in my life. I was wrong. The agonies regarding Max, I’ve had to face along the way, don’t come close to the profound sadness of losing my mum.

When she first passed away I felt completely numb, and to be honest very relieved. To see someone you adore suffer so much pain is brutal. Then for a while my logical brain kicked in and told me that everyone must die. It’s part of the human condition. I needed to accept it, and get on with my life. Now, I just miss her massively.

My Dad says we now exist in two worlds side by side. The old world which contains my mum, all the memories of her and the life we all led together, and then our new world, the one without her. He say’s that they run parallel, side by side, overlapping on the oddest, surprising occasions. It’s true and for me, this new world has a strong urgency about it. My mum’s death has taught me the fragility of life, that we are mortal, each and every one of us. Time is precious. I’m going to treasure that lesson, consider it her gift to me. It would have been her birthday today. Happy birthday mum.

So my thoughts of DS are back, big time. The Down’s Syndrome Association published the minutes of their AGM this week. Some very disturbing facts have emerged. Of all the calls they receive to their help lines each day, 80% of them are about adults with DS. Not babies and young people as you might imagine. No, the calls are about adults living in miserable isolation ‘within the community’. This obsession to ‘normalise’ everyone, to ‘be as one group,’ whilst politically popular, is not such a great way of thinking for some individuals. This political jargon masks the money saving determination which is swamping our culture. As you read this, valuable and essential, residential facilities are being forced to close, placing vulnerable people in situations they are ill equipment to cope with, leading to the deterioration of their mental health and quality of life. Frightening and bleak, but no surprise.

For a long time I’ve known the only way to safeguard my son Max’s future is to provide it myself. For Max, I know he would like to live within a vibrant community. He would soon fail to function properly if he was hidden away living alone in a flat, with little opportunity of accessing the outside world, or relying heavily on others to bridge the gap and bring the world to him. I dread to think of the consequences, should such a fragile framework erode or breakdown.

That’s why I’m going to set up a charity. The guiding principle of this charity is to create a home for life. A thriving supportive community where everyone finds personal, independent fulfilment. It’s going to take millions. That’s a massive mountain to climb. I gasp at the magnitude of what I’m planning. It wakes me up at 3am in the morning and the figures spin around in my head and I panic. But then my thoughts quickly turn to my mum as they always do, and I remember her gift and I think, can I do it? Yes, I can.