A few weeks ago we went to a fundraiser. It was a black tie event to raise money for the family of an old colleague of the old man’s whose son broke his neck and damaged his spinal cord in a freak rugby accident recently.
Alex Noble is their son’s name, and if anyone feels like funding a real cause, as opposed to other, less noble causes, please feel free – here is the link to his GoFundMe page.
At one point in the evening, Alex’s parents stood up on stage to tell us a little about his story, his progress, and their plans for the future – should they reach their target that night to secure the funds they need to renovate their house, meaning he can eventually come home.
“There’s not a lot of joy in my life right now, but there’s a lot of love,’ his mother said.
It was a comment that hit me hard, because albeit that in terms of bums on seats that night, there was a wonderful level of support in the room, as a mum who is also a part-time carer of an adult dependent, (as well as being a professional cynic), I did wonder how many guests would be there for the long-haul of Alex’s journey, once the glitter is swept away.
Many of the guests were close friends of the couple or friends of their son, so in some ways it felt almost voyeuristic to be there, to witness the pain and rawness caused by such a cruel twist of fate; to sense the fears that his family feel in terms of the uncertainty of Alex’s and their future.
When we plan our children, we never anticipate for one moment that things won’t work out like the parenting manuals told us they will, so I understand what Alex’s Mum was trying to say. I’ve felt that way many times with Kurt – because let’s not underestimate the devastation caused by mental illness or disability, either. Indeed, it was only a week before that I thought that we had lost our son?
Scratch the surface and there is heartache in every family. I can’t tell you the number of times people open up to me about siblings or relatives with mental health issues who have been hidden, the skeletons in their cupboards.
But Alex’s Mum was right about how adversity cultivates love. Because in return for the pain caused by our son’s neuro-diversity, we have been given an education in love, compassion and empathy, and we are better people for that. We are as proud of him as we are of NC – much to her horror. While his steps forward have been slower, they have been celebrated with the same enthusiasm as hers, and his progress has provided us with an invaluable insight into how society should be measuring success.
Admittedly, there have been times when there’s not been a lot of joy in caring for someone who may never get better, and I wouldn’t wish our experience or that of Alex and his parents on anyone. Before his accident, they would have been looking forward to the last chapter of their lives as independent once again, but the ramifications of his physical disability may be lifelong, and they will affect not only them, but his siblings, and possibly future generations of their family.
I’m glad that they feel loved and supported. I hate cliches, but shit like this does make you stronger, because you have no choice but to be strong. But as I said, there are hidden benefits to life’s knocks such as this. While they will have to reset their expectations of Alex, his milestones will be as meaningful as those of his siblings – if not more so. And though it may feel painful at the time, this tragedy will draw a line in the sand between their true friends and their fair weather friends, because they won’t have time for games.
But they will be tired all of the time and there will be days when they feel like they can’t go on and will question why me? So I suppose what I really want to say to all those parents battling through each day with kids with disabilities or dependencies, is that your joy may well be diminished, but like a flower in summer, your heart will be opened to maximum capacity.