I’ve been thinking a lot recently about the value of Rufus in the eyes of society.
In my eyes, his value is inestimable, I mean, he’s my son… It’s a no-brainer. I just have these little moments when I have a sneaky look into the made-up future I’ve created for him and see Rufus as a child, a teenager and a man and I just feel sad. Not because of how I will look at him, but because of how I think the world will look at him. Maybe because there’s a small part of me who, in the past, looked at older people with special needs like Rufus and just didn’t get it. Until now.
Let me explain. Anyone who has had children has hoped that they’ll go to school, learn, achieve and succeed, fly the nest and prove their worth or value in society by bringing something to the table. That ‘something’ could be as simple as being a good person and role model to others, volunteering for a worthwhile cause, having a steady job, being a parent, writing a book, being creative, being clever, earning tons of money, teaching… any kind of useful contribution just as long as it’s something that adds to society.
Anything that brings something to the table.
Because we all know someone who has an opinion about those who take from the table.
Those who drain our resources.
Those who don’t help themselves.
Those who don’t do anything useful.
Those for whom we pay taxes so they can sit about having a jolly old time.
Those who we have to look after for that bit longer than we think is right or necessary.
And I worry that, because Rufus won’t be able to bring anything like that to the table, no-one will see how valuable he really is. Every bit of me wants to tell everyone I meet just how great he is, what he can do, how he makes me feel, what he teaches me every day about love, how he challenges me and is making me into a better person. I mean, I write a blog about him. That’s how ace I think he is. Betsy doesn’t get a blog about her. Of course I love them in equal measures but the difference is, she can show the world just how great she is. I don’t have to worry about her. She’ll walk into a room and make people like her and notice her and recognise her qualities because she has a voice and she has an incredible, loveable personality and she’ll go places. She’ll bring something to the table. That, I’m pretty sure of.
Rufus doesn’t have a voice. Yet.
Rufus can’t walk into a room. Yet.
But when he does, what will they think of the voice and the man that they see and hear?
I worry that people will look at him and feel sorry. Feel sad. Feel, ultimately, that something is missing. Something is lacking. Something went badly wrong.
I believe that God made Rufus exactly how he wanted him to be. I don’t think God made a mistake. I don’t think God was working on the chromosomes bit and got distracted, looked away for a second and then, whoops, missed out a whopping great chunk of Chromosome 15 then realised it was too late but thought, oh well, he’ll get by. I think God left it out on purpose. I know there are people who’ll disagree with me, who’ll have different viewpoints on all of this but, hey, we’ll find out one day so let’s not get hung up on it now. Anyway, the point is, I believe that Rufus was born with Angelman Syndrome so that he could bring something a bit different to the table. If you’re in ‘the village’ then you’ll know what I mean. Your eyes are open to Rufus. Okay, so he won’t get a job, be a dad, earn loads of money etc etc etc. Society won’t look at him and say ‘Thank you, we couldn’t have managed without you.’ He will require a lot of people to just get by each day and I guess some people may see that as a drain on resources, not helping himself, sitting back and having a jolly old time, expecting others to help him. How is that valuable? How is that worthwhile?
Exactly what does Rufus bring to the table? Well, I hope that, in spending time with him, with us as a family, by reading my blog, you will begin to realise the same inestimable value I have found in him. For me, personally, Rufus flipped the table upside down the day he was diagnosed. The table is irrelevant. The table is too small. We’re feasting on the floor now. Feasting on these values: joy, happiness, love, family, trust, silliness, friendship, cuddles, sloppy kisses, hope, excitement, togetherness. Before Rufus came along I had never experienced those ‘values’ (let’s call them) so fiercely and unconditionally and the great thing is, he spreads them wherever he goes. He locks eyes with the most depressed-looking individual in a supermarket and gives them the most beautiful, heart-warming, ear-to-ear grin (because he thinks they’re a friend). He finds himself next to a complete random in a crowd and reaches out with both arms to cuddle them (because there’s no doubt in his mind that everyone is on his side). He is in my arms in a queue and puts his hand on the back of the person in front and gently touches them (because touch is his way of saying hello). He creates the most brilliant awkward moments for me with complete strangers and always brings an extra dollop of love to absolutely anyone, just when it’s needed.
And I’m pretty certain that’s exactly why he’s here.