When I started this blog, I wondered who’d be interested. I thought maybe putting this out there was a waste of time because how many parents of disabled children do you see on the TV or whatever, who leave you feeling like they have some incredible gift for patience, compassion and sheer wonderfulness that you can only wonder at?
Me? I think I only got this stuff in tiny, easily-depleted proportions? One minute I don’t know what I’d do without The Girl, two seconds and three rapidly eaten crayons later, I’m wondering how I’ll get through the day.
But, let me tell you. Since I started this thing, I’ve found the most wonderful people out there. People who come out and say, “Hey, I know exactly how you felt because I felt like that, too,” and people who say, “Oh, my God. I’ve been there.”
I wrote a book called THE CANDIDATE’S DAUGHTER in which a mother struggles to come to terms with her disabled child when the child is kidnapped. I’ve used some of my own experiences in the book. While I was writing it, I took The Girl into a video store and a little kid stood there laughing at her and calling his brothers and sister to come “look at the funny lady.” When I told him that that wasn’t a very nice thing to do, his mother launched in and told me, “He’s only four!” In THE CANDIDATE’S DAUGHTER, I use that exact experience and my character responds immediately with the snappy comeback I thought of four hours after the event.
Be careful who you cross – you could wind up in their book!
So I thought I’d talk about some of those ‘other’ people I’ve met over the last thirty-one years – you know the ones – those people who pass us in the street and slip us a backward glance or tell us something that makes us go “???”. The ones that think we’re strange; who stare and think we don’t notice.
Thirty-two years ago, I lived in a small town in the South Island of New Zealand. At the time, I didn’t have a lot of friends. When I had The Girl, the few friends I had dwindled to even fewer. I tell you, that old saying ‘Laugh and the world laughs with you, cry and you blah blah blah’, believe me, it’s true. People who are not your true friends grow tired of your tears. They get sick of your heartache and your misery. They tell you that you have to ‘get on with it’. Then they go back to their own perfect lives and leave you to it.
But in their defence, my friends didn’t simply up and desert me. I lost my friends because frankly, I didn’t want to see their beautiful, fat bouncing babies.Or to hear all about their child’s achievements or to listen to them blabber on about how many milestones their baby was galloping past and how many words their kid could say at the snap of their fingers when all I was trying to do was survive one day at a time. I didn’t want to see their children playing and laughing and being boisterous and growing into young vibrant people when all my girl could do was flop on the floor because she was too weak to sit up. I didn’t want to hear their kids chuckling when all The Girl could do was wail because she was so thin and frail that her fingers swelled in the chill of winter to the point she couldn’t bend them. So those friends? I stopped phoning them and they stopped calling me.
It’s a great way to get a lot of ‘alone time’. Does wonders for massaging the old depression.
I’ve had one person tell me this child of mine should not be allowed to live – that kids like her are a drain on our society. I’ve had specialists tell me that expensive treatments are not extended to the disabled. I’ve had people treat me like there’s something wrong with me; like I somehow brought this on myself. I’ve had people cross the street to avoid me, stare, gape, skirt right around us. And yes, I know they think we’re strange.
I’ll admit, I’m maybe a little weird. If you read my earlier posts, you’ll probably agree. And you know what? I’ve learnt not to care. I’m me; The Girl is her own person. She’s my Girl, my Sunshine, my family. She’s sweet, she’s funny, she doesn’t mince words and I love her for it.
And to those of you who know this life; you who are out there in the trenches with a child the world thinks strange; to those of you who willingly take on and shoulder the burden of Carer; of Parent; of Champion-of-the-Less-than-Perfect; you unsung heroes who battle whatever life throws at you without making an issue of it; who struggle to keep your head above water while everyone else swims past you and still keep swimming because you know it’s what you have to do, know this:
You are my sisters and brothers in arms. You have trained in that same boot-camp I fought my way through. You fight on the frontlines; face the best and the worst the world can throw at you, and you do it with your head held high. You are my comrades, my partisans, my brethren. You have the scars and the badges of courage; the medals for bravery and honour. You have stood against the storm and survived.
You are not the strange. You are the strong and I salute you for it.