Category Archives: Learning to Love a Disabled Child

The early days of my journey with a disabled child

Beautiful Girl, What Would I Do Without You?

My Beautiful GirlThree short days ago, my beautiful Girl was rushed into the Emergency Room. The short story goes that her blood pressure was down, her blood sugars crashed, and her pulse was squiching along at half its normal pace. It turns out she had pneumonia. Today she’s sitting up in a hospital bed watching Pokemon and demanding Christmas be brought forward. She’s stunned the medical staff and her estimated date of discharge has been set at either Monday or Tuesday.

With the benefit of hindsight, none of this shocks me. Yes, I’m amazed we still have her. Especially after the events of the last few days. But this girl has more lives than a bagful of cats. And that’s given me pause to think about some of the things I love about her.

Her Appreciation for the Arts: Some years ago, I took her to the Disney on Ice production of Beauty and the Beast. The skater in that Mickey Mouse costume may well have been slated for his lacklustre performance on the night, but for at least one small member of the audience, his stumble and subsequent face-plant on the ice was the highlight of the evening and will be forever remembered with much amusement.

Loud Running: For a Girl with no appreciation for time constraints, there are so many attention-grabbers that can hold you up. Like Walking-While-Cuddling-Dead-Cat, Heading-For-the-Bathroom-While-Inspecting-CD’s, or the equally freeze-you-in-your-tracks Going-Out-to-the-Car-While-Checking-Contents-of-Lunchbox. When she was more mobile, I countered this lack of urgency with Loud Running. It was achieved by shouting, “Loud Running” and The Girl instantly increased her pace while yelling at the top of her voice. It was a one-time offer that remained in effect for a maximum of five seconds, but the results were instantaneous. I swear, magic could not have achieved the same results. I wish I had household cleaners that worked that well.

Her Cultural Awareness: I’m proud and amazed that my Girl can recite an entire Maori Haka, or war chant. Despite the fact that I find the phrase, “Yowdie Yowdies” in the second stanza highly questionable, I know that she’s picked up enough of the language that native speakers actually recognize it. Like the lovely Maori taxi driver who wheeled her up to the door and told me in astonishment, “She can speak Maori.”
“Yes, I know,” I told him. “I bloody wish she could speak English.”

Her Perennial Optimism: The world must be a wonderful place when you’re constantly looking forward to something. Birthdays and Christmas rotate on an annual basis. You just get one out of the way, and the other automatically slots into place.

Her Ability to Prioritize the Important Things In Life: Presents, mashed potato, art class, cheese and onion sandwiches, Playstation, lemonade, going to the video store. What more could a person possibly need?

I love that her view of life is so simplistic. She knows what she likes, and her expectations are few. She’s brave, she’s funny and she has no preconceived ideas about people. Until they go up against her in a battle of wills, and she loses.

If you take her as you find her, you’ll find a true friend. You bump heads with her, she’ll remember it for life and howl every time she sees you. And she’s taught me more in our thirty-two years than I could have found in any number of books.

But that brings me to an issue that many don’t think about – or maybe don’t need/want to think about. In this age of technological advances, as society strives evermore toward beauty, intelligence, and perfection in our future generations; and parents not only have the option to choose their baby’s sex, but now have the option to eliminate offspring with inherited illness and genetic defects, what happens to those children of the future born with disabilities? As we move forward, congratulating ourselves on our ability to weed out the ‘damaged,’ what happens when a section of our society is diminishing?

Will society become less tolerant; less accepting? Believe me, it’s only a scratch below the surface. I spoke to a woman only yesterday whose daughter has five children. For some reason I can’t even begin to comprehend, the general public feel it’s their right to pass judgement on her – to make comment on her choices. She said people will actually approach and ask her if she knows what contraception is; or whether she knows that population levels are already too high. I know what she means. If you’ve read my blog, “Moments I’m Not Proud Of,” you’ll see that I’ve had my own fair share.

And if this is the reaction to a large family, what will the reaction be to the parent who chooses to bring a child less perfect into the world? That they’re stupid? Selfish perhaps?

This is not a rant extolling the virtues of abortion over pro-life, or vice versa. And, I understand that with the advances in medical screening it’s now possible to detect illnesses that no parent would wish upon their child. And that given the choice, many would opt to terminate rather than inflict a future of pain and physical torment on their child.

But what if I’d made the choice not to have my girl; if I’d taken that other road in which she wasn’t a part of my life? Sure, there have been times I wouldn’t wish my lot on my own worst enemy. Of late, I look around and I wouldn’t exchange it for the world. If I didn’t have my Girl, would I be the person I am now? Would I have learnt the lessons I have? Strived to be as accepting as I am now?

And how much would I have missed?

I’m just saying…

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People Are Strange

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.

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Filed under Learning to Love a Disabled Child, The Joy of Living With a Disabled Child