Monthly Archives: October 2012

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

Do They Know It’s Christmas

You know how it goes – there’s that nip in the air, the roaring fires and shorter days. Christmas carols echo through the house and the dulcet tones of Do They Know It’s Christmas can be heard reverberating from the shower.

I have one problem with this picture. It’s that The Girl and I live in the southern hemisphere and all of the above transpires in July. That’s right, I’m being hounded about Christmas in July. Why?

Let me tell you.

So I’ve made it all the way through to October. I finally put up our Christmas tree last weekend. According to some in our house, it’s at least three months late but it’s a month earlier than normal. I tell people that we love Christmas. Well, who doesn’t? I tell people that I put the tree up early because we want to make the most of Christmas. But that leads to a problem.

Having the tree up for three out of the twelve months of the year takes its toll. The fake branches are a little misshapen from being shoved in that box every year and the polyester needles are showing signs of fading. Well, what do you expect in midsummer? The thing is right next to the window in full sun. Most of our decorations have gone from jolly red to a pale putrid pink. As for the candy canes, well, they wound up sticky enough to hang on the tree without help and I had to toss them last year.

So this year, I decided to buy a new tree. Yes, it’s still a fake one. But now there’s talk of ‘tips’. If you’re in the market for a new Christmas tree, you better get the lingo right. The better trees have at least a thousand tips, Darling. Oh, yes, Sweetie, you can’t possibly have a tree with less than a thousand ‘tips’, could you? I mean, more is more, isn’t it, Darling?

And so, after much nagging, some grizzling and an enduring level of whine from The Girl, I began the hunt. Unfortunately, the retail stores in New Zealand are not as onto it as we are. They don’t revel in the glory that is Christmas. They don’t rejoice in the festive season and break out the excessive merriment – at least not in July, August or September, they don’t.

October? Whoa! Different ballgame altogether!

Now there are trees and decorations spilling from every store. There are lights and baubles and trinkets and glitter for all. All at ridiculous prices, of course.

I found my new tree in a hobby store for $79. It was such a bargain that I actually covered it when I had to leave it in the back seat of the car while we went to rent the same damned video game we rent every week (sorry, that’s another story), in case someone broke into my car and stole my tree and I had to pay the exorbitant price all the other stores are asking for something almost exactly the same.

So we get the tree home. First thing The Girl says is, “Christmas tree.”

“Alright already, I’m putting the damned thing up!” I tell her  lovingly.

So a thousand tips, eh? Holy moly. The thing comes in three sections. Putting that together takes about a minute and a half. The straightening and positioning of 998 tips (two broke off)  takes at least three hours. Especially when you want to place the baubles in any sort of order. So a thousand ‘tips’. Take my advice. Get a real tree.

And true to every other year we’ve done this, The Girl sat on couch watching me until the last decoration is finally hanging on the tree. I stand back and say, “What do you  think?”

She gives me a filthy look, says , “Presents,” then goes to her room to play the video game.

The presents will come. There’s no point in putting them out until the last minute because they’ll be ripped apart in record time. And the instant that’s over, she’ll start hounding me about her birthday…

…which is in June.

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Absolute Beginners

Thirty-one years ago, the world I lived in was a different place. There was no internet. Computers were the size of small houses, and telephones were all stuck to the wall.

I lived in a small town in the South Island of New Zealand when The Girl came along. Thirty-one years ago withdrawing money from a bank account from any distance required a phone call to your local branch during which the teller would describe, yes describe! your signature. Hilarious but true. Anything other than a local phone call was hideously expensive and going anywhere by plane was a luxury. It was a world away from my family in the North Island.

The Girl made her debut on June 30th  1981 at Dunedin Hospital – a two-hour drive from our home. You’d think such a tiny parcel at 3lb would be a doddle. You’d think she’d pop right into this world like a cork. Not so. When she emerged, The Girl had been packed so tightly for the past nine months, her tiny feet were folded up and pressed so hard into her shins, she had indents where her toes had been.

From the second she arrived, the buzz and the smiles and the flurries of congratulations from the nursing staff were ominously absent. There was no flood of relief, and baby cuddles; no excited phone calls with good news or cigars handed around.

They were replaced by muffled conversations and the chill of concern, and before I even got to see her, The Girl was whisked away and spirited off to an incubator. All they would tell me was that she was tiny and she was going straight to the Special Care Unit. I wanted to see her, to touch her, hold her; to make sure she was okay. I wanted reassurance, an explanation. It never came. Because right then, there wasn’t one.

The first time I saw The Girl, it was through the glass of the incubator. I wish I could say that I loved her immediately, that I saw straight past her differences and that I accepted her along with all her problems.

I didn’t.

What I saw was a strange little person fighting for her life – skinny little limbs, long thin strands of hair, low-set ears, a broad nose. She was missing the bones in the bases of both thumbs; the left one left dangling by only a thread of skin.

Day after day I sat there in front of that incubator, staring at her, willing her to be beautiful, willing her to be the perfect child I’d been expecting. I thought maybe, just maybe if I stared long enough, compared her to the other babies, examined her closely enough; that if I asked the right questions, made the right noises, then eventually, I would see what I hadn’t been seeing; that everything would be okay and that I was worrying for nothing.

I stayed in the hospital for a week. I had two visitors. Well, three if you include the young intern who drew the short straw to give me the pep talk. Let me tell you, if he was the designated Cheer Squad, somebody on the admin staff really needed to revisit their job description or maybe just check the roster. He came into my hospital room, introduced himself, then sat on the end of the bed, and after about six of the longest, most silent minutes of my life, he said, “Have you got any questions?”

Any Questions? Are you kidding?

I had sixteen zillion questions. I had questions that he probably wouldn’t have thought of. I wanted to know, What the hell is wrong with my baby? I wanted to ask, Why did this happen! How it happened? Whose fault was this? Did I do something wrong? And that was only the warm up lap!

Once my mind got off the Ferris Wheel of confusion and slid back into gear, I said, “So what’s going to happen?”

He looked mournfully across at me, shrugged, and said, “I don’t know,” then went back to looking like he wanted to vanish in a puff of smoke. Looking back, I often wonder whether I didn’t ask the obvious questions at the time because I didn’t want to know the answers, or because I did know the answers and didn’t want to hear them.

Eventually, he got up and said, “If you’ve got any more questions, just call.” And he left like his heels were on fire.

So that was it. That was the counselling session. But it was free!

For the whole of the following week I was exhausted. My nerves felt like I’d been electrified because a constant buzz ran through me like a radio channel that wasn’t quite on the station. I couldn’t eat, I couldn’t sleep. The whole time, I felt as though something had become lodged in my chest and I could barely breathe.

But through all the hopelessness and the disappointment and the horror, was a driving, overwhelming need to stay with this girl, to make a place for this tiny person – to make everything okay. I didn’t know how, or what it would take. Nature is a wonderful thing. You only have to be a parent to understand that.

I eventually got past the sizzled nerves and the brick in the chest, just in time to slide into the Anger stage of the cycle. I’ll go into more of that later.

Finding acceptance and happiness took the best part of twenty-two years. Could I have shortcut the process? I’m absolutely sure I could have. But, that’s what this blog is about.

But for now, do me a favour. If you know someone out there whose life had been turned upside down by the birth of a child less perfect; or whose life has been frighteningly and irreparably changed through accident or illness or any of the traumatic events that can touch and change the course of our lives in an instant, here’s my advice – don’t tell them it could be worse. Don’t tell them God chose them for this burden. Don’t tell them you understand how they feel and it’ll get better. And please don’t try to convince them this is some kind of master plan – even if that’s what you believe.

Tell them you’re there for them. Hold them close and tell them they’re not alone – that there’s a world of wonderful people out there who really do care, and even though you cannot imagine what they’re going through, tell them it’s okay to be angry; it’s okay to be frightened, it’s okay to grieve. Tell them that, yes, life is friggin’ unfair sometimes and no, it shouldn’t be this way.

Then tell them you know of at least one person who has stood in their shoes, who felt that despair, who knows that pain.

And tell them I got through it.

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Maybe I’m Crazy

I consider myself a little atypical of my demographic. Being the parent of an obviously disabled child can do that. When you’re walking through the local video store and little kids are so transfixed on us they walk into fixtures, you know you stand out. But here’s the thing:

I accept that I’m atypical. I accept that we’re different.

I wrote a book called THE CANDIDATE’S DAUGHTER which is about a woman who has fought for six years against being the parent of a disabled child. It’s about her journey to overcome – not her child’s disabilities – but her own.

Of course, writing is something I get a lot of pleasure out of…okay, there’s heartache, self-doubt, frustration and a few other things writers would relate to, along the way.

So in between times, I read and I garden. I’ll go into my other pursuits a little later. I don’t want to lose you this soon, right?

So, no weirdness thus far, correct? No crazies lurking in this blog, agree? But wait, there’s more…

At the tender age of 56, I play Xbox. I’ve played for years. And no, I don’t play The Sims, and build sweet families and dinky little towns. I don’t spend time constructing an alter-ego on the internet so I can live vicariously through some made-up reality. I go straight for the throat. I play hack and slash role-playing-games like Assassin’s Creed, Fallout 3 and Dead Island. I learned pretty damn quick how to shoot on Left 4 Dead because if you don’t, ten zillion zombies burst from the darkened bushes and take you down with all those ghastly gnawing sounds. I’ve played all the Tomb Raiders, the Bioshocks (except the latest), and at the moment I’m hacking my way through the dungeons of hell as one of the riders of the apocalypse. I’m a pretty credible gamer, even if I say so myself. None my friends play these games.

Neither do they watch anime. I don’t watch heaps of anime. A lot of it involves clothes inexplicably exploding off the characters and you find the storyline meandering down the shady paths of soft porn…but I digress.  (Bear with me, you’ll see where I’m going with this.)

I’ve followed an anime series called Naruto from the beginning. It’s about an orphaned boy whose dream is to become a great ninja, and eventually, the hokage (or leader) of the village.

The thing is, I was recently reminded of an episode of Naruto that ran a while back, in which he comes face-to-face with his worst enemy to date – himself. His dark self. Dark Naruto naturally has equal skill, equal abilities, equal training – I mean, he’s a clone! Except dark. And to make matters worse, Good Naruto, must overcome Dark Naruto, without killing him. Whoa!

There’s fighting and fortunately a lack of explosive clothing, until finally, the two Naruto’s come face-to-face – a stand-off, one each side of a mystical waterfall. Tension builds. You’re just wondering how the heck Good Naruto will ever get out of this, when suddenly, Dark Naruto bursts from the flow of water, his black eyes boring into his target. He hurtles forth intent in all his evilness on destruction and mayhem. But in a flash, the Good Naruto responds. He reaches out, grasps his enemy, and draws him into a loving embrace. For some moments he holds Dark Naruto close, loving him, forgiving him, accepting him, and all at once, a whole Naruto is formed.

So here’s the long-winded point I’m driving at – embrace your strange. Clasp your inner-weird to your breast. Rejoice in your atypical-ness. You’re the only you you’ll ever have.

Learn to love it.

Oh, and while you’re here, there’s a follow button somewhere on this page. Please hit it. We’d love to have you along.

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So Baby, Talk To Me…

I mentioned earlier that The Girl communicates her wishes clearly and concisely. You just have to know the rules. There are three forms of speech that she uses:

Most common are the two to five word sentences she uses to convey what she wants, or what she feels. “Sore tummy, sore feet, broken leg…”  Or you can have a conversation by asking simple questions. Although, you have to know where you’re going with it. Take this morning. This was how our conversation ran:

Me: “Do you know who’s coming for dinner tonight?”

“…”

“It’s Unc…”

“..cle…”

Smiling and nodding encouragement. “Plunk…?” Still nodding, still smiling.

The Girl’s expression is deadpan. It’s not Christmas. What’s to be excited about?  “..kle.”

“That’s right. Uncle Plunkle is coming.” (That’s my brother, by the way) “And do you know what we’re having for dinner?” I point to thawing mince.

“Presents.”

“No.”

“Christmas.”

“No. Christmas isn’t here yet. What are we going to eat?” Pointing to the mince again.

“Roast pork.”

“No.”

“Roast lamb.”

“Damn. Why did I start this?”

“Presents.”

“I think we’ll clean up here, shall we?”

Then, there’s the second category of communication. This is where she repeats statements that she’s heard. It can be interesting. You find out a lot of what happens when you’re not around. Like when she used to come home from school with sentences like, “Stop spitting, Tony,” and “Stevie, stop throwing chairs.” I made a mental note to up my donation to the school that year. These learned sentences can be anywhere between two and five words long, and note, I call them learned sentences and not learned responses. Because this girl does not ad lib. Her words come out exactly – and I mean exactly, the way she heard them. And most have been learned from reliable and reputable resources. Like episodes of the Smurfs. Or Finding Nemo. So when I’m pushing her through the local mall in her wheelchair at approximately Mach 2, with her shrieking, “Help! Help! It’s a giant,” that’s when I know it’s time to change the DVD in her room.

The third category is where you really need to understand the rules – the question-styled statements. For example, if she comes to me and says, “Are you tired?” I know she’s tired and wants to go to bed. If she comes to me and says, “Where’s your crayons?” I know that either they’ve rolled under the bed, or she’s eaten them in record time again and she expects me to buy more. Pfft! People who don’t understand these rules find conversations with her short and frequently confusing, and both parties are left feeling somewhat short-changed.

And although I normally encourage all forms of communication, this category has been known to backfire. Like what happens when you’re sitting in a crowded doctor’s waiting room and the girl has an onset of loud and explosive gas. It reverberates around the entire room causing eyes in the room to shift furtively our way, followed by a few giggles. And it’s at this point that The Girl looks up at me and, in smooth, unfaltering words, says, “Was that you?”

Let me just say that no matter what you say, no matter how hard you try to explain, you’re doomed. You’re better just to sit there quietly, keep your eyes on your magazine and wait for the moment to pass. It always does.

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I Got You, Babe…

Me and The GirlI gave this a lot of thought and eventually, I came to the conclusion that to achieve my aims with this blog, I’m going to have to share some information about The Girl. That way I thought you’d get to know us better, right?

I am painfully aware that she should have her privacy. That’s why I refer to her as, The Girl. But seriously. If I adhered strictly to the privacy protocols of our fair land, the only information I could post here would be: “We are both alive.” And then I’m not so sure I could use the ‘we.’

So here are some things I thought might help you understand our situation – if you’re interested. The girl is 31 years old. She was 3lb when she was born. She has a ring number one chromosome. That’s where the top and bottom of the chromosome have been knocked off, and they formed a circle. Sounds happy, doesn’t it? Well, according to the research on the 6 reported cases I found, all ring number one chromosome kids are happy. And I guess if you’re going to have just one attribute, that’s a pretty good one to have.

She’s small in stature (around 3ft 6”) and somewhere between moderately and severely intellectually handicapped. I don’t usually use the word ‘disabled’, but it’s one most people understand. If there’s anyone enabled in the art of getting what they want, it’s her.

Like many with severe genetic disorders, she has secondary ailments and problems. She was also born without the bones at the bases of both thumbs, so no opposable thumbs. Does that mean she cannot pick things up? The hell it does. You’d be surprised what she can pick up.  She chops things with scissors, opens childproof containers and tears things apart with frightening speed and precision.

In her short life she’s had pneumonia, meningitis (That was a surprise!), dislocated hips, nose bleeds (After several quarterisation’s I discovered they were caused by infected sinuses), ear infections and more.

In later life she’s developed type 2 diabetes (two insulin injections a day), high blood pressure, high cholesterol, cirrhosis of the liver resulting in oesophageal varices which caused internal bleeding last year, and, also a result of the diabetes, cataracts. Over time, her joints are becoming stiffer and she’s slowing down.  She does have almost perfect teeth.

Me? I’m 56, on no meds, have a few twinges. Somehow it doesn’t seem fair.

And communication? I’ll go into that in a later blog. Her communication consists of learned sentences – which makes for some interesting conversations. She’s never been known to string more than five words together. Can she communicate? Oh, yes. You just have to know the rules.

So now I’ve probably breached every privacy law in the land, I feel I can move ahead.

Next post, I’ll talk about communication. That’ll be interesting. Join me.

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First Steps

Two years ago I wrote a book called THE CANDIDATE’S DAUGHTER. It’s not published yet. I’ll let you know when it is.

THE CANDIDATE’S DAUGHTER, oddly enough, is not about a candidate…or even his daughter…well, maybe it is, in a small way. It’s about a mother who’s never come to terms with her six-year-old disabled child, and when that child is kidnapped, she’s forced to face up to her failures, find forgiveness for herself, and discover the mother/daughter relationship she’s been missing with her child.

This happens over a twenty-four hour period. My own transition from grief-stricken mother to accepting-and-loving-although-occasionally-tearing-hair-out mother didn’t occur quite so rapidly. Or as smoothly.

I spent a good while cycling through the Denial, Anger, Bargaining, Depression stages of Mr. Kubler-Ross’s five stages of grief, before finally striking, and embracing, the Acceptance part. And when I rather flipantly throw in that, ‘a good while’, I’m talking something like twenty-four years stuck in the spin cycle. It’s not a great place to be.

There are times I still don’t get it right. There are times when I look at my life and think, “Am I nuts?” There are times when other people look me and think, “Are you nuts?” but that’s usually for different reasons. People think I’m a saint. People think I have a heart of gold. They’re wrong. I’m mostly like everybody else. I struggle.

So this is why the blog. I learnt a lot of stuff along the way. I learnt how to look at life a little differently. I learnt that other people’s lives aren’t necessarily better than mine just because their thirty-one-year-old is a surgeon and mine is still eating crayons. I learnt that not every bridge has to be crossed at a run. And I learnt, the hard way, that there really is life beyond having a disabled child, and finally, I learnt that yes, happiness is optional. If there’s one person out there that can take something good from this, then my work here is done.

I plan to post here regularly. I won’t be sharing anything personal about my daughter. That’s not my right. She’s a person in her own right. In my blogs, she’ll be known henceforeth, as “the girl”. But I’ll share some of the frustrations, the highlights, the eccentricities and the joys of being the sole carer and mother of a severly disabled girl.

And I hope you’ll join me every now and then.

Thanks for reading.

Bless.

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