Category Archives: The Joy of Living With a Disabled Child

Goodbye, Baby.

Me and The GirlIt’s 4 a.m. I had to write this now.

The absolute worst has happened. I knew it would eventually. Why wasn’t I ready?

After rescuing my Girl from the hospital, I took her  to the hospice. I brought in her nightdresses, her toys, her medications. It gave me time to breathe. And even though this time was officially “respite time,” I visited her regularly. At the end of nine days, she came home.

And things got harder.

Her breathing became laboured. I administered drugs I’m not qualified to administer. I did it under the hospice’s guidance. I contacted them regularly. When her condition deteriorated further still, I knew somewhere down in my heart that this time was different, that our lives were changing forever.

The outcome: I made the painful decision not to intervene in my beautiful Girl’s illness. Wherever her journey was about to take her, I would not stand in her way. What right did I have to continue extending a life of agony, a life filled with procedures and hospitals and pain?

I continued to care for her. I turned her regularly, kept her on a soft diet, kept her as stable as I could. But after only a few days, her condition deteriorated yet again, and after a distressing night, the hospice doctor and my darling nurse Claire came out, and we admitted her to the hospice.

I once promised my Girl that I’d never leave her, that no matter what, she would always come home. Sending her to the hospice felt as though I was betraying her. But standing there right then, what I had committed to in a moment of love, suddenly seemed worse.

The very first time she went into the hospice for respite, I bought her a TV with a DVD player attached. As we said our goodbyes at the end of the visit, she looked up at me, eyes full of wonder, and said, “Nu TV. Thank you nurses.” It was said with such appreciation, that I never altered that belief for her. If she thought the nurses bought her TV’s and DVD’s and whatever, who cared? It made the hospice a wonderful place to visit. Subsequently, with each stay, I’d buy her presents and wrap them up and leave them with the nurses to give to her. I hope she loved them.

This stay was different. It was always going to be different. There were no presents, few Smurf viewings. I played her music, sat by her bedside, talked to her. At the end of my Tuesday vigil, I told the hospice staff I had to leave because I had the dog at home. They told me to bring him in. I did.

The three of us sat for hours each day, listening to music, telling my girl how much I loved her. I did it because I needed to. I did it because I knew that one day soon, I would no longer have that privilege.

On Saturday, I left at  three o’clock. A little earlier than usual. As usual, I kissed my Girl goodbye, I told her that I love her “to bits.” I impressed on her that I’d be there tomorrow, that I’d never leave her. Then I packed my bag, and I left.

Almost the instant I got in the door, the phone rang. The nurses were handing over just minutes after I left, and my Girl had slipped away.

My heart is broken.

I didn’t know what people meant when they say the heart breaks. It feels as though someone has reached in and torn an enormous hole in my chest. It crushes me from the inside. This pain is physical and all-consuming. It’s a pain I wonder if I can bear.

In the past, I’ve suffered panic attacks—waking at night, desperate for time to roll back and let me have even one more moment with her. But this is something else. Over these past two years, and I guess all our lives, we’ve been hurtling towards this enormous moment, a moment that’s stood like some insurmountable wall. We’ve been headed this way, for so long now, that somewhere in my heart, I began to believe we’d never reach it. I began to think this journey, this life, however hard, was meant to just keep going, that I would walk forever with my Girl’s hand in mine.

Now, I’ve crossed that wall, that moment in time, and my Girl has stayed behind, beyond my reach. Her little hand in no longer in mine. I can’t get back over the wall, but I know she’s there, just on the other side, forever caught in the moment that was our lives together.

As I write this, my beautiful Girl is here at home with me. I can look up now and see her beautiful face, the curve of her cheek, the plump of her lips. I’ve had her here for five days. She’s dressed in her best clothes, her hair done, her favourite toys around her. I come into this room to play her music, to talk to her, kiss her, tell her how much I love her. The pain of knowing that today I have to let go is unbearable. I want to gather her up and keep her with me. After today I’ll never be able to hold her, to touch her, to brush her hair from her eyes, to lay my cheek on hers.

I know I’ll always talk to her. I know that wherever she is now, she has no pain, no procedures, no needle pricks, no worries. Her spirit has been freed from a body that bound her to this earth, that served her, but which ultimately let her down. Whereas I want her back with every fibre of my body, I would never want her to experience that pain again. All I can do now is keep our treasured times in my heart, in my memories, and yes, in this blog.

I’ve been the most privileged person I know. I’ve shared in a life that’s been unique, funny, hard, and enormously satisfying. I’ve been granted the opportunity to bathe in her light, to walk in her world, to share in a personality that’s sweet, that’s funny, that’s more loyal than anyone I know. This Girl has taught me lessons that no school, no religious leader could bring. She’s shared her life, her love, and her philosophies with me. I can’t say how honoured I am.

Eventually, I’ll turn this list of blog posts into a book. If it inspires one person to make the difficult journey we have, if it helps one person through the dark days of terminal illness, then our work here is done.

It really is the smallest things that take up the most room in your heart.

I love you, my Darling Vicky Rayner Lea. I love you to bits.

 

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Filed under Coming to the End, Terminal Illness, The Joy of Living With a Disabled Child

The Then and the Now.

Dead Cat

Dead Cat

Some years ago, I had to attend a series of chem. labs to complete the practical requirement of my extramural course: Organic Chemistry:101.

Yes, you read that correctly—Chemistry! Let me tell you, it takes a special kind of stupid to do any kind of Chemistry by correspondence. At the time I was raising two children on my own, working a part-time job, and furthering my education with extramural study in Chemistry, Biology, Maths and Physics. That’s no walk in the park. I look back now and wonder how the hell I ever did it. It just shows that with a good belt of determination, and just the right mix of insanity, you too can engineer your own near-burnout experience.

Fortunately, I still had enough youth on my side to get me through the pain. Unfortunately, that youth didn’t always serve me so well.

So there I was, on campus, living the dream of the returning student, soaking up university life and adding another string to my bow so I could leap up that corporate ladder (to mix metaphors), when one evening, after a particularly gruelling day of labs during which I found myself reaching bare-handed to catch some dripping sulphuric acid so it wouldn’t mark the bench (this was about the time I discovered chemistry wasn’t for me), I was sitting in the common room and enjoying the company of my peers. I have to admit, having left school the nanosecond I turned sixteen, I was somewhat overwhelmed, perhaps even a little intimidated, by the level of academic achievement I’d found myself in—until, that is, the moment when one of these geniuses pipes up and says, “Wanna hear a joke?”

Of course, the immediate response from the entire room is, “Yeah, go on, tell us,” and we all settle in for the impending chuckles.

So he starts, “What do you get when you throw a mental retard into—”

“—excuse me,” I interrupt, hand in the air like a kid in kindergarten, “but I think I should warn you that I have an intellectually handicapped daughter.”

A stinging silence stretches out across the room. The temperature drops a couple of degrees. The atmosphere crackles with discomfort and the almost indiscernible sounds of non-breathing. Sly glances flit around.

Otherwise, nothing—maybe crickets. Even then, I’m not sure.

And the guy continues with the joke.

As the single voice of dissension—I swallow back the lump in my throat and look around at my fellow academics for support. Heads go down. A throat is cleared. A few uncomfortable sideways glances flick my way.

I’m mortified, humiliated. My heart flips into double-time while my face blooms scarlet.

So, you know what I did?

Nothing.

That’s right. I sat there feeling a thousand tiny needles prickling my skin as the pain of fifteen years of battling crappy attitudes and off-colour jokes, and imbeciles who never think comes flooding back to haunt me. I said nothing, did nothing. There might have been a few pitying looks from those in my class. A couple of people might have been going to speak. But they didn’t.

Not one person came to my defence. Tears burned in my lower lids. I blinked them back. I had no intention of giving anyone the satisfaction of seeing me cry.

After a suitable measure of time, people relaxed, the conversation picked up as if nothing had happened, and I scuttled out of there as if I’d done something inexcusable.

I look back now and wonder what the hell was going on in my head. If this happened now, I’d throttle the guy. I’d tell him exactly what I thought of his puerile joke and his twisted sense of humour. Then at the first possible moment, I’d lay a complaint against him with the university. I’d have his sorry ass kicked so hard, he’d have graduated before he came down. He came there to learn—that’s one lesson he’d take away that he hadn’t expected.

Then I’d walk out with my head in the air.

And you know what? I am almost one zillion percent sure that every person in that common room would have told the guy what they thought, and walked with me.

So what’s the difference between between then and now? I could say that maturity has lent a hand—which is probably true.

I could say that I’m no longer intimidated by people with letters after their names and certificates on their walls—which is also true. I could say that I’m not worried what people think, that I accept that I’m weird, and that rather than bother me, I embrace it. Yeah, maybe that’s stretching it.

The truth is these days I have a swagger I didn’t used to have. I wear my role as the nurse, carer, advocate, and mother of a disabled Girl with pride. I have a level of surety about my place in the world that I didn’t have back then. It’s made me care less about what people think, and care more about what I think. But that’s only part of the picture.

It’s not just my own acceptance of what I am or who I am. It’s acceptance that’s come from my relationship with my Girl. It’s a growing acceptance of me and my Girl by our friends, by our acquaintances, by all those we come across in day-to-day life—both online and off; by the community and by society as a whole.
Once upon a time, I felt as though I was defined by my girl; that because she was “broken” that I, by association and by blood, was also looked upon as “broken.”

These days, I see myself quite differently. These days, I’m defined by my girl, but not as a victim. I’m the mother of a disabled young person. I have an enormous responsibility. I have the full responsibility for her life, for her freedom, for her dignity. She cannot control events in her life; she cannot make decisions that affect her life. That’s my job. And hell, hasn’t she got enough battles to fight?

So how did I undergo such a shift—such a mind-flip? How did I go from meek, unassuming broken Me to fist-fighting, desk-pounding, determined-to-make-my-Girl’s-life-the-best-it-can-be Me?

Lemme tell you, it’s taken some time. But I’ve been blessed.

I’ve had (and still have) friends who have trodden these very same boards, and lost their young ones way too soon. I have friends I can call on in moments of terror, or stress, or worry, or horror, or anguish. I’ve chosen my “Warrior Friends” because they’re smart and knowing and wise, but never short of a good bout of outraged indignation on my behalf at the slightest provocation.

I’ve been blessed to know the beautiful young people from my Girl’s program. These are young people society sometimes still sees as the “damaged” and the “broken.” But I’ve seen their strength. I’ve seen their courage and their love. These are young people who have friends, and loves, and lives, and sorrows and everything you and I have (or maybe don’t have). Yes, they’re different. Yes, they have challenges that you and I would crumble under—and yet, these are people who are happy and accepting of things most people wouldn’t put up with in a million years.

I’ve been privileged to know their teachers—people who show the utmost respect for those in their care. They come gladly to work with people who are physically challenged and frail and intellectually different. These teachers look upon their students as friends, as peers, as colleagues. There’s an atmosphere of mutual respect; of love, and determination to make every day count—to share in their joys and their sorrows and their everyday achievements and successes—regardless how small.

I have had the benefit of all these wonderful, fabulous, positive people in my life. I owe them more than they could ever know. And I thank them.

I look back now over my life, and realize without hesitation—that the only person within this post who was ever truly broken …

… was the guy who told that joke.

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Filed under Parentlng alone, The Early Days, The Joy of Living 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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Filed under Learning to Love a Disabled Child, The Joy of Living With a Disabled Child

It’s the Little Things…(Or, First World Traumas)

1970-01-01 13.11.25So we’re currently riding one of the peaks of this rollercoaster ride. The girl is relatively well, her blood sugars within readable limits. I’ve upped her pain medication, so both of us have the chance to breathe. Now I can concentrate on other things in my life. Like writing, publishing my book, THE CANDIDATE’S DAUGHTER, through Amazon and Smashwords. Learning to format and edit to within an inch of my sanity. The mouse.

That’s right – THE MOUSE!

We had mice before. I hate it. They leave little black currents in the cupboards and pile up stashes of dog biscuits behind the fridge. I thought I’d dealt with it. Three weeks ago, the dog chased a mouse into the bathroom. It scaled a towel hanging over the bath and I found a tiny, frightened body hunched into the plug hole. I dealt with it swiftly and surely, then went back to my life.

A short while later, I was pulling into the driveway, and what do I see? A mouse on the grass outside my house. It scampered and scuttled and boinged its way up the grass then headed toward the neighbour’s place. I smiled and drove into the garage. Incredibly, the same thing happened two days later – mouse, scamper, scamper, boing, boing! Except this time to the other neighbour. I’m like, “Wow! How often do you see that?” Ignoring the tiny voice in my head that’s asking exactly how many mice there are that I can’t see.

Next thing I know – yes, we’ve got another mouse. There’s poo in the cupboard and chomping noises emanating from behind the fridge. I pulled out the fridge, gouging the wood floor, and sure enough, dog biscuits. I cleaned them out. And worried.

I told my neighbour I’d have to use poison.

“You cannot poison them,” she said. “It’s cruel. Get a trap. That’s what we did.”

So I go down to Bunnings Hardware Store where the guy in the pest eradication section tells me, “Yes, a trap is the best way. These days they’re so quick, the mouse won’t know what hit it.”

I bring the trap home, test it. The spring is hair-trigger. Hair-trigger! You only need to look at the thing and it snaps shut with the force of a tiny guillotine.

The traps sits on the kitchen counter for almost a week. Finally, after finding mouse crap in the cupboard for the umpteenth time, I know I have to do something. As instructed, I put peanut butter in the little bowl of the trap, pull out the fridge again (gouging the floor in the process), and set the trap.

The next day, I grab the fridge and gently pull it out (scoring the floor yet again). Sure enough, no frikkin’ peanut butter, and the trap is still set.

“Oh, hair-trigger, is it? Traps are best, are they?” I’m muttering as I shove the fridge back in.

Now I don’t know what to do. The peanut butter clearly didn’t work. And now the mouse is skipping across the living room floor going hither and yon while I watch TV. The dog no longer cares. He knows the mouse is smarter, faster – probably stronger than he is. And he hates the dog biscuits anyway.

I leave the trap behind the fridge. I’ve got far more important things to consider. Most pressing of which is that I’ve got my grief counsellor arriving at 9 am. I’m tearing around, dressing and toileting The Girl, trying to do the dishes, and the washing and apply my makeup all at once (and failing miserably), when WHACK!

I look to the fridge. The dog also looks, then scuttles across. Next thing…

SQEEEEEEAKsqueaksqueaksqueak…clatter, clatter…squeeeaksqueaksqueak

“Oh, terrific!”

The squeaking and clattering goes on and on. I latch onto the fridge with a hand either side, and pull it out, gouging the floor for the millionth time and muttering, “It’ll never know what hit it,” in one of those wheedling childish voices. I get the fridge out, and sure enough, sitting there with its spindly little foot stuck in the trap, is the mouse. It’s got fire in its eyes, and its ready for the fight of its life. From the corner of my eye, I see another tiny shape dart out the door. It’s probably a second, opting to live and fight another day.

Friggin hell, how many are there!

The mouse is now leaping and thrashing around and the trap is crashing against the floor, the walls, the fridge, the mouse (although that’s not really making any noise). With all the clattering and squeaking, I can hardly think. I’m standing there with my hands clasped to my chest and my lips sucked in. I have to do something, and I have to do it now.

But what?

I race to the cupboard and get a Tupperware cup…No, too small…a mixing bowl…too wide…a pasta container. Perfect.

The mouse is watching me. It’s eyes are narrowed and its expression is grim, yet determined. In one swift movement, I lunge, scooping up mouse, trap, and a handful of dog biscuits in one go. The mouse leaps and rattles and hops inside the container. With all the urgency of the Westpac Helicopter rescue team, I burst from the back door and run up the back yard to the feijoa tree.

“Quit jumping,” I’m yelling at the thing. When I go to stick my hand in, the mouse leaps at it. “You bite me, it’ll be the last thing you ever do,” I warn it.

Finally, I lift the spring with the tip of my finger and the mouse slithers from the container and into the bushes. Which is where the one from the bathplug went. It’s probably the same bloody mouse. It probably beat me back to the house.

Almost as if the scene has been staged, my grief counsellor arrives. She advises me that opening the door with my hand on my chest and the word, “Tragedy” on my lips possibly isn’t the ideal way to greet a grief counsellor. But she’s a doll and she fully understands.

I wish these damned mice wouldn’t come in. If I thought I could knock them off peacefully, I’d be grinding up handfuls of Valium and leaving out tiny saucers of gin. But they’re not that easily fooled. They’re not about to pack up to move to a nicer neighbourhood. There’s been a population explosion over the summer and there’s approximately sixteen zillion waiting in the wings.

But it’s given me something else to think about. When you live in an isolated world where you expect the worst, any diversion is a blessing. Until more currents appear in the cupboards, that is. Which will probably happen before I’ve finished writing this.

*Sigh*

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Filed under The Joy of Living With a Disabled Child, Uncategorized

Under the Influence

Turn around, Crash, you're going the wrong way!

Turn around, Crash, you’re going the wrong way!

I wrote a book called THE CANDIDATE’S DAUGHTER in which I drew inspiration for one of the characters from Pink – not the color, but the singer. Her music, her look, her gutsy no-nonsense attitude inspired many of the traits of one of the female protagonists.

Not all inspirations are as positive. Or as endearing.

The Girl draws inspiration from her favorite music, movie characters, loved ones and acquaintances. Which can make for some interesting interactions.

According to The Girl:

The song You Can Leave Your Hat on refers to the little felt hats worn in the operating theatre just before you go under the anesthetic.

Girls Just Wanna Have Fun describes the personal freedom expressed by tipping your coffee all over the breakfast table.

A Telebubby chuckle is the perfect response to the maternal outrage resulting from the coffee-tipping incident.

And an outraged howl scores a 100% success rating in securing a replacement cup of coffee, regardless of the number of threats that have been made to the contrary.

“Help, help, it’s a giant!” not only pays homage to a particularly memorable episode of the Smurfs; but it’s also the perfect way to greet people at the mall.

“Don’t play with steam” and “Don’t play with plastic” have origins that are yet to be defined. But when we find out what those origins are, they’re sure to be interesting.

“Sex!” (from Pat Frikkin’ Benetar’s Stop Using Sex as a Weapon, and The Girl’s single identifiable word from the lyrics) is the ideal thing to shriek while you’re trolling the music shelves at The Warehouse.

“Whoa! Turn around, Crash, you’re going the wrong way!” isn’t just a cool thing to say, it’s also a veiled boast about The Girl’s prowess at Crash Bandicoot on her PlayStation.

“Throwing nappies (diapers),” is clearly a competitive sport played out on most episodes of RugRats, however, regardless of how thrilling it sounds, The Girl has yet to find anyone willing to indulge in the fun with her.

“Don’t speak to your sister like that, Chukker-boy,” is the longest sentence in The Girl’s repertoire, and was learned after repeated viewings of a family video. The time taken getting the words in the correct order and the exact inflection was well worth the effort.

Dora the Explorer’s high-pitched and annoying vocal range can be replicated. For perfect results, however, the speaker must measure under four feet tall and boast a ring number one chromosome.

The Girl has perfected the sound of a cat’s meow, a creaking door, and the sound of the ambulance in an episode of Bananas in Pajamas.

Her almost flawless simulation of dry-retching has been responsible for a number of delightfully horrified looks from startled dinner guests during the main course.

There’s nothing more surprising than an unexpected Whoop! Or more satisfying.

Mimicking people at her program is the greatest compliment she can pay them, as well as being an enormous source of amusement.

“Push X,” fixes everything and was learned while spending an unspecified number of hours playing Playstation. Unfortunately, she never progresses from the first screen regardless of how many times “X” is pushed.
“Yowdy yowdies,” is not only a gratifying war cry, but also refers to a compilation of traditional Maori songs. Don’t even ask.

A Poster (rhyming with foster) refers to an entity of undefined size, shape or origin. The girl regularly makes mention of “Dog posters,” “Jelly posters,” or even “Poster posters” which may, or may not be dual personalities.
Again, if you’re looking for specific influences, don’t ask.

The chorus of INXS’s song Elegantly Wasted has been personalized to, “Oo-oo, Mummy’s Wasted,” and makes for an interesting conversation starter.

When you live in a small world, it’s the small things that really matter.

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It’s All About the Presents

The Sooty Party Pack

The Sooty Party Pack

So, here it is mid December already and we’re hurtling towards Christmas day. Where’s the time gone? We’ve had the tree up for three months, Christmas music chiming through the house non-stop for even longer, and the word, “Presents,” dropped into so many sentences, The Girl is starting to sound like Gollum on his quest for that confounded ring.

So far, I’ve bought the gifts, got the crackers and organized the Christmas lunch menu. It does not include pork dumplings. Thirty-three-point-three percent of those surveyed in our household are going to be disappointed.

It’s not the dog.

Furthermore, judging by The Girl’s Christmas present requests, this isn’t going to be the only disappointment come Christmas morning. Amongst the catalogue of gifts she has repeatedly requested and fully expects to unwrap on the day are these:
This Old Man: A windup plastic tape deck put out by Fisher Price, circa 1984. The Girl had one passed on to her by her cousin. It came with two tapes, one of which played This Old Man on one side and London Bridge is Falling Down on the other. The deck refused to play after being over-wound and disappeared after I asked someone to try and fix it.

Telephone: A blue plastic telephone which spoke with the most annoying adenoidal voice. It asked questions and when The Girl made her selection, the telephone would respond accordingly. The transcripts would have sounded like this:
“Can you find red heart…NO! Can you find red heart…NO! Can you find…” Ad infinitum – or ad nauseum, depending on who’s listening. It could easily have driven me over the edge.

Teletubbies CD: Even if I could find one of these, it’s unlikely I’d buy it. We’ve already got The Smurfs Go Pop! What more could we want?

Smurf CD: See Teletubbies CD above. We already own almost every Smurf DVD in creation as well – most of which feature the same episodes that have been cunningly repackaged and marketed under such titles as: Just Smurfy One – 13 Smurfy Adventures!

Pat Benetar Best Shots: God spare me. If you read my post Music, You Are My Obsession, you’d need no further explanation.

Chocolate: Really? I mean, seriously? She’s never asked for chocolate before. She’s diabetic, for cryin’ out loud. Christmas dinner is going to drive her blood glucose levels into the stratosphere as it is. Believe me, it won’t need jet boosters.

Games: Sounds simple, right? Wrong! There’s only one game she wants and that’s Crash Bandicoot Nitro Kart. It’s a game that we already own, along with the second choice, which is Spyro the Dragon. Not gonna happen, Sweets.

Pauline: I don’t even know who Pauline is. If she turns up for Christmas dinner, she’s on cleanup duty.

Money: Now, I’m not entirely sure The Girl fully comprehends the concept of money. She sees it’s necessary for the acquisition of items from The Warehouse and the video store, but she doesn’t seem to understand where it comes from or where it’s kept. She’ll probably get money for Christmas, but it’ll go into her bank account. I doubt that’s what she’s got in mind.

Dead Cat: She already has a mangled toy cat named, appropriately, the Dead Cat. I suspect the relationship with Dead Cat is such that to truly appreciate a toy, you can’t do better than to have a backup.

Sooty: Sooty and Sweep featured in a British children’s television show by the same name and starred a small yellow bear puppet that never spoke, and a gray dog that squeaked. Their “puppet handler” was Matthew Corbett who stepped into the shoes of his aging dad and took over the show. I have yet to find a children’s television presenter with a greater abhorrence for his target audience. We have two of their videos. How some of Mr. Corbett’s vitriolic responses to those sweet little children’s comments ever made it to air is beyond me.
Sooty and Sweep still remain a favourite of The Girl, so it’s no surprise that she requests her beloved Sooty. Proved by the fact that I’ve fallen for this on at least four other occasions because she has four full-sized Sooty glove puppets in various states of dishevelment, two Sweep puppets, one panda Sue, and a pair of tiny Sooty and Sweep dolls. Even if I could find them – which I can’t – enough is enough.

So what do you get The Girl whose only requests are either unavailable, off the menu or potentially lethal? It’s never easy. This year she’s getting a PlayStation 3 snowboarding game that keeps going no matter how many times you crash and die; three colouring books, complete with pens and no crayons; a Pink CD because I like it; and a 1kg pack of Playdough that’ll no doubt transform from twelve bright, shiny colours into a sickly khaki glob within the first twenty minutes.

Merry Christmas, my little cherry bomb.

8 Comments

December 21, 2012 · 2:52 am

Moments I’m Not Proud Of

That’s right, there have been times in my past I’m less than proud of; moments when I’ve given in to my baser instincts; when I’ve allowed that bad seed in my heart to germinate and grow into snaking tendrils of the devil’s garden (okay, maybe not quite that bad, but pretty rotten all the same).

Don’t be shocked! I told you right from the start I was no saint. You don’t believe me, go back to my post First Steps and check the fine print. And once you’ve run your eyes through my confessions listed below, I’m in no doubt you’ll agree.

So, every parent has frustrations and irritations. I’m sure you get that. But being the parent of an obviously disabled child brings a whole new set of challenges. And the one irritation that brings out the worst in me is: “What’s wrong with your little girl?”

Seems harmless, doesn’t it? Seems innocent; sweet almost. Can’t you just picture that angelic child standing there, twisting shyly on one foot, finger pressed to her mouth, head slightly tilted to allow the golden ringlets to tumble across her shoulder?

Yeah, that’s what I used to think. And then that all changed.
When The Girl was born, I’d take her out in her pram. For the American audience, that’s a baby carriage. It makes not one iota of difference to the story, but now you know.

So, imagine the scene, if you will: here we are, strolling down the aisles of the Starbucks-sized department store of the small town we lived in, and lo and behold, the afore-mentioned sweet little tot sidles up alongside me to utter those very words, “What’s wrong with your little girl?”

Naturally, I smile sweetly, going as far as dropping to one knee, saying, “Sweetheart, my little girl was born this way. She’s a very special little person and she was born with something special that made her that way.”

Suddenly, the mother, watching on from the sidelines, plucks up courage and steps forward, saying, “What’s her diagnosis?” or “Can you get anything done about it?”

My reply in these situations was usually something saintly, like, “She has a ring chromosome,” and after a brief biology lesson, followed by assurances that I’m happy to answer their questions, I bid them a fond farewell, and move on. Sounds great doesn’t it? Sounds like I’m fully accepting and in control, right?

Don’t be fooled.

Let’s move on to a point in time when this scene has played out no less than 127,765 times, repeated over and over like some kind of Groundhog Day and I’m wondering if I’ve got, Go on, ask me! Printed across my forehead. I’m cruising up and down the supermarket aisles and next thing, the angelic child moves across my path, foot twisting, ringlets falling. My eyes immediately flash up from the pram and narrow on the child. “Excuse me, you’re in my way.”

The mother’s eyes meet mine. There’s a hint of pain in them; a slight furrowing of her brow.

I look back at the kid, who fails to sense the tension and says, “What’s wrong with your little girl?”

The kid’s mother is still watching. There’s a nervous tic in the corner of my eye as I reply, “She was born like that. Now would you mind getting out of the way so I can do my shopping?”

The mother scoops the child up, stroking back her hair like I physically attacked her and glares venom after me as I flounce off down the baking goods aisle.

Okay, from Explanation number 1 to Explanation 127,766, you’ve probably noted a certain downward progression in my response; a deterioration of my outer cool, a hardening of my tone.

Can you blame me? By Explanation number 654 I was walking off muttering, “So when did it become my responsibility to teach the world’s kids about disability.” After that, it was all downhill.

You think this is bad? It got worse. I went from, “Excuse me, I’m in a hurry,” and plummeted into the pure sarcasm.

Here’s a selection of responses I have actually used, and am not proud of:

Small Child: “What’s wrong with your little girl?”

Me: “She didn’t eat her greens.”

Me: “She told me a lie.”

Me: “She ate too much ice cream.”

Me: “She asked too many questions.”

Me: “She gave me backchat.”

When I realized I was fighting a losing battle, I gave up engaging. I tried deliberately looking the other way. Still they came. So I resorted to, “Go ask your mother,” and walking off.

Harsh? Yes. Childish? Doubly so. Satisfying? You can’t even imagine.

Then, one day I realized something. It dawned on me that perhaps something about my demeanour – about the way I presented myself – was actually inviting these assaults. There must have been a twitch, a flinch, a look in my eye that gave these kids the idea that I wanted – no needed – to unload. So I began to simply ignore them. Incredibly, it worked.

Oh, not 100%. Every now and then, I get a kid who stares. There was a period in time when I’d stand there and give them my most evil eye until they wilted under the intensity. Eventually, I gave that up as well. It was embarrassing when they burst into tears and their parents gave me filthy looks.

These days I barely even notice them.

I think that comes with being more comfortable in my own skin. And there’s every chance those kids taught me far more than I ever taught them.

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Filed under The Joy of Living With a Disabled Child

Music, You Are My Obsession

A small sample of The Girl’s collection.

Whenever I hear Pat Benetar limbering up her vocal chords and belting out Hit Me With Your Best Shot, believe me, I’d be more than willing to oblige.

It’s not that I hate Ms. Benetar. On the contrary. She was one of my all-time faves throughout the eighties. But since then, The Girl has discovered her. Along with every other eighties band in creation – plus a whole lot more. And now we live in a house echoing wall-to-wall with music, day and night, night and day.

Oh, I know, it could be worse. I recently saw a British show in which an entertainer was working with severely disabled young people to put together a musical show. It was stunning. The young people were amazingly talented. They sang, they danced, they rocked! But the parents of one of the stars placidly told of how their boy was so obsessed with music, every evening at 6pm they had to leave the house en masse and go to the local music store so the boy could rake through all the new titles while they stood there aimlessly watching on and twiddling their thumbs.

I thought, “Bugger that.”

Imagine it! Being forced out of the house every day, rain or shine so you can waste your life standing around like a spare trowel at a garden party and being stoically wonderful about it!

And yet, I make my own concessions. I’ve lost my entire CD collection – the girl commandeered all my Tom Petty’s; my Roxy Music and Cure albums, and every one of my INXS compilations. She stole my Neil Young Decade (only because she couldn’t get her hands on the vinyl and the tapes were all screwed) and she grabbed all my Live albums. Now they all look like the things dragged behind a bridal car on the wedding night.

But her collection isn’t limited to the ones she’s stolen off me. It has grown. And by that, I mean it’s exploded. Think about it, after thirty-one years of birthdays and Christmas’s, what do you buy the person with a music obsession when the only other thing they request is pork dumplings? So on special occasions, when I’m feeling mentally well-balanced and resilient, we go and search through the music racks of our version of Walmart called The Warehouse. And boy, we’ve got some doozies there.

Phil Collins: No Jacket Required. Sorry, Phil, but that’s become, No Sanity Required.

Paul Young – that’s right, you can still buy him! Although he’s not so young any more.

Elvis. It’s his Blue Christmas Album so that wound up serving a dual purpose.

Duran Duran – or at least, the ones I didn’t already have.

The Wiggles…did I mention this is a rather eclectic collection?

The result of so much music is a mixed bag. The chorus of True Colours has become a standard response to a multitude of requests and inquiries, and Pat Benetar is not only known in our house, as Pat Frikkin’ Benetar, but she’s also been banned from The Girl’s program because they’ve heard her a squillion times and they’re sick to death of her.

Every morning The Girl comes to the breakfast table with handfuls of CD’s. They sit beside her so she can reach out and touch them, caress them and sort through them while she eats. I bought her a bunch of CD sleeves to keep them all in because every single CD case winds up getting dropped on the floor and broken, and when you try to put them back together you find that those little tabs holding the cover in place have pinged off and fixing them is an impossible task. But the CD’s come out of the sleeves by the handful and they never go back. Instead, they cascade from her bed, the dresser, the sideboard – rolling across the floor, circling briefly on the spot only to be stood on while she’s trying to retrieve them.

Fortunately for her, because she has the widest, most eclectic collection this side of…well, anywhere, I’m smart enough to copy the CD’s in their virgin state onto my laptop before they first hit her CD player. And that’s essential because Every. Single. CD. Looks like it’s been through a trash compactor.

And yet, beyond all reason; flying in face of all that is good and holy – THE SMURFS GO POP! Which has a playing side that looks like it’s been cleaned with steel wool, still plays faultlessly.

Go figure!

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Filed under The Joy of Living With a Disabled Child, Uncategorized

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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Filed under Christmas Time