Monthly Archives: May 2013

This Is What I’ve Come To…

Beach Hats MandatoryI’ve been the full-time carer for The Girl for over eleven years now. Some of that, I’ve worked part time, but nothing of late. During the course of this time, my life has changed by small, seemingly insignificant increments. It was only today that I realized how much those changes add up to and how differently I see our world. For example, these days:

A shower in relative peace is a luxury.

Styling my hair consists of aiming the drier at my head while I’m applying makeup/cleaning my teeth/unblocking a drain; and waiting until my hair’s stopped dripping.

Application of said makeup consists of slashing a couple of eyebrows on with a pencil and flicking a mascara wand at my lashes (preferably without blinding myself).

A telephone conversation initiated by me begins with, “Yes, I’d like to make an appointment to see the doctor, please…”

A telephone conversation initiated by someone other than me begins with, “So how’s The Girl today…?”

A family outing is comprised of twenty minutes at a budget hairdresser, twelve minutes at the video store, and seven minutes driving at 10 kph over the speed limit so we can get home before The Girl’s blood sugars crash.

Visitors are people who come to a) deliver packs of adult diapers b) ask if I’d like to change electricity providers c) collect The Girl in an ambulance for another dash to the hospital.

An evening out arises when the company contracted for support sends a sitter so I can do something life affirming, and I wind up wandering around the local mall because I can’t think of anywhere else to go.

My hobbies include housework.

My preferred gardening methodology is termed ‘perma-culture.’ That’s posh for ‘neglected.’

The drapes at the rear of the house are permanently drawn so I can’t see how perma-cultured my back yard is.

The gym is a distant memory. Yoga is a more recent memory. The dog never lets me forget it.

30% of all meals are eaten standing up.

The remaining 70% of all meals eaten while sitting are interrupted by a) a bathroom break b) a coffee spill c) a sudden and inexplicable need to find a CD that’s been lost for seven weeks.

Ironing is something I do on special occasions. I never iron.

It takes me an average of three seconds to locate my gardening shoes, my scuffed and tatty flat shoes, and my sneakers.

My high heels are somewhere in the closet under a layer of dust.

Jeans without holes are the new black.

Jeans that require heels never leave the closet.

Bedtime happens at sundown.

The sun rises an hour after I do. In winter, it’s two hours.

A soft moan in the night means either the dog is dreaming, or the Girl needs Paracetamol.

Cancelling four consecutive lunch dates with the same person due to “unforeseen circumstances” is the norm.

A two-hour shopping excursion results in groceries.

97.6% of all conversations include the words, “blood pressure, blood sugars, medication, and poo.” Often all within one sentence.

Xbox is another word for “Escape.”

Booker Dewitt, the lead character in the game Bioshock Infinite, is counted amongst my friends.

Six hours of unbroken sleep is unheard of.

Socializing requires the phone or the computer.

“High Alert” is standard operating mode.

“Red Alert” is one level above “High Alert.” The consensus is that if “Red Alert” continues to recur at the current rate, it will be downgraded to half a level above “High Alert,” and “Meltdown” will supersede it.

Aspiration has everything to do with the involuntary inhalation of food or liquid particles, resulting in pneumonia, and nothing to do with career goals.

The way I live is of my own choosing, and I wouldn’t have it any other way. One day my world will expand again. But one huge part of it will be gone. It’s truly a doubled-edged sword.

If you know someone whose world has contracted while they care for a sick loved one; if there’s someone close to you whose life is dominated by difficult circumstances—even if it’s of their own choosing; do something for me:

Give them a call. Let them know you’re thinking of them. Drop in some small token of your admiration for them. It doesn’t have to be diamonds. A small bunch of flowers, a couple of muffins, a handmade card can make the difference between hope and despair. Let them know the world is still out there for them; that you’re still there for them. And that you’ll be there for as long as it takes.

From one who knows, it’s more appreciated than you could imagine.



Filed under Terminal Illness

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…


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

And Just When We Were Getting Comfortable…

Remember that old song, “What a Difference a Day Makes?” That’s rapidly becoming our theme song. On Tuesday (two days ago), my girl complained of sore ears, sore tummy, sore legs, sore everything between. When your vocabulary is limited, “symptom strafing” is often the only way to get your point across. So I took her to the doctor where I counted off all the various ailments, adding that her blood sugars had been going up and down like the needle on a politician’s polygraph, and the thrush in her mouth might have returned. The gurgling sound in the back of her throat the last few nights completely slipped my mind. Until yesterday. So Wednesday morning, cue the opening bars of said theme song.

The Girl has had a restless night, so I let her sleep late. At 8:30 a.m., I waft in and raise the blind.

The girl looks decidedly pale. Her chest is rasping like a blacksmith’s bellows and her blood sugars are horribly low. When I attempt to sit her up and feed her some honey to get her blood sugars up, she groans and her eyes flicker open. Then close.

A wave of panic hits me.

I call the doctor – no instant reply. I call the hospice support nurse, then the district nurse. There’s a decision process you go through, weighing up the options and the possible outcomes. Do I? Don’t I? What if I’m just panicking? But what if I’m not?

The Girl looks terrible, so I call the ambulance. By the time the paramedics arrive, her blood sugars haven’t moved, and her temperature has plummeted along with her blood pressure. Further readings in Accident and Emergency tell us her temp is two degrees below normal, and her heart-rate is half its normal pace. In the back of my brain, I’m thinking, Thank God I did the right thing. Then the coin flips.

While the doctors take her vitals, insert a catheter, study her notes, I’m hovering and getting in everyone’s way and asking, “How is she? What’s happening? What do you think?”

I suspect they want to say, “Give us a bloody chance, will you?” but they smile and tell me they’ll let me know as soon as they know “– which, of course, is code for “Give us a bloody chance, will you?”

the stomach pain etc. He tells me that in his opinion, the Lactulose would have been better.

Typical. You ask sixty-seven doctors a question, you get sixty-seven different answers.

An x-ray show she has shadows on her lungs. Not one lung – both. That could indicate one of two different scenarios: When her blood sugars dropped, she may have aspirated. Maybe she lost consciousness and saliva ran to the back of her throat and into her lungs, and that’s caused pneumonia.

Terrific! Why didn’t I check her blood sugars? Why didn’t I sit her up when I heard the gurgling? Dammit all! Why didn’t I mention it to the GP when I was there? How could I be so stupid?

Scenario Two is that she’s her liver has deteriorated to a point where it no longer provides a thickening agent to the blood, and that now her blood has thinned to a point where it leaks across the capillary walls and is filling her lungs.

Why didn’t I do something earlier? Why didn’t I prop her up in her bed at night? How could I have let this happen?

It’s obvious this isn’t the first time the doctor has seen the expression on my face. He places his hand on my arm and says, “Stop looking for ways to blame yourself. This was going to happen. Regardless.”

Somewhere in my brain there’s a voice saying, “He’s right. There was nothing more I could have done.” But somewhere in the dark recesses of my mind, I’m still scouring my memory to find that moment, that clue that should have told me this was coming so I could have avoided it.

By 1 p.m. the catheter has emptied her bladder and a laxative has ‘unblocked’ her a little. Against all my expectations, my Girl has rallied. Her temp is back up, heart-rate increasing, blood pressure rising. I heave out a huge sigh of relief. I’m exhausted.

She’s out of the woods, but she’s not back on the road. This is only a clearing.

My wonderful neighbour arrives. She’s acting support crew and she’s brought bread rolls and smoothies. Despite my repeated thanks, she has no idea how much her help means to me. The Girl is moved to the Observation ward until a bed on an upstairs ward becomes available.

While we wait, a nurse sweeps in and asks what The Girl wants for lunch. I tell her mashed potato. She tells me she can’t do individual items. She says there’s a set menu. I’m wondering why she asked in the first place. Again she asks what The Girl would like. I tell her we don’t mind. Miraculously, she finds a menu with mashed potato and a spare meal for me. I ask the head nurse if The Girl can eat. She says yes, but only sitting in an upright position. They’re worried about the danger of her aspirating. I’m wondering if they think I’m a complete idiot; that I lie The Girl flat and pour drinks down her throat.

So I sit her bolt upright and as I’m spooning soup into The Girl’s mouth one millilitre at a time, a second nurse whisks in and tells me she shouldn’t be eating. There’s a hushed debate out in the corridor, and a chart is affixed above The Girl’s bed. Apparently, she can eat mashed potato and now she can drink in sips.

s blood pressure has dropped. I gulp down coffee and soup and return for a second bedside vigil.

For the first hour, I fully intend staying with her. There’s a comfortable chair in the room and a nurse brings me blankets, but every time I close my eyes, the squeak of shoes heralds yet another blood pressure reading…a temperature check…her pain medication – “No, not Codeine, that blocks her up”…a change of pain medication, Aarrrgghhhh! Zombiefied, I head home again.

This morning there’s a call. The Girl is asking for crayons, a colouring book and her mummy. I don’t care if she eats all the crayons. Hell, I don’t care if she eats the book. What could possibly happen? She’ll end up in the hospital?(don’t answer that).

In a couple of days, I suspect The Girl will be home. We’ll fall back into the routine and one day The Girl’s health will deteriorate and we’ll jump back on this merry-go-round. How many times, I have no idea. But here’s the thing: I’m not an overly religious person, but I’ve come to this conclusion: We have an alloted time on this earth. With all the best intentions, we can intervene, medicate, and treat for symptoms and pain. But in the end, the body decides when to call time. There is nothing we can do to change that. This is not my Girl’s time. I cannot take responsiblity when that time does come. I must remember this.

I probably won’t Until then, I’m still blessed.

Leave a comment

Filed under Uncategorized

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.



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