Tag Archives: disabled children

Gonna Be a Bright, Bright, Sunshiney Day

My GirlI’m delighted to report that every day since her latest spell in the hospital, my Girl’s abscessed needle sites have improved and she’s gotten better and better. Of course, there are pros and cons to moving forward. Aren’t there always? However:

On the One Hand:She’s singing again. As I write this, she’s very appropriately bellowing out Tom Petty’s, I Won’t Back Down.

She can tell me when she’s in pain. That means I can do something meaningful about it. No guesswork … or at least, minimal guesswork.

She smiles. I cannot express how wonderful that is.

She can hold her sipper cup, and drink by herself. She has tremors, but she can get the spout to her mouth, and finish an entire drink without help. A far cry from having to administer liquids by dropper or straw.

With an acceptable level of spatter and particulate spread, she can eat a sandwich. It requires some damage control, and a change of bedding, but it’s forward momentum.

She’s meowing. Yes, when my girl is happy, she doesn’t purr, she meows. It’s gorgeous.

I can get her into her wheelchair and move her short distances.

As a result of the wheelchair reintroduction, she’s going to her program. She’s only attending for a couple of hours a day, but it’s another step forward.

I can toilet her. The wheelchair also means I can get her to the toilet, and that reduces …well, cleanup.

All the above brings us close to the return of normality. It does not always go according to plan.

The toileting routine, for example. It’s not perfect. But it goes like this:

I begin by swivelling the Girl in her bed, with her legs over the edge. Next, I sit her up, let her get her bearings. After being horizontal for so long, her brain isn’t used to be vertical. It takes a while to allow her to adjust.

When she’s ready, I crouch low, my arms around her (avoiding the wound sites), her arms around me, and I lift. We quickly swivel her on her feet, and sit her in her waiting wheelchair.

I wheel her to the bathroom. Experience has taught me to take great care not to whack her elbows on the doorframe. (The whacking, however gentle, produces screams that are often far out of proportion to the whack)

At the toilet, I take the footplates off the chair, place a pillow on back of the toilet, release the tabs on the diaper, and repeat the stand and swivel. To return, we repeat the process in reverse.

Sometimes it goes badly. Like this morning.

We do the swivel from the bed. She’s a little unsure, so there’s a squeal. I reassure her that I’m holding her, that I won’t let her go. She gets to her feet, swivels easily to the waiting wheelchair.

We do the bathroom run, sans elbow-whacking. I’ve even remembered to take off her socks so she doesn’t slip on the floor—also learnt from previous ear-shattering experience.

The return is not so great. Despite the socklessness, she swivels, loses her confidence. I have both arms around her, but she’s screaming, “Fall, fall.” I’m saying, “I’ve got you. You won’t fall.”

She doesn’t believe me. She screams at the top of her lungs. Her mouth just happens to be two centimetres from my left ear. She screams again. I yell, “I said I’ve got you. Now turn! TURN!”

She’s not turning. She’s screaming, and now she’s gone “boneless.” Still yowling at a glass-shattering pitch, she slithers out of my grasp, and slides to the floor. It’s like trying to hold a 36kg beach ball wrapped in cellophane. Go ahead, picture that.

I’m still yelling, “I’ve got you, I’ve got you!” Which patently isn’t true. We’re now wedged between the wheelchair and the toilet. It’s a gap of around one square meter. If that. She’s flopped against the wheelchair with her legs between my feet.

I can’t move the chair. It has to be positioned to take her. I can’t turn around. Getting her up off the floor and back into the chair necessitates a dead-lift of 36kg, straight up. She’s still screaming. I almost get her there, but she arches her back and goes down again. I drag her up, screaming reassuring words at her. This time, I poise her on the edge of the chair but she’s kicking out, deliberately sliding back off the edge of the chair so she can make her point that I’m not in control of this situation, and proving that she can slip back onto the floor anytime. I grip her upper arms, and round the chair, and just as she begins to slide, I wrench her back up onto the seat. I quickly wrap her naps, and a blanket around her, reaffix the footplates, wheel her back to her room. Just as I tuck her back into bed, she looks up at me, and says, “Go to the video store?”

I’m like, “Yeah, sure, that’s really gonna happen.”

Our house now resounds with the words, “Want hot chocolate. Want Smurfs. Go toilet.” It’s accompanied by a loving but hollered reply of, “Gimme a break! I’ve only got two hands!”

I hate to think what the neighbours think.

Baby steps, I keep telling myself. We are getting there. I know it won’t last. I know it’ll only take one minor setback to go back to where we’ve been.

But believe it or now, I’m savouring what we’ve got, while we’ve got it.

And getting help for toileting.


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Filed under Parentlng alone, Terminal Illness

Another Mark on the Checklist

candidatesdaughterebook_HI_RES-1Yes, I can check one major item off my checklist: my book, The Candidate’s Daughter, is finally published and available. It’s taken some work. I’ve been fortunate enough to have a fantastic editor in Sara J. Henry (author of Learning to Swim, then A Cold and Lonely Place), and some fantastic support along the way from friends and family. If you’re interested, you’ll find my book here: The Candidate’s Daughter

The reason I mention it now is because I know this journey I’m on with my Girl is getting tougher. Last night she didn’t want her dinner. She complained of sore legs, sore arms, and ear ache again. I gave her Paracetamol, rubbed her arms and her legs, gave her Nilstat for oral thrush, and put her to bed. At 1 a.m., I heard her stir so I got up.

Her blood sugars were a staggering 1.8. So it was out with the midnight feast of jellybeans and Fortisip, a liquid meal replacement formula. I also have a diet variety but that doesn’t get her blood sugars up. Fortisip does. Two hours later, with her blood sugars at 6.2 and her “Hypo” sweats abated, I finally went back to bed.

This, I know, will not get easier. For some time now, I’ve been in somewhat of an emotional void. I haven’t known how I was “supposed” to feel. If that sounds weird, let me explain. Up until now, we’ve had our ups and downs. In between periods of apparent wellness, we’ve hit lows during which we’ve made panicked dashes into the hospital. All the while, I’ve kept at my writing. All the while, I’ve been totally focused on getting my work up online. Because that’s the only part of my life that isn’t about my Girl. It’s the last sliver of my existence that’s totally mine.

And very soon, that will disappear.

I’ve been told by the experts that this journey I’m on is not a sprint—it’s a marathon. Ahead of me are hills and valleys that will test my edurance, that will push me to the very edge and change the way I live.

We all have this romantic notion of the family sitting around the bed of the terminally ill patient, holding their hands until that final moment when their eyes blink momentarily open, and they say, “I love you all, and thank you.” There’s a moment of suspense, a faltering breath, and then they’re gone. A few sniffles over a peaceful passing.

That may happen, but during the time leading up to this point, it’s a totally different story. An emotional wrecking ball is swinging the carer from one extreme to the other, and with every swing, their emotional resolve wavers and their physical energy takes a hit. There are fits of rage at what’s happening to their loved one; there are moments when they’re pushed to their absolute limit, and the fatigue and exhaustion feels like a tsumani has crashed down on them, sweeping the very ground out from under their feet.

I guess I’m fortunate. I have the support of my family and a range of amazing services offered by organizations like the Hospice. I know what’s coming. I think I’m prepared for it. I also know I’m not.

But at least I can look back and know that I’ve completed the goal I set myself—I’ve got my work out there. I can put my toe to the starting line knowing I have some closure on that front.

Now it’s time to concentrate solely on my girl. It’s time to step up to take that first next step on that marathon. It’s time to throw everything into making the last moments of my Girl’s life the best they can be. It’s time to start saying goodbye.

Wish me luck.


Filed under Coming to the End, Uncategorized

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

Who Knew The End Would Be This Expensive?

An African Violet By Any Other NameMorbid as it may seem, I decided to take the bull by the horns and get at least one dreaded task out of the way – arranging the funeral. I’m doing it now for a number of reasons. First up, when the time rolls around, and I know this will happen all too quickly, I do not want to waste my time trying to decide whether it’ll be lilies or chrysanthemums. I don’t want to be sitting in a funeral parlour filling out forms. I want to be with my friends and family. I want to be in a quiet mental place where I can reflect on my Girl’s life without the strain of dealing with “Who organizes what?”

Secondly, I want to find a celebrant that I like. I want one who can meet The Girl and find out what a special, amazing, fabulous person she is. I want that person to get a glimpse of The Girl’s sense of humour and her incredible courage. I want someone who has known her – albeit briefly – and can speak from the heart about her.

Finally, I needed to know what I’m up for financially. Believe me, when I saw the estimate, there was a point at which my family were looking down the barrel of negotiating a double deal.

I staggered out of the funeral home with my hand clutched to my heart, and immediately called Chookie Lou. She’s the sensible one. She knows how many beans make three. And besides, this is the reason I’m doing this now. Because in the cold hard light of day, I can make sensible decisions that aren’t made in the depths of guilt and grief.

The total estimate came to $10,027.00. I put the cents in there in case you thought I’d missed out the decimal point. Yes, ten grand. I sat in my car fanning my face with my hand while I ran through the expenses with Chookie. I’m going to go through them here for you. Not because I’m bitching about it. Far from it. This is the cost of death. I’ve made these decisions because I want to offer the maximum respect to my Girl, without inviting a lifetime of poverty for myself. I’m telling you so that you can plan to live longer. So here goes:

The funeral directors fees were $3700, or there abouts. Chookie Lou suggested shopping around. I said that’s pretty reasonable since they arrange everything, pick up the body, organize the cremation. They’re like wedding planners except the client in fact loses their other half…or maybe they’re like divorce lawyers, depending on your perspective.

The Casket: I chose the cheapest. There was a rental option which was marginally cheaper, but it meant that I’d have to leave my Girl in the chapel and walk out without her. She’d be taken away and removed from the casket and placed into a plain box. I don’t want that. I don’t want to abandon her. So it’s the cheapie option. But it’ll be hers.

Flowers: They were $200. Chookie Lou grappled back a minor coronary and told me to ditch them. We can pick up a lovely bouquet from a florist for a fraction of the price. We’re not our mother’s daughters for nothing.

After match function: for a scone and a cup of tea it was around $7.50 per head. I estimated we’d have around 50 – 80 mourners. Chookie Lou suggested we buy in some cakes, go back to my house, which is just down the road, and save ourselves the cost of the catering and the venue hire. Check.

Photo tribute: It was a series of photos put onto a DVD and spooled across a screen while a couple of chosen songs played. The representative asked if I’d like to sing. I told her if I sang, we wouldn’t have 50 mourners. If I broke into a stirring rendition of Into the West, we wouldn’t have 1 mourner. The chapel would clear in the time it would take me to draw a second breath. People would be stampeding the exits with their hands clapped to their ears. She asked me if anyone else in my family would like to sing. I told her I have the best voice. She pressed me no further.

The Chapel: To hire the chapel is $275.00. Chookie Lou once again got out her calculator and suggested we go to a local church. I told her I haven’t set foot in a church in I don’t know how many years. I told her that if we went to a church to save money, we’d probably have to pay the church, then pay the hearse to take The Girl there, then to pick her up. It would probably wind up being more expensive and far more inconvenient. I always knew my lack of religious inclination would come back and bite me in the ass. Who knew it would be like this?

There are other costs that can’t be avoided and I wouldn’t want to if I could. The celebrant, the death certificate, medical documentation, service sheets with a verse and The Girl’s photo, and a blown glass paper weight that’ll have a tiny amount of The Girl’s ashes swirled into it. It’s beautiful.

Now all of that is done, barring a few items I have yet to check off the list. I’ll call back with the revised schedule and we’ll knock around a grand off the total. I can do this now because I can look at the whole process with a cool clarity, and the certainty that I’ll go to The Girl’s program this afternoon and pick her up and take her home. We’re going to the beach tomorrow. We’ll have a ball. I don’t care if it rains. I don’t care if it takes all day. I don’t care if I get nothing else done.

I’ve still got my Girl and I’m loving it.


Filed under Coming to the End

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.


Filed under The Joy of Living With a Disabled Child

Ignore the Screaming, She’s Phobic

I’ve come to the conclusion that if you’re going to have a phobia, it may as well be something completely ridiculous. Otherwise, what’s the point?

I, personally, have no phobias. I know, I’m lucky. I have a few insecurities, a couple of hang-ups, a number of eccentricities – who doesn’t?

But so far I’ve managed to avoid the terrors of phobic disorders. You could say I’m pretty-well fear-free.

The Girl – not so much. She has one dread that’s shadowed and terrorized her all her life:

African violets.

Yes, you read that correctly. And before you go Googling to see whether I’m referring to some deadly triffid-like species of cymbidium native only to New Zealand, I’m not. I’m referring to those cutesy little purple/pink/white flowering plants with the fuzzy gray/green leaves and the short, satisfyingly snappable stems; those tightly-packed rosettes of wooly foliage you find tucked away in the dusty recesses of old ladies’ living rooms.

These seemingly innocuous bundles of sweet, huggable greenery have been the bane of my life.

And for a girl with impaired eyesight, it’s incredible how she spots them skulking amongst the ferns at The Warehouse; hiding on the shelf at the garden center or towering over us from atop the toilet cistern during an unexpected bathroom break at a friend’s house.

All of which induce the kind of mind-altering screams from The Girl that Hitchcock would have been proud of.

I have no idea how such terrors came about.

I grilled Number One Son, the Chukka-boy on several occasions, thinking he’d spent many a babysitting hour tearing around the house terrorizing The Girl with an African violet in each hand. He swears it wasn’t him. He said if it was him, he’d own up to it because frankly how many people could lay claim to something so ludicrous?

Then I thought perhaps her grandmother, owner of several terrifyingly large plants, might have inadvertently traumatized The Girl with her living room greenery. But she was adamant it wasn’t her. On the contrary, she told me she had tried on several occasions to show The Girl there was nothing to be afraid of; that the plants were friendly and lovable. She’d spend hours gently coaxing The Girl’s little hand ever-closer to the pot; speaking in calm and soothing tones while gently bringing her fingers into contact with the leaves; only to have The Girl go practically catatonic and howl inconsolably until she was pacified with an onion sandwich.

Okay, so the fear of African Violets is not the worst irrational fear anyone could have. I’ve heard of people with ‘cow-phobia’, or Bovinophobia, to use the correct
term. And yes, that’s a real phobia. I mean, how many cows would the average Bovinophobic come across every day in the workplace? Unless you’re a farmer, of course. In which case Bovinophobia would be the least of your problems, if you ask me.

I did a quick Google on “Phobias” to find that there are people whose hearts are gripped with terror at such things as: nudity, cats, of liquids or being laughed at; of the night, of birds, of clowns. There are people who are paralyzed at the thought of all things French, if you can believe it.

But African Violets? I mean, seriously?

So when The Girl’s grandmother sadly passed away a couple of years back, and her beloved houseplants were divided amongst friends and family, guess what little keepsakes we got to inherit. That’s right, two – I repeat, TWO African violets. So now we have one African violet sitting in the dining room overseeing goings-on at the dinner table, and a second in the main bathroom ensuring no one abuses the facilities.

So that’s two portals of terror in our house.

But take heart, my trembling little bundle of nerves: when your worst nightmares threaten to overwhelm you; when you find yourself overcome with panic at the sight of the bathroom foliage, or the hideous specter of an African violet casting its shadow of dread across the dining table, just remember – it could have been worse.

They could have been French.


Filed under Uncategorized