Tag Archives: resilience

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

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

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

Holy Mother of God, Is There No End To This?

Yeah, I know. I started out titling all my blogs after songs, but I couldn’t find one called, “Holy Mother of God, Is There No End To This?” There may be one – I didn’t look.

The girl got sick. She came home from her art class on Saturday and went straight to her room. I came in a half hour later to find her inexplicably lying on the floor. So I said,

“What are you doing down there, you silly old sausage?”

She didn’t reply but that was okay because she rarely does. Halfway back down the hallway the notion hit me that she never, and I mean never, lies on the floor. She stands, she sits, she bends, she even snuggles in bed – all positions controlled and easily reversible. NEVER does she lie on the floor.

Sure enough, a blood sugar test showed she had a reading of 1.8 mmol/L. To get this into perspective, the normal blood sugar range is between 3.5 and 8.0, or if you’re using the American standard, it converts to 32.4mg/dl, which in anybody’s standard is pretty damned low.

First in went the honey, then another blood test. Cycle repeated until The Girl’s fingers were speckled red with pin-pricks and the honey pot was half full. Finally her sugars rose to 19.7 – which is way over the top. But slightly more managable.

By now she was disoriented and wobbly on her feet so I manoeuvred her into bed, spoon-fed her some dinner and told her to rest. Best thing, right?

Apparently not if you’ve contracted norovirus! I’m not going into details. They’re all way to ugly to mention.  Let’s just say it was a long and messy process that involved a seemingly endless cycle of, “changing jammies, changing bedding, washing everything, then repeating”.  All Saturday night, every hour, on the hour.

The next morning I looked like something out of that Michael Jackson Thriller video. My sister, Chookie Lou (not her real name), called and asked if she should drive the three and a half hours from her place up north to come and help me. I stoically told her the girl was sick but fortunately, I never get sick so I was okay.

I spoke too soon.

That bullet I thought I’d dodged ricocheted off the bathroom wall, resounded off the porcelain and hit me at 5:30pm. So there we both were, stuck in the “change jammies” cycle, except now the recurrence had sped up to every half hour.

Finally, at 1:30am I forced myself up out of bed feeling like one of the not-quite-fast-enough at the Running of the Bulls and took her blood sugars again. A whooping 3.2!

Bugger it!

I staggered into the kitchen and squeezed half a dozen oranges and grabbed a bottle of lemonade from the fridge. I believe that saved our lives. Or at least, it saved a tiny percentage of what passes for my sanity along with several changes of bedding.

It’s taken us a few days to recuperate. I’ve lost 2kg in weight and learned the difference between the American and the New Zealand standards of blood sugar measurements. Every cloud, so they say.

And hey! I’m still here. And you know what?

I feel good. I love that I feel well again. I love that the girl is getting well again. (Even though she’s now howling because Crash Bandicoot isn’t going the way she planned).

I know it’s tough when you’re the first one up, last one down. I know it sucks when you’re the one those around you lean on, and you only have yourself for support. I know it’s lousy when you get so low you seriously wonder if you’re doing it right.

But when you get to the other side and the sun comes out; when the washing’s done, the bed’s are clean and all The Girl wants is her music on, that’s when you can look back, know you’re stronger than you thought, that you have the resilience to keep going, and the strength to survive.

And that’s when you know you’re truly blessed.

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