Category Archives: Parentlng alone

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.

Leave a comment

Filed under Parentlng alone, Terminal Illness

Eenie Meenie Miney Mo

Contrary to popular belief, I have not run off with a Columbian drug lord to live a life of luxury and danger on the proceeds of his illicit operations.

Neither have I locked myself away with some obscure order of nuns under a strict vow of silence.

I’m still here. I’ve been busy. Let me tell you about it.

In our last exciting and apparently (according to one reader) lengthy episode, my Girl came home from the hospice with an infection in her shoulder. To say it was unexpected would be like saying, “Wow, who knew autumn would turn up straight after summer?”

She’s been home only one night from the hospice. I give her pain medication. It doesn’t help.

The next morning, my Girl has a lump the size of an emerging tennis ball on the upper part of her shoulder blade. Worse still, her blood sugars have soared to the point where the meter gives a readout of, “Man, are you ever in trouble.” She’s clearly unwell.

I call my doctor. She makes out a prescription for more antibiotics. I call the hospice. The nurse zooms straight to our door. This is serious. I speak to the hospice doctor. Although the hospice would normally advocate non-intervention, she tells me the infection is reversible, and they advise me to send her straight to hospital.

When we arrive, we’re whisked straight through the Emergency Room and into the Acute Unit, all thanks to the calls made by the hospice doctor. The ADU nurse takes my Girl’s blood sugars, temperature, and vitals. She tells me that she’s seen her notes, and gently advises me that one option is to heavily medicate my Girl, and let her go.

It feels like a good option. She could slip away in her sleep. Out of the pain and into the hands of whoever waits on the other side. I swallow back the tears, and accept that it may be my only option.

Boy, am I ever wrong.

There’s a bed on Ward 5. I’m disappointed. We’re practically on a first-name basis with the staff on every ward except 5, and Maternity. I suspect one day we’ll do a stint in Maternity, but I can’t imagine the circumstances. I’m doubly disappointed to find she’s sharing a room with three others: two middle-aged women, and an anorexic girl with a 24-hour watch on her. The nurse tells me the 24-hour watch will benefit my Girl because they can keep an eye on her as well. All I can do now is go home and rest.

The next day, I manage to catch the doctors doing their rounds. We have three choices. Who knew we’d have that many?

They can: a) put my Girl under a general anaesthetic, and cut out the abscess. That means a couple of inches across, at least an inch down. It won’t be so much a wound as an excavation site. I’m not keen.

Then there’s option,( b) open it up under a local anaesthetic on the ward. According to the doctors, this would be excruciatingly painful. Again, I’m not keen.

After that, there’s option (c) do nothing, and let her go.

Everyone tells me there’s no “right” decision. They look to me. The stress of the decision is agonizing. When the phlebotomist arrives to take blood, I tell her she’s not putting any more holes in my girl, because that’s how we got into this position in the first place. I tell her to take her cart and go! She tells me she has to take blood for the operation. I tell her there isn’t going to be any operation. She argues. I make her regret arguing. Then make a mental note to apologize when I next see her because she’s only doing her job.

I speak to the Palliative doctor, the surgeon, the nurses, the hospice doctor. They all reiterate that there’s no “right” decision. They tell me they wouldn’t want to be in my shoes. It doesn’t help. Hell, I don’t want to be in my shoes.

Exhausted, I go home and call up my Warrior legion of “Outraged and indignant” supporters. They give their opinions, adding that it’s not an easy decision, and throw in a little outraged indignation for relief.

So far: The anaesthetist is reluctant, the registrar surgeon is on the fence, the ward doctor is gunning for option (a), three nurses say they’d hate to have such decision, the diabetes nurse tells me to follow my gut, Chookie Lou tells me to do whatever feels right, my Warrior Legion offers a variety of angles and possible outcomes, the hospice still feel it’s reversible and that something should be done soon.

I’m confused and even more exhausted. I have zero medical training. How am I supposed to make these decisions? I call the Palliative doctor. I tell her I don’t want them to put her under a general anaesthetic. I tell her my Girl would never survive it. She tends to agree. In the meantime, they prescribe oral antibiotics and keep her comfortable.

Then a break! The consultant surgeon wafts in with an entourage of several young doctors. He looks at my Girl, inspects her shoulder, does a General Custer hand signal for us to follow. We squeeze into a tiny office and he gives his verdict:

He would not put her under a general anaesthetic. (I heave a sigh of relief). Neither would he give her a local. That would be excruciating. He tells the registrar surgeon that the best option is to spray-freeze the spot, nick it with a scalpel, open the wound up, and let it drain.

I’m thrilled. It’s quick, and it’s simple. What’s more, it’s the best outcome. Especially when two days later, a second abscess emerges on the other shoulder. I’m horrified, but at least we have a way forward.

My Girl is moved to another ward. In this room is a chatty woman my age, an elderly lady, and another anorexic girl with a 24-hour watch. I’m spending around 5 or 6 hours a day in the ward, so it’s to my delight, that I find these other three patients are keeping an eye on my girl when I’m not there.

Slowly, but surely, my Girl responds to the antibiotics. She’s spent twelve days in the hospital, so I’m completely thrilled when they tell me she can come home.

The wounds are dressed daily and doing well. She’s come off the syringe driver, leaving her alert and active enough to go back to her program for a couple of hours a day.

She’s almost back to being my beautiful Girl again. Last week, I spoke to my counsellor. I regaled the events above, all the trials and tribulations, the stress, and the horror. And you know what she said?

“You know, it was never your decision.”

I’m like, “What? They asked me what I wanted!”

Yep. Turns out, that’s true. The medical staff might have asked me, but they never expected me to make the decision. And frankly, if I’d made the wrong decision (in their opinion), they could have overturned it. What they were seeking was my buy-in; my agreement to the route going forward.

Who knew? Because I certainly didn’t.

So take heart from a spot of advice from me: If you’re a carer, a mother, or anyone with someone’s else’s life in your hands, you can make a difference with your opinion, you can put your two-cents-worth in. But the final decision is not yours to make.

I took a lot of comfort knowing that. I think you would, too.

1 Comment

Filed under Coming to the End, Parentlng alone, Terminal Illness

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.

1 Comment

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

Happy Birthday, Baby

My GirlDuring the past two months while I was slacking off my blogging duties so I could promote my book, The Candidate’s Daughter, wrestle the yard into submission, make a thousand pots of marmalade, and attempt to clean the house, life went on. Events came and went, we got older one day at a time, and, yes, the Girl had her birthday.

Now, if you’ve read posts like, “A Wonderfully Warm Welcome to Pauline the Elephant,” or “It’s All About the Presents,” you’ll be aware that there are two events in the Girl’s calendar of equal importance. Her birthday is one of them and she’s acutely aware of how close it is.

This never fails to astound me. My Girl has limited communication. She has little comprehension of days of the week. Time has virtually no meaning to her. She cannot read. Numerical values have no place in her world. Her version of Cookie Monster’s signature song begins, “P is for Cookie…” I have no idea what her IQ is. If a person’s IQ were based solely on the ability to identify the proximity, time-wise, of one’s birthday or Christmas, she’d be quids in for a Mensa rating.

Take the week of her birthday. This year, it fell on a Sunday. We invited the Girl’s brother, the Chukker Boy, and the Girl’s uncle, appropriately named Uncle Plunkle, along with his lady, Joey-nana and her daughter. As per every birthday since the Girl was sixteen, we celebrated it at Valentines Family Restaurant.

The good news for me was that because we numbered four or more, and because we were dining on her actual birthday, the Girl was eligible to eat for free. In sixteen years of celebrating the Girl’s birthday at Valentines, it’s the first time we’ve scored a free meal because there were always only three of us. That’s right, Valentines got us back for all those years I got the Girl in as a seven-year-old.

Preparations for the day began weeks in advance. Determined I wasn’t going to be brow-beaten over presents and Valentines for weeks in advance, I avoided any mention of it. Regardless, the Tuesday preceding her birthday we drove past Valentines and I noted the way she peered out the window gazing wistfully at the front entrance, then swivelled to watch it disappear behind us. Nothing was said.

On the Wednesday as we passed, she uttered the word, “Birthday,” and fidgeted pensively.

By Thursday she showed signs of growing agitation—she craned to view the restaurant as we passed, and made small throat noises. That should have clued me in to what Friday would bring.

Howling—that’s what Friday brought. Head back, gob wide howling. I can only assume her internal Birthday clock was running hot. We zoomed past Valentines with her pointing back and yowling, “Valentiiiiiiiiinnnnnnes,” at the top of her lungs, and me yelling, “Not today! It’s on Sundaaaay!”

Ditto with the return trip.

Saturday was no better. All we heard about was Valentines. The day lasted around a month and a half. By the time Sunday rolled around, I would have happily allowed myself to be carted off wearing elongated sleeves tied at the back and a bag over my head.

Sunday opens with the Girl wanting to wear her pretty summer dress with her Pooh Bear sandals. Every year it’s the same. I tell her it’s mid winter and she’ll wear something warm. She acquiesces but only because she knows she has presents in store.

We arrive at Valentines fifteen minutes early. The waitress seats us and asks if I’d like a drink. I check my watch. “It’s a little early,” I tell her.

“We’ve got a lovely Villa Maria chardonnay,” she tells me.

I’m tempted. Nobody else has arrived and the Girl is demanding presents. I tell the waitress to make it a big one, then give the Girl her first present, the jersey I bought her with the doggie print on the front. It’s not a CD or a game. She gives it a disgusted once over and flings it aside just as the waitress returns with my drink.

“Presents,” the Girl is telling me.

I slug the wine back so fast, my taste buds are going, “What the hell was that?” when the Chukker Boy arrives.

“Happy birthday,” he tells the Girl.

“Presents,” she replies.

He slips a rectangular package across the table and she opens it, saying, “Games.”

While she’s inspecting the games, Uncle Plunkle and Joey-nana arrive. They also wish her a happy birthday. They’re also met with demands for presents. They pass a rectangular gift across the table. The Girl tears open the packaging. It contains coloring books and crayons. She’s delighted.

So far, the day is meeting all expectations—games, coloring books and crayons, followed by a slap-up feed. This is a girl who does not appreciate surprises. She is, however, prepared to overlook the disappointment of the doggie jersey, because she’s thrilled with her other gifts.

When all presents have been opened and examined, she wipes out a plate of foods that should never be served in the same restaurant, let alone on the same plate. She eats amazingly well for someone in her condition, but the day has taken it’s toll. We’ve no sooner finished our desert, and she wants to go home. We wave our party guests off, and head to the car, knowing another successful birthday is out of the way.

It’s a birthday I didn’t think she’d see.

It’s just as I plunge the key into the ignition, and say, “Did you have a lovely time?” I realize that her internal clock ticks over.

“Christmas,” she tells me.

“Excellent,” I mumble as I start up the car. “I can hardly wait.”

It’s now August. I have no idea if the Girl will make it to Christmas, so next month we’ll put up the Christmas tree.

What’s the point in waiting?

And at least I’ll have three weeks to decide what to do about the presents …

8 Comments

Filed under Christmas, Parentlng alone, Uncategorized

The Problem With Terminal Illness

Beach 007It seems obvious. But here’s the biggest problem with a long, slow terminal illness – it’s just that. It’s long, it’s slow, and it’s very terminal.

For me, it’s like being behind the wheel of a slow-moving car. For much of the trip, the car has been relatively comfortable. We’ve hit a few bumps along the way, but we’ve recovered, got a grip on the wheel and carried on.

Somewhere in the back of my mind, however, I’m painfully aware that this is very much a one-way trip. The car joggles along at a leisurely pace, but I’m not fooled into thinking this is some Sunday drive. I know we’re moving ever closer to a terrible collision, and there’s no way I can avoid it.

There’s no option for simply veering off this road and onto some tributary that’ll take us to a place of safety. It’s like a narrow pass etched into the side of a mountain. We’re stuck on this course and there’s nowhere else to go. Believe me, I’ve looked. I’ve searched the terrain for offshoots I can steer us up; rest stops I can pull into. And despite the fact that our journey takes place at seemingly snail-pace, I look out the side window and I’m watching the landscape of time passing us by. In January, the doctors gave the Girl six months. I have no idea if it will indeed be a six-month journey. I watched summer go by and now here it is autumn. It could be a twelve month journey. It could be longer.

And here’s one of the big problems with journeys like this – those around us, friends and family, see our days melding one into the next. They think that today is exactly like yesterday and the day before that. Believe me, I’ve fallen into that trap. I’ve woken in the night panicking because I haven’t taken enough photos of my Girl, haven’t spent enough time or sung enough songs with her. Suddenly, I find items on that Bucket and Spade list that probably won’t get ticked off, regardless of how mundane they are.

The Girl wanted to go to Valentines. I doubt we’ll get there. Even if she could sit through a couple of hours at the table, I know she wouldn’t eat because all she wants these days are the meal supplement milkshakes I make her. She wanted to go back to the beach again. I was lax. Life got busy. Then one day, summer was gone. It’s too cold to take her to the beach to play in the sand, and even if it was warmer, it’s getting too hard to take her on my own. This is time we won’t get back again. We’re in a steady descent on this journey and those opportunities are now in the rear-view mirror.

And that’s the other problem with a long, slow illness. Just like me, others forget. They know The Girl is ill. They’ve know for six months, some longer. But they have their lives to get on with. They have sick mothers to tend to, and grandchildren approaching their first birthdays. They have trips away and work commitments and all the usual stuff filling in their days. I don’t blame them. My days are full. People don’t see it. They think I sit home enjoying myself.

Believe me, nothing could be further from the truth.

Take yesterday, for example. The Girl didn’t wake early. She didn’t sleep the night before because she had ear ache. She told me she had sore feet, sore tummy, sore eyes. I got up and gave her Panadol and Codeine and went to bed. When she didn’t settle, I got up and took her to the toilet. When she began to cry that her ears were still sore, I sat up and rubbed them. Then I got a hot water bottle and put on her pillow. She finally settled at some time after one o’clock and I went back to bed.

The next morning, she slept late and I let her. Saturdays are art class. She adores her art class. So at nine, I woke her. She didn’t want breakfast, just the milkshake. I got her ready, which takes more time now because I have to assist her everywhere in case she falls. Showers take longer, dressing takes longer. I finally got her to art at close to ten thirty. She said she wanted roast chicken for dinner so I went to the supermarket and got a chicken for her. I got home at twelve, and the phone call to come and get her came at two.

Her art teacher said she’d been complaining about sore ears, so I took her to the emergency medical centre. Two-hours and $70 later, we got the same diagnosis on the ears as we did on Wednesday when I took her to the doctor – a little wax, but no infection. I took her home. She never ate lunch, didn’t want dinner. I put her to bed early and gave her a milkshake.

I have no idea where we are in this journey. I have no road map to indicate how far along we are.

All I know is that this car has no brakes so I can pull over; it has no horn so I can signal others when I’m scared. There are no lights I can flick on and off to alert people to the fact that I’m in this car alone and I need help.

Please, if you know someone in their own car. If there’s someone near you who’s caring for a loved one in the final stages of their lives, please, just pick up the phone. You don’t have to do anything. It doesn’t even take much time. Just ask them if they’re okay. Ask them how their loved one is. Let them know someone out there cares. And do it often.

You have no idea how much it will mean to them.

3 Comments

Filed under Parentlng alone

Hope and Failure

For some while now, The Girl has been in decline. She’s become more fragile. She walks with a tottering gait, she’s slow to respond, and her appetite has decreased. Thursday night, she didn’t want her dinner. She was doubled over, face practically in her plate, so I fed her. Then I put her to bed. She staggered out at nine thirty, bouncing off the walls, saying she had a sore tummy. I put her back to bed. I worried. She threw up and looked terrible, so I called an ambulance.

Going into Accident and Emergency is a last resort. It’s the decision I take when I’ve exhausted all the other options, when I think there’s nothing else I can do. We arrived at ten thirty. We waited. We saw nurses, waited; saw doctors, waited some more. Finally,  at four thirty the following morning they took her to the assessment ward, and I went home.

Friday morning the specialists arrived. Doctors, nurses, consultants. They questioned, examined her, studied her notes. Just after lunch, they gathered and quietly drew me aside. I stood surrounded by a semi-circle of doctors, junior doctors, diabetes specialists, and they told me The Girl was in the final stages of liver failure. The hospital social worker would be called; the palliative team would be called. I’d have support, I’d have help – whatever I needed.

I burst into tears.

I called my sister, Chookie-Lou. She burst into tears. I called the Chukker-boy. I told him The Girl was in “the final stages of liver failure….” which was then followed by a series of muffled squeaks because I dissolved into a flood of tears. He said he was leaving right now. I hit redial and called him back and told him we weren’t talking last rites here, that she wasn’t passing over right this minute. He said he’d come anyway.

We sat by her bed. We met with the social worker. I told her I wanted The Girl to come home. The Girl would not want to spend her last days in a hospital. The Chukker-boy told us The Girl would probably bounce back. We gave him grim smiles and nodded like we understood he was trying to see the bright side. Like he was deluded but we’d humor him. The social worker told me I’d have support, I’d have equipment; everything I needed was at my disposal. So I went home.

I called The Girl’s art teacher/respite carer, told her the news. She burst into tears. I called her program manager, told her. A succession of calls went out causing a wave of people all over the North Shore to burst into tears.

I returned Saturday morning. The Girl was sitting up in bed. I helped shower and dress her. She wished the nurse Merry Christmas. I told her Christmas was over. She remained hopeful.

She requested her Playstation. She requested a movie and a haircut, then polished off an enormous meal. She watched The Smurfs and nodded off for twenty minutes. Frankly, she was looking pretty chirpy for someone at Death’s door.

She ate her afternoon tea, colored in three coloring books, and demanded Pokemon. At four o’clock, I kissed her goodbye, told her I missed her. She gave me a cursory wave and carried on coloring.

By the time I got there on Sunday morning, she’d eaten breakfast and had morning tea, gulped back a cup of tea and wished the entire ward staff Merry Christmas. I told her it still wasn’t Christmas. She still remained hopeful and ate lasagne for lunch. I asked her what she wanted – what she needed. She said, “More lasagne.” I told her there wasn’t any more. A nurse came and took blood. The Girl wished her Merry Christmas. I reiterated to her that Christmas was done and over, that her birthday was next in line. I told her visitors would come today. She queried the present situation. I told her not to get her hopes up.

When I left tonight, she was sitting up coloring her Dora the Explorer book and looking slightly miffed because the expected presents never materialized and I had confiscated the computer which, by rights, should be hers to watch a Smurf DVD on. Boredom is threatening. Hospital life is suddenly not looking quite so terrific. She wants her Playstation. She wants that haircut and to go to the video store.

Tomorrow will be interesting. The palliative team, the diabetes team, the ward staff and doctors will converge to plan the way forward. The Girl will probably wish them Merry Christmas and shock the hell out of them. She looks better than I do. I’ll tell them not to be too surprised, that The Girl has had more lives than a bagful of bloody cats. Then I’ll take her home.

I know this won’t last forever. I know that one day, probably in the not-too-distant future, we will need the palliative team and the social worker and all that support so I can keep her at home. We’ll be calling people in succession and causing them to burst into tears. I’ll be preparing myself for the worst, for when The Girl is slipping away from us. I don’t think today is that day. I think this has been a dry run. But it’s made me realize some things:

  • It’s made me realize just how much I’ll miss her
  • It’s made me see how much my life will change
  • It’s given me a glimpse of how much she brings to my life and those around her
  • It’s brought me to appreciate the time I have left with her
  • It’s reinforced for me what a wonderful, special and amazing little person she is
  • It’s made me realize that the time I’ve spent with her has been worth every minute; that my life has been enriched by her; that, given the choice, I wouldn’t have done things differently
  • It’s made me see once again just how much I love her

And who could want more?

 

 

18 Comments

Filed under Parentlng alone, Uncategorized

OMG! I Forgot to Climb the Corporate Ladder!

When I was twenty-three I realized I’d forgotten to get a University degree.

To-Do List

So I studied hard, but it turns out that there’s a trick to passing exams and I didn’t know that trick so it didn’t matter how much I knew or how hard I worked, I was still a straight B- student. But that didn’t matter because…

…I realized I was doing Science when I should have been doing Marketing. After all, that’s where the money is, so when my marriage broke down and I took the children and moved to Auckland I changed my major. But then I realized I’d forgotten to climb the corporate ladder.

…So, I got a job in retail and worked hard, and became a self-motivated team-player with a can-do attitude and with my newly-acquired knowledge I ran a survey and gathered information to show the company how they could implement marketing campaigns to target specific market segments – which they hadn’t been doing. But then I discovered that all my work wound up with some self-motivated, team-playing, Management Trainee’s name attached to it and I’d been forgotten. But that didn’t matter because I knew management would finally notice me and I’d get my foot on the next rung of the corporate ladder…

…which didn’t happen. So, I left and got a job with another company because all I had to do was work hard and do all the right things so I could get a foot on that corporate ladder, then I’d be able to afford a nanny and a fabulous house and work all the hours to pay for it, but then I discovered the Boys Club had taken the next few rungs out of the ladder and there was no way up for me there, so I left…

…and put The Girl into Monday-to-Friday care because I knew that if I could only earn enough, I could get that nanny and buy that house and then we’d be happy but I was becoming disillusioned by all these Boys Clubs and those younger, self-motivated team-players with their can-do attitudes coming up through the ranks, so…

…I started my own business where I worked day and night and bought an apartment which was gorgeous and swank, and then I bought a rental property because I was an Entrepreneur, Darling, I was an Investor, Sweetie Sweetie, and I had mortgages and negative gearing, don’t you know, but time was going by and because I worked all week and looked after The Girl all weekend and every holiday, I was permanently shattered. But I kept going, until…

…the economy took a dive.

And things got tough. So…

…I sold the business and took a job that just didn’t pay quite enough, so things got even tougher. I was forever broke, I was forever tired, I was forever miserable. I had a job I hated, mortgages and bills that were killing me and I felt trapped.

Then Number One Son moved out of home. I missed him more than I can say. Then I discovered The Girl was in her last year at school, and I had no idea where she was going next.

Then I lost my job.

I panicked!

I didn’t have that degree; I hadn’t climbed the corporate ladder; I wasn’t an entrepreneur and I hadn’t become successful at anything. Worse yet, I hadn’t even been a decent Mother.

Reluctantly, I sold my beautiful apartment. I moved into my crappy rental house in a scummy area which was all I could afford. The Girl came home. I lived on welfare.

But then I remembered something – I remembered I wasn’t dumb! I remembered I’d learnt a thing or two! So…

…I got a part-time job and worked hard and did my scummy house up and scrimped and saved and paid every spare penny off the mortgage. I ran my household like a business and sold my newly done-up house for a tidy profit and built a beautiful new home especially for The Girl…

…which is where we live now. We scrimp and save; I grow vegetables in our garden and wear clothes with tags that say Made In Bangladesh inside the collar.

But I learnt some lessons through all this: It turned out my beautiful apartment was a leaky building, so I learnt I was lucky I didn’t keep it. I learnt that I don’t need a degree to do what I do; that with just some patience and a few brains, I’m more entrepreneurial than most people ever get to be; that happiness doesn’t come with a large pay-check and that caring for someone else really matters. I also suspect that, for me, at the top of that corporate ladder was a short path of misery to an early grave.

No matter how much rain there’s been, the sun will surely shine again. And sometimes, when you’re tired of swimming against the current, there’s a point when it’s smart to turn around and go with the flow.

Like I did.

Note: This is a long post and I thank you for hanging in there. I’d love you to stay with us so please, hit the follow button)

3 Comments

Filed under Parentlng alone, Uncategorized

Maybe I’m Crazy

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

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

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

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

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

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

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

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

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

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

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

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

Learn to love it.

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

4 Comments

Filed under Parentlng alone