Monthly Archives: December 2012

Sayonara, 2012.

There'll always be, for you and me...

There’ll always be, for you and me…

Well, here it is New Year’s Eve. 2013 is just around the corner. My dad has been gone almost eight years; my mother-in-law, Jesse, one of my closest friends and The Girl’s greatest supporter, two and a half. You get to an age when you’re measuring time by who you’ve lost.
This year has brought challenges and tears; heartache and frustration. It’s also brought some great things and people into my life. This is my chance, in no particular order, to acknowledge them.
• Cat Connor: My writing this year has brought me in touch with people I would never have had the chance to meet. The amazing Cat Connor is a thriller writer based in Wellington. I hunted her down on Twitter and read two of her Byte series books. Cat gives me hope. She’s an incredible writer. Her narratives make your heart leap into your throat. I have no idea why she isn’t on the New York Times best seller list. She’s also become my go-to girl for anything related to guns. What more could you want in a friend.
• Kate: I used to live next door to Kate. I had no idea what an amazing person she was then. After I lost Jesse, I was sitting at a cafe one morning, close to tears. Kate came over and asked me to join her. I said no. Kate never took offense. She gave me space, and later, still extended a hand of friendship to me. That’s her beauty. She’s supportive and wonderful, and one of the truly amazing people I’ve connected with this year.
• Sara J. Henry. Dear God. I met Sara through a writers’ site and she took me under her wing. I read her fabulous book, LEARNING TO SWIM, and discovered what solid writing and serious editing can achieve. Sara took time to go through my book, THE CANDIDATE’S DAUGHTER, I don’t know how many times, pointing out errors, telling me where I could make it better. I cannot thank her enough. When her new book, A COLD AND LONELY PLACE comes out next year, I’m first in line to buy and devour it.
• Jenny Milchman. Dear God, for a second time. I ended up on the phone with Jenny when I got into a complete conniption over agents. She lives in New York and doesn’t know me from a bar of soap. And yet she took time to guide me through issues, give me the most incredible advice, and finally, with her wonderful friend Judy, create opportunities I could never have imagined without them. Jenny’s book COVER OF SNOW comes out in February. It’s on my list along with Sara’s. I suggest you look out for it.
• Nikki. We met last year at the ThrillerFest conference. She’s a mom, an ER doctor in Indiana, an amazing writer. She makes me laugh, she frequently astonishes me, she constantly makes me grateful the conference organizers sat us together. I can’t think of a friend and writing buddy I’m more grateful to know. I love her generosity, her spirit, her incredible vitality. Nikki has just scored her first agent. I’m so thrilled for her. When her book comes out, I’ll be first to shout it from the rooftops.
• My darling Chukka-boy, his gorgeous wife, and my beautiful grandson. Good Lord. I’m a grandmother. Where has the time gone? Chukka-boy, we’ve been through some stuff, you and I. But you’ve kept me young. Probably a little crazy as well, but the young part I’m pretty grateful for.
• The Girl. Man, where would this blog be without her? She’s a little star in her own right, and she doesn’t even know it. She probably doesn’t care. I have no idea how long I’ll have her for. She was never meant to last this long. I’m blessed for the lessons she’s taught me, the love she gives me; the life we share. Maybe not so much for the coffee stains. You can’t have everything.
• Last, but not least, my wonderful, amazing sister, Chookie Lou (and yes, I actually call her that). Honey, it’s been a long road. We’ve known each other for fifty-six years. Not all of those years have been easy. The last few have been better. This one has been amazing. We connected in the ways that sisters were meant to connect. We’ve discovered ourselves reflected in each other; we’ve talked to, held, and supported each other. You know me better than anyone on this planet. I love you for your kindness, your generosity of heart, for your love. Some sisters never find this place. I’m more grateful than I can tell you that we did.
People may say to me, “Man, 2012 was a tough year.” I say, “Yes, it was. 2012 sent me some trials. It sent me some hardships and quite a few tears. But when I look around, the journey was worth it. And look what I gained.”



Filed under Uncategorized

2012 in review

The stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,300 times in 2012. If it were a Dreamliner, it would take about 5 trips to carry that many people.

Click here to see the complete report.

1 Comment

Filed under Uncategorized

A Wonderfully Warm Welcome to Pauline the Elephant

Pauline the Elephant Celebrates

Pauline the Elephant Celebrates

Yes, we have a new family member and it’s my pleasure to introduce Pauline the Elephant, and extend to her a warm welcome into our home. So with no further ado, here it is:

Dear Pauline,

Yes, here it is two days after Christmas, and I have yet to formally welcome you into our small but select clan. I hope you have a wonderful, long, and happy life here. Statistically, that’s highly improbable. However, let’s keep to the agenda and move quickly along.

First of all, I apologize for the delay. This year I was responsible for the family festivities which included Christmas dinner. Not a good excuse, I agree, except to say that, as usual, it was a tough day. Pictorial proof would have been pasted below showing an uncensored snap of me taken on Christmas night after a hard day of cooking, cleaning, entertaining, then happily imbibing a total of one bottle of bubbles, two glasses of Pinot Gris and an unquantified measure of Chardonnay – except I couldn’t figure out how to put a second picture in. Sorry.

Secondly, no, it didn’t escape my attention that you weren’t the first present The Girl unwrapped. I, too, was painfully aware of the speed and skill with which she navigated the gift pile then zeroed in on that PlayStation game, plucking it from the pile, and saying, “PlayStation game. Whoa! Turn around Crash!” Neither was I altogether oblivious to the pain in your eye when she returned to the pile to select the CD, excitedly squeaking, “CD, Pat Benetar,” before the wrapping was even halfway off.

My heart went out to you. Take whatever solace you may from the fact that it wasn’t Pat Benetar.

That aside, you finally made your grand entrance in startling form when I shook you from the bag. I apologize for the head-plant, by the way. You’re a three foot elephant. That bag was clearly unsuitable for someone of your size and stature. The staff have been spoken to.

So, a warm welcome. Glasses raised. Cheers all round.

Now, before we go on, you’re possibly wondering at the name Pauline. I must confess The Girl didn’t come up with it entirely on her own. It took a little probing, a little prompting, a little soul-searching before we settled on Pauline. In fact, we’d been hearing about this unknown – perhaps imaginary – friend named Pauline for some time. So, it was with a measure of relief that you happened along when you did. Now the mysterious Pauline has finally been personified. Or elephantized, if you will. As for the name, don’t worry if you find it slightly bizarre for an elephant, you’ll get used to living with an utterly ridiculous name. The Chukker-boy did.

Now, painful as it is, it’s imperative I mention a few house rules for your stay here. There aren’t many, but they’re vital to a happy and well-run household. First up:

1. Do not taunt the dog. It can only end badly.

2. The Girl’s bed is out of bounds. I recently had to endure the heart-rending chore of thinning the ranks of bedsitting toys and casting them to the far reaches of the closet. Only a privileged few get to share this domain with The Girl. At the time of writing these are Lilly Lion, The Dead Cat, Boo Boo the Bunny Rabbit and Lamb Chop. You may make the transition to the A Team – the elite of Lea Family Toy-dom, however, the standard wait time is around fifteen years and survival rates are not typically encouraging. Again, sorry.

3. Toy washing day is Friday. Refusal to comply with instructions and submit to a linen bag may result in torn seams, matted fur, and, in your case, a twisty trunk.

4. Dusting is on Saturdays. This usually entails anything from a mild shake through to whacking against the dresser, depending on activity levels of the toy involved. It is advisable to keep a good supply of Panadol on hand for afterwards.

5. The booze shelf in the pantry is also out of bounds. (I’m prepared to overlook this one transgression captured above because of the delay in the welcome letter. However, don’t let it happen again)

So, with those few formalities out of the way now, I would like to take this opportunity to extend a warm and hearty, “Welcome,” to you, Pauline. We’re thrilled to have you in our home and in our hearts.

I hope you’ll find your stay with us long and prosperous.

The dog certainly has.


Filed under Christmas

It’s All About the Presents

The Sooty Party Pack

The Sooty Party Pack

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

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

It’s not the dog.

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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas, my little cherry bomb.


December 21, 2012 · 2:52 am

Moments I’m Not Proud Of

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

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

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

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

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

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

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

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

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

Don’t be fooled.

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

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

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

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

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

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

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

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

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

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

Me: “She didn’t eat her greens.”

Me: “She told me a lie.”

Me: “She ate too much ice cream.”

Me: “She asked too many questions.”

Me: “She gave me backchat.”

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

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

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

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

These days I barely even notice them.

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


Filed under The Joy of Living With a Disabled Child

Coming, Ready or Not

The Girl at six months in her doll's dress.

The Girl at six months in her doll’s dress.

The Girl was 3lbs when she was born. There was a great deal of speculation and, I suspect, a certain level of guarded excitement in the hospital genetics department when she came along. They hadn’t seen anything like this. They took samples of The Girl’s blood, The Husband’s blood, my blood. They screened it, tested it, did whatever, checking to see whether maybe one of her parents was responsible.

They came back with nothing.

Next, they sent out for photographs of her chromosomes so they’d have some idea of what they were dealing with. Thirty-one years ago, you didn’t get your DNA snaps overnight. Thirty-one years ago, you had to send overseas to get them.

It took six weeks.

When they came back they were gray, fuzzy monstrosities that looked like x-rays of ribs taken by the junior radiographer on a bad day. They didn’t give the information you get today. What they did tell us was that The Girl had a number one ring chromosome – a mutation in one of the DNA strands where the top and the bottom of the chromosome had been knocked off, and because they were ‘sticky’ they closed together to form a loop.

A condition reported in only six other cases. None of which were in New Zealand.

That alone told me that no budding medical student in his right mind would be basing his thesis on The Girl’s condition anytime soon because everyone knows it’s prudent to base your thesis on something relatively common and well documented. That way there’s plenty of information at hand, and tons of willing parents to interview.

After one week in the hospital, I had to go home without her.

Snow fell. The world suddenly became a bleak and foreign place. Halfway home, The Husband broke the tense what-the-hell-do-we-do-now silence, saying, “We could just leave her there.”

Without even looking at him, I said: “We’re not doing that.”

And we drove on.

I have no idea whether he was serious. I only know that after a week of hell – of discovering the child I’d been expecting never existed; that in her place I had something broken – something that I didn’t want people to see for fear of their reactions; that after a week of feeling like I’d been thrown into a tornado I couldn’t find my way out of, a week of no sleep, no appetite and a diet of hourly adrenaline blasts – there was one fleeting moment in that car when the possibility of walking away – of turning my back on all those terrors, all that pain, all that heartache, looked very attractive.

That moment passed in one split second.

At home I fell back into my daily routine feeling hollow and lost. It was as if leaving The Girl behind in the hospital had torn a huge hole in my chest; as if every breath escaped out between my ribs, leaving me perpetually sucking in air; perpetually strained.

Depression set in. People avoided me. I lost weight, I lost my friends, I lost hope.

Twice a week, I rallied enough energy to catch the 8 am bus for a two-hour trip back to the hospital to see The Girl. At 4 pm, I turned around and caught the bus back again.

Number One Son spent those days with a friend. I don’t remember telling her how much that meant to me. I hope I did. If I didn’t, I hope she knows.

On the days in between I froze my milk in a jar, wrapped it in brown paper, and took it to the bus depot where the driver gave me a sympathetic smile, then tucked it safely down beside his seat where it stayed until he delivered it to the hospital.

After two long months, sixteen or so bus trips, endless hours of staring into an incubator, and several hundred miles gazing out a bus window at a frozen landscape I was beginning to hate, The Girl finally came home.

She was 4lbs.

Was the hard part over? Hell no.

Fortunately, I had yet to discover that. I got on with life and tried to make everything better. Did I regret my decision to go back to the hospital and get her? Not once.

Were there moments when I wanted to run away and leave it all behind? Numerous!

These days I look at my Girl and I see someone beautiful; someone sweet and funny and loving.

It took me twenty years to come to that, to forgive myself, forgive The Husband and find the way forward. It was worth every minute.

So what did I learn out of all this? I learned that it doesn’t matter what decisions you make along the way; what road you take, when you hit that fork in the road, make sure your choice of path is one you can live with.

After that, don’t look back. Because whatever you did, whatever you chose, it was the right decision at the time. And no one lives your life but you.


Filed under The Early Days