Monthly Archives: January 2013

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.

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The Bucket and Spade List

Pauline the elephant's second cousin twice removed.

Pauline the elephant’s second cousin twice removed.

It’s taken some time to absorb, but slowly, I’m coming to terms with our situation. On discharge from the hospital, all the relevant services were notified and one by one various supports are going into place.

From the notes sent on from the hospital, they’ve estimated we’ve got around six months. Why, I ask you, am I surprised? They told me two and a half years ago The Girl had around two years left. I have no idea where the time went. Now that the first signs of that sunset are filtering in, I’ve decided we need to compile a Bucket List for The Girl. Due to the nature of the list, we’ve termed it our Bucket and Spade list.

Of course, this will not be your usual Bucket (and Spade) List. The Girl’s aspirations would not be described as grandiose. It’s unlikely we’ll be strapped together and leaping from a plane as it banks over Auckland Harbour. She won’t be teetering on the edge of some aerial platform with a bungee cord tied to her ankle, hesitating until someone elbows her in the back. We won’t be worrying about how much public liability insurance we’ll need for a lightning circuit around Pukekohe race track in a flame-painted V8 supercar. In fact, her requirements are pretty mundane. This bucket list should be a piece of cake.

Or so I thought.

The first on the list was a trip to the zoo. We did that during the holidays. After the bout of what I suspect was food poisoning from the lunch we bought there, we probably won’t repeat the experience any time soon. But it’s done, checked!

Next, she wants to go to the beach. My family used to have a beach house a couple of hours north of here. That’s where she wants to go. She wants to sit on the beach and build sandcastles and paddle in the water. No problem. She’s got the date indelibly etched into her memory and her bucket and spade practically super-glued to her hands. Weather permitting, they’ll be prized from her grasp and put to use this Friday.

For dinner yesterday she wanted pumpkin soup. Did I mention this list wouldn’t have us dodging bullets or careening down raging rapids in a thimble-sized kayak? I did point out earlier that The Girl’s requests are unlikely to go down in the Guinness Book of Records as the Bucket List least likely to be completed due to the imminent dangers it throws at us?

She wants pumpkin soup? She’ll get pumpkin soup. If it was me, I’d have requested something a little more adventurous. But this is not my list. So I went out and bought pumpkin. Pumpkin at this time of year is only rivalled in price by gold bullion and perhaps Saudi oil – and then I’m not so sure about the oil. Crown pumpkin is $4.99 a kilo. A whole pumpkin could set you back $12. I’m wondering if the pumpkin plants that popped up in my garden could be an unforeseen road to future riches. Although, knowing my luck by the time the bloody things are ripe, pumpkins will be a dollar a dozen. Literally.

Never mind. I’m determined to make her last few months as happy as I can. I get the pumpkin. I peel it, chop it, boil it. Finally, with a flourish worthy of Jamie Oliver, I announce that she’s got pumpkin soup for dinner. She throws back her head and howls because now she wants macaroni cheese. She also wants lemonade and her Queen CD playing. She wants Crash Bandicoot (the one that’s so scratched it won’t load), and she wants to go to the supermarket to buy lollies. I’ve got requests coming out of my ears. I’m getting demands that are making me wonder what what the view from a parachute at three thousand feet looks like. I’m also detecting a certain level of frustration moving in – for both of us.

It’s time to slam on the brakes here.

The Bucket and Spade list already mirrors her Christmas list. She wants presents. She wants to go to Valentines. She wants a Smurf DVD, a Happy Meal and a serving of egg salad. She wants dumplings and telephones and crayons. She wants everything and she wants it now! My Mother-of-the-Well-of-Everlasting-Patience outfit has developed a few creases. There’s a fist-grip stain on the front and one or two rips in the side seam. If she howls once more because I held her up by offering her a milkshake when she knew there was a present waiting on her bed, I’m in danger of whipping off my halo and firing it across the bloody room.

So, I’ve decided to take a step back. I’m not going to try to fit a lifetime of wonderfulness into these last few months. We’ll take each day as it comes. I’ll buy her a present every now and then, wrap it in pretty paper and leave it on her bed. We’ll have a Happy Meal every couple of weeks (okay, so maybe not that often), we’ll thrash her new Queen album, and we’ll take her bucket and spade to the beach. We’ll do our best to make every day we’ve got even happier than the last. And I’ll know that whatever happens, I’ll have done my best and we’ll both have enjoyed every minute of it.

And after all, isn’t that what life is all about?

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The Next Big Thing

We’re home. At last. I’ve got people calling every five minutes offering support and help. I’m going to go into that in the next blog. In the meantime, I met a terrific writer who offered me the chance to talk about my writing. But before I go on about me, let me take a second to talk about her.

Nicole Hayes wrote a book called, THE WHOLE OF MY WORLD.

It’s a young adult story about a girl whose relationship with her father becomes strained after her mother dies, and the confusing relationship she develops with a football star coming to the end of his career. It comes out later this year, published by Random House in Australia. I cannot wait to read it. You can read more about it here: http://melbournemusing.blogspot.co.nz/

Nicole kindly offered me the chance to join in this blog meme and talk about the book that I’ve written. According to the format of this ‘tag team’ there are a number of questions that each recipient answers. So with no further ado, here goes:

1>  What is the working title of your current/next book?

The book I wrote two years ago is currently titled THE CANDIDATE’S DAUGHTER. I say currently because that could change. 

2)      Where did the idea come from?

It occurred to me that the worst thing a parent could endure would be the abduction of their child. Then I wanted to add in a further complication of the child being disabled. It added an emotional layer to the story. 

3)      What genre does your book fall under?

This was a weird one. I had someone tell me that on the one hand, I had the pace and tone of a mass market thriller, but with aspects of a literary suspense thrown in. It’s hard to classify. The story is told from the perspective of Kelsey, the streetwise girl who kidnaps a disabled child, then abandons everything and everyone she knows in order to save her; and Elizabeth, the mother who must overcome her failures as a mother and sets out to find her daughter before it’s too late. This is not the story of a kidnapped child. This is the story of two women who walk away from their own broken lives to search for a stolen child, and in doing so, rediscover the strength they’ve lost along the way.  I’d say it straddles the line and winds up falling into something between thriller and women’s fiction. 

4)      What actors would you choose to play the part of your characters in a movie rendition?

When I wrote THE CANDIDATE’S DAUGHTER, the singer Pink was the inspiration behind my character Kelsey. Others may disagree. I never had actors in mind when I wrote this story. If it ever came to a movie, I’d probably be happy with Jennifer Lawrence as Kelsey. Who wouldn’t? 

5)      What is the one-sentence synopsis of your book?

A mother faces up to her rejection of her disabled child and sets out alone to find her, unaware that the young kidnapper is doing the same. 

6)      Will your book be self-published or represented by an agency?

I’m currently searching for an agent. Who knows? 

7)      How long did it take you to write the first draft?

The first draft took around five months. It was a whirlwind affair and at no time did I doubt the story. I was enormously fortunate to catch the eye of Sara J. Henry who took me under her wing and helped me address some areas that weren’t working, and to get it into shape for submission. 

8)      What other books would you compare this story to within your genre?

I have no idea. No book is unique, but because this is a strange mix because it has elements of a fast-paced thriller, alternating with literary suspense. 

9)      Who or what inspired you to write this book?

My daughter – The Girl. She is my muse. Always will be. 

10)  What else about the book might pique the reader’s interest?

This story has a lot of heart. It examines some of the emotional rollercoaster rides I’ve faced as the mother of a disabled child. There’s a lot of me in it. 

Here are some more writers to watch out for: 

Nikki Stuckwisch: Nikki is an ER doctor, a new medical thriller writer and a fantastic lady. She’s recently been picked up by an agent who knew talent when she saw it. Nikki writes a blog about things medical, and you can find it here: http://t.co/Sv1kxLRH 

Cat Connor: Cat is the author of the SSA Ellie Conway crime thriller novels. Her books are available in paperback and e-formats. Cat writes amidst the chaos of children. She constantly wonders why she’s always running out of duct tape. http://catconnor.blogspot.co.nz/ 

PJ McIlvaine is a screenwriter/writer/journalist/blogger/baker who has won the Tour De France 15 times in a row.  In her spare time which is increasingly spare, she can be found huddled in a corner, babbling incoherently clutching a headless Barbie. Find out more here: http://15milliondollarbunny.wordpress.com/

 

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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?

 

 

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Under the Influence

Turn around, Crash, you're going the wrong way!

Turn around, Crash, you’re going the wrong way!

I wrote a book called THE CANDIDATE’S DAUGHTER in which I drew inspiration for one of the characters from Pink – not the color, but the singer. Her music, her look, her gutsy no-nonsense attitude inspired many of the traits of one of the female protagonists.

Not all inspirations are as positive. Or as endearing.

The Girl draws inspiration from her favorite music, movie characters, loved ones and acquaintances. Which can make for some interesting interactions.

According to The Girl:

The song You Can Leave Your Hat on refers to the little felt hats worn in the operating theatre just before you go under the anesthetic.

Girls Just Wanna Have Fun describes the personal freedom expressed by tipping your coffee all over the breakfast table.

A Telebubby chuckle is the perfect response to the maternal outrage resulting from the coffee-tipping incident.

And an outraged howl scores a 100% success rating in securing a replacement cup of coffee, regardless of the number of threats that have been made to the contrary.

“Help, help, it’s a giant!” not only pays homage to a particularly memorable episode of the Smurfs; but it’s also the perfect way to greet people at the mall.

“Don’t play with steam” and “Don’t play with plastic” have origins that are yet to be defined. But when we find out what those origins are, they’re sure to be interesting.

“Sex!” (from Pat Frikkin’ Benetar’s Stop Using Sex as a Weapon, and The Girl’s single identifiable word from the lyrics) is the ideal thing to shriek while you’re trolling the music shelves at The Warehouse.

“Whoa! Turn around, Crash, you’re going the wrong way!” isn’t just a cool thing to say, it’s also a veiled boast about The Girl’s prowess at Crash Bandicoot on her PlayStation.

“Throwing nappies (diapers),” is clearly a competitive sport played out on most episodes of RugRats, however, regardless of how thrilling it sounds, The Girl has yet to find anyone willing to indulge in the fun with her.

“Don’t speak to your sister like that, Chukker-boy,” is the longest sentence in The Girl’s repertoire, and was learned after repeated viewings of a family video. The time taken getting the words in the correct order and the exact inflection was well worth the effort.

Dora the Explorer’s high-pitched and annoying vocal range can be replicated. For perfect results, however, the speaker must measure under four feet tall and boast a ring number one chromosome.

The Girl has perfected the sound of a cat’s meow, a creaking door, and the sound of the ambulance in an episode of Bananas in Pajamas.

Her almost flawless simulation of dry-retching has been responsible for a number of delightfully horrified looks from startled dinner guests during the main course.

There’s nothing more surprising than an unexpected Whoop! Or more satisfying.

Mimicking people at her program is the greatest compliment she can pay them, as well as being an enormous source of amusement.

“Push X,” fixes everything and was learned while spending an unspecified number of hours playing Playstation. Unfortunately, she never progresses from the first screen regardless of how many times “X” is pushed.
“Yowdy yowdies,” is not only a gratifying war cry, but also refers to a compilation of traditional Maori songs. Don’t even ask.

A Poster (rhyming with foster) refers to an entity of undefined size, shape or origin. The girl regularly makes mention of “Dog posters,” “Jelly posters,” or even “Poster posters” which may, or may not be dual personalities.
Again, if you’re looking for specific influences, don’t ask.

The chorus of INXS’s song Elegantly Wasted has been personalized to, “Oo-oo, Mummy’s Wasted,” and makes for an interesting conversation starter.

When you live in a small world, it’s the small things that really matter.

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