Garden 15: October 29 - Almost Hallowe'en

From my sewing room, Thursday, October 29, 2015. My windows are filthy

Here's a rare thing: I am writing this by daylight. It usually happens in the still of the wee morning, pitch black outside, dim lamp, music low. Silent in the house until my daughter wakes to find me: thump thump thump on the steps, tunk tunk tunk through the kitchen. She wavers in the doorway, a groggy angel in her plastic corset and long, stretchy undershirt to her thighs like an 80's Madonna costume gone 101 Dalmations. Back to bed, Love; I'll be up soon.

Dramatic reenactment;
I made like Cinderella, but the birds flew away 

But today I am peering into my back yard - the sun and the yellow leaves of the lilac shining through my maple tree, a stunning, glimmering red. The patchy lawn has been cut, the leaves have been raked - twice! I've put down grass seed, dug out the worst-offending and saddest of the garden plants: a runty lilac, a gift from a friend on the occasion of our first miscarriage, that, no matter where I put it, or how much love I could spare it, has never bloomed. Having exhausted every single possible location for it in the yard - front and back - after 15 years Sad Lilac has finally found a new home in the yard of a neighbour. Maybe this spring I'll finally find out what colour it's meant to be.

There were seven hostas, too, that never delivered. They were orphans from various neighbourhood gardens, on the brink of destruction, and I gave them a fair chance - 3 or 4 years. Time to move on; take your slugs and snails with you, please. They now reside in the garden of a friend of the mother of one of our two wonderful respite providers.

3 birds are splashing in my slimy-bottomed bird bath, throwing water as far as I never imagined a tiny bird could! I'm so happy birds like my garden.

Planets and stars, classes, therapy and specialists appointments aligned today to give me this gift: 5 consecutive daylight hours, obligation-free, to do whatever I dang well please.

Hot air popper - a gift to me and my sister from our grandmother, 1982. Still works great. The faux Tupperware contains two red wrigglers from the Master Recycling course 

The washer is washing. The newly-repaired dryer is drying. The milk has been bought. My daughter's stinky brace is soaking. One toilet has been scrubbed. There is bacon in the oven - one of the glues that bonds me and my son together. I am in my sewing room: Dylan, alphabetically, loud; hot tea; cold water; fuzzy blanket; laptop and guitar. Today I go one step further: a whole batch of buttered popcorn, all to myself. I edit photos and write, sing, dance and eat, cast my mind sideways over some little detail that won't be ignored. The only thing that could be better? If my windows weren't so dirty!

Hallowe'en falling: cool leaves, costumes, and decorations. Which pumpkin houses will we visit this time, the one night it's OK to knock on doors and see who lives where? My daughter will ask, "Do you have a dog? Does it like kids? Can I pat it?" If there's no dog, a cat or a fish will do. Her interest is genuine, and usually good for an extra handful of treats.

While we follow our daughter door to door, our son will join a group of peers, on a mission to collect as much junk food as possible on what is likely his last trick-or-treat.

Lemonade lollipop, tears; I try to keep her safe

Pre-Prader-Willi syndrome, I loved Hallowe'en. Now I dread it. Hallowe'en sucks for people with PWS. As my daughter put it yesterday, after a well-meaning teacher offered her a lollipop, if mummy says it's OK, "I am so angry with you! I want to crack my head open! I don't want to have Prader-Willi syndrome any more!"

As she explained to the mother of another patient in the MRI waiting room last week, "Prader-Willi syndrome is a problem where you eat too many candies and you get in trouble from your mom."

I hate having to be that mom. The one who won't let her eat a lollipop. The one who wants to ban junk food in school and rains on everybody's parade. Pregnant, I imagined baking with my kids, decorating gingerbread houses, planning special birthday cakes. What could be more fun - the way to the heart, and all? But nobody needs that junk, least of all someone with PWS.

Limited to a calorie count half that of her peers, there's not a lot of room for empty calories. Treats are reserved for very special occasions: a whole cupcake on her birthday, with all of the icing intact. Two candies at Hallowe'en, and all the gum in the bag. I'll throw in an extra or two in the days that lead up to the big night - like this lollipop. Her concern: she had never tasted a lemonade lollipop before! Her chance might never come again! The compromise, after tears on both sides, and hugs as tender and tight as possible when wearing a rigid, plastic, body brace: we would place the sucker in a Ziploc bag and smash it on the counter. The piece attached to the stick would be hers.

Sometimes the Great Pumpkin makes something from the good bits of what she confiscates

When she became old enough to notice her candy missing the next morning, I invented the Great Pumpkin - a benevolent, health-conscious gourd that switches out bags of Hallowe'en candy for a gift - a good one. Last year my daughter awoke to a blue Furby that eventually became so nasty he had to be hidden in a closet, where he remains.

"Be careful!" she warns, any time the door is opened.

The year before it was a toy cash register, complete with scanner, credit card, and key. Before that: a nifty child's washing machine with sudsy water in the door and a spinning agitator. I would have loved that as a kid, to go with my child-sized clothesline and pegs. She wasn't so taken, and donated it to her kindergarten class, where she played with it far more than she had done at home.

This year the Great Pumpkin took orders: an American Girl doll, which I found, barely used, on Craigslist. I'm looking forward to making outfits - a miniature twirling nightie, and a plastic body brace.

The way to a boy's heart: the BLT

For our son, the Great Pumpkin generally brings Lego or Nerf guns. This year, however, he requests NO visit from the Great Pumpkin. This year he wants the candy. This presents a whole new challenge. Discussions have begun around how much candy is reasonable, where it will be kept, and when and how it will be dispensed. I'm inclined to agree on a daily limit and leave it up to him, as long as he is discrete - though she will be happy with her American Girl doll, his sister needs no more reminders of what she can't do. But that's just me. Stay tuned.

Hallowe'en candy will be gone soon enough. Next up: Christmas candy canes, Avent calendars, all that baking!, Valentine's Day chocolate and Easter - more chocolate, still. Then just the usual: classmates' birthday treats to deal with, nose-height candy at Safeway checkouts, haircut lollipops, kind strangers who want to feed my kids. It's everywhere!

My five hours passed. Picked up my daughter from school; Speech and Language Pathology, dinner, mend vampire cape and son's favourite flat-brimmed hat, bedtime. Somewhere in there it started raining. If it keeps up there may be much less candy to contend with. I'm finishing this post in the quiet of night. Thump thump thump, tunk tunk tunk - here she comes. Back to bed, Love; I'll be up soon.

October 23, 2015 - Meatballs, Raspberries

A quick one, I hope: got to get up early for tomorrow's Our Social Fabric sale - the last one at 871 East Hastings. After we give away the last bundle we will dismantle the shop, pack it all into a storage pod, and figure out what to do next.

The music: Joni Mitchell BBC Concert, 1970; Neil Young, same thing, 1971, three times. Can't get enough Neil. Rolling Stones: Live at the BBC (1963-1965); Rolling Stones It's Only Rock 'n' Roll.

Kitchen Island - Friday, October 23, 2015 

Counter-clockwise from lower left: the same water bottle as yesterday, Humatrope, glasses, Encyclopedia of Creative Cooking, phone 1 of 3, yard sale measuring cups. The set was missing exactly the one cup I already had. Lucky, right?

The Encyclopedia of Creative Cooking, 1982, edited by Charlotte Turgeon

Passed a major milestone yesterday: 10,000 hits on my site. I've been watching it come for months. Celebrated with Hawaiian meatballs from the cookbook I snagged from my mom when I left home in 1983, but used pre-made, Costco meatballs. Delicious.

Dinner: two ate Hawaiian Meatballs, one had his meatballs with tomato sauce, one had his tomato sauce with faux ground beef. Cucumbers. 3 milk, 1 sparkling water with lemon

Love Notes

To Do Lists for Three

Trivot from yard sale free box -  what is she doing to that fish?

Contingency plans

Dreams, Reality

Peppers from my daughter's plant, ageing ginger, sketchy fennel, one canning lid left-over from making zucchini relish, a piece of cording, and one small potato - dug by hand on a summer's late afternoon. No gloves, but the soil was perfect and cool and the potatoes worth the dirty fingernails. 

The bowl was painted by me in Mexico, the reward at the end of a pointless time-share presentation. It took a surprising amount of time - most of the vacation... the painting, that is. I was 7 months pregnant. We were there to rest. When I wasn't painting I lay on my side on the swinging palapa platform, reading - white cotton curtains surrounding me, sparkling turquoise ocean just beyond - sucking back banana smoothies and dreaming about the little girl inside me. We would understand each other. 

Though most of my dreams for her will never come true, the same is true for any parent's dreams! The difference is timing, that's all. My dreams came to an end when she was only two months old, when we were presented with her diagnosis, grabbed by the collar, and rudely jerked out of our misty dream-world. How lucky for me! Unburdened by my own hopes, I am free to celebrate her smallest achievement: jumping with two feet together, for example, or figuring out the first step of tying shoelaces. Her achievements are many and fill me with pride. What's more, she is fascinating. She is a delight. Who knows what she's capable of?

The last raspberries of summer - worth removing one's gum for

October 22, 2015 - Headshots and MRI

Spent most of my spare time today trying to take a decent picture to replace the manic-fabric-nutbar shot I currently use. Magazine article submissions require a headshot! Argh! I tried some neutral, serious poses between dropping my daughter off at school, and returning there again for the annual start-of-the-year IEP* meeting with her teachers, classroom aid and learning resource teacher, two hours later. Deleted them all.
*Individual Education Plan for students with special needs - legal document outlining the team's three goals this school year: feeding, educational and social

Attempt at "placidly neutral" - and not the worst shot!
I need to get more sleep...

I continued to attempt natural and pleasant poses in the 10 minutes I had alone before the appliance repair guy showed up. Snapped away while he was in the basement, humming and "diagnosing" the dryer's problem. Ran out to pick daughter up. Took (deleted) more while she bathed.

Got daughter out of the bath, brace on, clean clothes, kids in the car (one angry; tablets - both), met husband at the roundabout, main entrance to Children's Hospital. Said goodbye to son, husband and car. MRI for daughter at Children's (scoliosis) while husband waited at son's SLP* group session.
*Speech and Language Pathology - board games and facilitated social interactions

Reconvened 2 1/2 hours later. Considered eating out, but too much work to agree on a restaurant. Drove home, instead; Disregulation Level: Moderate.

Two of us ate left-over chicken kabobs on top of left-over noodles, with 1/4 jar of yummy butter chicken sauce. One of us ate a veggi burger between two slices of bread. One of us devoured 2 microwave chimichangas and a pickle. 2 drank milk, 1 water, 1 I don't remember. All ingredients from Costco.

After the boys left the table, there was a very long session of "Cat-Dog, Human", in which my daughter sits on me and alternates feeding me imaginary catnip and dog cookies. It's a terrific game, now that I've learned how to play it. When I let her drive, we always get home safely.

Kitchen Island - Thursday, October 22, 2015

Lamp shade, assortment of dessicated bugs

From top left: "Cat-Dog, Human" took place without her brace. Double heaven! Afterward, she looked up at the bug-peppered kitchen light fixture and demanded satisfaction. All summer she has been fascinated by the building collection of dead wasps, fruit flies and other random bugs trapped within. My husband washed it out as the party continued upstairs, briefly and energetically joined by my son.

Nighttime rituals observed, and now, at 11:32 I am finally seeing my head shot attempts. I want to write, but last night's little post kept me up til almost 4. Don't know how long I will last.

Continuing counter-clockwise, the green kit is my daughter's Humatrope* injection pen. It is given at night, since that is when the body does its growing. It needs to come to room temperature before the dose is given - the cold can hurt.
*human growth hormone

Manual and paperwork from our broken dryer. It will cost at least $300 to fix, but the technician thinks it's worth it: It's a good machine, it should last you another 4 years. FOUR YEARS??? Is the expected life-span of a new dryer just 11 years???? He will come back tomorrow with 4 replacement parts. Our hand basket is well on its way to Hell.

Son's water bottle.

The library book my husband is currently reading on the bus: The Girl Who Saved the King of Sweden. It is excellent, he says.

Lastly on the island: a bouquet of late-blooming garden flowers from the mother of the person who helps me out with the kids twice a week. This is our respite, provided by the MCFD. It took us 7 years to get to the top of the pile to receive this funding. $196.30 per month buys roughly 3 1/4 hours help per week.

In the love note bowl on the breadbox: faux Tupperware, waiting to be returned to dear friends who share their celebrations with us, and send us home with leftovers. Love left-overs! I ate the resulting hash myself, at least three days running.

The tulip tree on the city property in front our house is raining down crispy, orange-brown leaves, but barely a portion has fallen. I've filled the yard waste bin with them once, already. This weekend is Extra Leaf Pickup; hope I get time to rake tomorrow.

After repeated hit-and-runs by the construction trucks coming in and out of our alley, squashing several of my plastic garden pots, I finally moved some of them in front of the garage, where they should be safe. I'll shuffle them back when the house is built, or my husband needs his car, whichever comes first.

My daughter's former bean garden, laid to rest

Is there any point in getting a car wash when rainy season is almost upon us? I think not. An interior vacuuming, however, would be a different story. Sadly, it's waaaay down there on the list of priorities. My car is a utilitarian vehicle.

The music: Neil Young BBC concert, 1971; The Witch Doctor Song - 3 different versions; Lonnie Donegan singing "Does Your Chewing Gum Lose its Flavour?" (Want to know the Beatles connection?)

Coming up tomorrow: Pro-D Day: 2 hours neuroplastic tutoring at the Vancouver Learning Centre for my daughter in the morning, followed by 1 1/2  hours patting dogs with respite provider (we love her!), and a play date at a classmate's (rare and highly anticipated). For me: catch up on emails and fix up late-night blog post mistakes while waiting for daughter at VLC; meet with fellow classmate from Master Recycling Class over tea to discuss recent trip to the Transfer Station and Landfill (excellent field trip!). Followed by a "Lady Beauty" appointment - a gift I give myself every two weeks: an hour and a half on my back, eyes closed. Wake up, pick up daughter from play date, rush home to meet appliance repair person. Later, laundry.

October 21, 2015 - Summer is Gone

Late August - that was then...

Late October - this is now

Summer is gone. Socks now, slippers and boots. Birds and pedicure migrating South. But I love the leaves when they're dry and crunchy. Good-bye for now.

The music: Dylan, alphabetically, starting with "4th Time Around". Dylan never disappoints. Highlights: "To Ramona", "Buckets of Rain", "It's All Over Now, Baby Blue" - as usual. A new favourite: "Blood in My Eyes". But "To Ramona" a hundred times.

When the boys had left the table, my daughter and I turned on the music, and nodded and smiled as we continued to eat.
My daughter on Dylan: He must be a star. His singing is bad. 
My son: Is he even saying words?

Chicken, chard, roasted veg, basil in olive oil, Dylan

Dinner: the entire chard harvest from the little alley garden cooked down to barely a meal-ful. Luckily, the kids won't eat it. Not at all bitter, as I thought it might be, with a little garlic from the garden, and basil, kept under olive oil. The basil takes up prime real estate in our over-crowded fridge, but it's worth it.

The right tool for the job: tongs, bought in Japan, were perfect for flipping the chicken kabobs - which neither of the kids liked. That's a lot of left-overs for me to eat alone. I'll have to get creative...

To do list: while I cleaned up the kitchen, my husband attempted to locate the manual for our seized-up dryer: the clothes are wet, and all the lights are flashing. That can't be good. Manual eventually located near the dryer - good thinking, whoever put it there 7 years ago - but it doesn't say anything about this combination of lights. I 'spect the dryer might be toast. New appliance lifespan is obscene. The number of broken appliances and electronics in my house is obscene. The fact that we will probably need to buy a new one already is obscene. Tomorrow I will call the 1-800 number and hang the wet laundry up to dry...

No more gardening for a while

Not a lot of time in the garden, these days. Other than raking, there's not much left to do. It took a while to find a better home for them, but the hostas are gone. They're now with a friend of the mother of someone who helps me with the kids. Sad Lilac now lives at a neighbour's; if it blooms this Spring I will learn what colour it was. The garlic is planted, protected by excellent, brand new wire. The parsley, run over by a truck, has been moved to a new container. The yard waste bin has been filled with leaves once already, but the ground is covered again. Sometimes I wish I had a leaf-blower.

Summer really is gone...

Humatrope 7: From the 13th Floor

Humatrope collar: used alcohol swabs, needle caps, words of love

Of the swirl of confusion that is my memory of receiving my daughter's diagnosis from the paediatrician, this sentence stands out clearly: If I was going to pick a disability, I'd have PWS over Down Syndrome any day. Until a few moments earlier, when she led me into her private office and graciously invited me to google it there, alone, I hadn't realized my two-month-old baby had a disability at all. I was ill-prepared to feel grateful for the relatively encouraging diagnosis, or to contemplate a choice between the two. I wouldn't have picked either one.

My first reaction was fleeting, just a glance at the tiny, open window, 13 storeys up; and a brief calculation of the best path to that window, over the desk on which sat the computer... the computer. Google it? No thanks. I'll sit here in the semi-dark, and stare at this beautiful, sweet, perfect, 2 month-old baby with the sparkling eyes. She fills me up and smells like butterscotch.

One dead of silent night in the NICU* I asked the nurse - whispered to her, and it still seemed too loud: You've seen lots of babies, all sorts of cases. Do you think it's possible this baby could be... dull?
Oh, no, not this baby. Just look at her eyes.
*Neo-Natal Intensive Care Unit

I hoped it was the antidepressant I had continued taking throughout my pregnancy, that had seemed so necessary and recommended. My mom thought she just needed ripening. She was beginning to show some spunk, we thought. We'd even heard her cry, kind of. That's why I had gone to what I thought was an ordinary 2-month check-up, merrily alone: I was clueless. She had sparkly eyes! As I sat with her in the dim, and the doctor saw to her other patients, my husband, also clueless, but now alarmed, was rushing there from work. The doctor had called him herself.

Tassles: needle caps, found pearls, extra beads

We did eventually google it. A lot. At least my husband did. I prefer my bad news in small instalments, don't like to dwell too much upon the future - especially since the present doesn't much resemble any of the permutations we were advised to expect. I get the main points from my good friend, Heather, president of the BC Prader-Willi Association. She keeps me apprised of developments: clinical trials and research; supplements and diets; new babies* and untimely deaths; controversies about Human Growth Hormone, dealing with rigid behaviour, scoliosis surgery options; a remedy for skin picking that works; info about types of alarms for fridges, and GPS for kids running away to seek food; heart-wrenching anecdotes about ordinary people in extraordinary situations added to the mix along with all the other stuff parents of all sorts must deal with.
* one or two in BC per year, or 1 in 20,000 world-wide, across all populations. The least rare, rare disease, we are told - for whatever that's worth

PWS is bad science fiction – a cruel kind of torture that morphs from failure to thrive, to an all-consuming, insatiable hunger just a few years later. A month after receiving the diagnosis, we attended our first BCPWSA conference, smashed head-on into the towering brick wall of our reality. Driving home that evening we were silent, absolutely deflated, pinned down by heavy piles of crushing debris. But glimpses at the back seat, lit by passing streetlights, showed a sleeping angel. Introduced by a social worker at the BC Centre for Ability, Heather had written in her first email to me, "Hi and Congratulations. I will give you some of the advice I received, which was just to love that little girl and try not to let the fear override the joy of your new baby. Many children are doing so well and there is a lot of research happening that can really change their futures." I decided to go with that.

I know we are very lucky. The most bizarre, disturbing - and the most-feared - hallmarks of Prader-Willi Syndrome - never-ending, over-powering hunger; ceaseless food seeking; obsessive-compulsions; skin-picking - are, so far, (knock wood) absent. They're long over-due and probable, but for now our lives are minimally affected (knock on wood): we don't lock our kitchen cupboards, we leave food in plain sight, we don't give constant supervision in case she should acquire it in some stealthy way and cram herself so full it backs up, is spewing from her mouth as she tries to stuff more in and her stomach tears in several places because she doesn't vomit or feel much pain*. Fingers crossed and knock on wood.
* according to one study, Gastric Rupture and Necrosis accounts for 3-6% of deaths in PWS. The unsupervised eating binge usually occurs at a family holiday celebration, where everybody thinks somebody else is monitoring food intake. When everybody is watching, nobody is watching

Incredibly, our daughter tells us she is full, at which point she stops eating. No credit to us. She even magically limits herself to the 1200 daily calories her whacked-out metabolism runs on. The only thing I have to do is provide healthy food and limit bad choices: 1200 calories leaves very little room for treats, so they are a big deal, infrequent, stingy and savoured. Though there are troubling signs the transition may soon be upon us, so far we've had it pretty easy. Knock wood. (You'd think I was superstitious...)

The biggest challenge has been cognitive. In the giant Gelatin Mould of Life, learning, for her, is like wading through shoulder-high Jello to read the backwards writing on the bottom of the Pyrex bowl. But not to worry: it's strawberry Jello! It smells good! And it makes everything look so pretty, and pink.

Her sweet personality goes a long way: she's gregarious - especially to dog-owners - cheerful, fun, kind, naturally optimistic, brave and strongly attached. She connects deeply and opens her heart and her imagination to anyone who shows a fleeting interest, sharing her kooky world of witches, Hansel and Gretel, vampires, sharks, Terry Fox and his robot leg, bullies who recoil at the colour pink, and the ever-so-handsome Everly Brothers. Did I mention she loves dogs..?

There are some minor hassles and endless appointments: endocrinologist, opthamologist, orthopaedic surgeon; brace fittings, swallow and feeding studies, stim tests, nightly needles, tutoring, blah, blah, blah. She rolls with it, looking forward to the appointments like she might a play date, making a non-issue of the shots. A brace for scoliosis is the newest challenge. She hates it, but she endures it. During her daily one-hour break we rub her skin, give her a good scratching, scrub the stinky brace with Dr. Bronner's and alcohol. Switch out undershirts. Tickle, wrestle and hug.

She almost never complains, but I don't blame her when she does. For the most part, she smiles as she pushes her way through that thick Jello, eyes sparkling, patting every dog along the way, hiking her pants back up over her brace, and teaching me about bravery, gratitude, and enjoying life. If I had to pick between PWS and Downs, I still wouldn't choose either one. I would take away the yoke from her neck in an instant - but I would not change her for the world.

Sewing details here

Humatrope 1: Ingredients

Humatrope 2: Test Swatch and Scoliosis Brace

Humatrope 3: Foundation, More Brace

Humatrope 4: Lost for Words
Humatrope 5: Hello Little Girl in the Bullet-Proof Vest

Humatrope 6: Three Distractions
Humatrope 7: From the 13th Floor
Humatrope 8/Sewing Tip 8: Tassel Tutorial

Waste Audit, 14 Days

Contents of sewing room garbage can - 14 days

Homework for Master Recycling class: a personal waste audit. Held on to all household waste for 2 weeks to see what I could see. This is the bag that came from the sewing room trash can. Clockwise, from top (before sorting): 

• Marathon of Hope sticker. September - when a young girl's thoughts turn to Terry Fox. My daughter ran for Terry.
• Two lunch bag love notes can be made from one grocery store receipt. 
• Yellow name tag from a hand-me-down backpack from the kids two doors away.
• Candy wrapper - one of two unexplained bits of trash found during my audit. Curiosity plus independence, or the beginnings of hyperphaegia? Too early to tell, but the next stage of Prader-Willi syndrome is long overdue.
• Thread snips and embroidered, used, alcohol swabs (you read that right) - the Humatrope Collar is finally finished! These are the rejects from making the labels.
• Broken twin needle - altered some clothes for a friend. 
• Granola wrappers - haven't been eating properly.
• Fish food package - my daughter finally owns a pet. Violet the beta is very well-fed.
• Light bulb from sewing room - I spend a lot of time here, late into the night. Not quite sure how to dispose of it...

Lunch bag love notes