talking about death with kids

starsThis past year, our family has experienced the death of my grandma, and the recent deaths of both my husband’s father, and our family dog Sammy.

In the midst of grief, we had to deliver our own poorly planned, scrambled explanations of death to our youngest son Aaron, who is eleven.  At the best of times, I have a hard time guessing what’s going on in Aaron’s head.  His cognitive disability means that he doesn’t always acknowledge his understanding in ways that we comprehend.  His emotions and attempts to communicate can come out as misdirected behaviour.  The challenge is to be compassionate and patient with him during hard family times.

I do know that I don’t know what happens after someone dies.  We are lacking in organized faith, and this isn’t helpful at these times.  When Aaron’s great-grandma passed away last March, we gave him a simple explanation that Grandma Joan was very old (she was 92) and that her body was broken.  This felt true.  To answer the question of “where did Grandma go?” we leaned upon my mom’s explanation of where her own father went when he died in a coal mining accident when my mom was only four years old.  “Grandma is up in the stars, looking down on us,” we told Aaron.  Explaining about her ashes was more difficult.  We steered clear of discussing cremation, and vaguely said that Grandma’s body turned into ashes.  I was relieved Aaron didn’t ask further questions.

We stuck with the same explanation when his Grandpa Barry died earlier this month. My father-in-law’s death was more difficult to explain, because he wasn’t nearly as old as Aaron’s great grandma.  “Grandpa’s heart stopped working,” we said, rather inadequately.  We said he’s up in the stars too.  Aaron’s main concern was that his own dad was upset, and he seemed to take solace in giving out hugs to try to make him feel better.  We shared tender memories of visiting Grandpa Barry’s house (he had a pool!), eating hearty barbecued meals out on the back patio, and Aaron & his grandpa mowing the expansive lawn on grandpa’s ride-on tractor.

I can tell Aaron isn’t sure what to do with his emotions.  MY GRANDPA DIED he sometimes yells.  I haven’t been that successful in explaining that in North America, we don’t run around yelling about death.

Thankfully, yesterday we had an appointment with his behaviour psychologist.  She told us to use developmentally appropriate language for Aaron, so telling him about hearts & bodies that broke was fine.  She told us that yelling out is a totally normal way to handle tough emotions.  She encouraged us to keep sharing memories, and to answer any questions as honestly as we could when they came up.  We printed off photos of Aaron with Grandpa Barry and sent them to school in case he wanted to talk to his teachers.

But I think Aaron is onto us and our weak white lies.  The fact is, we don’t really know where people go after they die.  Their spirits are simply gone from our world.  “But the stars are science,” Aaron said last night, suspiciously, after we talked to him about people being in the stars.  In lieu of a better, more spiritual stories, that’s all our family has.  (For families with stronger faith than ours, take comfort that you have more robust explanations to draw upon).

Then finally, Sammy, our 11 year old chocolate lab. I don’t know why I’ve been crying more about a dog than I did about actual people, but I have.  We had to take Sam, who was riddled with cancer and arthritis, to the veterinarian on Tuesday to be euthanized.   I lied to Aaron about that (or as I like to say, I withheld information).  Explaining that you take loved ones to the doctor and then they die wouldn’t bode well for us the next time Aaron has to go to the pediatrician.  So we just said that Sam died, too, and that he’s up in heaven in the stars, fetching tennis balls for Grandma Joan and Grandpa Barry.   That’s the best I’ve got, and I really hope that it is true.

Please go tell the people (and dogs) that you love that you love them.  We are all only here for a limited time in this beautiful, messed up world.

For more about talking about death with kids, visit:
Talking to Children About Death
National Institute of Health
And for a different perspective, read this great piece about living in the moment by Ellen Frankel: Life, Death and Karma 

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and to all a good night

IMG_5786Yesterday I went for a pre-Christmas haircut with a picture of Jessica Biel jammed into my purse. I walked out with a curly bob, and a free sample of Aveda hand cream, but I did not look like Jessica Biel. I had Aveda lipstick applied to my rather thin lips. Jessica Biel also has rather thin lips but there’s where the similarities end.

Before my appointment, I showed my husband the picture of Jessica Biel, and he widened his eyes and nodded too vigourously. I informed him that he looked nothing like Justin Timberlake either before I walked out the door.

I go to a salon that was very popular with my punk rock friends in the 80s. Thirty years later, it is a bit run down. There are scuffs on the walls and the lights are too bright. I persist in going there because the young lady there is still apprenticing, and she’s cheaper than most. I had vowed never to spend $400 on a cut and colour (yes I somehow, unwittingly, paid that much for a haircut on a prairie town in northern Canada). Also, she wisely doesn’t try to engage me in inane chit chat while she’s yanking on my hair putting foils in. I close my eyes and pretend I’m at the spa getting a hearty head massage. I can hear snippets of conversation around me, and they are ridiculous: one woman talking about how her mother comes into her home and rearranges her shoes into shoe boxes underneath her bed. Someone else giving too much information about potty training her three year old. Another woman loudly announcing she’s a journalist with CBC and she specializes in crime. On her way out, she speaks to another woman she calls ‘Madame Justice.’ Someone else is bragging about her holiday in Puerto Vallarta.

I like my stylist not only because she’s cheap and quiet, but because she remembers details about me and I don’t have to re-answer questions every time I come. She knows my eldest son is a drummer and lives in LA. She remembers my daughter works in a bakery, and that we have a young son who still believes in Santa Claus. I’m positive I’m the same age as as her own mother, as she’s only 20. She has perfectly manicured fingernails, decorated with impressive multicoloured graphic designs.

On my way out, a young man with long curly hair comes in. He seems known to the stylists and exchanges Christmas greetings and hugs. He has a black tuque perched on his head, and he reminds me of my eldest boy. I smile at him and look away, a stinging tear creeping into my eye, thinking of my far-flung child.  ‘He’s not cutting his gorgeous hair off?’ I said to the young lady who accompanies him. ‘No’ she says, ‘Just a trim’. ‘Good,’ I reply, relieved.

This is the first year that I will not have all of my kids with me at Christmas. The drummer is staying in LA and having dinner with his girlfriend’s brother’s place. So many people have asked me if he was coming home that I realized I should have offered him a plane ticket back for the holidays. But I honestly had not considered it, I say with a stab of regret. (Insert bad mom judgements here). I mailed him a heavy package of books and an envelope stuffed with American cash, but no plane ticket. I assumed he was spending it with the woman he lives with, immersed in his new sunny, but gritty, LA life. And so he is.

I’m thankful that my daughter is coming over late Christmas Eve with her boyfriend and kitten so they can wake up Christmas morning and open their coveted stockings. I did not get the kitten a stocking, but I did get the kitten a gift. I cannot resist the their furry baby; she is so cute.

I will make them fake cinnamon buns and I will happily drink strong coffee and eat eggs and lox. We take turns opening presents, from youngest to oldest. Our youngest hands out the presents, and very slowly unwraps each of his, delighting in the whole process and insisting on playing with each gift before he will open the next one. It can take us the entire morning to finish emptying out the bottom of the tree.

I have been hoarding New York Times newspapers to read, and bought myself two books to put under the tree. My favourite thing is sitting on our red couch in front of our (fake) fire and devouring Christmas reading. People seem fearful of buying me books, so I buy my own. Everybody disperses, reclining around the house. Sometimes we play the movie Elf, where the Will Ferrell character (Elf) reminds me of our youngest boy: head-strong, pure, full of silly and love.

Eventually some cooking starts. Without my first-born vegetarian son here, we will go full carnivore, with Mundare sausage and a huge leg of lamb which I’m not sure will even fit in the oven. A child has requested a carrot cake, which I will bake today, which is Christmas Eve. I ran all over town yesterday searching for marscapone cheese. Since when is marscapone an exotic ingredient? I live in a limited city.

We will set the table and light the candles. Maybe I will say a few words about absent children. We will dig into a mostly beige menu (lamb, mashed potatoes, a requested hashbrowns and mushroom soup recipe), carrots and parsnips in maple syrup (the only way I can choke them down) and broccoli with toasted sesame seeds for some green.

I will hopefully disappear upstairs for a hot bath and not have to do dishes. I will email my boy in hopes he emails back, which he sometimes does. Everybody will retire early because it has been a long day.

The next day we will go for Dim Sum with our old neighbours. We’ve been doing this now for six years, so I think it is now officially a tradition. There’s nothing like greasy Chinese breakfast after a day of overeating. We will wait for shrimp dumplings and sticky rice to come around on the little carts, read our Chinese horoscopes on the placemats and laugh with the ladies as we turn down chicken feet. Sometimes the girls from dim sum will go out to a ‘chick’ movie. One year we saw ‘Marley and Me’ and bawled our eyes out, even though I don’t even like dogs. This year we are seeing ‘Wild’, which was a fine book, so I have high expectations for the film.

We are then finished with our Christmas traditions. New Years seems overwrought and we can never find a sitter. So we will sit at home and try to stay up until midnight watching bad musical countdown specials on TV and drinking old fashioneds and amaretto sours. We bid good night to each other, calling cheerily, ‘see you next year!’ We will tuck 2014 into bed one last time, and wake up too early, generally a bit hungover, to face the new year.

one hot mess

 

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women who bake

It is early December, and I have to fight the undercurrent of the holidays pulling me down. We have never travelled to spend Christmas with our extended family, who are thousands of miles away, but I’ve always had my kids here together, every second year at least when they weren’t at their dad’s.

This year, my eldest is in LA, living a self-imposed life of poverty in Koreatown, and I’ve carefully assembled a little box of treasures that I have to mail to an unknown address for his LA girlfriend to pick up. There is a vegan cookbook, a Croneberg novel, soap, a chocolate orange, a sketchbook and pens and gingersnap cookies baked by his younger sister. I’ve included a big wad of US cash, which I hope does not get waylaid when the package arrives at this strange address in a season-less place that has no December snow.

Basically, our family is a mess over the holidays, with estranged mother-in-laws and stepchildren, but we make the most of what we have. My husband often says: ‘let’s concentrate on who we do have here, not who we don’t’ and I’ll work to adopt this practical philosophy, especially this year when I’m one child down.

To soothe me, let’s inventory my Christmas traditions. We watch the movie ‘Elf’ when we put up our Christmas tree. It is always a real tree, from a real tree lot, and its needles shed all over the rug, but it also makes our house smell fantastic. By Boxing Day, I’m ready to rip the half-barren tree down and throw it over the back deck for the garbage men. But until that point, I do love our tree, and especially revel in watching the kids rearrange their presents into little stacks under the tree.

We host an almost-annual Open House where I make specialty cocktails like Crantinis and Limoncello martinis, and prepare devilled eggs and provolone and basil wrapped in proscuitto. We invite an assortment of people we like: work people, old neighbours, and friends. The kids disappear downstairs to play and hopefully nobody wanders upstairs crying with a bloody nose. This party is my annual deadline to get the house decorated, tree up and Christmas baking done.

Since my beloved daughter moved out this fall with her boyfriend, she hauled her Mixmaster back here last week and we spent two full days baking nine different types of cookies and candies together: almond roca, whipped shortbread, key lime meltaways, black bottom cupcakes, fruit and almond cookies, coconut shortbread, gingersnaps, chocolate snowcaps and Nanaimo Bars. We kept having to run out to buy unsalted butter, but happily made a floury mess of my kitchen, aprons on and mixers whirring, with Christmas tunes inspiring us in the background.

Last year, my daughter’s boyfriend joined us on Christmas Day. I vowed that any partners of children would be full holiday participants, and not relegated to merely in-law status, so this meant I went full out – stocking, Santa gift, big gift from us. This added to my shopping list, but since I do both the ‘food is love’ and ‘gifts are love’ thing, I don’t mind one bit.

My children, when they aren’t living in a different country, have alternated Christmas morning at their father’s and here since they were four and seven years old. The most exquisitely painful part of being divorced was the first Christmas Day I spent without them, I sat alone in my cousin’s empty apartment, counting the minutes until I could legitimately go to bed in the early evening so I could just be unconscious and have the day be done with, a sad mother without her little children.

Waking up on Christmas morning with a shrunken family got better when I found a new husband and we had our own love child together. But not having my other two up at 6 am to check stockings still hurts. I finally figured out to leave town with my new little family every-second year, driving to the mountains to spend two nights at a lodge with the other broken families. When we drive back later on Christmas Day, voila, my other kids appeared, and now that they are adults, sometimes they even start Christmas dinner for us – prepping salads and putting hams in the oven. This helps.

I make shortcut cinnamon buns Christmas morning, and we have our own roast beast for dinner, with mashed potatoes, gravy, white buns, broccoli and salad. We are so tired of eating Christmas sweets by then I just throw some crumbly Christmas cookies on the table for dessert, and that is that. We recline on the couch on Christmas Day, digesting and watching the fire.

My parents call on Christmas Day and we pass the phone around so everybody can express gratitude for the presents from Gramma and Pappa. My mom is the best gift-giver ever. Their eagerly-anticipated package arrives chockfull of thoughtfully chosen and creative gifts. Gramma sets the gift-giving bar high.

On Boxing Day we have the odd, but pleasant tradition of meeting another family for Dim Sum, and fill our recently-emptied bellies again, but this time with Chinese dumplings and buns.

My Norman Rockwell dreams of the perfect Christmas with a huge crowd and extended family and happy stepchildren has never ever happened, so why would I expect it to suddenly appear this year? The key to success for a happy holiday is to lower expectations, and embrace what’s in your control. I never ever complain about Christmas preparations, even if I’ve spent half an hour circling the shopping mall lot looking for a place to park, or I’ve been standing on my feet for 12 hours cooking in the kitchen, and washing a never-ending sink full of dishes.

This is what we do, and we do it because this is how we pass on our holiday traditions to our children, who will do a version of what we did for their own families. My grandma made a dozen different holiday cookies, and over-stuffed our stockings, and filled her dining room table until it was heaving with food, and that’s what my mom did, and that’s what I do, too.

The thanks comes in the little things, and you might have to search for them, but they are always there. The little eyes that light up, the bellies that are full, the excess of Christmas wrap all over the living room floor, the stuffing of stockings at midnight by giggly parents, the tree that is annually knocked over by a cat in the middle of the night.

I love Brene Brown’s dire warnings for us ringmasters of the circus.  I urge you to take good care of yourself so you can take care of your families, too: disappear upstairs for a hot bath and to watch ‘Say Yes To The Dress’ to recharge, vent about overheated Costco line-ups to your friends, but don’t forget it is up to us to invent holiday joy for our own families, and to pass it on – even if your family is stunningly  imperfect like mine.

Embrace that hot mess, because that’s all we’ve ever got, and that’s perfectly enough.

move towards the light

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I oscillate wildly between feeling despondent and that there’s no hope for change in this world, and then feeling deeply thankful for what I have. I cannot figure out how to even out these emotions, except by recognizing them and accepting that they are true. As Anne Lamott’s son Sam said when he was young: “I think I understand about life:  pretty good, some problems.”

As I listened to Dr. Louis Francescutti’s presentation to health executives last week, I felt despondent about the state of our health system (and politics in my home province of Alberta in general). We’ve had the same government for 40 years, and having too much money has led to boatloads of entitlement, reams of wasted money and a lack of creativity or innovation. Why be creative when you can throw a bucketful of money at your problem and then walk away? That’s the Alberta way. Ugh.

I felt gross after that talk, mostly because what Dr. Lou said about the massive inefficiencies in the health system and an eroding sense of compassion from health professionals was true.

Then I stumbled upon an old article written about Darryl Sutter and his family. Darryl Sutter is, of course, the coach of the Stanley Cup winning LA Kings hockey team. He and his wife also happen to have a son with Down syndrome, Christopher, who is a young adult at age 21. Christopher is the exact same age as my oldest son (who also lives in LA) and ten years older than our youngest son, Aaron, who has Down syndrome too.

Often it is the families who are further along their journey that have the greatest insight, just by how they live their lives. Sutter talks about even during his nomadic time as a hockey coach, but how his family always came first. Sutter resigned from the Chicago Blackhawks so that Chris could live on the family farm, and then they moved to San Jose for his schooling, where services were robust for kids with Down syndrome. Back to the farm when he was older, and he had the freedom to ride his horse and tool around on the tractor. Now Chris is graduated from high school, and is in LA with his dad and family, where’s he’s involved with Special Olympics and the LA Kings hockey team.

I love this quote:

Darryl Sutter’s biggest triumph, though, has nothing to do with hockey. It’s the fact that, against massive odds, he and his wife have been able to raise a healthy, happy son.

Usually the term ‘healthy’ makes me shudder (I know so many families whose awesome kids wouldn’t be considered ‘healthy’), but in this case, I know what it means. Chris had heart surgery when he was a baby, and many medical interventions since. He’s as healthy as he can be – and that’s what health is really about, as the WHO says: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” It is about well-being, not merely about not being sick.

I take heart in Christopher Sutter’s story. The Sutters talk about having a long-range plan for their son, based on what he wants to do. Aaron so desperately wants real friends and a girlfriend. We need to be in a community where he is accepted as a young man first, and divest ourselves of people who see him merely as a disability. He needs recreational opportunities, and decent year-round weather so he remains active. He needs access to the beach, which he dearly loves. He needs to have meaningful employment and be able to safely and independently travel back and forth to work, where he is recognized and known. This utopia doesn’t naturally exist. It is something we have to work hard to build for him.

The only thing that distracts me from the despondent is the grateful. The wisdom I learn from parents who have children who are older than mine is that we don’t have take on all the weight of changing the world. I have put in my time, and now I can move on. In fact, our greatest revenge in a society that is discriminatory and unjust is simply to live a good and happy life. And that’s what we are committed to do. Thank you, Sutter family, for your inspiration. It is now time for me to put down my battle axe and to move towards the light.

put that supermom cape away

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Every few months, I need a break from the advocating, lobbying, educating, motivating and inspiring.  A wise woman once said to me:  you know, sometimes you can fold up your Supermom cape and put it away.

This is brilliant advice for two reasons.

One, all ‘special needs parents’ need to rest from the heavy work of changing the world.

And two, let me not view myself in such high regard that I think I’m the only one who is capable of changing the world.  Many many others are chipping away at this important work – this is not my sole responsibility.  It is humbling to regularly remember that it isn’t all about me.

The break from being a ‘special needs mom’ is not a break from my ‘child with special needs.’  It is a break from society, systems and the small minded.

So I fold up my cape, and pack up my kids and board a flight to the west coast.

We disembark in the land of the lapping ocean and shadowy mountains. Our generous extended family fetes and feeds us.  We eat fish and chips at the wharf and meander around the bobbing boats at the marina.  Aaron chooses what yacht he’s going to buy for his girlfriend.  We amble through a hidden community garden on the abandoned train tracks.  We carefully examine every single exhibit at Science World and admire the views from the top of a mountain.  We gobble up corned beef hash at a breakfast joint with my daughter and her boyfriend.

We walk laps around the ferry, challenge each other to racing games at the video arcade and hold our hats on the windy deck.

My mom and dad take us to secret island places.  We visit the barking sea lions and chat with the goats at Coombs.  We shriek when we touch the sea cucumbers at the marine field station.  We turn over rocks to find scattering crabs.  We use binoculars to spot thousands of gulls feasting on herring eggs with Pappa Neil at the estuary.

We read chapter books at bedtime, and lounge in bed for a long time before we get up.  We eat pho and Nanaimo bars and lay on the floor while our one year old cousin and niece scampers over us.

All this is done on Aaron slow time, with no heed to clocks or schedules or meetings or the damn Internet.

Let’s give each other permission to fold up that Supermom cape and hide it in the back of the closet.  Sometimes we need to relax into these small moments with our kids, and leave the changing the world business to someone else.

 

my grandma

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My daughter Ella and her great grandma.

My grandma was bright, quick-witted and charming.  She was also an elegant, tall, stunning beauty.  My grandma was a mom to two, a grandma to four and a great-grandma to four.  How fortunate for us to have her in our lives all these years. She was much beloved to her family and friends.

My grandma possessed an amazing long term memory and was an engaging teller of stories, remembering every fine detail, even fifty years after the fact.  She was always impeccably put together, and had an eye for the finer things in life.  Grandma could sniff out a good shoe sale from many miles away.  Grandma was a talker on the phone, a lover of animals, a reader of books, and a great baker of bread.

My grandma had the good fortune to have two great loves of her life:  Frankie, my grandpa, who left her a young widow at age 27, and then my other grandpa Joe, who passed away 18 years ago.  I know she missed them both terribly.  May she meet up with them in heaven – they will surely be both vying for her attention.

I will never forget my grandma’s reaction when I called her to share the news that our youngest son had been diagnosed with Down syndrome.  She said to me, ‘Oh my goodness, well of course I will love him no matter what.’  And love him she did – she had an infinite amount of patience for her young great-grandchild.  She said to me:  ‘it is my one regret that I worried so much about how clean the floor was when your mother was little.’  She instead took great delight in all her grandchildren and great-grandchildren – writing us long handwritten letters, pressing cash in our hands for gas money, buying us thoughtful gifts, teaching us to bake, stocking the fridge with our favourite foods, and feeding us messy chocolates.

Most of all, my grandma was the most gracious person I have ever known.  She would never fail to ask folks how they were doing, recalling details of their lives, and be concerned that everybody ate and slept well, even in her later years as her memory and health started to fail her.   She was the very definition of grace.  I can only hope that I inherited even a fraction of her kindness and generosity.  I think we need more people like my grandma in this world.

I love you so very much, Grandma, and will miss you so very much, too.  I trust that my cherished memories of you will see me through.  xoxo

Late Fragment
-Raymond Carver

And did you get what
You wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to
Feel myself
Beloved on the earth.