In Spite of Myself

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I have to admit I took impish glee in writing that last post about being a cancer brat. Thanks for the great feedback, and I am happy to report a huge improvement in health and attitude.

The impish glee I guess just means I am Owen’s mother.

The season that brings out the elf in most of us seems to bring out the trickster sprite in Owen. A right naughty old elf… Longtime readers know all about Owen’s holiday antics – the infamous Christmas of 2015  (Naughty – or – Nice -?).

And he’s started early this year. (“Good grief Owen!” texts brother Oskar.) A few weeks ago I found just half the paper wrapper formerly belonging to a monstrous chocolate bar lying near my bedroom trash can. (Did he eat the rest of the wrappers too??) This chocolate bar had been in line for stocking stuffing, although of course not Owen’s stocking. It’s true that I unwisely left the bar sitting on the dedicated wrapping table set up in my bedroom. My bedroom which is supposed to be locked.  But it was buried in a shoe box full of non-edibles. How does he know?

He knows. Maybe being a mostly non-verbal person, he has developed an exalted sense of smell. An exalted intuition?

Owen knows so much more than anyone thinks he does. He knows that wrapping paper and packages sitting in shoe boxes mean CHOCOLATE, or at least SWEETS. Duh Mom. I think he swung through our bedroom a couple of more times, picking out chocolate items before I realized what was afoot.

I know who I am blaming. Already by mid-December we have watched the movie Home Alone 2-3 times. (Two to three because Owen doesn’t always sit through the whole movie.) About every day he waves under our noses or thumps our arms with the video box adorned with the cherubic/devilish face of young Macaulay Culkin, eyes wide and mouth open in apparent innocence. Owen even asked his dad for it by name. That’s a big effort, but Dad isn’t always a mind-reader, he needs help. But these cues were not enough for mom either. STILL, 54 years though I am, and 24 of them Owen-educated, little did I suspect that Owen might be studying-up. Might possibly be an admirer of the young character Kevin McCallister’s methods for terrorizing two simple minded adults! (Honestly, at movie’s end didnt you feel sorry for the robbers??)

Possibly I exaggerate.  All I know is that after we had watched a couple rounds of Home Alone one night I found myself with 2 toilets and one shower covered in poop, a full bathroom sink full of laundry detergent, and one Owen snickering uncontrollably at the center of it all. (And you can keep the partridge. The pear tree has certainly been stripped of fruit.)  It’s the snickering that gets ya. Owen’s bowel problems are real — although this was pretty rich even for him.  A monstrous bar of chocolate possibly consumed with its papers can get things going. I wish I could say that I handled that evening with superior calm and an objective sense of humor. I did not.

I had Owen make amends, and I did my best to make amends to him for my poor response to trickster exploits and hilarity.  And as always (but particularly when I write about it), now that it’s over I can see the humor in the whole thing. Soap and water, and time, are wonderful curatives for nearly everything. Oh and apology. Gotta have that too.

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Going forward, I am making an effort not to tax my naughty Christmas elf’s frail will-power. After shopping this week, I transferred my bulk purchase of eggs into cardboard crates before the groceries could cool on the counter, and handed that tempting Pete and Gerry’s plastic 18 egg holder over to the man with the scissors. Same for Owen’s favorite red and orange decorated bag of peppers. (When we are shopping together Owen can hardly keep his hands off some of these bags, they hold such appeal for him). Owen’s fingers were twitching as I proffered the bag, peppers safely stowed in the veggie drawer.

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Still scooping…

The plastic bag of tomatoes I was not so smart about. Sure enough, 3 minutes after he got home, there was that grape tomato bag in Owen’s possession, already filled with clothes pins and plastic shards. Owen showed me the discarded baby tomatoes in the bathroom trash basket (“Owen! this is trash! Not a basket!!”), I washed and re-packaged them, he sat a time-out for them, I hid them, and we moved on.

At least I think we moved on — hmm, wait, where are those tomatoes?….

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Brat

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All around me this month of November people are being grateful.  Gratefulness posts fill the Facebook feed. People are grateful in the newspaper. Soon it will be Thanksgiving, and people will take a pause on bad news and be grateful on the radio too. This gratefulness is very wearing.

I do not feel grateful. Although I know I should.

It is not yet three months since I was diagnosed with  bilateral breast cancer, and I have a lot to be grateful for.  My surgeon and staff were wonderful, and surgery went well. Lumpectomies, rather than full mastectomies. My surgeon is happy with the cosmetic result. So am I. Now it is November, and the prognosis is good. Friends and relatives call and write and show up in our family’s life to take care of the business that I can’t take care of myself. Despite being truly thankful for the help, I am not experiencing gratefulness in my heart. I see rather than feel the good fortune that surrounds me.

I am afraid.

I still cannot use my arms freely. I tire easily.

I wonder what the next treatments will bring.

Lately, I am a grumpy brat.

And unfortunately for my family, I have never been very good at “faking it.”  Honesty oozes out of me, like ripe cheese.

It’s taking far longer to recover from my surgery than I expected. I am not sure what I expected. The scar tissue in my underarms still pinches or burns if I lift things, move or twist. My lymph system hasn’t figured itself out yet, and sometimes my underarms are puffy with lymph fluid that can’t circulate properly. Three of my perfectly healthy lymph nodes in each armpit had to be removed to ascertain that they were cancer-free. I should be grateful that there were cancer-free, I know. But I just want my lymph nodes back. If this puffiness lingers or becomes extreme it’s called lymph-edema and requires medical attention. This is very frustrating to me me: shouldn’t there be a better way to tell if an organ is healthy or not, than by removing it from the body and chopping it up??  I was told about the possibility of lymphedema, but I didn’t think it would happen to me. I didn’t think breast cancer would happen to me. I still don’t really believe it is happening to me.  I picture being stuck like this, alive, yes, cancer free, but unable to DO anything. Alive, but not able to LIVE.

I am impatient, as you would expect an ungrateful brat to be. At least I am staying in character.

People come up to me to congratulate me on the latest good news, which is that I do not have to take chemotherapy. The results of my tumor biopsy and my blood work show that hormone therapy with tamoxifen will be enough to repel cancer, (unless it gives me cancer which is also a possibility). I want to be happy about not having full scale chemo, and when the doctor tells me, I am relieved, and I celebrate. But once the  bottle of white tablets is sitting on the kitchen counter, the idea of really taking this drug for 10 years fills me with dread. I am already dealing with fluid-filled arms and other medical side effects of the cure — how next will my body be altered? I remember how I felt at the beginning of this process, before every appointment  like hiding under our bed. Now I feel like climbing into my car and driving to Mexico.  I like my body the way it is. I do not want to be altered, even in an effort to save my life.

One night before I say prayers with Owen, I try refocusing my mind on some things I’m grateful for. The temperature is dropping, so I say I am grateful for a home in which to stay warm and cool and dry, no matter what the weather. I am grateful for yummy, interesting food to eat. I am grateful for nurturing care from family members and from friends — for meals and groceries arriving at our door. Loads of laundry washed and folded. For people who care.

Owen leans over and places his hand on my head as I speak these words aloud. I have to smile. It feels like a benediction. The hand of an angel boy on my head. A  mischievous and naughty angel boy  — capable of pilfering snacks from his nephew’s backpack and sneaking off with them — yet who still seems to act on behalf of better, gentler spirits than my own.

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Yesterday I poured out all my frustrations and negativity to my physical therapist Erica. It’s asking a lot from a PT, but she’s a game lady. Maybe I am not the first. Her response was to show me a diagram to explain how the lymph works, how it meshes with the capillaries and yet operates in an entirely different manner from blood. That really helped. I could see this troublesome lymph as beautiful, not stupid and lost, but clever.

And at that moment I made a decision. I will take my tamoxifen for my mom, I decided. I will do everything that imperfect medical science has to offer in her name. Rather than driving to Mexico or hiding under my bed, I can do this for her — because she didn’t make it in her fight against cancer, and I very probably will. So this afternoon, after a certain number of hours of avoidance, I faced down my white tablet of drugs beside the sink. It was surprising and nice to turn around and see her face just then, smiling at me from inside a frame on the kitchen counter. My mom, captured looking joyful and festive in her kitchen, preparing a turkey for a Thanksgiving long ago.

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Making Limeade

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I promise this is not an attempt to rip off Beyonce.  If she knew Owen, she I think she would understand. She looks like that kind of woman. Owen REALLY loves lemons, as you may or may not know. ALL kinds of lemons —

But he’ll take a lime ANY TIME–

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–even if it zaps him back!

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I have the flu this week, which makes everything harder especially cooking. No, maybe especially running after an Owen who keeps running out the front door is harder.  Particularly when I can’t find him at the recycling bin – and then he emerges from our renters’ door carrying a stolen soda bottle!!  Ooooh noooo Owen! Very embarrassing. Yep, that’s definitely more stressful…

Best to share the limes.

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Post Script:

Happy Day-After Valentines to all my readers!   Please take the time this month to love me a little: drop me a message about what YOU like best in the embracingchaos.net posts. What would you like to see more of?

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Owen’s Valentines Carrot Cake

 

Send your comments THIS FEBRUARY to wystansimons@gmail.com, and in thanks I will email to you my brand new, just invented RECIPE for this delicious Carrot Cake made for Owen and his dad (oh yeah – and me). Yep, it’s “paleo” and yep it’s very moist and very good. (Ok, true, the icing is a cheat. Owen can’t eat much of that.)

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Oh oh! left the cake at home with mom all day…

Goal: once I get blog readership up to 2,000 followers, I will be positioned to go for book publication. Embracing Chaos, the book, predates this blog – it’s all written and ready to go, full of the hilarious and heartbreaking and outrageous stories that are part of life with Owen. Just need a little thing like an agent and a publisher to spread the joy.  And agents and publishers want to see readership to know that they can sell this thing. (Of course they can! everyone will love it.) The best way to know that real people are reading me is to have an email list of real readers. (since the WordPress system is full of “ghost followers” – fakes) Know that I will certainly not publicize anyone’s emails.

Every time you share this blog, you help to bring the publication of Embracing Chaos to pass, and the message of embracing and loving difference to a wider and wider audience. Which, I think, is a really great idea.

 

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The Strength of Ten Grinches – Plus Two

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My sister already asked me way back at the beginning of the month what I am going to do about Owen this Christmas. She means, what am I going to do to stop Owen’s trying to stop Christmas from coming. From sneaking downstairs like he did last year, devouring every bit of Christmas stocking candy in the wee small hours of the morning, leaving a pile of papers a foot high and “a crumb that was even too small for a mouse.” His siblings were not amused. (Read about last Christmas Naughty – or – Nice -?)

Of course longtime readers know what we tried to do. We built a wonderful, beautiful, aesthetically elegant gate on the stairs!  And then Owen learned to scale the darn banister in no time flat, skipping that gate entirely. (“Once More Into the Breach—!”)

We have to stop Grinchy from coming — BUT HOW?

We rallied of course. Like the Whos. We joined hands and remembered – after a dark despairing little walk in the woods to cool down and warm up – that Christmas happiness didn’t require a thoughtfully arranged, candy-laden Christmas stocking.

Still, even a carefree Who doesn’t want to go through that every holiday.

I have considered floor to ceiling cargo netting along the banister – but cargo netting in a foyer isn’t really my look. And stapling Owen to his bed, or locking him in his room would not be approved of, by me or anyone else (except in a few dark moments maybe). Meanwhile, Owen was busy as ever last night, shredding holiday cards, searching baskets, swiping food off the counter, chopping his sister’s ID card. Much as he loves brothers and sisters coming home, this doesn’t seem to calm him. The time-out chair was kept warm. Must be a lot of stress trying “be nice.” Apparently he can’t take it. How can we both love our Owen and protect our property? How to foil our marauding Christmas bandit?

I know that the best bet will probably always be distraction  – in the spirit of the family I heard of  who used motion activated water (fountain and sprinklers) to distract their runner. If their child bolted out the front door, that moving water captured him, and redirected his attention to the front yard, buying mom and dad a few more minutes to locate him. If I create a barrier, I know that Owen will focus his energies on how to thwart my efforts to control him, displaying strength or agility we didn’t know he had.

This in itself is pretty cool, and I wish I weren’t so tired from getting up every morning with him at 6am that my brain cells are compromised. I’d like to figure out how to employ this phenomenon usefully to make his life richer and more interesting. It’s good to have a reason to fight! Imagine how interesting life would be if we all had to climb down a cargo net to breakfast each morning.

I must stop Owen from descending – But how?

Perhaps hang his stocking at the end of his bed for him to pilfer and explore? Or is that too obvious. Hmm. Maybe it should be dangling casually from the top of the bathroom medicine cabinet?… Or not quite out of reach, on the floor? Just through the bars of the temporary pressure gate in the hall – because there’s no doubt a temporary gate is going to be required across the hallway outside his door. This temporary barrier in place, he still could access the hall bathroom, and check up on his siblings, but not make it to the stairs. Nor incidentally could he reach his dad’s and my room. That does sound good. Usually I want Owen to be able to come and get me when he needs me at night. But maybe not for the short number of sleeping hours on Christmas eve.

And maybe the distraction method does not just apply to Owen – last week we celebrated Edward’s birthday with an evening out. Dinner with mulled wine, and a play – a wonderful theatricalization in words, sing, and dance of Melville’s Moby Dick. It transported us to a different dimension. We came home relaxed. Light. Strengthened.

Respite for long term caregivers is distraction.  Caregivers will still have to face their challenges again tomorrow, but strengthened by a break we can face with humor and patience what we might otherwise grit our teeth and “get through.” Our loved ones don’t just need our hands – they need our hearts. They need our attention. And giving attention is by far the hardest thing.

And so I find that this post is really an acknowledgement: Thank you. Thank you Emma, for an evening out. Thank you Kathie, for walking and talking with Owen twice a week, week after week! And thank you folks at New Horizons, Stephen and Damian, James the van driver, and director Ron Vaughn – for the gift of your attention to some special people, including our Owen.  What a Christmas present, every day.

“And the minute his heart didn’t feel quite so tight,

He whizzed with his load through the bright morning light! –“

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 How The Grinch Stole Christmas by Dr. Seuss 

 

Bad King John

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King John was not a good man –  

He had his little ways.  

And sometimes no one spoke to him

For days and days and days…                                  A.A.Milne,  Now We Are Six

Owen has been sending me messages. He might not have a lot of language accessible, but he has his little ways. Which is probably why I found myself reciting this poem in meaningful tones. I am hunting for the toothpaste and find it, chopped. Photos of his siblings lie in a pile of cut pieces.

A few days ago Owen wouldn’t come down for dinner when called. I had to go upstairs, into his room, where he was bending over  his collection of plastics in the big rolling drawer under his bed, chopping away.  After a peaceful dinner together, when he seemed finished eating, I cleared the food away, and sunk down exhausted to watch a movie. I invited him to join me. But Owen didn’t go for The Fisher King with Jeff Bridges and Robin Williams. While I was absorbing the bizarre plot, he stood outside the kitchen reaching across the counter eating more and more of the green beans and green peppers than any reasonable person should even want to contain. So there went tomorrow’s lunch.

“Seems a little excessive, Owen,” I said as I harumphed up from my movie. “Been on my feet this whole time,” I sulked to him, scooping what was left of supper into plastic boxes for lunch. “How many green beans can one person hold?” I asked rhetorically. There’s stress-eating, and there’s eating from loneliness, and then there’s eating to tick your mother off. To show that you can, perhaps. To assert independence

King John was not a good man,  

  He lived his life aloof;  

Alone he thought his message out      

  While climbing up the roof.

He wrote it down and propped it up

  Against the chimney stack–

Since Owen didn’t want to watch a movie with me, I figured it was bedtime. But once upstairs Owen didn’t want to get undressed. He didn’t want to come into his bedroom either, but stood out in the hall in an abstract attitude.

“You ignore me, I ignore you.” It couldn’t be plainer if he had written it out.

Amazing that you could spend hours, days, years even, caring for someone’s body needs and remain oblivious of his social, psychological, emotional, or spiritual needs. Shocking to recognize it – and annoying! – but yeah, it’s true. Knowing Owen as well a I do, I can still easily miss cues. I can find myself tuning him out mentally while I am busily caring for his physical needs. When I realize that a set of behaviors are a message, it’s a relief – but some part of my mind still feels manipulated, still asks “Why didn’t you just say so?”

King John was not a good man –

  He wrote his message out,

And gat him to his room again

  Descending by the spout.

Communication is just good. Any old kind. That’s the thing. And I am so glad that Owen persists stubbornly on, trying to tell me stuff when I am too tuned out to notice or listen or see what life looks like from his perspective. Dinner at home with just dad and mom is pretty dull compared to what he grew up with; dinner with only mom who is tired and plunks down in front of a boring movie is even worse. It’s really lonely to be tuned out or ignored – much worse than actually being alone, in your bedroom.

I was reminded this weekend how much Owen likes to have his tribe around him when half of the family came over for a Redskins game Sunday afternoon. Owen had been SO BUSY looking everywhere for hiding Christmas packages I think, hunting through the packets in my closet and my studio, pulling out a package of candles, throwing half of them into the trash…aaarrggghhh. I took him and the dogs for a walk to give his dad some peaceful visiting time, and when we came home there was a fire in fireplace, and family gathered around the television, roaring appropriately, and Owen became very calm.

I want some crackers,  

  And I want some candy.   

I think a box of chocolates

  Would come in handy.  

I don’t mind oranges,

  I do like nuts    

And I SHOULD like a pocket knife – that really cuts.  

  And, oh!  Father Christmas if you love me at all—

King John had his own dreams for Christmas (link below to read more about him), and Owen seems to share many of them. But I wouldn’t be a bit surprised to learn (if he were able to tell me) that for Owen, the biggest thing on his wish list is to be surrounded by his family — with lots of oranges, nuts and chocolates thrown in for good measure.file_001

 

 

 

 

Not familiar?  To read all of A. A. Milne’s whimsical poem about Bad King John and Father Christmas, click on this link. Continue reading

Thanksgiving Fetishes

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It is early Thanksgiving morning and Owen is celebtating. He has his plastic pieces, and is sitting warm in bed between his dad and mom in a rental home in the snowy Poconos mountains. Lucky guy. Pretty cozy. Even more cozy if he would lie down, so the comforter and blankets would cover his dad’s left shoulder and his mom’s back. However, Owen cannot be convinced. He does not like going back to sleep after his customary 6am, regardless of holiday. It may be that his empty tummy rumbles right up throat-ward. Or it may be that Owen doesn’t like being prone when awake. Logical.

The three of them are pretty content with their compromise, worked out over years. Those who prefer to be horizontal on a dark cold holiday morning are grateful to be lying down. And those who dont prefer it, are resigned to be slouched forward, partially covered. Owen should be grateful to be warm between two heat-producing mammals, crackling his plastic, instead of prowling the icy hallways partially clad – but this may in fact have been his first choice, if consultd. But if he isn’t grateful, well, you cant always get what you want but if you try sometimes you might find you get what ya need.

Snap. Crack.

Crackle. Snap.

Owen is lucky enough to be a member of a very large extended family. This year he joins the tolerant Simons clan, who come together across hundreds of miles every two years celebrate this holiday and have Owen appreciate and rifle through their possessions, and love him anyway. Hopefully all Owen’s admirers are similarly blessed.

Owen’s aunts, uncles, and cousins are used to him and his ways, so when he swipes Uncle Hil’s drink bottle a universal shout of “Owen! You crapster!” will go up and that’s that. They knew him as a fussy little crapster, and as a middle sized crapster, and so the shift to plastic-obssessed young adult crapster isn’t too much of a shock. Those infant episodes, such as when Aunt Alicia startled to feel a small appreciative hand pat-patting its way around her shapely, velveteen clad posterior, have an endearing impact on a relationship otherwise strained by trying to recreate while guarding one’s ginger ale from a relative with an “I came, I saw, I conquered” approach to all plastic products.

Just last week Owen’s mom discovered a dozen eggs rolling about in the refrigerstor bin, with some once-bitten apples, the clear plastic egg crate that held them disappeared. New lows in thievery.

As this Thanksgiving unfolds, there will be much to be grateful for in Owen’s world (mashed rutabega and pecan crunch pumpkin pie!) and there will be things to avoid (even if mom bought all cardboard egg crates). This will be true across this huge and diverse nation of ours – as we come together to celebrate and try not to talk about inflamatory political subjects. Resist the plastic egg crate – or better yet don’t buy one! Do not covet your neighbor’s plastic bottle. And relax and warm yourself between the other heat-radiating mamals. You and Owen are blessed.

Rainy Hour at the Aquarium

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Photo by Freya Simons

Toward the end of a very busy Memorial Day Weekend, Owen was getting bored.  Mom and dad were more than a little exhausted.  Not feeling too generous nor too creative.  Very likely, it would have been a long cloudy afternoon of breaking up plastic pots into bits and swatting mosquitoes for him, but Owen got lucky.

His sister Freya offered to take him with her and her boyfriend Keir to the Baltimore Aquarium for the afternoon.  I am still wowed and shaking my head at their generosity.  Perhaps they are, too.

“Mom, if you get a nap, it will all be worth it,” Freya said.  Worth her effort, I guess she meant.

Yup.  It was certainly worth it.  Dad and mom got naps.  And then, undeterred by rain that descended the very moment we headed out into the yard, we had a carefree hour planting herbs and vegetables, and got soaking wet in the downpour like goof balls.  Two and half  precious hours of unscheduled freedom later we were dry and dressed and driving up to Baltimore under grey skies to meet for supper and to liberate our benefactors.

Meanwhile Owen had been keeping busy.

The line to the aquarium was very long – plenty of other folks had the same idea for entertainment on a rainy afternoon of a holiday weekend.  But Owen doesn’t do standing still in line.  So to distract him Freya and Keir took him through the tents and market stalls and displays of the adjacent Middle Eastern Bazaar.  Very fast.  Lots of noises, sounds, images, and no cues for Owen as to why he was there or what he was supposed to do there.  As I understand it, Owen got busier.

They got back in line at the appointed time to learn that the tickets were $40 each!! (Owen treated).  In the end Owen, Freya, and Keir had only one hour to look at the fish before closing.  But I understand that Owen made efficient use of their time.  In an hour, they had enough time to see “everything” Freya said — except the dolphin show.

But they did see dolphins.  Freya said this was the one time on their outing when Owen calmed down. The cherubic photo she captured above may chronicle the most peaceful moments Owen spent all day.  In the dolphin tank.  Looking for Chaos, perhaps?

An expensive hour, but a precious afternoon.  By any measure.

We got them a good supper.

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Keeping up with Owen – Baltimore Aquarium – photo by Freya Simons