Apparently

 

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The night before I was to leave I woke at 3am, three hours too early. I wondered why. And wondered. Did Owen maybe need me?

A trip down the chilly hall revealed Owen up on his elbows in bed, also wide awake. Who knows why. Who knows why I knew, why I felt the psychic call (did I?) for help. Do we do it to each other?

Three hours it was bathtime, and Owen and I were both up again. Then away I drove.

To be a caregiver — whether of an infant, or a sick child, a person with intellectual disability, or one with an aging body, or a friend in need — is to allow yourself to be connected. Plugged in. To respond to need at unreasonable times of day, without rancor.  Or preferably without rancor. Simply to respond, to do what needs to be done. This is pretty great spiritual practice for an independent, impatient so-in-so like me.

For the past days I have been out of reach of my Owee radar. I am sleeping very well every night. My daughter is filling my place and her father’s place, continuing her own lessons in caregiving that began early. Owen loves to have his siblings home, particularly when they are paying attention to him. I’m sure that is why I can relax so deeply.  In that sense my Owee-meter is still at work – I know he’s happy.

Freya texts me that he has been speaking in his gravelly deep voice, making remarks on a theme:

“A giant ogre!”

“Fee Fie Foe Fum”

“Cookie robots!”

Even though at home it’s cold, an ice storm in fact, and I learn they have lost electric power, I feel confident Freya has reserves of humor and creativity to manage what she is thrown.  For a few days anyway…although as I write these words down, I can feel my anxiety rising…it helps to remember that Edward will get back home before me.

When I am with Owen, my job as his  caregiver is to tune in. When away, my job is to tune out. To set down the burden of him for a while. To let go — to forget him in fact. Both things are important, in their season…each difficult. Apparently.

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Owen out for dinner – four forkfuls is better than one

 

 

 

 

 

Egg Hunt – Raw Version

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The weather in Maryland has been playing like it’s April Fools in February. Will we have summer today — or winter?  –or spring? Anybody’s guess. And maybe Owen is playing along, kind of restless and antic.

During the February week that Owen’s mom (alias me) spent sick with a relentless cold virus, things got a little more chaotic in a world always teetering on the edge of the abyss.

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Plastic piles in drifts accumulated around the furniture, an in corners of all rooms. Kale mounds spontaneously erupted on the bathroom floor.

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Or so it seemed to mom, as she dragged herself from the chair at the breakfast table to her bed again, feeling buried in detritus but just not really caring that much. Owen’s dad took wonderful care of him, as always, and waited patiently for things to normalize. Instead he got the virus. So maybe it’s understandable that Owen is a little more squirrely than usual. Or blame it on these radically changing temperatures. Owen likes predictable. So do I.

Thankfully Owen is kind of predictable, in a chaotic sort of way. Which is why, when things did begin to normalize (?) and I came into the kitchen to clean up one night, after a speedy post-grocery-shopping-with-Owen supper of omelettes, and couldn’t locate the box of eggs – the brand new bulk box of Pete and Gerry’s – I was worried. I saw that I should have known better. In a moment of foolish practicality, I had purchased those 18 eggs in the plastic box. In another moment of wooziness, I had gone to the toilet without putting the eggs away, tying up the fridge, and locking up the kitchen. Drat. And drat Pete and Gerry anyway for using a plastic box. Gone AWAL.

The beauty of being sick for a week, however, is that you get lots of time to sleep. Although end-of-day weary, my sense of humor was intact. Feeling calm, I communicated the problem to my son.

“Owen,” I said, “Where are the eggs?

Owen presented a shuttered expression.

Owen. We really, really need to find the eggs!”

No eggs in the fridge veggie drawers where I have found eggs rolling before in similar situations. No eggs in Owen’s collection-of-stuff drawer in the family room. But in the green basket beside the drawer I unearthed hunks of plastic egg crate with a telltale label chopped and mixed into the melange.

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I took Owen’s hands. “Owen, where did you put the eggs that were in the box?” I peered into his face, trying to keep my mind off of leaking albumen soaking into upholstery. “I need to find those eggs.”

He looked off away, into space, brow furrowed, mouth slack. For Owen, the shop closes down about 9pm, and after that the processing of language will be even harder than it always is.  He looked as though deep thinking were required – Eggs? hmmm. Eggs. Do I know Eggs? It seemed as though he would have liked to help me…on the other hand, he could have been really worried about what was on his horizon, when I found those eggs. What do I know. Either way, the circuits were clogged.

I took his hand, and modeled “search for” as we moved through the house. No eggs on the couch, good — and upstairs no eggs on Owen’s bed. Glory Days kale that had the misfortune to be packaged in a glamorous sunrise orange and purple bag wound up in a huge heap on Owen’s bed not too long ago.

That was my last best guess. “Owen! —–!

But oh – wait — one more idea.  Ahhhhh!

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Found. How appropriate to end an egg hunt in a basket.

I required O to help lift the leaking shells into a convenient bucket, although he wasn’t happy about those goopy egg whites

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The bucket had to be pretty clean I figured, since I usually use it for bathtime dousing. From there into a pot of hot water for the eggs, and into a newly made bed for Owen.

Edward returned from his evening meeting to find a kitchen full of groceries and a pot of hardboiled eggs — already cracked.

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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Hugh

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On the first day of this year, something awful happened in my church community. A husband lost his wife and his children their mother, when metal breakdown suddenly incomprehensibly took over her mind. Before anyone understood how ill she was, she lay dead in the woods, run there for reasons unknown. The community of her family, friends, students, and co-teachers reeled in shock. Marah had been bright, warm, and loving. A fantastic coach and a supportive mother. Accolades and heartbreak poured into Face Book from around the world, from the enormous group of people whose lives she has touched and bettered. Waves of regret and confusion still overcome those of us who wonder — why?what if–?

That is just one part of the story of Marah.

There is another part. Of course there is.  There are always more and more parts, more views and layers to a human life. Another part of Marah’s story is Hugh, her older mentally handicapped brother.

How does having a mentally challenged brother or sister affect us? I want to guess that the effects are rippling, through each family member’s life, and from the life of that family into the community around it. Whether these effects are for bad or good in an individual’s life has something to do with how the family themselves think about that handicap. And how the family thinks about the handicapped member has something to do with how far along they are in the journey of growing deeper in thought, wider in perspective, and richer in compassion. And how the family thinks has something to do with what society around the family thinks about handicaps. There are waves of influence, both ways.

But the short answer is that we cannot know — I cannot possibly guess what Hugh was in Marah’s life. I myself am the sister, and the mother, and the sister-in-law of men with intellectual disabilities. I am sure that knowing my brother and my brother in law changed me – I know for certain that I am a better woman because of caring for Owen. But to quantify or qualify it even in my own life would be difficult. What exactly have I learned from Keith, Chuck, and Owen?

But what I believe is that Hugh was in Marah’s life for a reason.  I believe in preparation – which some people call Providence. That certain things and maybe even all things that happen in your life can be used to prepare you for your next step – if you chose to see it that way. Not that bad and difficult things are hurled at you from the clouds to teach you a “lesson” — but that Love pouring over you, coursing through you, will keep on trying to bring good things from every experience – whether it’s the experience of being handicapped, or of trying to understand someone handicapped. The force that pulls us toward growth: Providence.  Surely God or Love can’t be so much concerned about whether we get a cold or win the lottery, but rather is tenderly careful of the deeper things at work in us, those things that make us “us.”  The opportunity is always there for us to grow – deeper in thought, wider in perspective, richer in compassion.

Hugh did not live with his family by the time Marah was born, because as a boy he was too hard for his parents to manage. He lived in a group home. But I imagine he was always there, in that way that the special needs member of a family is always present in the hearts and minds and sometimes the anxieties of their family. Every holiday he came home. This is when I met Hugh, when as a young woman I worked for his mom.

Hugh was part of my own preparation for being Owen’s mother. I did not know him well. I wouldn’t have been able to know him well at that time – I was too nervous of people who were different. Hugh’s strange ways of moving and speaking made me uncomfortable, and I didn’t know what to say or how to act around him. Ironic, isn’t it. Coming to see the human in all humans is a process. It takes time. Marah, I suspect, had a leg up on that process. You have to be deeper, wider, richer than I was then. But I have often thought of Hugh, and of my own reaction to him, in the past 23 years.

Now that Marah has left her earthly shell behind, and with that shell left behind the mental or emotional malfunction with which she was coping, the vibrant, real part of her must go on. The love that made up her real life, her real self, cannot die.How could it?  Marah was a teacher who will long to keep on teaching, long to go on learning how to teach, deeper, wider, and richer . (Do you doubt it? How could you snuff out a unique soul, any more than a disability can extinguish one?) Wakening, and learning where she is, she will certainly remember and want to see her brother Hugh, who was some part of teaching her what she needed to know in her life here. Perhaps he will be again.

Hugh, surely, is almost unrecognizable. The body that so obscured his true spirit when she knew him, he left behind on earth here years ago. His personality now shines freely from his eyes and face. Shines into his little sister’s face.  There is much more to know, much more to learn, Marah. Come and see.

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New Year’s Acknowledgements

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Many friends and relatives have been very kind in supporting of my writing endeavors. But unknown to all, it is really the woman at the cash register of my health food store who keeps me writing. When in a slump, or distracted from my writing by life’s madness, sooner or later I know I will have to face her, as I send my groceries down the conveyor belt to be rung up and bagged.

“I haven’t heard anything from you for a while,” Sherrie admonished once.

Oh the shame. Keeping to schedules has never been a strength of mine.

The next time we met over the heads of kale and vitamin bottles, I mumbled something about it being pretty hard to find anything anything positive to write about Owen lately, he’s been difficult.

“Oh but you always do,” Sherrie smiled, warm, unapologetic.  Sherrie is a big fan of Owen’s adventures.

I left fortified with better things than vitamin pills.

Surely every artist must have a Sherrie.  That first person whom they know in no other way but through their art, the stranger who says those bolstering words, “I just love the way you write!”

Caring for Owen is a profound experience. As the last of his siblings returned to college this week, and Edward left for the west coast for the week on business, leaving Owen and me eyeball to eyeball, I am more conscious of the sweetness that Owen brings to my life than usual. And by that I do not mean the juice he splattered all over the floors yesterday cramming oranges into his mouth as fast as he could before I got downstairs to catch him. No, I mean something a tad more lofty. It has to do with seeing, with focus. Have you noticed that spiritual teachers seem to show up, disguised as the difficult people and the painful experiences of life?  Then there seem to be other people, wonderful mentors who show up to help one digest it all, and prod us to do something useful with all we have learned.  Owen has had his turn at both, though he seems to prefer the first role.

But today I want to acknowledge the woman behind the cash register. Without that prodding, the writing I do might never reach the light of day.  Thank you, Sherrie, for holding my feet to the fire. And yes, I will get back to work.

 

Golden

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What do you see?

When you see this photo do you think “Wow! Cool! Golden plastic!’ or do you think “Eww, raw meat bacteria!”

I realized, as Owen darted off with the gold wrapper in his hand, that I have known two people who feel excitement about trash. One of course is Owen. But perhaps Owen comes by it honestly – his great granny, Mary Scalbom Nicholson might very well have seen that golden meat wrapper the same way.

Grama Nick (as I called her) had a real eye for possibilities – and re-using refuse. She made dolls with hour glass figures using dish soap bottles. She stuffed some of her dollies with plastic bags. She sewed old panty hose or stockings onto the tops of her dollies heads (their bodies were made of recycled nylon slip) to create brown curly hair. Admittedly Owen is not so creative with his finds. But as he escaped with the meat package from the sink, I suddenly thought of Grama and smiled. And laughed. I could see her holding up that wrapper to study it, and hear her musing, “Oh look at this! Now it seems like you should be able to do something wonderful with this…”  

I witnessed her doing just that, with an old plastic box or a wrapper. She had a way of seeing things.

The Brazilian-American artist Vik Muniz is such a visionary. His approach to the world’s largest garbage dump in Rio de Janerio, for example, was transformative – for the trash pickers, for himself, and for the viewers too, I’d say. If you haven’t seen the documentary Wasteland, that describes his work there with garbage, with the workers themselves, I recommend getting it from Netflix.

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I like to imagine Vik Muniz meeting Grama. I think they would have shared a lot of mutual respect.

Today I would like to take this idea of re-seeing things one step further. In a way this is the ongoing theme of this blog, re-seeing – the difficult – the tragic – the painful as something transformative instead. In the draft for my book Embracing Chaos I write about a family in my church community who had a baby girl with Downs syndrome. Apparently the young couple did not have a negative reaction to their baby’s disability – they  embraced it, felt it was meant to be. She is perfect, the father wrote in a special needs support newsletter, he wouldn’t even want to change her, if he could. This was hard for me. It irritated me. I felt he was weird, and an extremist, and young, and wrong. His point of view challenged the anger I felt at being the mom of a boy with an intellectual disability. I loved my boy – but not what came with him.

First you have to be angry when trash falls on your life.

But after a while – a long while – of breathing – and coping – and breathing – and coping – you may find yourself staring at the same old piece of trash (it recycles for a while just as trash, have you noticed? before any transforming happens at all) in the sink. And on this day it is possible that you may find yourself asking, “Hmm. Ok. What can I do with this?”

And when you are standing at the kitchen sink of life, and the bacteria laden meat wrapper, now washed out with warm soap suds, looks like something golden – when that happens, you are looking with Owen’s eyes. And Grama Nick’s.

 

 

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