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 

 

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.

Ignoring Owen in the Dark.

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I have decided to ignore Owen.

It’s only fair – he’s been ignoring me. He has been going to some lengths lately to let me know that:

 “No, my reverberating friend, you are not the beginning and the end–”                                       (Eliza to Professor Henry Higgins, My Fair Lady)

If I say “Let’s go for a walk,” he flattens himself against the wall. If I put out a lemon wedge for him he doesn’t touch it, but will sneak behind my back to swipe one out of the fridge. Or eat the one in my glass. I offer him a spoon of cookie batter, and he is silent. He echos “No fank you.” So there. Keep your darn cookie batter! You can’t control me with it!  To some extent, Owen’s always been like that. To some extent, all my kids are. I call this an artist temperament, but you could say cussedness.

So today, I thought I would write about something else. So there. It is could be difficult, but somehow I will manage, if only to show that—

“There’ll be fruit on the tree! and a shore by the sea!  There’ll be crumpets and tea without you!”  (Ditto.)  (So there)

As I’ve mentioned before, it’s important to me not to let Owen win. Owen can be very competitive. Unlike me. Did I mention that he is still climbing over the banister about every morning, just for the thrill of picking up a few extra plastic chunks out of his drawer of stuff? But if he isn’t climbing the kitchen gate too, and marauding in the kitchen, it’s not enough to get me out of bed in the pitch dark to prevent.

Pitch dark. Like right now, outside my studio window.

It is far too dark in the mornings lately. Readers may remember that in past seasons I have bemoaned the biannual time change. Not this year. I have been looking forward to it for about two months. I’ve been trying to alter my rising time so as to flow right into the new time without a hitch.

[I tried to get Owen to segue his time change too; naturally, he started getting up earlier. Besides, I am not talking about him.]

There is no writing time like that early morning space, when Edward and dogs and chickens are sleeping, and Other People are tubbing. Or climbing over the banister to get more toys for their baths. But as the mornings get darker I find I just can’t do it. This could be because after 53 years under the rule of Benjamin Franklin my body is habitually prepared to be assaulted by the changing of the clocks about this time of year.  The pitch darkness that used to be 6am will soon be an ungodly 5 am, an hour when no one should be vertical. It’s true, it’s true, 4 am is worse – let’s not talk about it. Especially in the presence of anyone I am ignoring.

This fall I am again getting into the meat of rewriting a story, and that early morning hour is needed. Without it, I either never get to writing, or I sit down and don’t know how to stop. I lose all sense of time, caught up in an imaginary world of my own making…miss my lunch… miss my nap… Bad news. Writing from 6 to 7ish allows that special peace before then the flood of Human and Domestic Need necessarily drags me away from the imaginary to the real world. It works.

All my life I have I have been fairly lousy at managing time. And since it is just an imaginary thing anyway (as Ben Franklin’s rash action and sun dials prove), who cares? Except that everyone else in the whole world runs their lives according to this imaginary measure. Simply put, I am handicapped. One minute I am relaxed and swimming in time, and the next scampering down a vanishing sliver of pathway that becomes stepping stones over a rushing fiery river of lateness. Out of time and out of breath. Since I am now half a century old and still do not have any innate sense of time passing I do not expect to ever have one. My only hope is to create a kind of rhythm to my days, so that my rhythm tells me hey isn’t it about “time” you switched over from X to Y?  It can take me a while to create a new rhythm though, the in between is not pretty.

[This is probably how some Other People operate too, but since he doesn’t exist, never mind.]

So this year, as the peaceful dim summer 6am became the grim pitch black 6am, I saw old Ben’s time change concept with new and grateful eyes. Maybe he did know a thing or two, after all. Well, I’m grateful to him.

THUMP!

What was that??  isn’t that the sliding door to the kitchen–?!  Hey doggone it – what time is it??!

Trash Pickin’ with a Chicken

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This October marks this blog’s two year anniversary. I’ve been writing my other blog    suburbangrowing.com for about the same length of time. And in these two years of posting, one thing I’ve learned: people like to read about chickens. They’re vogue.

Odd, isn’t it.

Could it be that more important subjects could be brought to general attention via this chicken interest? TRUMP Kisses Chicken. Clinton Reveals Her Design for Better Nesting Box. Trump: A Chicken in Every Pot!!  Nah. Those guys are doing fine without chickens.

But a guy like Owen might need a glamour boost.

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Looking into my third year of writing for you here, I recommit to the original purpose and to the title of this blog, Embracing Chaos. The purpose was not to talk about the chaos – nor about Chaos himself – fun a it is to tell stories on Owen. The embracing part is what people really don’t get. What I didn’t get for a long time. Nice as the words sound, how do you bend gracefully, and embrace chaos?  What does that mean? That’s what my life’s journey is to find out.

In many ways, I began to get the beauty of Owen and the mayhem that comes with him when I started writing about him.Funny isn’t it how you can know a thing – but then know it – then really get it. Probably you can really get it numerous times. I’ll bet the lessons can go on that way, deeper and deeper, and on and on. Funny if after all the work we do for years to make, and create, and build, the thing for us to get might be how to give up (the illusion of) control.

But chaos is not unique to parents of kids with disabilities. Everyone experiences this. Chaos. The lack of control. Isn’t this part of why people love frightening roller coaster rides? To experience total lack of control, and come out ok at the other end. Your life, in miniature, and super fast. It’s a funny way of telling yourself Despite appearances, everything will be ok.

If this blog is successful, going forward into its new year it will speak to people with all types of experiences with the uncontrollable, the tsunamis in their lives, and all kinds of learning to embrace lack of control over them. This is a blog about CHAOS, and EMBRACING. Everybody has some.

When people don’t know what else to say to be supportive, if confronted by a handicapped child and his mom or dad they may say things like, “You must be a special person to have been given this job” or  “God knew you could handle this” or “I don’t know how you do it” or even “I would have left.” But these sentences exactly describe how I feel when I watch my friend Carina teaching Phys Ed to multiple combined  classes of squealing primary school kids. This is how I feel when I read FaceBook posts from my niece Justine, who is far from home, pregnant, morning sick, and caring for a vivacious toddler full time. (And I even did that once!) I really don’t know how you do it. I think I would leave.

I have a dear friend who is one of my Other Mothers, (one mom is never enough) named Gray and she recently shared this thought: “The more I read Arcana Celestia [a sacred text of her faith], the more I realize I don’t know what good is.” I had no idea what she meant, so I waited.  Gray explained that knowing the truth is easy compared to being able to see what, in a person’s life, at a point in time, could be called “good.” What they need, to become whole, or close to God. What events/choices, will lead to long-term happiness.

At first you think knowing good from bad is way easy – pain is bad, happy is good, right? – until you look backward and realize that some of your most aversive experiences, the most annoying jobs, the most difficult people, have taught you the most about yourself, who you do and don’t want to be. Even the painful, horrible experiences, or the terrible screw ups, can transform you. Sometimes people are transformed for the worse at first by tough things happening, but over time become enriched by processing that same old bad thing. So, were those bad experiences bad, or really in the end good? It’s a humbling reflection.

Coming back to the garden imagery, chickens and all, humans would like to think that Fairy Godmothers transform us, with pumpkins and magic. Really, it’s a lot more likely to be the manure. That chicken poo is potent stuff. At first it burns, but over time…well, that’s what soil is.

I am not a special person, even after being worked over by Owen for 23 years. I will take credit for not leaving, not climbing on that mythic bus to sunny Mexico. But I am just another trash picker with you, on a walk through the woods. Owen and other contributors to the chaos of my life will surely teach me again and again the lessons of EMBRACING my lack of control. Chaos, it turns out, may be the fairy godmother. And there is no short-cut to transformation. So I guess I’ll let the chickens peck the pumpkins.

 

 

Art Therapy

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I believe in the power of beautiful fibers. Nice clothes. For everyone, but especially for Owen.  Not necessarily fancy, nor expensive.  Not uncomfortable!  Certainly nothing that would interfere with self-dressing. I mean clothing in soft rich colors, that brings out the best in a person’s complexion, made out of quality fibers: cotton, linen, wool, silk, bamboo.

You may think I sound like a snob. Yep, I guess you’d be right.  I am. But I’m not that kind of snob! To me the label doesn’t matter, except as a guide to how a garment is made. Old, new, or second hand doesn’t matter. The crafting of a fabric and of the garment made from it is something I notice, and I think most people do subconsciously. When I am around people who dress joyfully, I feel the joy expressed by their clothing, it lifts me up.  The difference between that and just putting on any old clothes is like the difference between delicious dining and Spam for dinner.  It’s the difference between delight and fatigue.  The women and men who take the time to dress up are an inspiration, bring a smile to my face. They are like walking artworks, and their effort an act of charity. I do not always bother to take real care in dressing myself — sometimes life says you just gotta go for the Spam.  But I always appreciate people who do. Clothes are not the most important thing around.  Still, snob or artisan that I am, I can tell from a distance, at a touch,  wool or cotton or silk garment from one dredged out of petroleum.  Petroleum, in my opinion, has no business becoming a fabric.

I do my best to put Owen into nice looking clothes. Again, I don’t mean formal or dressy ones, and function is key. Owen needs elastic waist pants, and he can’t do button up shirts. But that doesn’t mean he has to spend the rest of his life in grey sweat pants either. You get treated better, out there in the big world, when your colors harmonize and your fibers are nice. You look like someone cares, and there’s power in that. You know how Harry Potter was protected from an infant death by the power of his mother’s love?  Well. There you go.  We muggle mothers may not know magic spells, but we do what we can.

My husband for some reason lacks these sensitivities to color and fiber. When Edward helps Owen get dressed it might be in colors that clash, or are shapeless, or have some leftover food on them.  Hard to take. Usually I don’t try to take it – I change Owen’s clothes.  And luckily Edward laughs.

Owen has his own ideas about good clothing and the lack of it. The lack of all clothing may be his most preferred mode – although thankfully he is not one prone to public stripping. Most days he is resigned to his clothes. But Owen does not share my fondness for collared shirts.

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I think it’s the placket down the front, with the buttons and button holes in it, that irritates him. Some of them are itchy. He’d prefer a T-shirt. Even a t-shirt is not safe from peril though when Owen is unhappy, or life is boring or frustrating.  He bites them, chewing holes, sometimes (shudder) ripping.  He can’t express himself easily in words, so if the air conditioning is too cold or the music too loud on his van, if he’s thirsty or he’s hot, if he is feeling grumpy to be prevented from snatching some bottle he particularly likes, that defenseless, irritating shirt is right there on his chest and takes the brunt of unexpressed emotions.  Like Rudyard Kipling’s rhinoceros, Owen rumples, bites, chews that outer annoying layer, til he looks nothing like he did when his mama sent him forth.

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Once upon a time Owen had a great collection of richly colored knit shirts with collars. They slowly developed a smattering of small holes, as if moths had been busy. Edward is more sensitive than I to these holes in the fronts of Owen’s shirts.  He may not notice color and shape, but he does notice holes.  While I was still stubbornly refusing to jettison what in every other way was a really nice shirt, he was shaking his head at me  – honey, pitch. Oh no! Throw out shirts? What a crime!! Perfectly good, but for 15-20 holes of varying sizes!   It felt like letting Owen win, in the negative sense. I absolutely favor Owen winning in any positive sense. But isn’t one of the basic rules of life  don’t eat the quality fibers?!!

I was embarrassed to think I had been buying new shirts all those years for Owen to destroy.  I began to shop thrift shops for richly colored collared shirts.  But when he came off the van this summer wearing a formerly sharp-looking dark navy and white pin stripe LandsEnd shirt ripped across from placket to shoulder seam, that was it.  My last straw.  I culled all the chewed and bitten shirts from his closet, from the corners of laundry shelves, and from my dusty sewing basket.  I stared darkly at the huge mound of lovely colors that had been Owen’s clothes, trying to prepare my mind to throw them in the trash. Talk about building sandcastles in a storm!  What could be done about such staggering wastefulness?…

Then inspiration struck.  Taking up scissors, I cut one chewed shirt round and round diagonally, into a long strip. I kept going, right up through those holes, to the collar. Then I cut up another shirt.  Combining those rich colored fabric strips into pleasing threesomes, I then began to braid them.

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Ha ha! Who’s won now? I thought with great satisfaction. I began to sew them into a spiral, round and round making a larger and larger circle of colorful braids from shirts. It helped the progression of the rug that I was sick with a horrible ear infection for about three weeks. I had to sit still, so I sewed–

                      (Above: Owen and I spending a peaceful summer afternoon, sick in bed)

There is certainly no shortage of raw material. When I get it done, those shirts will become a rug for Owen’s floor.  It’s true that Owen could still get the last laugh, if he pees on it.  (Bronwyn says she’s betting on Owen.)  Still, I have not been bested in the fight for beauty – those shirts, like so many phoenixes, will rise again! It is immensely satisfying.  And rugs can be washed.

Our niece Amara is studying art therapy and counseling at Southwestern College, in New Mexico right now.  In her program she is learning to help people use artwork to heal from trauma.  Chatting with her by cell phone this summer, and texting photos of the colorful shirt rug in progress, I realized that I was living proof of the effectiveness of her program.  When rage and frustration can be channeled into something else, something new, it fills a void – it gives us hope. It satisfies a longing.  Maybe it gives some control, or the illusion thereof.

Things are always breaking, always falling apart. Chewed shirts continue to arrive in my laundry stream, and determinations have to be made: “How chewed is too chewed to wear?”  The creative process may be less an activity than a mindset, a transformative way of seeing.

The rug of braided shirts, born of Owen’s frustrations, and his mother’s frustrations, and the deaths of innumerable shirts, is a symbol in my life for the remarkable way that life goes on being created, too, right along with destruction, and joy goes on being created, every day, out of the shards of whatever is left.

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Summer car trip

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Hmmm. Maybe I’ll keep that shirt rug for a morning meditation mat.

“Once More Into the Breach—!”

wystansimons2 Comments

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End of summer. August  crackles into September. The burnt, weedy lawns and tired, browning woods of Maryland get a reprieve while the September 1st rain falls gently over everything today.

What a summer it has been! Full of rich and varied experiences, some colorful, some painful, some just satisfying — like fruits ripening in the garden (those the chickens don’t get), as the dry and dusty summer finishes off.  Sweet in the mouth, sweeter still in the remembering.

And how glad I am to return to my old schedule! And to grab onto it, to save me from being swept away in the flurry of moving out as Owen’s brother and sisters return to their schools, colleges, dormitories, and apartments. We love them, but increasingly The Return of Loved Ones means chaos as much as delightful family time. It’s always temporary. And temporary is hard. Goodbye is hard. Being second-best is hard.

I must be getting old and rigid.

Owen celebrated his 23rd birthday this August with previously undreamed of feats of athletic prowess.  Maybe he was inspired by the Olympic Games.  The solid wooden gate that his dad and I had built into the stairs early this summer only confounded him for about four weeks before I discovered him on the other side of it early one morning, arms laden with plastic. The idea of course was to keep our early riser safe and upstairs and out of the refridge in the wee small hours of morning.  It is oak, very solid and beautiful, and carpenter Michael Kaub put hours of careful thought into its design.  Mr Kaub tried to anticipate how Owen might try to defy the gate, and built it to withstand that assault.

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Owen however does not operate by assault. (Unless it’s the plastics community speaking – and they have a point.)  He is not a ruffian. He schmoozes. He prowls. He persists.  He snatches.  And, apparently, he climbs.

So, there was Owen, naked and laden with plastic.  Being exasperated I said, “Ok, Owen, climb back up.”  And, with great grace and very little hesitation, he grasped the banister, stepped up high onto the ledge outside of the banister, clung, balanced, swung his leg over the banister, still laden with plastic, and (ouch) there he was, somewhat like Pooh bear escaping to the branch with his five pots of honey, somewhat less furry.

Drat.

Not easily to be bested, Owen’s father took  the walking staff collection, summering on our front porch, and lashed those poles to the first three palings of the ascending staircase above the gate.  That upgrade (?) bought us another week of peace.

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And then one morning, there was Owen, outside the gate…

So, Edward re-lashed those poles, higher up the banister! (There! Ha!!)  Well. That might have lasted a night before Jack Be Nimble risked life and limb in a continuing bid for freedom.

And this is where it stops, because much as I like to encourage athletic activity in all my family, and much as I am impressed with the determination and stubbornness of my “low-tone” son (!), the result in case of error on his part could be very painful.  Anyway, the whole failed point of that gate was to contain the guy.

Kathie, Owen’s regular sitter, a mother and grandmother and experienced caregiver, wondered about how likely it was that Owe might try to go down the outside of the entire staircase as we began to build.  Yep – she called it.

Now I would love to post for you Owen-appreciators footage from the video I captured of my son going up the down staircase and over the handrail at 7am.  But since he was naked at the time, it hardly seems fair to him.  The Internet is a questionable place. You will just have to imagine his Gollum-like form, stretched out in the half-light.

So, as Owen sometimes says, “Now what?”  Where do we go from here?  We could try locating the new gate to the top of the stairs – but remember Kathie’s concern – would he go right over at the top?? The best results I have ever had managing Owen’s meanderings have been with distraction methods.  The awful pots of schlock to the right of the front stairs, for instance, hold Owen’s cache of stuff and draw his attention from front or back yard. Like a library he borrows and returns items, sometimes expanding the collection. This is my best insurance against him bolting out of the yard to forage elsewhere. It is not foolproof – but it can buy you time.

And so, for the moment I will put a drink and nice bowl of fruit or veggies, or lemons (did I tell you how much Owen loves lemons?) on the table outside his room – or I will set a new bottle to chop and the blunt nosed scissors beside the drawer full of plastic schlock under his bed. This will make the effort of going over the banister much less appealing.  Maybe 30 minutes less appealing…  thirty minutes between 5:30 and 6am is worth it.

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