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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Blurred

 

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Above my studio desk is tacked a pen and ink sketch of a woodland shoreline. “To Mother, With dearest love from Marianne”  reads the inscription at the bottom, a Christmas gift my mother to her own mother. When I look at it, I think of the bond that my mother and her mother shared, and the many letters that traveled between them. Below this, also tacked to my wall, a huge paper is filled with a child’s water color of a figure and the words MOM FREYA MOM FREYA.

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When my daughter painted that joyful pink and purple figure, its stick arms and fingers spread wide to give or receive a hug, was it an image of herself  or of her mother that she captured there?  The lines that form the boundaries of self-hood can blur. Who is who? What parts of me overlap with you, in a given moment, and what parts of you are responsible for me?

Misunderstanding, trampling the boundary between self and other seems part of the human experience. At least this is what I have witnessed in my own evolution as a human being. Not only between mother/father and child, but between lovers, in academia, in art, in business.  A mother takes over her child’s wedding, a father tries to turn his son or daughter into the athlete he never was, a surgeon is overbearing, a nurse bosses the patient in her care, a receptionist takes out her tooth pain on the next caller. Every day, in 100 ways, we crowd each other, mostly unintentionally. How easy it can be to forget that every person we meet has a unique thinking and a singular experience of reality.  Especially those we know the best and love most dearly.  We can lose track of our sacred separateness – until a clonk on the head reminds us how we transgress. But only in a heavenly marriage have two the option to become “one heart and lungs.” Any other time, try to start breathing for someone else and suffocation is the only possible result.

Dealing with a person who is mentally disabled, who cannot speak for himself,  invites the blurring of boundaries. As we head into winter I try to figure out: is Owen cold? or is it just that I am cold?  Owen’s way of showing that he is too hot is to be cranky until someone removes a layer. Why doesn’t he just remove a layer? Given his tendency to take a tour of the patio mid-Saturday-morning-bath, even on a recent 20 degree morning, his mother is inclined to guess that his sensory system does not work right. But those who do not speak or care for themselves, even those whose sensory systems do not relay accurate messages, can still have a great deal going on in their brains.  Wants, frustrations, fears. It is up to those caring for them to intuit needs and desires, guide behavior, and yet to respect their autonomy.

For Owen these past weeks of my recovery from surgery have been a trial I think.  It has been both amusing and frustrating to watch Owen and the bulldog Trum each misbehave as kind volunteers and helpers attempt to take them out for walks. Trum stops midwalk to turn and stare at the person at the other end of his leash, Owen stonewalls about leaving the house, or walking down the trail in the woods. Of course Owen stonewalls for me too, in normal life. There could be so many reasons for his uncoopertive behavior.  He could be voicing the eternal “NO!!!” but he could just have a stomach ache. I cannot take ownership of my child or my dog’s ungrateful behavior. I can only be grateful that there are friends willing to step in and try to shoulder the burden of running our family.

My job is to heal, something that is taking far longer than I ever expected.  As I try to resume my normal life the smallest things such as the way I snap the sheets when folding them, or swoosh the water down the drain after Owen’s bath, or chop the carrots is rough on my healing armpit muscles. I seem to keep re-injuring tissue not yet healed. Even small movements like typing and writing weary the scar tissues there. Why is it taking so long?  No one has suggested an answer. Maybe I am abnormal.  But I have no control over this either. My armpit muscles and myself share a lot of turf, but I cannot change them. I want them to hurry up, they seem to want me to slow waaaaay down.

When I pictured how our family would get through this challenge, I worried about how reactive Owen might be to the changes, and what form his acting-out may take, whether he would make horrible messes for unhappy people to clean up.  You would think that a woman who blogs under the banner of “embracing chaos” would be more chill about letting go — but it’s one thing to embrace your own chaos, and another to ask other people to do the same. I have watched people come and cook, and go buy groceries, and I have witnessed people come and take recalcitrant Owen for walks, and wash our laundry now for almost four weeks. It is humbling to allow those boundaries to be blurred, and to receive care. And it is hard.

We code events in life as good or bad, but how do we really know?  An unfortunate event makes unexpected growth or relationship possible that was not possible before, or without it. We want to think we know, but there is so much we do not understand. What seemed chaos falls into order.  What was intended well can be revealed to be destructive. The boundaries can blur.

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I remember a painful phone conversation I had with the author of this painting, in which she was able to tell me how much it angered and hurt when I said what I thought was the reason for her past adolescent behavior. Even though the event had happened years before, it felt so good to her to speak of it, to cry over that broken boundary between us, to ask how how could I presume to know what she herself was still figuring out?  How indeed.  Thankfully, boundaries blurred and broken, like aggravated muscle tissue can be healed, with time, with rest. With apology.

My mother struggled with boundaries, a tendency to try to manage what she could not manage, or to control what was not hers to control.  I remember her telling me that silver jewelry was for me, based not upon what I preferred to wear, but on my skin tone.  For a while I did wear only silver jewelry; it didn’t hurt me. She only wanted me to feel beautiful — missing the fact that I already did. In her last months on earth I remember watching her advise a family member how to dress better, what category she belonged to, based on her reading of the book Color Me Beautiful.  My 20 year old self was outraged and called her out on it in words I cannot remember. She did not deny it — but wept.

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Wonder where the heck I am coming from about a married pair becoming like one heart and lungs? It’s better explained here by Curtis at Off the Left Eye.

Dinner

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A lot to digest…

Much like the snake I photographed in the chicken run a few weeks ago, (find Part 1 at suburbangrowing.com)  the human folks at our house have been working our way through a big meal this fall. Speaking only for myself, in September I wasn’t able to write or do much else of real meat (haha), besides eat, breathe, sleep, and process. Me and the snake. Thank goodness the surgery date is moved up into October, and so we can get through quicker.  It’s “really just a blip on the way to the rest of your life” as my mother-in-law put it, bless her, I hope so. The footage of snake working its jaws around bird is a graphic if gory presentation of the job at hand. Feathers and all. Feet last. Once you get all the information downloaded, which is worth taking your time about, you still need to come to terms with it, and that also takes time. The correspondence is complete, even to the fact that this experience of having cancer is a kind of a meal, something I will grow from going through, and be enriched by. Although I guess that’s up to me.

Owen may be affected by the vibes, or just doing an unusually busy stage of his own development. Lately, he’s been showing affiliation with his Nordic ancestry and leaving warm bed or hot bath for the cool of the brick patio backyard, where he will stand chopping plastic at the table until he feels sufficiently chilled.  Or until I go look for him. He has figured out how to operate the deadbolt on the back door to  achieve early morning freedom. But since there are plenty of shrubs around the property lines to screen him, this seems like a decision he should be allowed to make.

Owen appears fed up with being “directed” these days. And given that most of his hours he is being directed, or pushed or hurried, a little early morning nudity may be just what he needs. If only all his problem behaviors were so easy to deal with. Thank goodness for our homeopathic doctor. I really don’t care if it’s voodoo or what, but the remedy (three little pills of a dilute substance in a sugar pellet) he gave to Owen seems to be calming down his prickly irritability and mulishness.

The night-time care of Owen is another matter, and Edward and I are reaching our limit. Trying to imagine what Stage 2 of Caring for Owen might look like has been keeping me awake at night as much as Owen himself.  How can I make space for Owen to be Owen, and have a life and keep a sense of humor, as I go forward toward 60 and Edward toward 70?  How will we find the care we need for him? And if we do find it, how will I let him go from our house into the care of strangers? How do I send my son away? What kind of life will he have? The need for help is a palpable as the sadness that threatens to choke me. This is a meal to manage in tiny bites. Thank goodness for Owen’s county resources coordinator Nicole Chittams, a woman of great heart and also great practicality and many resources, who has some answers to some of those questions.

My surgery is set up for October 18th. Family and friends have rallied to help out. It turns out things are not going to be as difficult as I thought at first. Where I thought twin mastectomies were called for, it turns out that lumpectomies will do just as well, and maybe better.   I have leaned that for many women Radiation is not the problem for every woman it can be for some (I heard a bad story).  It is possible that I may not need chemo. The best news of all is my own realization that I will come out of this cranky, stiff, and sore true, but still feeling like me. And since mostly I like my me this is a relief. After a September of digesting, on to an October of adaptation.

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Our black caps – fruit from prickles

 

 

 

 

 

 

 

 

Gut Feeling

 

0905171530a~3What does Owen know? How can I possibly know guess? If I ask him he just turns away. Or smiles.

Last week, in the first days after I learned that I am going to be fighting breast cancer this fall, Owen began to Crank It Up.  He dumped and chopped bottles of laundry detergent and fabric softener.  He gathered all the bedroom and bathroom linens into a mountain in the laundry room, and then he did it again the bathroom. I kind of wondered, standing and feeling dwarfed by the piles of mess, what he knew. He knew something. He could tell that something was different. Maybe he could feel it. His Spidey senses were tingling? Whatever it was,  he didnt like it.

Anyway after about five days of mad chopping, dumping and peeing, at bedtime one evening Edward said, “Owen. Mom is going to be okay. She is going to go to the hospital, and then she going to come home again.”

Edward told me that Owen became very still after this. And then he looked right into his dad’s eyes. The words seemed to mean something to him.

When we went away for Labor Day weekend a few days later, to stay with family and friends in a set of rustic cabins beloved to Edward since his boyhood, in the cold, rainy woods of the Poconos without laundry, I wasn’t exactly sure this was a great idea for a way  to de-stress.  But it turned out that Edward knew by some kind of instinct. He was right. All three of us needed just stop thinking about what might be coming next.

And since none of we humans can really know what’s coming next, at any time, that’s a pretty good idea.

 

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Birthday Hello

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Here comes the birthday blueberry crisp!

Today is Owen’s birthday. Most of our kids came home last weekend to celebrate August birthdays. That would be Owen and me, both Leos. We celebrated a little early this year. Twenty four years ago, on August 17th, Owen was my best present for my 30th birthday. So on Saturday Bronwyn and Oskar put up balloons and streamers, and Freya and her boyfriend Keir made blueberry crisp. Edward grilled lamb, and Daric brought some gorgeous gerbera daisies and also a very nice bottle of rye whiskey from his wife Jamie. The meal was the perfect birthday present for me: dinner table conversation is my favorite form of social life, and listening to the Simons children tell their stories, banter, tease, and support each other warms my heart. I can’t tell, but I think Owen may feel the same.

It’s my new custom is to decorate the fridge with photos in honor of the family birthday person. During the week before, I had dredged up sweet and funny photos of Owen from babyhood to now.  Coming into contact with his childhood innocence was powerful – and a big help I found as I tried to keep patience during some of our not-walks last week. But looking at old photos of my kids has its drawbacks. As delightful as it is to remember the childhood beings you may have forgotten, seeing them again captured in ink or pixels brings a sharp awareness of things lost. You will never go back, to those little people, and although you may look and remember, you will never know them (hear them, squeeze them, smell them) again.

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I find the subtext of any event in August these days is wistfulness for the end of holidays, and for coming farewells. I used to look forward to the start of school, buying supplies with the kids, sharing their excitement at new classes, and anticipating more peaceful moments for myself. And before that, September meant new beginnings for myself, the discovery  of new worlds that my new classes meant.  Now it means deep breathing. Practicing not being clingy, learning the careless smile when tears threaten. Saying goodbye gracefully as the kids move farther and farther afield. Emotional honesty is not a boon in every arena, Wystan dear.

Learning to say goodbye is a critically important skill that begins with babies and peek-a-boo.  I have had a lot of opportunity to practice it, from the time that my family moved away from Chicago and a huge extended family to a little college town in Pennsylvania. I still remember sitting on my Grandma Mary’s lap a last time before we left, her arms around me in the moonlight out in the garden (for some reason my folks thought it would be easier to drive through the night, something they never repeated). I wondered to my grandma why her eyes were so wet behind her glasses. I can’t remember what she told her seven year old grand-daughter, who was only excited about the adventure ahead.

Frequent practice does not seem to have improved my aptitude. Somehow I don’t think that’s how it works. As I prepared to bid farewell to my girls on Sunday, I thought of my Grandma Lucy and how she greeted us every time we returned to her home with “Rabbit’s friends and relations!” (Grandma Lucy was a fan of Milne’s Winnie the Pooh), and how at every parting she cried. We made that journey, with joy and tears, to and from Chicago many, many times. Owen didn’t get to meet Grandma Lucy. But he did make the acquaintance of his great-Grandma Mary, who was pretty sprightly most of the way to 97. How many hellos and goodbyes, in that near century of hers.

This weekend Oskar ,our youngest, heads off to his first year of college. Then there will be three of us for dinner, but since our kids did high school boarding school away, we learned last year to manage and enjoy. I have a full and rich life of my own. It’s just the actual facing the loss, the change happening, that is so painful.

“Nostalgia is a trap!” my mother said once. And she was too right. Now is the only time that we have, that is real.  Not those old photos of chubby cheeks, or boxes of little clothes, or those sweet and funny sayings lisped and scrawled down and pinned to the refrigerator. This moment, today, and what you decide to do with it, is alive.  And in truth I wouldn’t change out any of my kids’ future growth for a return to childhood sweetness — not even with Owen. It is too important to see where they are going, and how truly human they can become. Human beings are born to mothers every day, but truly human beings emerge only through the fires and floods of experience, and by learning to love something greater than oneself and one’s own agenda. Owen may be on his own special trajectory, but he too can learn, if ever so slowly.

This August however a new chapter unfolds for Edward and myself, that may change once again the way I feel about August.  Call it the natural reward for raising and releasing children, not to mention trying to become more truly human myself.  Or the best of birthday presents. If all goes well, and my Owen sitter works out, I will have the privilege of holding a grand-daughter out in Denver, in this our shared birthday month. I will snuggle her, and try to get acquainted, and sing to her my hopes for her future, before we say goodbye. I will probably cry, as my grandmothers did.  Joy, loss, growth, joy. Time never stands still.

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Vacations End

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I am sipping a locally made blueberry kombucha in the Cocoon, Hawley PA,  and digesting a wonderful vacation. Owen has been at his Camp Loyaltown in the Catskills for ten days. I needed a vacation from him, and he may have needed one from me, by the end of June. I drove off into West Virgina to go camping with our youngest son Oskar, and left Edward to get Owen to his New York camp and join us later. (Edward was not sad to miss a camping outing.)

But what does my need of a vacation far from my special needs boy communicate to you, my dear readers? What is your take away?

I am digesting something at the end of this vacation – something involving the tension between privacy and inclusion. It is somehow connected to anger, but also to fear. It also has something to do with body fluids.

It’s complicated.

“Say something, I’m giving up on you…” plays over the coffee shop sound system as I reflect.  I felt like I was giving up on Owen, a couple of times those last June weeks. It had been a rough month or so. Whether babies or elders or those whose bodies or minds function a-typically, care of specially needy people is exhausting. Messy.

But — what to do about that mess? Does my need to get away suggest to you dear reader that Owen is an undesirable experience, an unlovable entity, someone I wish I didnt know? A person whose mess should be kept out of the stream of normal life? Should he be permitted to bother folks, to invade their space with his behaviors?

In the week before vacation, I found myself sitting outside the glamorous camping store REI in DC. Owen had disgraced himself in (on) the camping display.  We ran to the toilet, and took care of everything, except for the wet spot on the super duper camping mattress that he sat down on as he realized the flood was coming and he didn’t know how to tell me. I turned to find him looking surprised, gripping himself, pee pooling, and both of us helpless to anything to stop it. It’s embarrassing. It’s aggravating. I have no idea how it is for Owen. I do not handle these things well every time – I fuss. We had just been to the toilet before this. But some days are just like that for Owen.

What struck me was a disconnect between the colorful painted diagram on the ladies bathroom wall about pooping in the woods, and the manner of the shoppers and salespeople that day at REI. With the exception of one couple and their baby, people we met that day seemed uncomfortable with Owen, with his flapping plastic, and then his inappropriate urine. When I told the sales woman about our accident (I am unremediably honest) she seemed polite but rigid, nervous. The white around her irises kind of stood out. She was not exactly down with it, man.

Sitting safely outside at the metal tables and chairs, waiting for son Oskar to finish his purchases, I watched a lady with a dog on a leash enter the store, and felt bitter. To be fair, that dog probably has better bladder control than my son. And maybe it wasn’t as weird as it felt to me, in that moment. Doggy poop we can understand. But human beings that can’t control their the functions are frightening. We want an environment that we can keep perfect and beautiful and pure. Pure nature, uncontaminated by people who dont fit in.

Well, frankly, who wouldnt want all bladders and bowels controlled? I would bet a hundred dollars Owen would love to be able to control his. He tries to. The various mechanisms nervous system and muscular just dont always function right. And in spite of everything that he doesnt understand, he is highly aware of the humor in most crisis situation.

But what’s your take away, reader? What about the impact of those who do not conform on others? REI has its profit margin to consider and protect. I support profit margins, which allow businesses to exist at all, and employ people, and provide goods and services. I also believe in private property, even though I am in the care of someone who does not understand that concept.

As I watched the multi-colored mist rise above Niagara’s Horse Shoe Falls two nights ago, I reflected how to write about this, and found another thread to the story when I remembered my friend Sherry.

Sherry is the very put together and organized mother of Katie, a young lady with Rett Syndrome. Looking at Sherry, as I often do over Thursday Coffee, is an enjoyable experience. She matches. Her hair is beautifully cut, her colors and jewelry harmonize. She is generally an inspiration.

However, looking at Sherry you would probably never guess the steel she is made of. Sherry is totally calm in the face of poop. Life with Katie has given Sherry some difficult and hilarious poop stories, which she tells with just the right amount of humor and brevity. She knows, or perhaps Katie has taught her, the value of both beauty/ artifice, and of human-ness, in its beautiful and unbeautiful moments. She is a tenacious fighter for inclusion for her daughter, in schools, and in life. Regardless of what it takes, she has no intention of allowing her daughter to drift aside, isolated, out of the active stream of life. Sherry also knows when to take a break and go shopping.

“Every job has its bitch, Wys,” my high school friend Paige advised me years ago, explaining how she could work as a nurses’ assistant in elder care, emptying bed pans. “You just have to pick the bitch you can live with.” What about when the bitch picks you?  “Every job has its Bliss, if you can find it,” my homeopathic doctor advised me gently, as he helped me crest waves of frustration and rage during early years caring for and trying to understand Owen.

Hmm….Bliss. Owen.

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Water pounding on rock at Niagra Falls

Once when Owen was a drooly fellow with a constantly damp shirt front, we spent a Thanksgiving holiday with my sisters family. One of their friends arrived for a visit, and he kneeled on the rug telling us about the frustrating holiday morning he had had. Owen wandered downstairs, entered the room and before I could stop him, he bent over this vexed and kneeling stranger, and gave him a slobbery kiss on the temple.

I didnt know what to think. I grabbed Owen away, at least partly horrified. I apologized. I expected him to be tolerant but grossed out. The young father and husband ignored my embarrassment. He touched the wet spot on his forehead with awe. “I feel like I’ve been blessed,” he said.

What if every time a person like Owen interrupted my life or yours, we both saw this as a blessing? Can we imagine a messy, irritating, and inconvenient blessing? A message perhaps from a larger Energy Source, that permits us experiences from which we can grow? Or, if you prefer, what if everyone looked at each being (human, animal) they interacted with as someone by whom they may be blessed, if they were open to it. Where is the bliss in dealing with that cranky receptionist, the smelly old man ahead in line at CVS?  If your life or your home had been blessed by one of these individuals rearranging its contents — what is there to take from that?

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Lake Kaubashine, WI. Photo by Ann Buss

I am learning not to get in Owen’s way. I believe he has work to do, that has little or nothing to do with me and my embarrassment.

The centerpiece of this roadtrip vacation took Edward, Oskar, and me to northern Wisconsin for a clan reunion. During the week we sprinkled my Aunt Rachelle’s ashes on the hillside with ferns, birch, and pine. As we stood there I remembered my aunt telling the story of the autistic young man vacationing with his family next door who wandered over, fiddled with and disabled her elevator so that on arriving at the lake she could not get upstairs to go to bed. She spent the night in her wheelchair in the garage. No doubt this event brought up both anger and embarrassment at the time — depending which camp you were in — but I heard the digested version, which was full of humor. Owen shares his Great-Aunt Rachelle’s sense of the humor connected with crisis and upheaval. Maybe being wheelchair-bound herself gave my aunt (and uncle) perspective on the issue, who knows. But I so appreciated her laughter. Although phrased as a cautionary tale to me, mother of another such trouble maker, the subtext felt like “Oh well. It is upsetting. But crazy upsetting things happen.”  Warm salve for psychic wounds.

Like my son, my aunt was a complex person, a challenge to those who loved her, a colorful, multilayered personality. I will always be grateful for her telling of story of the boy who broke her elevator, for her laughter.

So, what is my take away as I get ready to reclaim my son from his camp, and take up my life as his care-taker, acknowledging both the bitch and the bliss of it?  Every experience has its bliss, if you can find it, and unlock it. And should some unasked-for force open your door and traipse in, rearranging your furniture, maybe you too are being blessed — in some slobbery, messy, complicated and inexplicable way?

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Photo by Natalie Striecher