Owen traveled to COLORADO by plane, and stayed just down the street from his brother Scott, sister in law Meg and baby niece Marlee. I was anxious about how disruptive the trip could be on Owen and Owen on the trip, but unlike the last time Owen went to Colorado, this time no police were called in to locate him.. He did not go for a solo tour of the Denver neighborhood. He seemed agreeable to the whole trip.
I know he liked our outing to Red Rocks—!
(Two determined men)
It was VERY fun to climb up — and slip over (!!) — and squelch through — and descend down the Red Rocks of Colorado — all the way down to the museum and amphitheater on the other side. Whew! What a memorable adventure.
But it was pretty nice to have Oskar climb back up and over and down and get the car, to pick us up! And take us home…
Was it just a week ago that Owen walked with Kathie in the snow on a wintry Wednesday afternoon? Then we had the 70s and were out cleaning up garden beds, before the temperature dropped us down again. Today the wind howls violently, hurling patio furniture across the yard.
Lately I have been thinking about Love. The hot and cold of it. The way the warmth you feel in any given moment for someone does not have that much to do with how much you actually care about them. Like crazy weather, our emotions warm and cool, overheat, freeze, storm, or grow balmy, dependent on how much we have eaten, or slept, or what our hormones might be doing that day.
But Actual Love is something larger than the weather of our emotional landscape. I believe it’s something human beings receive, if we want to, and through long practice of bending, behaving nicer than we feel. I have seen nothing in a short 54 years to indicate that we humans know how to Love on our own. What I am describing is too pure for us to invent. We get pretty constantly distracted in self-interest, even on the way to Loving. It contaminates everything we do. At least that’s my experience, both giving and receiving. And yet we humans experience genuine, not self-interested love for someone else when we persevere caring for him or her kindly, through all the highs and lows of the emo river.
And while I am still just persevering, if I change Owen’s bed from smelly to sweet smelling sheets, or run him a warm bath to sooth his itchy skin, does he really care if I don’t actually feel super loving doing it? The doing is good. The bed and bath are still welcome.
And as I strove against rage and desire to do bodily harm in February, dealing with an unexpected Owen messes at the end of the day, the writing of these words was called into action. No – I don’t have to feel loving to be Loving. I can remonstrate, even raise my voice at my son, (though it’s doubtful how much good a raised voice does). The act of not doing him harm is LOVING him. Sometimes that is as loving as I am capable of being, in that moment. And that’s a comfort to know, when you are sitting across the table from your child for supper, to give yourself some extra space from him.
So much going on in February (even outside my churning brain) showcased the ebb and flow of human emotion, contrasted with the steadiness of Actual Love. On the world stage, the struggles and triumphs, and struggles and losses of the Olympic games. The grief, pain, loss and anger associated with the shooting deaths of high school students and teachers in Parkland, Florida — will positive things grow out of the horrible violence and subsequent anger? What does Actual Love look like here?
The February passing of an old friend and mentor of mine, Dr. Jane Williams-Hogan, deepened my reflections on this topic. Jane was a highly intellectual woman, who also seemed to have an enormous capacity to care. I attended her memorial service, at which she was remembered for her tireless work with numerous students who all benefitted from her extra support to help them grow and flourish in (and graduate from) academia. Sometimes Actual Loving must start by simply seeing people. Seeing the unique strengths latent in each one. Jane sat at a lunch party once, years ago, with aa youn Owen and me. I remember her calm manner with him. I remember that she spoke directly to him. I remember what a relief this was, how unusual it felt at that time of my life.
Maybe we would all love to manifest Professor Williams-Hogan’s warmth and patience. But it seems we show Love differently.
My father’s birthday falls after Valentines Day, and he was much in my thoughts all month. How has his life enriched, since last we knew him? My father worked with Dr. Williams-Hogan at Bryn Athyn College, but while Jane was not easily embarrassed by out-of-the-groove people, this was not my father’s strength. Maybe this was part of his generation, which associated shame with being mentally atypical, or challenged, or slow. Maybe he was affected by long-term exposure to collegiate prejudice for the intellectual. Whatever the reason, although he was a warm-hearted and very fair man, mental and physical deformities disturbed him. Despite his exposure to a mentally challenged father, and son, and grandson, my dad did not develop ease with the special needs population. He valued mental agility, wordplay, urbane discourse, and other ways of being, knowing, communicating. One of my daughters has said she feels her grandfather did not like or love Owen.
Although I know this is not true, I know what she is referencing. Dad was a liberal thinker who embraced reforms that would care for all all underprivileged – he was never rude, or unkind. Just embarrassed perhaps, maybe uncertain. I know he worried for me, having the burden of care of such a person as Owen. He never seemed able to see the flip side – the joy, the beauty, the humor, or the peace that is also part of the world of Owen. He did not (yet) have Jane’s talent for not being embarrassed by difficult people.
My sister’s family, who are avid videographers, have very amusing footage of a young Owen standing behind Grampa’s deck chair during a summer family reunion. Little Owen is massaging his grandpa’s curly hair, patting his face, and feeling his neck with moist invasive little hands. What inspired this show of interest? Grampa had been talking to Owen in his Donald Duck voice.
Now, I am not going to suggest that he looks comfortable in the video, crunched down in his deck chair, and I know the whole thing was instigated by my step-mom, trying to help Dad make a connection with his grandchildren. But this image : the uncomfortable grandpa tolerating a weird moment with his sticky, invasive little grandson, stays with me. I doubt my Dad was experiencing love in that moment. And yet, looking back upon it, that’s Love by my measure.
Fact: bitter cold can be Bracing! Energizing! but by Groundhog day it gets kinda hard to take. Hang in there everybody. Most of my energy seems to be going into the basic need categories, 1. food 2. washing 3. finding sweaters 4. watching old Downton Abbey episodes. Not so much writing. So, today I offer you a wander down memory lane. A re-post. (Here: Drained)
Attempting to prepare to write this week, I read back through the blog. It was encouraging, which is far better than the alternative! Have you ever done that? Looked through old journals or letters, and been surprised to see growth in yourself? When I discovered a post from August 2015, I was amazed at how much my attitude and life have changed from that soggy moment. What I wrote there still has the zing of truth for me, but I could not have imagined in August 2015 how happy and content I would be in my life as it is now in 2018 — with all our other kids moved out leaving Edward, Owen, and me to make a go of it. I couldn’t see . I could not have known. Frankly, I love being reminded how little I know. This limitation is a huge relief. Wow, I am not In Charge of All Things? I love being smacked gently on the head with remembrance that people have ideas, situations arise, and things happen that I could not have dreamed up. It isn’t my responsibility to run your life! (Aren’t you glad I remembered?)
Every year I seem to learn greater appreciation of life with an Owen to care for in it.
I don’t want to sugarcoat this. Regular readers have seen enough of our adventures-with-Owen to know how hot and gritty things can be around here. I simply could not be Owen’s caregiver without the support that we get, without regular breaks, without respite for each of us apart, and together. We are grateful for every bit of it. Human beings are meant to grow up, and when they do not, extra supports are required for caregivers to maintain that kind of high intensity care. I am acutely aware that many who need it do not get it.
Owen is enriched by breaks from us too, I think. The outings with his wonderful sitter Kathie — the wanderings, the parks, the please-touch display at the Patuxent Wildlife Refuge, the turtle at the Nature Center — are stimulating to his brain and hisimagination. He is still growing and evolving. His parents are still growing and evolving.
I take comfort in not knowing, but the well-known cycles are comforting, too. Winter can be bitter, but underground roots are growing slowly in winter, too. Time moves forward, never back. And spring is always coming.
I hope you enjoy a peek back into 2015, when I was feelingDrained…
If you caught my last posting for Suburban Growing, you know that plastic has been much on my mind. How could it be otherwise, you might ask, when you live with a guy who is a plastic connoisseur? A guy who chops up plastic for an occupation – a mission – a passion? Too true, Owen and I are both passionate about plastic.
Ok, ask the next obvious question: how on earth have you, a plastic hater, allowed so much plastic into your son’s life anyway? Until the floor of your house is gritty and lumpy with chopped up bottles and dismembered toys, and dissected plastic bags swirl by a the ankles (hey, only on a bad day) as you pass through the room? Ah well, that is a very different kind of question, and the answer has something to do with fatigue and giving up in the face of the storm. Something any mom or dad gets.
Heck, until recently Owen’s morning bathtub could be swimming in plastic – multi-colored hard plastic shards, or shimmering plastic bag ribbons and banners. Sometimes there was hardly room for him in there, if the baskets went in too. Owen enjoys taking things to extremes. I had to pick plastic out of the drain regularly to keep the water moving.
But no more. After I listened to that pivotal NPR program about pervasive micro plastic pollution last November, I gathered steam to put my foot down. In a very nice way (of course!). It is one thing to allow a person to make a mess, but it’s another to hurt the environment and poison his body thereby. I may be a hippy, but I have limits.
I told Owen, “Plastic is great for cutting, but not for baths. Plastic in your bath will make you sick. Wooden things can go into the bath.” Owen was naturally not all in with this new regimen. Yet I have been amazed at how much he has accepted the new rule for plastics. He didn’t get mad. He didn’t stamp his feet. I was prepared for those things. Maybe designated chopping times and locations makes his life a little more interesting. I know that his life is boring to him, an issue of much greater concern. The other explanation is that Owen understands when I say “This will hurt you.” That would be wonderful.
Every morning he brings his plastic basketful of plastic into the bathroom, and every morning I say cheerfully (of course!) “Oh plastics are great for cutting, but they don’t go in the bath.” It is easy to be cheerful when Owen is co-operating with me, when I getting things my way. It is a great relief to get those piles of plastic out of the one most sensitive areas of Owen’s life. If only there were a way to get it out of our lives all together! Don’t worry buddy, no chance of that any time soon.
After putting my foot down, Owen and I took a trip to the local Goodwill, and perused the shelves for wooden objects. We had a good time. Owen loves wandering the Goodwill. Besides a wooden rolling pin, and a weird wooden and metal agility toy, I found a whole set of wooden alphabet blocks. Apart from being non-toxic to Owen and the waterways, the switch to wooden bath objects has yielded an unexpected benefit. Using some giant wooden letters I found at Target and the secondhand alphabet blocks I am taking a few minutes each day to talk to Owen about letters and their sounds while he is in his tub. Keeping it fun. Am I imagining it or does he seem to be listening?
You can’t do much to manipulate wooden alphabet blocks though, and manipulation is exactly what Owen loves about plastics (and aluminum cans too, if he can get one) To be able to act your will on something and alter it – the whole broken down to bits, ripped, chopped. Those large and brand new letters from Target are (were) more intriguing since they can be broken up. Now our E is an F, and the S has been deconstructed into two lower case “u”s. But I am not giving up – I sense cognitive receptivity in Owen that I do not remember sensing before. Maybe his brain is maturing, on its own maverick arc? Maybe if you are bored enough with your life when opportunity presents itself you respond? Could it be that standing up against plastics is the spark for an entirely new journey for me and Owen?
Or is it possible that by fixating on plastics so obsessively, Owen has been making that point all along? Look at this horrible stuff that I am dragging into the house, and piling in the corners, and finding in the fields and in the woods, and the parking lots! LOOK MOM! LOOK!! Isn’t this GROSS!?!
Owen’s family had a really nice Christmas, with some cranky moments. For instance the time Freya and Owen had to crank out the cranberry relish, and neither of them wanted to.
Sometimes you just have to take life cranberry by cranberry, until you get to the part you relish —
Owen likes cranberry orange relish. But if I had to take a guess, the single thing he relished most this holiday was chocolate. Readers will want to know that Owen did not get into the Christmas stockings this year, (thanks to the baby gate his siblings installed Christmas eve). But he did manage to steal and consume between 5 and 8 bars of chocolate by the time the holiday was finished. And for a person who doesn’t eat and shouldn’t eat chocolate, that’s a LOT. Luckily, mom kept buying more. A very satisfying Christmas. For all.
Now as we head into the icy blast of 2018, Mom is crankin’ through the second half of her radiation treatments. One day Owen came to help.
It’s a good place. Warm, friendly, well-lit. You can really see what you’re cutting.
The volunteer greeter left her desk (thanks Sally!) to sit with Owen, while his mom went to get her treatment.
It’s a good place.
But even better is to get in the cozy car, and drive home. One more done. Cranberry by cranberry, we’re getting there.
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.
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.
Above my studio deskis 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.
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.
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.
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.