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Mr. Bunny is going to be disappointed… or more likely, my kids are going to be sad not to see Mr. Bunny hopping around our backyard jungle. Why?

The jungle is gone. Anticipating today’s heat wave and the mosquitoes that normally come with it, I woke up early to pull the lawn mower out of the garage for the first time this year.

I realize it’s a little late, but if you saw my yard, you would understand how I have gotten away with not cutting the grass all spring. There is practically no grass. The yard itself is small, but not tiny, and it should have grass. Instead, it is a mixture of sand, rocks, mulched leaves, pine needles, and weeds. Oh…. and legos. Lately, though, the weeds have gotten a little high, providing nourishment for the rabbits, but a big, buggy mess for me. The time to cut had come.

Over the past several years, I have developed a thing for power tools. They come in handy for projects, and there is something almost cathartic about cutting things down, or blowing them away, making holes in them, sanding them smooth. I am a year older and wiser now, and I have started buying my own peonies again, and have more or less given up on the idea of finding true love. So, in the spirit of do-it-yourselfness, I find myself enjoying these little moments of accomplishment more than I resent them, much to the disbelief of my mom and brother. It is true that they were the ones watching This Old House while I headed out the door on whatever night that show was on, but I did absorb a few things. Or at least, I have Google.

I didn’t need Google or This Old House just to mow the lawn. For one thing, I never recall a discussion of lawn mowing, or the importance of removing legos from the yard before mowing. Amazing how big a bruise those little plastic bricks can make! I finished, and swept up (could not justify getting out the leaf blower). I scraped more paint off the front porch (which is almost ready for the new coat). A shovel (or the leaf blower) may have been a more appropriate tool than a broom in my daughters’ room. Nonetheless, the past-due book (Roald Dahl’s The Twits, if you are curious) has been recovered, and no one will be hiding in the school bathroom during library this week.

It is after 10:00 on a warm Saturday night, and I find myself self-sufficient, happy to have a fresh-cut yard, a few loads of laundry folded, a shoveled-out room, groceries in the kitchen. I am happy, but also a little… Well, words escape me. I love my house, love my kids, love life.

But really, is this all there is? I do cherish the bunnies that hop into my yard, the delicious feeling of heat that overwhelms me, makes me feel lazy, and then invigorated when the cool shower water hits my face. I love the haze after rain lets loose unexpectedly, and the evening that becomes balmy.

Yes, I do love all these things, but somehow today I find myself noticing the absence of a smile returned, or a gesture offered. I miss kisses, words, laughter. I miss breaths, heartbeats, steps. I miss things I have never had, and maybe I miss things that do not exist. In all the busy days that run together with no time left for anything at all outside of the bare necessities of life, I find it hard to stop—there is always more to do—and I wonder again, is this really all there is?

I love this life, this beautiful, imperfect life.. if only to know it, to wallow in it… but yes, I need more than power tools and a never-ending list of things to do. Passion, trust, fun… I want these things, too. I need them. And resignation never got me more than … resigned. Well, I am not quite ready to give in to cynicism.

Tomorrow is a new week.

The wind in Wyoming is of a fearsome sort. Even fifty miles south, in a calmer Colorado, I recall being blown on my bicycle like Miss Gulch peddling furiously in vain through the tornado. Bewitching wind. One day, one of my students arrived for tutoring extraordinarily late, his hair standing up nearly straight, skin pale, his forehead marked by a few new scratches and bruises. He had been blown over his handlebars in a gust. Bully wind.

I have to admit to a certain witchiness in response to winds, as well. I can never feel quite comfortable in the gusts, constantly turning to shade my eyes from the street sand blowing around. Driving across the high plains, it took me months before I gave up my habit of pulling over to verify the danger: a flat tire, or an awful and expensive engine problem. No, it was the sheer might of the wind that the 4-Runner was battling out there, nothing more. And yet, what a formidable force it was, making snow drifts more frightening than snow, blowing tumbleweeds like bowling balls down the interstate with unparalleled power. I don’t know how the antelope could stand it.

This wind must be what makes the land formations of this western state so dramatically lonely. It is likely also the reason that the state remained comparably unpopulated by the paradise seekers (including me) who flocked to meteorologically calmer areas of the west in the 1990s.

I have no idea what Wyoming is like now. A glance at a Cheyenne-related website points out attempts at tourism that I do not remember when I lived out west: large, painted cowboy boots deposited here and there (like the horses in Saratoga, New York), dramatizations of gunfights, a trolley tour. Casper seems to have grown, too. My main memory of that town is the gigantic Lou Taubert western department store, a retro-style diner, and the dollar movie theater. There was also a steakhouse a bit out of town, at the top of a hill. Before the recommended filet and baked potato arrived, they used to bring out salad and a dressing caddy with a selection of French, Italian, lo-fat Italian, blue cheese. (I can hardly imagine that it is still the same, given the present listing of a nearby Outback Steakhouse, not to mention something called “Delices de France.”) I believe the place I was remembering still put parsley on the plates. Once, the Barracuda stopped running on the way back to town from dinner there. We managed to push the car to the edge of the second hill, and then got it to start on the way back down to town, leaving it with someone to repair the next morning. It was not windy that particular evening.

But I digress.

I wonder about my general dislike for wind. I cringe, shielding myself, shuddering, going inside, finding my comfort and my comfort zone… Is it the wind itself that is so unpleasant, or what I fear may blow in with it?

In his Rhetoric, Aristotle said,

“Habits are pleasant; for as soon as a thing has become habitual, it is virtually natural; habit is a thing not unlike nature; what happens often is akin to what happens always, natural events happening always, habitual events often.”

Aristotle is long-winded, but I do like my habits, most of them: my evening bath, my morning coffee. He continues:

“Again, that is pleasant which is not forced on us; for force is unnatural, and that is why what is compulsory, painful, and it has been rightly said
‘All that is done on compulsion is bitterness unto the soul’.“

Well, true enough, there, too. This is the wind, forcing me to be cold, like it or not… like someone telling me I have no hot water or electricity when I really want my bath or coffee. But Aristotle (I said he was long-winded) goes on:

“So all acts of concentration, strong effort, and strain are necessarily painful; they all involve compulsion and force, unless we are accustomed to them, in which case it is custom that makes them pleasant.”

All those things that are at first unpleasant may become pleasant when they become habits. Things like flossing and exercise, I suppose, fit what he is talking about here, though I rather like going out on my bicycle… but not in the wind.

The only problem is that “pleasant” so often becomes dull. Apparently, this was a problem that Aristotle recognized a few paragraphs later, when he noted that

“Change in all things is sweet.”

Surprises are sweet, and we expect to delight in those. In some ways, less welcomed disruptions can end sweetly, too.

I once saw an episode of The Twilight Zone where a criminal is shot and dies. In his afterlife, the criminal meets an angel who grants him everything he wants. Life is easy. This is all great for a while, but in the end, the criminal begs the angel to send him to Hell, where he certainly was meant to go.

Too bad: the perfect world is Hell.

I find myself wanting to stretch now, wanting to change, wanting to grow. I say this with some hesitation. Do I really want to invite more chaos? There is plenty of that here, and there has been for quite some time. What is changing, though, is the way I perceive it all, the way I perceive the challenges and the changes.

I have always been a sucker for soft summer breezes. Spring is coming, and I find myself wanting to feel the sun and the softness. Ah, how those breezes beckon, but in their seductive gentility, they often wreak more havoc than the blustery ruckus that I expect to bring the unknown.

The wind may blow things off a bit; it may, in fact, clean the air… But somehow wind has not yet blown us away.

Anyone who knows me will tell you: it takes a lot to make me speechless.

No, I am not the type to take over meetings and blabber on. Still, I do enjoy my friends, and can talk for hours with them. So it is for writing. It just does not feel like a normal day to me without writing a word somewhere.

Oh… I have been writing, and talking, and thinking. In assorted Word documents cluttering my writing folder, I find tidbits left dangling, never reprinted on the electronic pages here. Conversations began, wandered. Less blocked than confounded, my words looked for meanings that did not suit them. But now, they seek again to grasp onto a moment.

Somewhere there has been the stirring of new things. They are beginning to make sense to me, and the ground beneath my feet seems at last to have stopped moving. In the next several days, I may become less abstract and say something about shifting terrain, what landscapes look like now.

If the ground has quieted, though, for the last two nights, the wind chimes near my back door have barely stopped singing. The wind blows hard, but warmer now, warmer for March, for a promised spring.

That can only be good.

Last Thursday, my hair still wet from dodging the heavy snow as I rushed—late—into the courthouse, I was stopped still in a stairwell as my lawyer whispered back to me.

“You agree to it? You can live with that!?” she grabbed my arm. She had worked in this system for so many years, knew the world of developmental disabilities, of mental health, said that she thought I was doing the right thing. I trusted her. She would have said no before I ever got there if she had thought it was a bad idea—she knew me that well. My lawyer is not one to mince words to save my feelings, but after all this time I trusted her. I knew that she had always wanted what was right. More than that, I trusted myself, and I let go.

I was still nodding, barely breathing, then pacing back and forth, looking up at the high ceilings, the light coming in the windows near the top. My lawyer walked away from me, quickly across the hall, saying “Okay.” I had just agreed to give away my rights to make medical and educational decisions for one child, to have them for another. It was going to be okay. The choice that felt like a surrender to me, felt right. It would benefit everyone else. In other words, it was the only choice I could make.

“When I let go of what I am, I become what I might be” (Lao Tzu).

Who am I?

For years, I have been the mom of my son, not of the older one, and not of my daughters, but of my son with developmental disabilities. Oh sure, I am a mom to all four of the kids. I do the typical mom things, read stories, help with homework, shuttle kids around, volunteer at the school when I can. Sometimes more. I try. I have done what I could for all of them, but nothing compared to what I invested of myself in the life and times of my ten year old. For ten years, it is his mom who I have been.

It is a laudable job. Mother of child with special needs. Advocate (not any old parent, but one who stands up for her kid against the System). I found generous people—much more generous than I had known before. I found patience. I found purpose. It is a job I never wanted, though. I was an affable, word worshiping Europhile with grand visions of saving the world in other ways, increasing global understanding through languages and literature. My visions of motherhood involved exposing the kids at a young age to tapenade while on sabbatical in Provence, hiring theater-major babysitters who taught my kids Shakespearean scenes that I would make into productions for the neighborhood.

Well, I do still speak French, and I do still tutor from time to time. My daughters do love to go out on my balcony and yell, “Romeo, Romeo, please take out the trash” (where did they get that???). But my kids’ performances tend more toward High School Musical than Hamlet, and my ten year old? Well, he always loved the “Tomorrow, and tomorrow, and tomorrow…” soliloquy from Macbeth. The popping sounds made him laugh—not really the effect they were supposed to have. But then, my ten year old never learned to talk.

I remember my suspicions when he was tiny. He was a good baby, smiled early, hardly ever cried, and he was beautiful. Not just cute, but angelic. Next to my older son, the one who tried my patience sorely (even as I tried not to laugh), the one who would later be diagnosed with bipolar disorder, he seemed a much-needed gift.

Still, something in his cry, when he did cry, broke my heart a little every time I heard it. I picked him up, feeling that he needed more of me than I had, and I had not even noticed until it was too late that he needed me at all. By the time my little boy actually called for me, it was as if he was not only fed up with waiting, but in pain. Looking back now, I think he was. I think it never occurred to him to do something to get my attention, only to cry in actual, physical pain. In the busy days with a toddler, I sometimes forgot that the baby had not asked to eat for hours. He didn’t reach for things, couldn’t pick up his head. He did not try to push up his head if I put him on his tummy—he just lay there until I saved him. At four months he still did not roll over. He was content to sit in his bouncy seat for hours, cooing at me enthusiastically when I sat beside him, but otherwise apparently happy alone. Everyone told me how lucky I was to have such an easygoing fellow, who could be passed quite easily from woman to woman at any given community function. I agreed, I was lucky, but it just didn’t feel quite right.

I have come to hate the “What to Expect…” books. They make it sound as though everything is always going to be all right, and line up lists of normal milestones that end up feeling like points of comparison, or competition. I guess there has to be some way to assuage your everyday parental anxiety, but I came to see these books as cruel reminders, flip descriptions of what everyone else’s child was doing. I came to resent my own baby books. Growing up, I had always loved to look back at what I did at certain ages, filled out meticulously by my mom. I filled out pages for my first baby, for a while, until the measures for him just didn’t seem right. I completely stopped putting the milestones next to the pictures of duckies when my second son never even met the milestones, months after they were promised to happen. Late bloomer. No, no. No! I was sure it was just a fluke. My own mom had the proof that I was toilet trained by age two. I don’t even remember when my kids were out of diapers. Well, my ten year old still is not. I know, I should know these details. I did keep track of so many things, know some key facts about my children’s development.

Here are a few.

For my older son: Put keys in car ignition properly – age 18 months (after retrieving my missing keys—from his toy tractor)… I would never believe it if I hadn’t been there.

For my younger son: Walked – age 4½ years (after first time riding a horse)

For my older daughter: Crossed the street by herself – age 3 (to visit the dairy cows and pick blackberries)… chased, by me

For my younger daughter: Said first sentence, “I’m the baby.” – age 18 months (and got passed around to every kindergarten mother because she was so cute).

I can also tell you the dates of a few key events for my ten year old. The first EEG, EKG, EMG, the first CAT scan, MRI. Expensive equipment. Mostly nice doctors. But first came the crushing blow. It was on my mom’s birthday. I got home late in the Vermont snow, a lump still in my throat. My son was ten months old, and I had asked the question at six months (“No, he’s healthy—just a late bloomer”), then at nine months (“Maybe you should come back in a month.”). It was a month later. My son had still never rolled over on his own.

“Nothing has changed. He’ll still be able to live at home,” the pediatrician told me before he walked out of the room.

It was only years later that I realized that these were hardly sensitive words. I wanted to know the future, and it was not in the “what to expect” category. He said that nothing had changed. Everything had changed. He said my son could still live at home. I was nowhere near the point of thinking that any of my children would live away from me before they grew up, and this doctor had the nerve to put that thought in my head. How could he give me news like that to share with my mom on her birthday? Saying it to her only made it seem real, and I didn’t even know what he meant by “delayed.” Wasn’t that the same thing he said before? Late bloomer? The next day, I hit the toy stores in search of developmental toys, mirrors. I made the appointments, neurologist, geneticist, had the blood drawn. I discovered the internet. I changed.

It was another year and a half before someone said the word “autism.” I’m still not sure how it fits, but it certainly got everyone’s attention better than “developmental delay.” I signed up for a year of classes–the University of Vermont’s Rural Autism Project probably saved my life. I drove to Montpelier every Wednesday night through every sort of weather, winding through the dark roads late at night, looking for answers, finding myself in the process. I was his mom. I dragged the kids–first just the boys, then another girl, then another–to Burlington every Friday for several years to see the “right” occupational therapist before I found a great one near us. I made friends, connections, went to conferences, read, looked for the cure. “Let Me Hear Your Voice” convinced me that the behavioral program the doctor had recommended in the beginning was the only thing that would save him. With it, he would talk. I wrote letters to important people. I complained. And a year later, when we still did not have those behavioral services, I called a more important meeting, wrote to more important people. My son got his program, and he even said a few words, for a while. Everyone knew my son. He was my cause.

Things continued like this for years, so many things, so many efforts, and still they do. But one day, near the end of a year in a fellowship program that was nearly all inspired by this one child, I realized that I could no longer lift him. I found this out because I could not walk after I tried to do it too many times. Apparently, a lot of other people realized that they could not lift him, either, because it was getting harder and harder to find people to help me. The ones who thought they could were getting hurt, pulled muscles, bite marks, scratches, enough. I missed the people who helped me, helped us. If I think of the amazing people I met, and the experiences I never would have had, I realize how lucky I was… also how selfish. I found my voice in giving it to a boy who does not have one, and now I find myself wondering what to say.

I let my son go physically several months ago–he now lives with his dad–a tough choice in itself (as I wrote here)–though I know his dad loves him. I didn’t want to separate the kids, but what more could I do? It should lead to a better life for him, a better life for his brother, who also needs me to fight for him, a better life for his sisters, who just need me period. A better life for me.

…I think. But what is that life now? I wonder, as I realized the day after that court date, at my son’s annual school review, that I would not be the one signing the individual educational plan. Oh, yes, what I gained in the exchange is precious, necessary perhaps. It lessens the struggle. There really was no choice. But giving up on one son to save another? Oh, yes. My older son needs this now. My older son has bipolar disorder, and walks a perilous labyrinth filled with the dead ends of denial and the land mines of stigma. He can learn to walk that path safely, though–with some help. But now I know I cannot walk it for him. His sisters need me. I need me. But this all sounds so righteous. Really, the best I can hope is that it is right. I make choices for some, for many things, but I have no control over how things turn out. I never did. And really, what did I have then? What do I have now?

“When I let go of what I have, I receive what I need” (Lao Tzu).

The Japanese maple in my backyard sometimes tells me all I need to know. It is not a delicate tree, as many of its variety seem to be, but an old, strong one, immensely climbable, and a fine reporter of weather conditions. Right now it is frosted with snow—quite elegantly, I might add. In fact, this tree is always a beauty with its nevergreen leaves, covered with children, or with no leaves at all. And then, there is autumn. It is my favorite time of year, anyway, so perhaps I am biased, but I doubt anyone would fail to find pure magic as the low light of fall shines through the crimson leaves floating slowly to the ground.

It was at this time this year that I found myself gazing with regret from my kitchen window to that tree in its splendor. Its mere magnificence made a palpable space in my heart from the way I wished things were and what had really happened.

The silence was everywhere, as my older son, the one who perhaps loves that tree more than all of us, was not raking up the leaf piles so that he could climb the tree and jump into them. I thought I could see him there, and then, I realized that it was not possible. No. In fact, even days earlier, he himself was not jumping in leaves, or even leaving his room. When he went to counseling and said that he could no longer find a good reason to live, we had to act. I thank God for that counselor

The psych ward is a strange place, somewhere between hospital and prison, with an arts and crafts room and a few floor lamps thrown in to make it seem less institutional. Despite a pretty good knowledge of what mental illness does to a person, to a family, I had not yet experienced this area of the hospital. So, even though it made sense that the staff would take extra care, I still felt a clinging sadness as they came to unlock the door that separated me from my child after he came in on the ambulance. That Friday night—no, Saturday morning at that point—the nurse searched the bag with his favorite things, removing items that may be dangerous. The drawstrings came out of sweatpants. The Bionicle with the pointed helmet? Nope. It went home with me. When I later met my son’s laughing classmate, who had slashed her wrists, I understood why aluminum cans were banned. It struck me how invisible her pain was to me, how invisible my son’s had been to so many, as well.

The next Monday, I took a picture of the tree, dusted with the first snow, ablaze with leaves that had not even completely changed colors a few days earlier. My son was astounded, and no, he hadn’t been outside. It had been three days, and it dawned on me that he didn’t even have a coat with him. He said he didn’t need one.

A few days later, the weather turned warmer. We thought he may come home, if only for a few hours. I went to the school to pick up homework, and the guidance counselor left something in my car: a turkey and all the trimmings, a pie. I didn’t have to shop! I didn’t realize until the day I opened the box that the meal had been completely prepared. I didn’t have to cook! A pleasure most times, but not this year. We had to enjoy the meal without him, thankful that he was in good enough spirits to kick a ball around with his sisters in the courtyard before we came home. Thankful, too, for the generosity and compassion of so many.

The tree lost most of its leaves in the wind of the next days, days that blurred in rain and fog, wind, sunshine. I remember nothing but the drive down 135, driving there, not home, wondering how he would be, and then returning to meet his sisters, finding a way to make things all right for them. We painted our nails. We drew. We accepted unexpected kindnesses, and tried to be understanding through our disappointment in those who had not known what to say. We raked, falling, laughing with tears streaming down our faces, into huge piles of the delicate leaves under the tree, awaiting his return.

I turned the page on the calendar, and the hospital said he was ready to leave. He came home just after school ended, went upstairs to his room, like any other day. He smiled. It was a gift.

I cannot say that things have been smooth, that life has gone on as normal, or that I even can tell you what normal is. In fact, things have been hard, disagreements bitter, illness still lurking, letdowns remaining, snow falling. But this is life, sometimes so easy to give into the difficulty of the whole affair, to fill it with noisy things and superficial importance, or to abandon the mess altogether. And yet, I look at my window, and the tree is still there, still strong, still beautiful, simply there. There, also, is gentle kindness, words forgotten and words not yet spoken, There is joy.

Hello. It is evening, dark already by 8:00. School started today, the official end of summer as we know it.

Fall is by far my favorite season.

I was browsing through pieces from the past, and came upon this one, from last year. I remember the day, and it was indeed glorious. It makes me anticipate all the more the season we approach in September…

_____________
In some unknown corner along rows of apartment buildings, I found the banks of the Charles River, coated in sunlight, dappled by the shadows of trees blowing in the wind. It was no longer the soft breeze of summer, but a crisper wind of cinnamon and crimson, of school days and football games, of sweaters and hot, milky coffee. Canoes lay overturned throughout the woody marshes, like the toys of distracted children. It was there that I sat, watching the walkers and wanderers, I myself meditating on the wonder of autumn and that symbolic repetition of the seasons. Now we were in the time of year when things begin to fade and die, and for years I had always rejoiced in that. Something in the leaves, the smell of it, the busy, musty beauty of it, always seduced my senses like nothing else, like a fire, like hands beneath my sweater, touching my skin and making me shiver, both from the cold and from the excitement of feeling bare skin so deliberately against mine. Summer revealed too much; spring was too new. But the maturity of fall, covered, but gloriously so, always felt right to me.

So I felt a sense, too, of remembering and renewal before winter’s cold settled in. As the trees turned to red and gold, I threw bread into the river—not a tradition I grew up with, but one that friends share. It seems to fit so well. There I thought about the last year’s amazing changes, the regrets and hardships that gave me so much wonder and mystery. It is from there that I look for new beginnings.
_____________
Song of the day: “Sand River,” Beth Gibbons with Rustin Man

Today, on this beautiful summer day, I am on day two of my time without children. It is time to paint. No, not artwork right now. I really don’t know exactly what I am doing, I admit. This is my first attempt at exterior house painting, and I am reluctant to get too high on the ladder. Still, the chipping paint has been irking me for some time, and I can do something about it right now, before winter comes to battle the woodwork again. Yesterday’s downpour was a bit unfortunate, but I have time and desire to make something better.

At some point in my life—actually, one night in Vermont, when I was sick of peeling wallpaper—I decided to do some simple home repairs. The wallpaper was easy enough to fix: I found the pieces that had been left on the floor, and glued them back. Voila. It dawned on me at the time that the house could be much nicer without that wallpaper, historic though it may have been, but we were about to move, and I let things be. It was in the next house that I made my changes.

The next house was nice, but not my dream, a dark house whose front did not face the street, but a path along the side of the house. No one came to the front door. It hardly mattered, though, because the house was set back from the street a long way—I could not see the street from my driveway without walking about halfway down. I realize that for some people this is a dream, but not for me. We were in a suburban neighborhood, but so secluded that we barely saw it. For someone who enjoys sidewalks and city bustle, it was hard. Harder still was the austere feeling of the house itself. Maybe for real estate purposes, maybe for personal preference, the previous owners had painted many walls a stark white, where the dull browns and overbearing toile wallpaper were not left up. It was a dark, sad house, which may explain why the previous owner was going through a divorce and making wine in his basement.

I did have to admit, though, there were some nice things: a sun porch with a cathedral ceiling, a wall of rhododendrons that were blooming magenta flowers when I saw the house, and the mix of seclusion and convenience that I knew would be a necessity if I really wanted to move that summer.

I had to spend a lot of time in the house. Before we moved, I had sought out the special education services my son would need. The town had set up full-time home therapy for my son, to start the week after we moved. It was incredible, but it also meant that I had to stay home for most of the day while the services were going on. I was new to town. I couldn’t leave the house to seek out the other kids in the neighborhood, and my own were too young to go wandering alone. So I decided to make things better. The first thing I did was to start working out. The other was to change the house.

I moved furniture around, but the house was still dark. On one of my first weekends that my then-husband was away, I realized that paint could make things better. I loaded up the kids, and headed to the hardware store with a plan. It was Friday night. By Sunday morning, the bathroom was jalapeno green and beautiful, if I do say so myself. To this day, my older son asks me if I will paint the bathroom here the same color.

I did not stop there, continuing over the North Carolina motorcycle week to paint the kitchen sunshine yellow and an orange whose name escapes me. There were bricks exposed in most of the kitchen, and I painted yellow above them. In the part without bricks, the orange went below the chair railing. I had a sunny kitchen. I hung a painting. I found a print in Montreal—a fairly common one, with a clown inside an orange peel, selling Campari. Color. It made all the difference to me. I patted myself on the back when several months later I saw a similar color combination in Architectural Digest. Trendsetter, I was… (well, actually probably not, because those articles must be shot long before the magazine comes out). But I loved it.

Many came and went from the house with their own opinions, but it was clear that the house was becoming mine. I ripped down the impractical shelves in the laundry area and put up ones I liked better. That was the next home improvement. Nothing was stopping me anymore. I repaired a stair. I patched a crack in the concrete. I stained a deck. I learned how to take the hinges off the door from the garage to break into my old house. I mended the drywall that my son kept destroying in his room. I repainted. I put up padding on his walls. I installed a light. Fall came, and my son started going to a half day of school.

In the midst of all of this, something strange was happening to me. I was playing my music a little louder, and started helping with an ESL group in the school. I started to meet people, learn my way around. It was so different from Vermont. There were other parents to talk to about our kids with autism. I could run to the grocery store for rice milk after dark, and I had figured out the short way to get there.

Other things seemed so much clearer, too. I realized that some things, things I had always taken as my burden, were in fact simply problems that needed to be addressed. My younger son had a good program at last. Things there were going well then. The challenges at home persisted, though. It was a long journey, looking for the right thing for my oldest, always thinking a gifted program or a sibling club for children with special needs would make all the difference for him. We met with therapists in Vermont around those issues. My older son drew a lot of pictures of his anger. Well, someone visiting our home did mention that she thought he might need more help than that. The girls were bright, but they never attacked the way their oldest brother did. He was a whiz at so many things, but so quick to anger, so insatiable when he was angry. A lot of changes came from the move. Maybe he was reacting to those. I talked to his teacher ahead of time about the fears. A fire alarm could set him off for days of tears and refusal to go to school. A dog bark could send him inside for the rest of the day. It did seem like a lot of things set him off. What was happening?

As it had for some time, a tornado raged inside my house. In the middle of one, I called a therapist who was recommended on a listserv about special needs. He was supposed to be the one to calm the storm for kids who make them. We made plans, tried to stick to them. It never seemed to be enough. The daily battles continued, then the tears, the late night talkativeness and the amazing Lego creations after midnight. He seemed an unusual child, intense. He was the challenge, the joy, the indigo child, the explosive child. There was a section in my library devoted to how to parent him, nearly as big as the one for his brother. It was hard to see, until my son with autism was receiving a visit one day from the program consultant. She pulled me aside and told me that she considered it a crisis. Wow. She was worried. She asked me if she could call the therapist. She did.

So, the next week, when my younger son was visiting our new pediatrician, we chatted. “How are the other kids?” Oh, fine, well, mostly. Actually, it was kind of scary. I said so. Daily threats. Rooms torn apart. A kid who loved to talk and take things apart, and could make detailed plans for intricate machines. Something set off bells in the fine doctor’s head. Yes, I went back to talk to him. In the weeks to come, everything inside the colorful walls began to change. I started writing again—something I had hardly done in years. As I did, it all began to make sense, and I kept writing trying to make it all right. It was. It was all right. Whatever it was, it was going to be better, and it is. It is better. Different, but better

I looked at the date today and realized that I have hardly written in the past ten days. It made me wonder. I thought I’d be full of thoughts at this time. True enough, but words just did not come out of them. Sometimes, though, it is hard to put words to things that have not yet started to make sense. My little boy left just a week ago today. All right, he is not little: he is ten years old. He is heavy. He actually is pretty big. And strong. I wrote about him before, anticipating the day. The day came, and I thought I would leave it there, move on. But it has taken a little longer.

I saw my son off last Friday evening, a strange day, but all right. I went briefly to a cookout for his camp. Friends met me later, other moms who have kids like mine, single moms. We said we should have told the waiter that we were exotic dancers on our night off. We did yoga—it’s close, right? I went home, kept busy all weekend, a bit dazed, then came home Sunday. The other kids showed up without their brother.

The quiet in the house at first was a relief. It can be all-consuming to care full-time for someone whose needs are enormous. I had taken it for granted for so long, it was a relief not to have to remember so many details, at least the first night. The next day seemed even quieter, even with the other kids. And the next two, nearly empty. I made enchiladas, one of his favorite meals, and my youngest girl just started crying. This, from the one I had deemed least likely to be upset by the change. Maybe the others were not quite ready to cry yet. Maybe I wasn’t quite ready, either.

Tonight, it feels right. He is here now, visiting for the weekend, thrilled to have risotto (of course I planned the menus thinking of him), and to take a bath. He is making the noise that fills the house, the same noise that in all truth annoyed the hell out of me sometimes, but a true indicator of his presence, sweeter now that I haven’t tried to sleep through it in a few days. Now, on some weekends, he will still come home, and his sounds will fill the house again.

I was not expecting to be hit so hard by his absence. I knew that one day, the needs would be great enough that I could not handle him on a daily basis. Already, it had become nearly impossible to find personal care attendants who were able to do the job. I attributed it at first to a general shortage of workers. There was even legislation passed to help the situation: it must be a big problem. I found thirty-two people to interview, nonetheless, and hired ten. Of those, eight quit before the first day, and I had to fire the other two. Wow. Harder than I thought. I had a great idea during last year’s program in disability policy, finding help for families who need an extra hand to keep the people we love at home. It is a problem, an enormous one, one I felt we could make better. One day, I was speaking with a man who had been involved in the independent living movement for years. Yes, people should be able to live in their community, and should have the supports they need to do so. But sometimes, he said, to my surprise, it is nearly impossible for the community to support everyone. In our case, after the last person left one day, feeling guilty enough that she never came back to say goodbye, I knew that we had reached the end of the line.

Behavioral challenges, safety concerns, limits to mobility, few self-help skills: these were the things I tried to help my son overcome. So many people tried. I miss those people. I miss the smiling young faces who came to teach, to play, to help. I miss the therapists and teachers. I counted once how many people had come into our home to work with my son. At age ten, the number reaches near 100. It may seem hard to believe, but the turnover is enormous for so many reasons. It is a job with a “Puff, the Magic Dragon” quality to it at times. Other times, budgets get cut. Sometimes, people just burn out, and sometimes it is far from pretty. Many times we had three and four people coming to the house on a daily basis. I loved so many people who came into our lives because of my son. He brought people whose capacity for love and patience was greater than I sometimes experienced. It was a thoughtful world, despite the constant fight for the help kids need. I remember each and every one of the people who visited our life—wish I had a picture of all of them. These people became so much a part of the scenery, a difficult relationship to negotiate at times. Professional helpers could not be family, were different from friends. They leave when services end, and yet, they are so much a part of our family, if an indefinable one.

So, some things change. There will still be people who help my son in his school. We will still know them. I do this with the hope that he can have the life he wants, surrounded by people who care about him. It’s nothing more or less than what any parent wants for a child.

I miss him. He is upstairs now, already in bed. It feels right with him here, even for a few days. It is a guilty relief, to know someone else has to do it every day. It will take a little while before it feels right for him to leave, too. It will take some time for this to make sense, but already, knowing that he can come home, already I know that in many ways, he never really will leave.

Life goes on.

If I cannot be Julie London, I would be happy to be Blossom Dearie. Oh hell, I do not really want to be either one of these singers, really. I just enjoy listening to them.

Blossom Dearie was introduced to me by way of a tape that arrived with my brother when he visited me in France. I was twenty-three years old (thought I was older, thinking back, but I thought wrong when I figured out the year).

I was on a junior (except it was my senior) year abroad (except I had also quit school for two years and was returning, so I was way older, I felt, than my compatriots). I had worked hard to get to France, spoke the language almost fluently when I left, and had known a good day’s work for periods of time after my dad died when I was twenty. I put myself through school, and going to France was cheaper than another year at my chosen establishment of higher learning. So, Caen it was, after six weeks in Paris. It sounded okay to me.

Despite my normal level of responsibility, I had just spent a rather reckless summer trying to earn money in various jobs, perfecting my French and Spanish with the local foreign student population, flirting, and generally getting myself into all sorts of enchanting entanglements. My main employment was temp work. For most of the summer, I took over as the secretary for a CEO of a clothing company while his regular secretary was getting married. It was more challenging than typing letters and answering phones. The people on the phone were aggressive, the expectations demanding. The CEO had a bodyguard, something new to me.

It was the summer I happened on to “La Dolce Vita” and decided to climb into a fountain with a girlfriend after coffee one night. It is the summer I accompanied an Austrian traveler, whose brand of German made no sense to me at all at that point, to a bar that I knew would have great blues. It did, and he was happy as a clam. Afterward, we ran down the hills of Forest Park, dangerous though it was reputed to be at night, watching the people leave the Muny, and sitting beside a pond kissing because we had few words that seemed to be getting across the point any better that life was fun. Another night, I went out with a friend, a doctoral student in math from Milan. His apartment was always stifling, and I remember sitting for hours making him tell me about Italy, watching the lights on the street in the apartment that seemed a little cooler when it was dark and the fans were all on. I remember the reproduction statue of David that his roommates had placed in the center of the furniture-free room. He was a nice guy, a friend. I felt free and alive and young. I met a couple of English grad students and tried to write stories collaboratively. The tales we created were awful, I think, but fun.

Later, toward August, I worked in a wine store. The friend who gave me the job had known me from my translating days. I used to go in the gourmet shop during lunch to talk and buy coffee beans, a great pleasure during that time, especially when they put a bakery in the store. The same friend introduced me to an investment banker who had a room full of jazz records, had just moved from New York, and had enough money to take me out to dinner somewhere nice. We chose a very nice place on the Hill, not the sandwich place down the street, but something very special. The fact that his life had been very different from mine became absolutely apparent the day he told me that his grandmother would have never allowed him to eat at McDonalds… and he never had. Really. It is true that I try to avoid the place, but never to have eaten there? Even as a kid? It was a foreign concept, as were the Sotheby’s auctions, the boarding school upbringing and the air-conditioned apartment in a place where the single professors at my university tended to live. I had friends who lived in less swanky quarters just across the street—well, my Italian friend, for example; it was another world.

I went out with the investor just a few times before I left for France, but I did enjoy his company. I liked his politeness, his passion for the things he loved, and his habit of making dates around Preston Sturges movies and splendid dinners he made himself. I was challenged by his intelligence and yes, his record collection. He had a fabulous turntable and receiver, and had inherited most of the LPs, as I recall, from some sort of a mentor who had needed to move from a much larger place. The records were in perfect condition for the most part, with many rare ones, he told me. I hardly had the background to know them all at that point, but I did recognize a lot, and I did appreciate it. My would-be boyfriend loved going through them, but troubled me by his seeming indifference to the pop I loved. He redeemed himself one day when I discovered on his shelves an Elvis Costello album. “My Aim Is True.” Good start. New York was his favorite place, where he heard live music, and was always on the search for a great new vocalist. It was during that time that I first heard Michele Hendricks. I saw her live years later. And then, there was Blossom Dearie. I heard her not in his apartment, but on the tape that arrived with my brother at December break.

The tape had been delivered, I learned, by the dashing young man in a topcoat, along with a jar of jelly and Christmas greetings to my mother. It came with a note, saying once again that he missed me (ah! joy!…), describing the many pleasures I should be seeking in France (I could not afford many of them), and something about the life he had been leading while I was away. A mix tape! From my sophisticated almost-was-a-boyfriend. It was a lonely existence at the time in France. I had been sick. I missed Paris. Now, I was in heaven. This was the good stuff! No one could have brought me more happiness than I found in that cold Normandy dorm room one December afternoon, when I first played Betty Carter’s “Tight.” I was transported from the world of students (all younger that I, besides) to something that I couldn’t quite have. It was great.

Blossom Dearie’s “I’m Shadowing You” was on the tape. I love Johnny Mercer’s words:

“In Venice
I’ll be a menace
In your Italian hotel
In Paris
I shall embarrass
You on La Rue de la Chappelle.”

It was a great choice. Coincidentally, my brother and I had splurged on train tickets to Venice. We arrived a few days early to a very cheap room in Paris, ready to walk and go to flea markets and museums, and then to set out on the journey from the Gare de Lyon. In Venice, we shivered our way around the frigid, foggy canals, and made the mistake of forgetting the name of our penzione. The city wound around, indecipherably, it seemed, a maze. I wished I had a warmer coat against the bone-chilling cold. We finally decided to eat. We were exhausted, perplexed, and I tried some version of Italian (more Spanish, actually) to explain our predicament. As it turned out, the wife of the owner was from Malaga. Words worked! Before we knew it, our table was covered with a map while the entire restaurant proposed possibilities for how to get us back to our cozy warm beds that night. Finally, the owner’s wife just put on her coat and said she’d help us find it. And she did. My brother hugged her. No menace in the hotel for that night, please.

So, I found the tape again, and listened, wondering if the guy would still be around when I got back. (He wasn’t, if you want to know. I sent him a birthday card shortly after I returned, and he called to say he had started dating a theater director closer to his own age). Oh well. So much for a future there. But I did think about it for a while.

“Both of us will be
So independent we
Will live on the run.
Picketing for every cause
Fighting all unjust laws
Happy we will be
Just you, the Secret Service and me.”

Social activism now? Hmm. Surprising choice for an investment banker. But maybe not for me. And a few more by Blossom Dearie in the meanwhile, the perfect songstress for the newly smitten.

This music may have made me wish for more back then, but she is refreshing to me now. I find myself unable to get “If I Were a Bell” out of my head after I hear her belt it out about as much as it can be belted out with that voice…. Somehow the innocent exuberance is so effective for that song. Wonder what she would have been like cast as Miss Sarah Brown.

The sauntering “Surrey With the Fringe On the Top” makes me relax into a slow ride in the country, when other times I may prefer the hurry. Talk about being in the here and now… Wishful thinking again, what a sweet, slowed-down version of “Tea For Two”! Yes, I can just picture it.

I have the album “Once Upon a Summertime” playing in the background as I write this. It is indeed a beautiful summer day without a trace of melancholy at the moment, and I am off now to enjoy it.

But first another great line from “We’re Together”: “Without you, life’s the flavor of flat… champagne.” Without whom?” Gee, I don’t even know. Well, maybe some regrets, some wishing. Not very zen… probably makes me unhappy. Ah… but what’s life without it? I can only keep practicing. “Doop-Doo-De-Doop…” Wow, I’m certainly familiar with pianissimo, but not “Perry Como” as a musical directive. On that note, I leave you. Have a peaceful day.

—————-
Now playing: Blossom Dearie - Doop-Doo-De-Doop (A Doodlin’ Song)
via FoxyTunes

The words on the page of the letter made the decision tangible. Yesterday, they were just words I uttered through tears over the phone. Little details, clothes packed away, toys in boxes, and memories playing over and over though my head, made the decision more real. I walked up the stairs to the attic. The boxes, ten years worth of letters and records from doctors and schools and therapists, made the decision more understandable, in my mind if not my heart. In exactly two weeks, our lives will be different. My boy is leaving.

Oh, of course we’ll see him again often enough. He’ll come home some weekends, and I’ll visit him at school. But, he will no longer live with us here in our house in Framingham.

It would not help to defend myself as a mother at this point. Either you understand the wrenching choice, or you don’t. It is not a decision I made easily, or quickly. Indeed, the proposal had been made three years ago, by a behavioral specialist who worked in our home. It has taken a few injuries for me to consider it. Strangers bitten, therapists leaving the job after hurting their backs… The days I spent unable to walk after trying to lift him were over a year ago, yet I look for some sort of way to explain how hard it has been. Sleepless nights? The scratches on my arm? His room is a wreck, drywall falling where he has banged his head, windows broken, contents of drawers and closets scattered in nighttime frolics. His frolics, not mine or anyone else’s. And the price paid by his brother and sisters? Sure, they love him, but they have given so much, learned so much so early. How about my ten-year-old son? It is for him that I know I have to do this. I can damn the world we live in, but at least for now, it feels like the only chance he has to move forward and really learn the daily living skills that will make his life better as an adult. His life could be better. That, at least, gives me some consolation.

But then there are the joys I will miss. My boy laughs from deep in his belly. When he is truly happy and seems to know I understood him, he beams, and holds me tight for a hug that feels like forever. Amidst social service budget cuts and reason for pessimism, this kid inspires generosity, patience, and tolerance. They have been lessons for all of us. The world slows down, and the essential things become clearer, the judgments less harsh, the pleasures more sublime.

I was inspired in my own work and life by my son and the people who have helped him, and by the people who have helped me. It is a world that was so foreign to me when I was younger. I was afraid of it. In working on policy around disability, I see the range of people who are perceived as limited by what their bodies let them have. And yet, what remains is the spirit. It sometimes astounds me. It all seems normal to me now, more normal, in fact, than the perfect health we hope to attain or maintain. Is this not the human condition? I think of accessibility, acceptance, and love, and I leave you tonight with this:

The Poems of Our Climate
by Wallace Stevens

I
Clear water in a brilliant bowl,
Pink and white carnations. The light
In the room more like a snowy air,
Reflecting snow. A newly-fallen snow
At the end of winter when afternoons return.
Pink and white carnations–one desires
So much more than that. The day itself
Is simplified: a bowl of white,
Cold, a cold porcelain, low and round,
With nothing more than the carnations there.

II
Say even that this complete simplicity
Stripped one of all one’s torments, concealed
The evilly compounded, vital I
And made it fresh in a world of white,
A world of clear water, brilliant-edged,
Still one would want more, one would need more,
More than a world of white and snowy scents.

III
There would still remain the never-resting mind,
So that one would want to escape, come back
To what had been so long composed.
The imperfect is our paradise.
Note that, in this bitterness, delight,
Since the imperfect is so hot in us,
Lies in flawed words and stubborn sounds.