Monthly Archive

A couple of weeks ago, I was at Trader Joe’s to replenish our supply of milk, cereal, and honey-roasted peanuts, when I saw them peeking out between the bouquets of holly and pine branches, white roses, ivy, mistletoe, and poinsettias: peonies!—pale pink, tightly closed, and remarkably out of season.

I looked at the price, nine dollars, picked out the nicest bunch, and put them in my basket. It was a little splurge, just for me, something to brighten my home, which would be quiet for several days. I looked again at the bouquet. A few of the outer leaves were already brown and curled on the edges. The leaves were pretty tired looking.

I put the flowers back, and walked across the aisle to grab a box of Joe’s Os.

The New Year is upon us, and as we are all wont to do as December ends, I am pondering my existence and what I can do to make it—me—better. Many articles are published on this subject every year about this time, right next to the lists of famous people who have died, and the countdowns of top songs.

It must also be a big time for self-help book sales. You know those books you see—especially if you are a woman—that tell you about taking care of yourself and doing nice things just for you, because you are so overwhelmed by taking care of everyone else and really deserve to have a week in a spa, a personal shopper and a nice meal cooked by someone else?… Oprah often reminds us that self-pampering is nice, and one particular bit of advice I have tried taking from her from time to time is to stop waiting for a man to send me flowers and just buy them myself.

Well, after years of buying my own flowers, I have to say that this advice is crap.

Now, that is not the only reason that I put back the peonies at Trader Joe’s. In fact, I do love peonies, and I’ve grown them when I’ve had gardens. When I’m lucky, they bloom around my birthday, and then, I do buy them for myself. The screen in my bedroom has them all over, off-white, pink, even yellow, and most beautiful, deep red ones, signs of prosperity and good luck, love, healing. Some fairly convincing fake peonies sit stylishly in a long rectangular vase on the floor in my hall. Open my front door. There, at the bottom of the stairs—those are peonies, too. Sure, I would love to have real ones, and this time of year—what a treat that would be! But not like this.

Rarity does not equal beauty. And just because the supply goes down doesn’t mean my demand goes up. It just means that I wait for the right time, unless they are something truly special. Now, it may be true that these particular flowers would have released their perfume and charm when they opened, but it just didn’t seem likely. In fact, what I saw when I looked at them just made me sad: supermarket flowers to feed the commercial interests that mark the season. Not even a Chinese empress could force these flowers to bloom in winter. Why should I?

To every thing there is a season…

And then, there is the other factor… the part about Oprah’s questionable advice.

I do believe that waiting around for someone else to make your life for you is a really bad idea. Live, live for yourself, just live! Yes, I do believe that. I do, and I fill it with the things that mean a lot to me, and I do want to be better, and do more. But buying my own peonies?

Really, all those times I went ahead and filled my vases with beautiful flowers I bought for myself, I really did wish that I had someone to thank them for, someone, someone who knew me well enough to know the thing about the peonies, someone who cared enough to waste the money on something beautiful that is already dying, something fleeting, something frivolous, something totally and utterly impractical… for absolutely no reason at all. Buying peonies for myself just makes me wish I had not been the one to buy them, and wishing that does not make me feel pampered.

So, a garden I may grow, but I will no longer buy my own flowers. That is my resolution for this year. Telling myself that the flowers themselves are all I ever wanted… that just cannot be all there is to hope for. But dreams are not so bad, and I will not stop dreaming. That is my other resolution.

Ah, it is the end of this year, the beginning of new days, new dreams, new songs. To all of you, both the dreamers and you more practical and level-headed sorts, I wish you all the beautiful gifts of the year that follows.

When I was twenty years old, I quit school. I was at a large state university, which was nice in many ways, but frustrating to me in others. Frustration won. One day, I was enraged (not an adjective that describes me often) when I flunked an accounting exam. I was hardly a whiz in the class, but had a B+ average up to that point, gained only through a lot of hard work. Somehow, finding out that my dad was going to die really took the energy out of studying. My professor refused to change the grade. I ended up with a B in the class, in spite of the lousy test score, but I swore that I would not stay in a school that only knew me by my student number.

So I went home. Misfit that I was in high school, I had had the job of compiling attendance reports after school for my junior and senior years. I could hardly complain about it: everyone was nice to me, I got to learn something about early 1980s computing, and I always had a job in summer, too, in the summer school. It was a fine job, but when the principal (the same principal that Jonathan Franzen writes about, same high school, and no, I never knew the writer; I am just name-dropping) offered me the chance to stay all year full-time, I told him thank you, but no. I was going to work in translation.

I did not actually have a translating job at that point, and about a month later, after going door to door to hand resumes to nearly every business in the St. Louis area that I could find with the word international in its name, I was beginning to question my decision to turn the principal down. One evening I came home, and there was a message for me.

It turned out that one of the translating companies I had visited (there really were only three) had just gotten a huge RUSH interpreting assignment and needed extra help editing and putting together brochures in four languages for a conference. Could I help temporarily?

Yes, of course I could.

My world was never quite the same after that. I went from my boring life in the suburbs to the cosmopolitan life I had always dreamed of, at least for that week. I know a lot of people identified with the movie Breaking Away because of the bicycle racing, but I had always found so much in common with the whole language and culture theme. My life may not have been Indiana. My dreams may not have been Italian. But I wanted a bigger life, too. I wanted to be French in high school. And now, I was working somewhere where I spoke it, better than I realized I could, on a nearly daily basis.

I also started learning some Spanish. The owner of the company was from Bolivia, and the other full-time translator was from Peru. That first day that I went in, I watched, my heart racing as freelance translators rendered texts into French, Italian, German. It was the most exciting thing I had ever seen, and there I was, in the middle of it, not in class, but the real thing.

No one in my family had ever even left the United States, but I was full of ‘satiable curtiosity, maybe from too much whimsical reading, or possibly from being that misfit. In high school, exchange students stayed to our house, for a week if not for a year, and my dad suffered nightly through three full hours of French television that I pretended to understand when cable made the world available in our living room. The exotic lives of my pen pals fascinated me, and writing to them must be how I managed to test out of most French in college.

When I started college, I never considered teaching. The thought of trying to force students like my high school classmates to have some interest in a foreign language was nearly as depressing to me as the idea that I might end up stuck in Missouri for the rest of my life. I wanted more, as in United Nations more, but honestly, anything more. Yeah, I guess I was a snob, or ambitious, depending how you look at it. I was, in fact, determined, and there I was, in a translation agency, doing what I had dreamed of doing, if only temporarily.

The conference I was hired for was a success, after hard work that I personally had never loved so much. A month later, I had a job, a real, full-time job. It was pure luck, I figured out soon after, as I went through the stacks of mail, new resumes every week. I didn’t even have a degree, but I had the job.

I learned a lot about the nature of translation, talked daily to people who were as passionate about language as I was, and found interest in topics (botany, sewing instructions, grocery store displays, camping gear, etc.), searching for the right word and the right person who knew what it was. The world grew around me in so many ways, not just in my eight hours, but after, in classes, in things I noticed, in people I met.

Yes, I loved my job. Sometimes I goofed. Once, a client was in a hurry for a sign he wanted to use for a conference in Belgium. Normally, we insisted on receiving the translation in writing, but in days before email, Roger called in the two-word translation for “Distributorships available.” Somewhere between his phone and mine, a c became an f, and I sent it to the typesetter. We received a call from Brussels. Our client was not amused when he realized why everyone was laughing. It turns out that “Confessions disponibles” has a vastly different meaning than “Concessions disponibles.” I was humbled, embarrassed; I learned a lot that day, most days, in fact. It was grand.

After a while, though, new doors opened, and I looked through them. Something in the Uruguayan poet I had met tempted me into a world I never realized I loved more: literature. I applied, was accepted, did well, ran out of money, went to France, finished school, looked for work, did not find it and went to grad school in Missouri.. I kept going back home. I taught. And there, even there in the Midwest, the world was there, and ever growing.

But unlike Dorothy, one day I let the tornado take me away, not afraid, but riding it for all it was worth, and I never returned, never tried to. The world still expands, albeit not without so much right here to do, too. Munchkins afoot, poppies distracting me from time to time… Oz, I think I am still looking.

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.