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“Is campaign a kind of alcoholic drink?”

My daughter has been fascinated by the Democratic nomination process, and now by the idea of running mates. She has one special interest: the school day should not be longer than it already is.

My twelve-year-old son laughed later when he heard what his sister had said. “No, no: you mean champagne!”

“Campaign is what is making everyone act so weird. I mean campaign!” my daughter insisted.

The party continues…

It was early enough for Target not to be too busy, I found a good parking spot (well, the handicapped placard does help), and all five of us were in a great mood. We were buying some promised new toys for the yard, charcoal, marshmallows, and a few other necessities for the first really warm weekend, the beginning to April vacation.

My son was walking as we entered the store, but we had brought the stroller, just in case, as I always do now in any place that is big and has fluorescent lighting. He strutted in, looked around, then looked back at me and climbed in the chair. We went on our way.

It really was a good day, with everyone in a fantastic frame of mind. Then, something happened. It was not a mean thing, or even a thoughtlessly cruel thing. It even surprises me that I am still thinking about it. Still…

We were in the outdoor toy section when a man (maybe around my age) and his son (probably around five years old) came down the aisle. I saw the boy look at my eleven-year-old son in the stroller, just about to ask the inevitable question, and his dad took his hand and guided him quickly away from us.

Later, looking for marshmallows, we saw them again. By then, my son was bouncing in the chair, laughing, as he often does when he is either excited or overstimulated (and big box stores nearly always do it). He was all right, though, but I could see the boy’s concern. The boy tugged on his dad’s jacket. His dad kept shooshing him, as he quickly navigated his son and himself out of our path.

I noticed, as we made our way to the cash registers, that the dad was staring back at us from a farther line.

Was it that bad?

Well, I sometimes wonder. It was still a glorious day, the type you know was good when night finally comes, and the kids are whispering in the dark, then are suddenly quiet because they are too tired to stay awake longer; when you, adult, fall into bed at night all sore and smiling and snuggling into a bathrobe, warm and exhausted, too, after the kids have fallen asleep; when the laundry basket is full of clothes that are absolutely, positively, filthy and smoky, and covered in grass stains. We had that kind of a day. We went home from Target, turned the music up, laughed, blew bubbles in the yard and played giant Frisbee games. Actually, it was my older son who was having the tougher day, trying to figure out where he could find enough wheels, wood, and a motor to build a go-kart—and frustrated when I was less than encouraging about that particular plan. It was a fine day, a good day, a typical day for nearly all the families around us. And still, that father’s stare stuck with me.

I wonder, sometimes, does it really seem that bad, this life? When other people see an eleven-year-old boy retreating to a stroller (didn’t know they made them his size?) to make it through a store, but unable to tell anyone about it because he can’t talk… when they see the meltdowns, or actually hear of the difficulties, does it really seem that bad? Do the non-staring people feel that way, too?

Sometimes, it’s been the opposite that has stuck with me: the overly helpful people, the ones who are trying, who still don’t know what to do. But they do try; they don’t run away. There are the complete opposite, the ones who look for that moment for their own advantage—a Kodak moment, a charitable act, a momentary kindness that makes a statement but is not so kind—those who seek the shunned, emphasize the difference in some hope of making themselves seem better. I don’t mean people who really help, who really care—only those who think that they seem like good people if they pretend to. That is perhaps the worst.

I realize the difficulties in knowing how to act around a kid with disabilities, much like moving to a new country. What are the customs? What did they say, and did that gesture mean something? Are these people nice? It’s a learning experience, emotional, not always quite right. It’s not within the comfort zone, and yet, it does not have the same thrills of living life that is conventionally adventurous… at least, at first.

I have told the tales of trying to meet these kids’ needs, of being frustrated through various agencies’ incapacities to do the right things, or to be funded enough to do them. I have told of the heartbreaks when tough decisions have to be made, when things fall apart. But somewhere in there, I hope I have conveyed the many joys. If I have failed to express those enough, maybe I should try harder. I fear I have frightened too many people.

Challenging, yes, it is. But isn’t life that way for us all? Not unhappy, not bad, though! The joy of yesterday—that simple day—warms my heart, thrills me. It is difficult to explain why. When things are so wonderful, do we ever think to wonder why?

We were happy, and I suppose that is why the father’s stare stuck with me. The stare, I believe, was one of confusion, one of fear, one of pity. I have indeed seen the look before, even heard the words that tend to go with it. And yet, I rarely have the right response to it, or even know how to deliver that response if I have it.

I sometimes wish for a more forgiving world, for one that didn’t mind difference, for a world where the richness of life accepts the difficult parts, where we can acknowledge that the best things are never simple, and where the fear of facing my family did not prevent people from wanting to get to know any one of us individually.

My family really is like any other. It’s just not so obvious.

My son has a rather extreme case of needle phobia. Fortunately, his pediatrician is a patient man who also has a sort of cheerleader spirit about him when it comes to uncomfortable medical care.

So, at age ten, when my son had his finger pricked to check iron levels, the doctor went to fetch “the good nurse” (it probably could have been any of them), and came back to hold my son’s hand. Two years later, that tactic was not enough to get through the tetanus shot. It had also been several weeks since the doctor had ordered blood work that might yield clues about the fatigue that has made it nearly impossible for my son to get to school in the morning… “Why don’t we do both in one visit,” the doctor said. So we did.

Now, this took a special appointment, two attractive nurses, a juice box and a bribe to accomplish, but we did get through it, and as my son’s color came back into his face, we drove to Moody Street so that I could make good on my end of the deal: I was taking him to the Construction Site.

The Construction Site was as near to paradise as any store could be for a kid like my son—or my brother, for that matter. I had discovered it entirely by chance looking for more parts to a system of toys that my brother had, in fact, given to my son for his birthday. I googled “Capsela,” and found somewhere with a good selection. When I began to place my order, though, I noticed that the store was in Massachusetts. We were new to the state at the time, so I did not realize that Waltham was fairly close to where I lived. I was up for an adventure, and got out the map to find it.

The moment I walked in, I was surrounded by a wondrous world of Gemütlichkeit. I remembered Munich: the orange tile rooftops, the beautiful Volksbad, friendly, healthy-looking people, and the mechanical things that seem to run the whole show. Sure, the Glockenspiel is a tourist thing, but it is wonderful, and the city seemed like a real-life version of Gepetto’s workshop. The Construction Site brought it all back to me, and added a “Hooked on German Kitsch” style music selection to complete the sentiment. I was hooked.

I also realized that I absolutely had to take my son there. My son has always been good at building things. He used to draw plans of machines that he saw in movies (the chicken pie machine from “Chicken Run” comes to mind), and then made prototypes from blocks, Lincoln Logs, Legos, or whatever else he could find. The detail he put into these endeavors always stunned me. When we lived in Vermont, we spent hours in Willey’s General Store hardware department in Greensboro, rummaging through dryer venting materials, light switches, tubing… At home, broken toasters, radios, clocks, all found their way into my son’s room for investigation, if not repair. Vacuuming his room was never a quiet affair.

So, of course, he loved the Construction Site, and of course, we went there often. Or we used to.

For all the wonders of the store, it also had the sorts of toys that ate through birthday money fairly quickly. Time was a factor, too… and computers that let you build neat things and draw. Actually, a good portion of time went to playing with the toys my son had bought there years ago–not to buying new toys. Other interests came into play, too, new challenges, and I realized when we drove up to the store that we had not been there in almost a year.

So, I was surprised to find the “For Lease” sign in the window, and a much smaller inventory, boxes stacked in corners, Bionicles 25% off.

The Construction Site is not moving; it is going out of business.

Maybe it’s a sign of the times. Maybe everyone is busy and can find Legos online or at Target. Maybe those European imports simply cost too much as the dollar drops. Maybe there are fewer dollars floating around for toys in general. My family certainly feels that. I know it’s selfish, but I hoped that people who had money to spend were still spending it there, so that we could have our moments to dream, to window shop, to see the beautiful toys, and sometimes to take something special home.

I find today’s thunder soothing, like a cup of hot tea, like promises of spring sometime, hope—always hope.

The rainfall comforts, acknowledges the absence, washes away the cold snow that covered the gap left behind, the unanswered questions—cold snow, no virgin snow now, but a tired, stained white spot in my yard, now nearly melted, dirty leaves settling into the yard, becoming a part of it. Beneath the snow, somewhere, spring.

My little girl asked me this morning if I knew what she liked about rain. She said she likes that thing that happens when one drop falls on a quiet puddle, and it all spreads out. Rushing through the streets, late, I was surprised she noticed the change in the water, but it made me slow down, look at it, look at her again, just look.

Ripples cut through the surface of a lake, and yet the lake remains.

Larry the squirrel has taken up permanent residence around our dining room window. He has made himself notable by keeping up a corpulent physique, as you can see. He hangs out on our fence, and occasionally takes a daring leap, holding onto the outside of the window, peering in. I think he likes us. I don’t know why Larry was the first name that popped into my head for the creature, but my son thought it was funny, so it stuck.

You may wonder why I have had so much time on my hands to name squirrels, and why my son is home helping me name them. Well, I had fully expected to be back at my normal routine by Wednesday at 9am, but that was before Wednesday at 5am. It was at just that moment that my older daughter produced tangible proof that her tummy felt sick, as she assured me it did before she went to sleep the night before. She was staying home. Another hour later, her brother gave me evidence that he, too, could not be in school. That left one little first grader to return, all alone, on that big yellow bus, after ten days away. All alone, she reminded me. She started to make up a song about it. She does that kind of thing when she wants to make a point.

Even Larry was glaring at me by the end of it. I drove her to school.

I know that my little girl was especially concerned that her sister would spend the day learning the songs from High School Musical II, which they had just purchased themselves on Sunday. She was afraid that big sister would be the first to know “Humu humu nuku nuku apua’a” all the way through. I think my first grader really wants to play Sharpay herself.

No, I don’t think she wants to; I know she does. In fact, she told me that her new nickname is Ashley. She has taken to wearing sunglasses around the house, puts on leotards at night instead of pyjamas. When she reclines to go to bed, she breaks into “Fabulous,” and tells me, “I want MORE!” I’ll admit, she isn’t half bad. Between this and her sister’s Britney imitations, their brother has been groaning a lot. If I start in with the torch songs, he usually turns in early and puts on his earphones to Linkin Park… and he sings along (although he denies that).

This all started a long, long time ago, but really came to life last spring, when my little girl was a Munchkin in the Framingham High School production of the “Wizard of Oz.” It was there that she discovered that it is “not scary at all” to be on stage. In fact, she told me it was really fun, because you can hear people clapping, but when the lights are on, it is all about the “world up there,” as she called it. Her one regret–no, two: she didn’t get to be Dorothy, and she did not get to be in the Jitterbug scene.

Now, I mentioned a few nights ago some highly idealistic ideas I had long before I actually had kids about how they would be spending their free moments…. something about rehearsing Hamlet, I believe. Now, Shakespeare would be fine, not to mention impressive, but what I didn’t realize when I was twenty is that kids need to be kids. In other words, all those teachable moments I was envisioning really were more about who I thought my kids should be instead of who they really are. I just had no idea how special they really would be.

I may complain a lot about my kids’ not liking a lot of the music and musicals and movies and food and so many things that I think are just wonderful… But what I do love is watching them get really excited about anything that allows them to express themselves. (Um… except tattoos. And probably some other things they will ask me about in the next few years… I hope they ask me…) At this point, though, if it’s High School Musical and Hairspray, and they are also making up their own things about the little girl alone on the school bus, and the Pegasus and the unicorn, I am just going to enjoy the show. Larry the squirrel may enjoy it, too. I would not be surprised if there is a song about Larry soon.

And as for my little girl’s lost practice time, it turns out there were no “rehearsals” yesterday. My older daughter was pale, asleep, and feverish all day, and my son looked pretty pale most of the day, too. Larry was the only one up for theatrics, and even he wandered off for a rest at some point. Now, a day later, everyone seems well again, ready for rehearsals, ready for school, ready for life. And I am ready for bed.

Happy New Year!

I came downstairs this morning, flipped on the radio, and I think I heard a Latin version of “America the Beautiful” on vibraphone. They never announced what they played, but I’m sure that’s what it was. It was just too early for that kind of tomfoolery.

But, I must say, it did finally get last night’s anthem out of my head. After leaving the Worcester DCU Center a few minutes after we arrived, one among us hyperventilating and two crying—and that in itself more than a little tragic—my girls asked if they could listen to Kiss 108 on the way home, too. I cringed, “Oh gee, girls, isn’t that what we listened to all day?” but quickly said yes. Yes, anything.

They said they were counting down the top songs of 2007, but I could have sworn we heard exactly the same show on the radio the night before. Yes, we spent a long time in the car on Sunday evening, too, when an ordinary trip to CVS for antibiotics and antipsychotics turned into a two-hour joy ride through the western suburbs. Admittedly, the trip was not exactly a joy, given that the pharmacy technician had made a slight error in the names of my two boys. Rather than just assuming that their last names would be the same and the first names different, she apparently put them through the system with the same first name and different last names. It took them a call to my ex-husband, who called me (why they never called my cell number, which I gave to them at drop-off, I still do not know), three calls to one insurance company, and two to another to straighten it out, all while we kept coming back in half-hour intervals. Thank God for drive-throughs. But then, we heard a lot of Britney.

I must have heard that one really popular song before—no, I know I had, many times—but not repeated in such a short span and not day after day after day. We got home last night from our short-lived revelry (we at least saw fireworks), and after posting something here that I had written earlier, then popping upstairs to watch “Ratatouille” with the girls before bed, I had some unexpected time left to sit and think about 2007. But I wasn’t thinking, or even meditating. The year was about to end, and there I was, in the bathtub humming strange songs.

When I realized what I was doing, it really bothered me, and it also unsettled me just a bit that one thing I had learned on the last night of 2007 was that my older daughter does a fair Britney imitation. (She did nearly shave her head once, too, but that was when she was four, and her brother was responsible for starting with her bangs. I think that my blood-curdling screams when I first saw her hair all over the floor and the scissors in her hands will prevent any similar episodes in her adult life, but may also sentence her to a lifetime of therapy.) The thing is, I wasn’t sure she was getting all the words right, but I was also glad that she was not singing what I thought I was hearing.

I couldn’t go to sleep like that, though, the tune going through my head with no clear idea of what the song was about. I came back downstairs, and spent a good hour or so of my New Year’s Eve googling Britney lyrics. Reading the words aloud made me feel like Steve Allen.

“I’m Mrs. Lifestyles of the rich and famous
(You want a piece of me)
I’m Mrs. Oh my God that Britney’s Shameless
(You want a piece of me)
I’m Mrs. Extra! Extra! this just in
(You want a piece of me)
I’m Mrs. she’s too big now she’s too thin
(You want a piece of me)”

Oh dear. Somehow my effort to influence my kids’ taste in music seems to have failed almost as badly as it has in the food category. My kids used to like things I listened to (and things I cooked, too). I know I reported last summer that my kids’ acceptance of my own favorites seemed to have fallen off in the folk music genre, but I did not realize that their taste had gone so far into Britney territory. Even more disturbing was that after I found the lyrics, I also found the video for the song on YouTube, as well as two remix versions, and I watched them all the way through.

My daughter, the would-be Britney, has just come downstairs after her bath to inform me that she finds my recitation of “You Want a Piece Of Me” insulting, so I think this little writing exercise will have to come to a close. It is bedtime, after all, and tomorrow is a school day. Vacation is over, and hugs are necessary, for all of us.

They really do want a piece of me.

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.

My writing has been affected by the middle school schedule. I have found it difficult not to nod off sometime after 11pm, since I have to get up shortly after the brutal hour of 6:15am. It stinks, particularly because I feel my creative urges draining from my fingertips on a daily basis. I hope to correct this soon.

In the meantime, I contribute this, a song from my girls about a large, stuffed polar bear named Beary. If you knew my six-year-old daughter, you would understand why Beary is such a funny bear. Beary is cantankerous, but has many adventures. If you knew my eight-year-old daughter, you would know that Beary has been hearing nightly recitations of Winnie-the-Pooh, with some intriguing consequences. Beary has become quite distressed at learning of Pooh’s emprisonment chez Rabbit. Also, balloons, umbrellas, and the words, “Tut, tut, it looks like rain,” have affected Beary in a profound way.

Beary Blues

I looked in the kitchen for my honey pot.
I thought I had some honey, but I guess not.
I’ve got the Beary Beary blues
I’ve got the Beary Beary blues
I’ve got the Beary blues, and I need some honey, you see.

I looked for some honey… in a tree.
I looked for some honey, but damn that bee!
I’ve got the Beary Beary blues
I’ve got the Beary Beary blues
I’ve got the Beary blues, and a stinger in my knee.

I went to find honey, and guess what I saw.
I saw my honey on another bear’s paw.
I’ve got the Beary Beary blues.
I’ve got the Beary Beary blues.
I’ve got the Beary blues, and no honey, poor ole me!

I finally found some honey in a honeycomb.
I turned around then and brought it right on home.
I’m not Beary Beary blue (anymore)
I’m not Beary Beary blue (anymore)
I’m not Beary blue now, eating blueberries with honey!

I used to leave my house in northern Vermont with some combination of trepidation (would my family survive without me?) and anticipation (hot damn! I’m headed to the big city!) as I headed out across the countryside toward Montreal. The first time I went, I took a bus, enjoying the tales and tribulations of the rave organizer who sat next to me. I decided the next year that it was much more satisfying to have the option to stop along the way, and pile the car full of treasures that at the time were usually no problem to drag across the border duty free. I managed to fill my farmhouse with mod furnishings from Caban, electronic music, exotic vegetables and enough elaborate pastries to extend the stay at least a few extra days in feeling, if not in fact.

It was a getaway for me, to be sure, and I craved the city with the passion of Lisa on Green Acres (sans Hungarian accent), like a smoker trying to quit. “Bloom where you’re planted,” my neighbor from the dairy farm across the street told me. Oh, I tried. I tried. And I did sometimes, managed a few nice flowers from time to time. I looked across the street at the Holsteins and her business sign, “The Beauty Hut,” and the grey hills and the sky, and I tried.

And then, an hour into the trip, I could feel my heart race—literally race—as I drove through the fields and saw the skyscrapers in the distance. I loved the way that the city just sprang up like that, somehow adding to the excitement of it all, like Oz. The traffic picked up there, adding car after car, a few crotch rockets zooming their riders off to an inevitable early grave. And I would finally reach it, le Pont Champlain, there at last, over, then off the bridge, driving fast. Yee haw! (or something a bit more sophisticated than that).

I loved racing down the hill on University, downtown, to Rene-Levesque, the thrill of being back where it was busy. It’s hard to imagine the contrast from where I lived, where the first traffic light was ten miles away.

For all the luxury of time, bookstores, hair coloring (it was red then), and room service, the trips also gave me perspective. Vermont was beautiful, glorious. I was involved in the community, advocated for my kids constantly, knew everyone. I loved that, but I also always knew that at heart, I was a flatlander. Not my fault, really—I just didn’t grow up there. And I had this kid who needed so much. Once, in a grocery store, a man saw me pushing him and his sister through the store, and thought to share his thoughts with me.

“I hope you don’t plan to have more of them,” he said. I was taken aback. The man didn’t even know that my older boy was in school then. For all the time that I had faced the realities of my son’s disabilities, I had honestly never heard anyone actually voice such an opinion to me directly.

“These kids cost everyone else a lot of money,” he informed me. I found myself dumbstruck, then hostile, thinking of the man’s own cost to society. He was older, certainly had health concerns that were undoubtedly some cost to Medicare. But in spite of that, the man did deserve those benefits. I could not think of a thing to say, so I just told him that I loved all my kids, and walked on.

I checked out, pushed my groceries out to the car, helped my little girl and my three-year-old son out of the carriage. My daughter tried to climb out herself, but my son did not. He did not try to walk. In fact, at that point, he was unable to do that, but was getting closer to that developmental milestone with the help of over two years of physical and occupational therapy. My boy smiled, and let me load him into his car seat, placid, trusting. The man from the store was standing behind me, and I stiffened.

“I’m sorry,” he said. “I don’t know why I said that. It’s really none of my business.” And he walked away.

I am sure that he felt better for apologizing to me, but I felt numb for a while, then mad at myself for not having the appropriate, politically active, stereotype-shattering response. Then, I just felt sad. I always assumed that everyone just absorbed the love that my little boy exhibited with his belly laugh and hugs. It never occurred to me that he was viewed as “too expensive.” I felt sorry for the man, probably counting every penny, and thinking about Town Meeting and property taxes. After all, he was right. My son’s education, which was still nowhere near appropriate, did carry a hefty price tag that was all too evident in the school budget.

Days after the man shared his thoughts about my right to have more children, I found out I was pregnant with my fourth child. And yes, I continued to take my disabled son out in public with the others, and let the glarers glare. Sometimes, someone smiled.

So, that brings me back to the perspective I gained from Montreal. What was I searching for? What could this Oz grant me? There, I was not the mom with a cause, except as I wished to be. I escaped, spoke French, saw plays, and thought about the life I had been called upon to lead. Sometimes it struck me, after days of seeing not one person like my son, that life felt superficial. Then, I’d come upon the man who sat, speechless, with a cup on Ste. Catherine Street, just a man and his dog. I knew he probably had autism, probably some other mental health issues, but enough skills to sit out there all day and collect his money. What more might he have been doing? Was this the life he chose, or was it all that was left for him to do?

I went because I loved the luxury, the freedom of letting go of a reality chained to limits imposed by disability. I could let go, once in a while. But why chains? why such limits? If I left feeling exhausted and questioning about why this life had been handed to me, Montreal did take me home. I returned to have it in all its fullness, with new energy and hope, a new fire blazing to make a difference.

So, now, fully recharged from the laziness of summer, I return.

I have just been kissed.

My daughter is awake too late. If I had investigated, I probably would have found the book beneath her pillow (she knows by now it’s better to hide them). She tells me that there are monsters under her bed, and I hold her and tell her that it’s impossible because I sprayed monster repellant in key areas and at all entrances to the house while they were gone. She asks if I remembered the chimney. Yes, even the fireplace below, just in case. She asks me where the can is. I used it all. She asks me where I bought it.

“It’s time to sleep, honey,” I say. She kisses my cheek, then takes her hand and touches the place she kissed, and waves it all over me.

“Sprinkles,” she says.

“Huh?”

“If you touch the place you kiss, you can sprinkle the kisses, so you know I love you all over.”

She made this up herself, she tells me when I ask her, and I swell with that warm pride you know when your kid does something special.

After all, the sprinkles work.

All right, this is the biggest thrill of all. The kids, the three who came home, yes, they are home. For all the rest and relaxation I needed so much, I missed them. My oldest is almost twelve, so he ran in the house, looked around, and said, “Wow. You cleaned,” before he headed upstairs with a bin of Legos he could barely hold. The girls ran from room to room saying “Hello kitchen! Hello basement! Hello room!” Then they put on the Spice Girls (my almost-twelve-year-old loved “Naked” when he was about two and a half—don’t tell his first date). It was “Mama,” and they said it was for me. A dedication. How sweet! My six year old informed me after squirming around a bit that she even missed the toilet here.

So they are home, running around, not dismissing today parts of dinner that will inspire a scowl tomorrow. It’s new again. It’s all new, really, with one not here. Yes, I still miss him. Everything seems new. My oldest starts middle school Tuesday, and needs a pile of binders and folders to organize his life in exactly the way that every other kid in sixth grade will be organized. I think he grew. He wants an electric guitar. I thought I had talked him into the acoustic, but apparently I created a monster when I suggested guitar at all. The girls have slipped the Spice Girls CD into the karaoke. They already know all the words, and I know which girl grabbed the mic, and which one grabbed it back. There is a mish-mash of musical bits all over the house right now. Joe Henry down here, Linkin Park in my son’s room. I love the noise. Some noise is quiet now, but in our hearts, always here.

My friend’s washer broke, and she is coming over to throw her kids’ laundry in before we drink some coffee on the porch and watch the kids. They will be looking for the two-year-old neighbor, who has been checking daily to see if my kids are home to take a walk with her. The next-door kids should be back from Colombia tonight or tomorrow. The sky is bright pink, and the kids are running down the sidewalk, then climbing the Japanese maple in the backyard.

And it is true: my house is clean, maybe even inviting. It is really quite remarkable that I accomplished anything at all, considering that I feel refreshed after what felt like nothing but luxury.

But this, this is luxury: small hugs so big they embrace the whole world.

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.

“Did you see it?” my younger daughter pointed out the car window. “It’s there, there!”

The daily heron lumbered over the Farm Pond, toward the hospital, in search of better fishing, perhaps, or just part of the routine. Who knows?

I love herons. It amazes me that such a large, steady bird can just fly right over the neighborhood and downtown, largely unnoticed as people go on about their business. Seeing them, although not rare, is always an event for our family, perhaps just because I have made it one. I have always liked to watch them, pinning some hope for luck on them as if they were storks… although I don’t really need a stork’s brand of luck anywhere near my house. I love the way herons fold their necks into their bodies as they fly, but leave legs hanging, making their tallness graceful, but not graceful enough to lose charm. When they have found a nice, shallow river, they stand, silently, forever, it would seem, for the essential fish to swallow whole. They wait for what sustains them, and take it in a breathless and elegant moment.

The heron spotting for today happened in spite of rain that had started hitting the windshield lightly. Another rainy day, after all. In some ways, the rain seems a relief. We were all already wet, riding home from a swim, hungry, and a little cold, to be honest. The car doors open, and girls spilled out, running into the house. An hour remained before boys would return from camp. The girls ran a bath to warm up, dried off, put on pajamas (yes, pajamas) and took peanut butter sandwiches to the basement. They started drawing.

I made tea and watched them for a while. They were quiet, more likely exhausted after a very late bedtime last night. I was tired, too, working in morning, yes, the swim, too. I could have slept later this morning.

So, now I can sneak upstairs for a few minutes before the late afternoon. I crave my attic. Like the balcony, it is accessible only from my bedroom, my own private spaces. My records are there. Let’s see.. what for today? Glen Campbell, Todd Rundgren, Charlie Rich. Charlie Rich? No, maybe not a good choice for mid-afternoon. I opt for the Lovin’ Spoonful. Hums. Yes, “Rain on the Roof” seems pretty obvious. But what I want, two songs actually, are on a greatest hits album. Where is it? Yes. I have to hear “You Didn’t Have to Be So Nice” (I love the way it adds the layers) and then, one that always makes my heart beat faster, “Darling Be Home Soon.” Never mind what the song does to me, I am just still impressed with the “dawdled”/”toddled” rhyme.

So, I put on the album, and gather myself. A big, round, fuzzy white rug covers most of the floor, and it is there that I sit, looking through the quarter-circle windows that really do open. I look down at the rain puddling up in the neighbors’ yards, and I look through the steam of my tea at the gas station down the street, the umbrellas bobbing along the sidewalk. I love this quiet moment. In a few minutes, it will be busy again, for a while. And then, later, in a few hours, it will be wonderful in ways that nights are wonderful, wonderful wishes, wonderful, graceful, lumbering words.

—————-
Now playing: Lovin’ Spoonful, The - Darling Be Home Soon
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.