the tyranny of the schedule
8 May 2002
Seven forty five a.m. Damian sits in my lap watching the last few minutes of a Stanley episode. Stanley and co. rush to push a wild tribe of chimps back into the Great Big Book of Everything before Mom comes out with a big bowl of banana pudding for Stanley. Mom is awfully understanding about her trampled flowerbed. This makes it hard to believe she’s real. I can buy the rest. A talking goldfish? Sure. A magic book that transports you and all your animals? Sure. But a perfectly tranquil, kind mom? That’s pushing things.

I don’t know how much of the story Damian understands. I never really know unless I quiz him, which I’m not going to do on a drizzly, drowsy Tuesday morning. But he’s enjoying the chase and I’m enjoying the feel of him in my lap. In a few minutes he’ll be gone, slipping down off the couch, turning to give me a perfunctory goodbye kiss, walking out the door with his Daddy. I already hear the echo of his urgent "hold my hand!" as Dan struggles to open the security door while carrying snack bag and computer bag and trying to hold one small hand.

And then, just like that, they’re gone. The house echoes with the early morning quiet. A car – probably Dan’s car – drives over a manhole cover on the street with the ba-dum bump of a comedian’s punchline. And I’m alone. I can go back to bed, I can read email, I can exercise, I can do whatever I want. I don’t have to set an alarm if I go to sleep, I don’t have to stop what I’m doing forty five minutes (the drive) plus half an hour (getting ready) before I pick Damian up from school. I have no responsibilities, except to myself. This is my time. My time to relax, to recover, to write.

It’s going to take some time to get used to this.

For the past eight months, since Dan went back to work in September, my life has been engulfed by Damian’s. Dan drives him to school at least four days a week, that’s been a much-needed boon. But not enough.

A portrait of my week as it was:

Mondays I leave the house by ten a.m., pull into a metered spot alongside the school by ten forty five. Wait by the gate for someone to buzz me in. Walk along the newly paved path to the front door. Peek through the small window in the classroom door as the class sits in their small seats for goodbye circle. Laura spots me and hastily switches focus, asking Damian to pull his picture off the board so she can sing goodbye before he vanishes out the door, hand in my hand.

Sometimes he’s ready to go. Sometimes he wants to stay and play in the sand yard. Always I say "We have to go now. Right now. Not two minutes from now. Rivka’s waiting for us." And somehow I get him out that gate and into the car. Sometimes it’s easy and I sigh the sigh of a near miss. Sometimes it’s a struggle and I sigh the sigh of a battle fought and won. I wish I could give him time to play, time to stay, but I can’t. He’s got an occupational therapy appointment across town. The kid is booked up. Places to go, trampolines to conquer.

Rivka greets him with a smile and I settle in with a book in the waiting room. This is new, this stolen time. Until March, I followed them into the gym, observing and kibbitzing and sometimes becoming a playmate and therapy partner. I valued it but I was so burned out, and this was an easy moment to take for myself. Damian was in good hands. So I pulled away, back to the relative quiet of the waiting room alongside fidgety, sometimes too-talkative parents of special needs kids waiting on padded benches for the slow magic of another therapy session.

I wait and I worry. Should I be in there, supervising? I’ve gently been pushing Rivka to be more playful with Damian, is she following through? Is he responding to her with the loud delight I know he’s capable of or is he dreamily following the drill, not fully engaged? I worry, but I also need the down time, the dream time, the disengage myself. So I sit and read for now.

The time passes so quickly, just forty five minutes and Damian’s back in the waiting room with a grin, holding out a collage. He pasted two flowers on a piece of paper, drew shaky, crooked stems down to the ground, traced his name at the bottom. He tells me, "This is a story about two flowers. The flowers say, ‘We have stems!’" I say "Yes, I see that," as Rivka fills me in on how he played with a little boy who’s nearly his level, how he climbed on the jungle gym and remembered how to place his feet going down, how they worked on arm strengthening with a controlled fall from a trapeze bar to the "mud puddle" (bean bag chair) below.

We amble out the door, admire the fountain in the office building atrium, toss a penny in and make a wish. Get a gumball out of the pharmacy machine. "I have an orange ball!" Damian announces. And it’s time to move on. Right now I feel relaxed, content. It’s not the here-and-now that exhausts me, it’s the accumulation of the minutes, the hours, the worries.

We go home. I try to get Damian to eat. Cheese sandwich? PB&J? Crunchy cheese snack (a/k/a chicken taquito)? Anything? Skinny boy wants to play, not eat. Silver’s coming soon, though, and I worry. I worry that he won’t have the energy, that he won’t have the focus, that he’ll get hungry and not know it, get irritable instead.

Silver’s here. Two hours off duty but really more like an hour and a half plus confab time. Do I do dishes? Do I write? What do I write? An entry? Email? A story? An hour and a half and counting. The phone rings. Do I ignore it? Do I answer it? Can I be rude on the phone and say "I don’t have time to talk, the clock is ticking"? An hour and counting.

I hear gleeful shouts from Damian’s room. I’m tempted to peek in. And sometimes I do. But if he spots me, I become part of the action and then I lose my precious – what is it now? – forty five minutes? So I content myself with eavesdropping. How strange it is that my son is playing with someone else, that this gentle play – because Silver is so gentle with him, very much following his lead – is therapeutic. Is teaching him to emerge into the world, to trust his ideas, to follow through on an action, to think creatively.

How does it work? I know the principles, I do the work myself, I talk about it endlessly with every single one of his therapists and with Dan too – with Dan most of all – but at the same time, I wonder how this works, how this can possibly work. Even as I see the evidence of it unfold by the month, by the week, hell, I see changes by the day. I still wonder. Floor Time is such quiet magic. Such a subtle reorganization of a child’s brain. When you help someone up a step, you hold the bone below the elbow. Supporting. You don’t walk for them, you don’t push their legs into battery operated casts, you simply support and guide, letting their weight fall on your arm, letting them feel the strain but taking some of the burden on yourself. It’s like that, this work. Visible but not.

Silver leaves. Damian melts down. Well, no wonder. Kid’s hungry, kid’s tired, kid’s been up since seven a.m. and working hard in the guise of play. Now he’s free of responsibilities, free to yell at Mommy. Mommy’s free to, well, take it. Respond in what I hope is a reasonable tone, respond in what I hope is a way that both sets boundaries and lets him know he’s not been abandoned in his misery.

We sort things out. Damian’s happy now. Fed now. It’s five p.m. now. Have I just wreaked havoc with dinner time? Probably. But what’s a meal plan when there’s an unhappy kid to be sated?

Five p.m. Dan will get home in two, maybe three hours. No, scratch that. Monday? Dan has class. He gets home at eleven. So. Five p.m. Play and negotiate and try to prevent an impromptu six p.m. nap that would interfere with an eight p.m. bath-and-bed ritual. Five p.m. A three hour long balancing act.

Time passes. Nine p.m. now. Kid is in bed, a restless sleeper. I’m in his bed too, drifting, sleepy thoughts about writing and child development and how vulnerable he looks in the blue light from the window. How young.

Nine fifteen now. I slip out of his room. The next hour or two are mine. I plan to be in bed by ten. I’ll probably be in bed by eleven thirty. I’m dumb that way. Too tired to write, too tired to sleep. I web surf and daydream my way to bed and another early rising.

And that’s just Monday. The rest of the week is more of the same, only with different cast members, different itineraries.

Tuesday is both the best and the worst. Two round trips to Santa Monica, over two and a half hours in the car, but a session with Heidi, his first OT, is a highlight of my week. Damian’s too, I think. She’s warm and fun and has such conviction that he’ll push himself harder, that he’ll try new things, and so he does.

Wednesdays I pick Damian up from Kahuna at one p.m., watch him play in the bike yard or the sand yard, encourage him to interact with other kids and am thrilled to bits when he does, then coax him gently/playfully/firmly/more firmly into the car to go off to gym class so he can be around typical kids while balancing on beams and dropping from ladders and shooting across the room on a glider. He loves it – or did, for several months. Now he seems reluctant to go. A phase? Maybe. Or maybe it’s the new teacher, the one who seems dictatorial instead of playful, condescending instead of encouraging. I think his gym class days may be numbered. But for now I sit at the edge, poised to intervene, to encourage, to help him answer questions during the opening circle time. Poised to leap, as if I can do the exercises for him myself, as if by watching I can will him to sit still, to listen, to follow along, to embrace the group activity. Gym class is not relaxing.

Thursdays I get to school by twelve fifteen; Robin works with Damian on Thursdays and she’s our "team leader," which means we’re supposed to trade notes. I’m supposed to play with Damian under her supervision, to ask for guidance from her, to share problems. I don’t. She’s been doing floor time since last September, I’ve been doing it since last February. I have the arrogance to believe I know my son and what he needs better than she does. So I come a little late, just late enough to wiggle out of the floor time part of the session. We confer, yes. We trade notes, yes. I like her, I find her mostly easy to talk to. I watch her play with Damian. Sometimes I give suggestions. She listens willingly. For a time I am teacher to this teacher and it feels strange.

We leave Robin, often lingering on the school grounds. Damian clambers up to the top of the jungle gym, insists I climb up too so he can stand at the steering wheel and drive our car/truck/firetruck to Las Vegas or New York or the zoo. He runs over to the sand yard, offers me a sand sandwich. We sit on a grassy hillock and share a picnic lunch from his snack bag and try to keep the various papers from his bag from floating away on the treacherous ocean breeze. I like this time. Together time with no pressure, no angst, nowhere to be and nobody to confer with. Later Kahuna comes by the house and I have a few more minutes to myself. I like that too.

Friday has had so many different configurations, I don’t know how to describe it. First September: one floor time therapist at home but no, she didn’t want to drive all the way across town (I know the feeling). Then November: another at school but no, she wasn’t good for Damian. Then January: Friday afternoon was just the two of us, Damian and I, running errands, playing together in focused floor time or unfocused down time, going to the park. Almost like old times but with that constant edge of "I should be doing something to help him progress. I can’t let us stand still pretending it’ll all be okay."

That’s the thing, isn’t it? It’s not so much that the commute wears me out, though it does. It’s not so much that I have to be advocate and therapist and supervisor and cheerleader and schedule coordinator, though that all wears me out too. It’s more the knife edge that cuts into my peace, that says "You may be burned out, you may be dizzy from exhaustion, you may be a confused ghost of yourself, but you’re Still Not Doing Enough." So little time, so much riding on every decision. Sometimes it feels like it all depends on each and every parental action I take. Every single interaction. Even though I know now it doesn’t, I can’t shake the feeling.

I started last year by being a hands-on involved parent. (As Dan did; I don’t mean to imply that I’m the only one swimming in these deep waters – Dan dove right in too. He can be fresher in the evenings because he doesn’t have the days, so in many ways he’s been better at it than I have.) I went at it full-tilt because I had to. Because Damian needed it more than anything else and nothing in the world was as important as that. It wore me out but that didn’t let me off the hook. He still needed more.

And now even though he plays incredible imaginative games on his own, stretching scenarios and linking ideas and investing life into his squishy blue rubber frog and his catnip mice, even though he’s doing better than we could have guessed just one year ago, I still feel guilty for what I’m not doing. Guilty every time I sit on the phone watching him play, guilty every time I feel too stupid-tired to get down on the floor with him and enter his world. Guilty that I’m not doing enough, that I’m therefore somehow holding him back. It’s probably no longer true. I probably have breathing room now, but that guilt is embedded deep in my psyche by now.

Guilt mingles with resentment, an unholy mix. I want my time back. I want my life back. I want to write. I want a chance to be myself, not just a mom, not just a therapist/advocate/chauffeur/etc. I feel selfish. Selfish and oh so very tired. And yet life goes on. The treadmill keeps moving me forward. I drive and watch and play and confer and collapse.

That was my year, from September to April. Everything changed a couple of weeks ago, at least for me. A little something called hiatus. The TV season has a summer break, just like high school. Dan is home for three months, maybe more. He’s willing to take over the chauffeur duties, to fully share the play/observe/worry duties. To give me room to remember what it’s like to be myself. To be by myself. To be doing something just for me.

I haven’t taken full advantage of it yet. The first week I devoured sleep, luxuriated in stillness and the freedom from that endless commute. The second week we hustled to get the house ready for Damian’s birthday party. (People? Here? Uh oh.) It’s only now, the third week of this amazing, restorative hiatus that I can settle into a morning routine of writing and exercise and silence.

You know what? When Dan and Damian come home, I look forward to it. When Dan is hanging out with Damian in his room and I have absolutely no obligation to come in and play, what do I do? I come in and play. This morning Damian padded down the hall to our bedroom at seven a.m. Time to get up, but he and I snuggled in the warm bed together while Dan took a shower. We played a word game, he and I. I can’t remember any specifics, just that it was silly and he laughed and said "Say it again, Mommy!" and I laughed too and it felt so good to be with my son and enjoying him in a pure, simple way with no heavy weight on me saying "You should do this. You need to be a Mom. Now. Like this." When I feel straitjacketed by shoulds, by tasks and responsibilities and far too little sleep, I sleepwalk through my role, dazed and cranky. When I have room to breathe, to be myself by myself for myself, then and only then can I be a real mom, enjoying my child. The weight has been lifted. A burden shared is no longer a burden.

Mother’s Day is around the corner, but I’ve already gotten my present. Thank you, Dan.

[Note: for an annotated cast list of all the people I've named, go here.]

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