• What’s the right answer?  A teenager with LD issues, especially organization, is struggling. How much to intervene?  I don’t have a right answer.  I know that “always” isn’t right.  And I know that “never” isn’t right, either.  It’s the in-between that’s so confusing to me right now.

    I’ve had a jam-packed week of these quandaries.  I don’t know whether I’ve done a good job or whether I need to make a sizable contribution to the kids’ lifetime therapy funds.  Maybe I’ll never know.

    Sam overslept and missed his ride to school Tuesday.  By 1, when I hadn’t heard from him, I began to worry.  He didn’t answer the home phone or his cell.  Lily hadn’t seen him at school. Neither had the dean of students.  I walked home quickly from work to check on him.  I was out of breath as I opened the back door into the kitchen.  There was Sam, looking as if he’d been tossed around in the dryer half dozen times, eating an ice cream sandwich.  “What are you doing?” I barked.  “Eating an ice cream sandwich,” he blinked. Sam got himself to school in time to get homework assignments and learn his penance: a 9 AM Saturday study hall for two hours. And if he has any more unexcused absences, he could lose credit or even be suspended.  Mark and I disagreed in our approach but ultimately spoke in one voice.  We told Sam everybody makes mistakes, we still love him (this of course elicited much eye rolling), that we believe in him so much that we know he can handle the lumps, and that we wanted to hear his thoughts about making sure he didn’t oversleep again.  Told him he’d have to re-schedule the community service he had signed up for. And let him know he’d be responsible for paying for the cabs he’d need to get him from the T station to school and back. This proved to be a more difficult part of the deal.  He lost his wallet two days later.

    Lily, meanwhile, has been struggling with a science class at school.  Large volume of reading. Hundreds of terms to learn.  Dyslexia and ADD don’t make this easy, but Lily was bound and determined to manage the material.  And she did very well on the test.  I spoke with the head of the skills center about what I thought was an inappropriate load and approach, she encouraged me to speak to the teacher, so I asked to talk. Awful conversation ensued.  The teacher was defensive and angry with me for intervening.  I knew it was going to be a bad interaction when she asked, near the beginning of the call, “Don’t you want your daughter to learn human physiology?”  My whole reason for getting involved was to ask the teacher to make it possible for Lily to really learn.  Lily’s advisor got involved.  We talked on the phone.  That was another bad conversation. And the result was that the advisor recommended Lily move down a level next year in science, even though the previous three weeks she’d been badgering Lily to sign up for the higher level of science.  I got Lily to schedule an appointment to speak with her advisor one-on-one.  They did talk, but I don’t know that Lily felt much better in the end.  I had tried to help.  I made things worse.  Should I have said and done nothing at all?  Maybe.

    And then Max.  In love with power struggles.   Auditions are in a week for his jazz orchestra.  He is barely preparing.  When I came home yesterday to find him parked, at 4 PM, in front of XBox Live (Oh, how I hate you, XBox Live), I erupted.  He beats a path to the basement to get onto his gizmo, when the dog’s not walked, the dishwasher isn’t emptied, and his trumpet lies silent.  “I hate practicing,” he tells me.  “It’s not fun.”  I sputter about “fun.”  I remind him that he has a real gift on this instrument.  I ask him if he just figures it’s easier not to practice and conclude that he’s not good enough to give it is all and fail.  “I can’t even play the high notes,” he snarls.  “The whole thing is stupid.”  “Stupid” being the code word for a host of deep boy adolescent feelings, none of which is “stupid” in the least.  I am completely torn.  If I nag, will Max do even less?  If I say nothing, and he does nothing, is that irresponsible of me, since he has a hard time staying focused and dealing with long-term rewards?  If I try to engage him on what it means in life to tackle the “high notes,” will he put his fingers in his ears and hum? 

    I don’t want to helicopter parent.  I want my children to stand on their own two feet.  I want to believe in logical, natural consequences.  How much is LD?  How much is adolescence?  I try to decide on a case -to-case basis.  But sometimes I feel like I can’t find my way out of the forest bounded on one side by “always” and the other by “never.”

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  • Today marks the 22nd anniversary of my mother’s death.  She was diagnosed with two unrelated cancers in the space of five years.  Survived the first.  Was killed by the second. I was 24, she 56, when she died.  I have lived almost half my life without her.

    My mother was remarkable in many ways.  Her sense of wonder and probing intellect never failed.  She had a wicked tongue, which at times made her a source of wit and humor and at times caused others much misery.  She was confident that she was beautiful and had an appreciation of style, especially Modernism, that was unusual for her set in Fort Worth and then Dallas.  

    I’m typing this looking out a series of plate glass windows in a house Mark and I bought just this time last year.  It’s a 20+-year-old “Deck House,” modular and modern, conceived in the spirit of  Frank Lloyd Wright. My view: a salt marsh, full at high tide.  The sky is a bland grey.  The water the color of blue-green slate.  I fell in love with this house when I walked in.  Simply built.  Geometrically angular.  Put together to emphasize the view, the trees, the water.   It’s my mother’s aesthetic as much as my own.  

    I sometimes wonder if she would have approved of my having a “vacation home.”  When I was a girl, she would take me shopping.  I was small for my age.  Until I hit late adolescence, clothes didn’t fit well, and it was never easy finding things that didn’t hang, making me look like an underfed monkey. When we found a few things that fit, I would agonize…which to pick?  Her answer was always the same: “Get them both! Enjoy!  You look beautiful!”  And I would agonize more, thinking that two was too much, that I didn’t need two.  Maybe also that I didn’t deserve two.  Sometimes we bought two.  Often, I was too rigid to accept the gift.

    Mom, since I know you’re reading this, I’m missing you today.  I’m also celebrating the you that is in me, that made me appreciate the beauty of this place, that allowed me to splurge and have “two.”

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  • I was feeling exceptionally sorry for myself this morning.  Sad and dreary.  Low and teary.   I cancelled our Passover seder because Max has been sick.

    Max came home Monday afternoon saying he “felt like shit.”  Pale face.  Glassy eyes.  Wickedly sore throat, he reported.  A quick date with the thermometer revealed a fever of 101.6.   Sixteen year olds don’t generally run those kinds of fevers.  And Max hasn’t had more than an occasional cold all year.  He tucked himself into bed and slept, on and off, until morning.  

    When I woke Max yesterday, he still had the high fever and sore throat.  He’d had his tonsils out when he was 7, but I knew he could still have strep throat.  And given that we were preparing to host a modestly sized seder at which we’d have two guests at opposite ends of the life spectrum, I figured I ought to have him tested.  The receptionist at our pediatrician’s office took pity on me and squeezed in Max so that I could still get to work, albeit a little late.  The pediatrician confirmed the fever, ogled the scarlet throat, and did a quick strep test. It was negative, so she sent out for a long test.  For now, the verdict is that the bug is viral.

    With a heavy heart, I called all of my seder guests and warned them off.  Could not in good faith expose a 3 1/2-week-old baby or an 88-year-old woman to a high fever.  I knew other guests would be visiting elderly relatives over the weekend, and so I alerted them, as well.  

    I look forward to seder with absolutely no ambivalence.  The message of Passover, of freedom, always resonates.  We celebrate spring.  The haggadah offers a chance to retell one of the great stories of the Western world.   We eat the soul of soul food.  And we gather with friends whom I adore.   Since Mark isn’t Jewish, it’s mattered to me to celebrate with others of the tribe who have deep connections to the rituals that make up the chord of my own life.    

    So, to cancel seder brought me a sense of loneliness and loss that I can’t quantify.  I woke early this morning and felt disconnected, dejected.  Mark had tried cheering me last night.  “We’ll have seder just the five of us.  It’s still a seder.”  I couldn’t get there.  The work of getting ready seemed unsatisfying, even insurmountable.

    I sat down to work for a few hours this morning but couldn’t settle. My  mind wandered to mundane tasks.  I sent a text message to Max’s cell phone to remind him to register for orchestra auditions.  At about 10 my cell phone buzzed.  Max had texted back: “ok.  are you at home.”  

    I replied: “Yes.  Are you awake?”  

    “no im asleep but still texting you.”  

    “That’s what I thought.”

    “do you want to go to zaftigs.  i dont have a fever.”

    “Come down and make eye contact, please.”

    Down he came, still pale, but not looking like death.  If he wanted to go out to eat,  would he agree to change over the kitchen for pesach?  Nope.  We sparred for a bit.  Max said he’d help bag all the forbidden foods if I’d do it with him.  We agreed that we would work in tandem after our meal, but that Max would have to come along on a few errands, as well.

    Max has mostly been snarling at me of late.  He and I, we haven’t been able to make it to our regularly scheduled Tuesday morning breakfasts at Zaftig’s, a favorite local deli, for almost a month.  So we started our late breakfast in the restaurant this morning not sure what to say to each other.  Where was the thread of our conversation?  After a few false steps, we settled in. Sports, video games, my teaching, stories of one of the guys in a documentary I worked on last fall, politics and military actions in Africa, and so on.  What a gift to exchange information without emotional charge.  Just to be sitting at the same table, breathing the same air, and not fighting….

    Max came with me as I returned library books.  He strode along, he more than half a foot taller than I, as we stopped by the liquor store for a bottle of Manischewitz.  And when we came home, he pulled out plastic bags and the vacuum cleaner so that we could make quick work of the cupboards.  Without complaint, he walked garbage bags filled with pasta and flour into the basement and brought up grocery bags filled with matzoh, potato chips, toasty coconut marshmallows, and fruit slices.  We finished the job together with nary a cross word.

    I hate to type this, but the glands in my neck are tender, and I’m trying to decide if I have a scratchy throat.  This virus — a plague not on the list afflicting the Egyptians — may be a blessing in disguise.  I can’t say what it will feel like tonight as we sit down with haggadahs.  I’m grateful to have had a few hours with Max today, who, had he been healthy, would have spent his day at school.  

    And I have an idea for the Afikomen tonight.  I’m going to make the kids hide it this year for Mark and me to find.  And everybody — all five of us — will get a prize.

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  • Two articles in this morning’s newspapers speak to one another — but they don’t know it.  

    One is a fascinating piece in today’s Boston Globe focusing on the genetics of an aggressive form of colon cancer. 

    Another in The New York Times’ Business section counsels readers how to get health insurance when they’re already dealing with pre-existing conditions.  

    The Globe piece highlights genetic research linking descendants of one almost-Mayflower family who suffer from a deadly form of colon cancer.  Scientists combed genealogical archives to piece together the puzzle linking families in New York and Utah.  Now that they’ve isolated the genetic mutation giving carriers a 2 in 3 lifetime chance of developing the cancer, scientists can offer aggressive screening practices in hopes of helping carriers catch nascent tumors before they’ve spread.

    The Times piece counsels readers how best to hang onto coverage when they have what insurers euphemistically call “pre-existing conditions,” or medical conditions that existed before application for health insurance.  The definition includes conditions for which patients have sought coverage in the previous six months.  Insurance companies in 44 states may either deny coverage or charge more to those deemed to have a “pre-existing condition” at the time they apply for health insurance.

    Most insurance companies — but not all – can’t exclude based on the results of genetic testing. They can, however, deny coverage if applicants actually suffer from the disease for which they’ve been tested.  The thinking, apparently, is that insurance companies don’t want people waiting to sign up for policies after they’ve already become ill. That’s too expensive.  Instead, they want healthy people in their pools.  They are insuring against the potential for future illness.

    I suppose some of this makes sense if you squint really hard.  Perhaps these kinds of rules would have been appropriate in the 1930s, when Blue Cross (hospital insurance) and Blue Shield (physicians’ services) were founded.  American health costs were relatively low.  There was no such thing as genetic medicine.  I’m not sure there even was such a thing as a pre-existing condition back then. (I don’t know when insurance companies formulated the concept of “pre-existing conditions” and couldn’t find a history on the web — would be grateful to learn more from those with answers.)

    Without a doubt, though, the concept of “pre-existing conditions” makes no sense in the twenty-first century, when advances in genetics change our understanding of health. If, for instance, a person is battling invasive colon cancer, carries the colon cancer mutation identified in the Globe article, and has no health insurance, how is it possible to pinpoint a time when she or he would not have had a pre-existing condition?  The genetic abnormality was there, lying in wait, from the moment of conception. 

    I guess this begs an epistemological question.  With many types of illness, knowing what we know about mutations and genetic predisposition, is it still possible to demarcate a before and after with certainty?  Is there just one, long, unbroken line of “condition” stretching back to the original mutant?  If so, how can insurers continue to craft policy based on the concept of “pre-existing” conditions?

    For me, this isn’t just an exercise in hypothetical thinking.  I carry the BRCA-2 mutation, conferring about an 80% lifetime risk of developing breast cancer.  I’ve reduced my risk with surgery, but with three teenagers, my worry is not over.  It seems enough to worry about whether or not my kids will be carriers.  It is almost unbearable to have to worry if they will be able to get health insurance because of a genetic predisposition or pre-condition.  I want the Obama administration to bring insurance companies to their knees on this one: no more language about pre-existing conditions when it comes to coverage.  Of course, if we have universal coverage, none of us will need to worry about this concept again.  

    I feel like a killjoy when I talk about possible career paths and jobs with my kids.  “Whatever you pick,” I tell them, “just make sure it comes with health insurance.”  What a terrible way to talk with young people on the brink of hatching plans and dreaming dreams.

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