I Don’t Want to Write About Politics

politics-is-everythingI don’t want to write about politics, but every piece of my life is controlled by it.

I woke up Friday morning and realized my high-school-aged daughter had slept through her alarm. Her high school offers tremendous opportunities for academic and extra-curricular rigor, but if she wants to be a member of the honors society (a prerequisite for her preferred college admissions), she also has to do community service and show some proof of outside-of-school leadership. Thursday, she went to school all day, helped teach at her religious school, and then attended a meeting of a task force at our synagogue, returning home at 8:30pm to begin her homework. Educational policy has set this system up for kids like my daughter, a hamster wheel of achievement that burns kids out by the end of their senior year. Politics made her exhausted today.

When I came downstairs Friday morning, my younger daughter sat at the kitchen counter watching YouTube videos and eating breakfast. Though she seems healthy now, the years of worrying about her growth curve make my furtive glances at her food choices an instinct. I note the volume and count the calories in my head, inventory her planned activity for the day, and check myself; she’s fine. A part of her history stems from misdiagnosis her doctors made and for which they never apologized, a reality that I suspect comes from their fear of lawsuit. That misdiagnosis will stay on her medical chart, making her vulnerable forever to the caprices of health care legislation. My 11-year-old may be doomed to a life of wildly overpriced health insurance. Politics will someday make her — or keep her — sick. Continue Reading…

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Meeting the Multitudes

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Last week, I was trying to pick up my older daughter from school a little bit early. She’s a freshman, so this is our first year as parents at the high school and I didn’t know the procedure for early dismissal. I approached the woman at the desk in the security office with my driver’s license and told her my daughter’s name.

“Did you call the attendance office?” she asked.

I hadn’t. Did I need to?

“Ma’am, you can’t just walk in here and take your kid home whenever you want! You have to call ahead so she can get a pass!”

I let that sink in for only a few seconds before I realized that, effectively, she was telling me that she would not release my daughter to me. I tried reasoning; I’m her mother, I’ll follow the procedure next time, she had a doctor’s appointment, I’ll call attendance right now. Nothing worked. After a series of more and more irritating exchanges — during which I got cranky and then apologetic and then cranky again — she told me I could wait outside for my daughter, who would be dismissed with the rest of the school in 16 minutes.

I stomped and huffed and paced outside in the snow, called and rescheduled the appointment, and composed an email to the school administration in my head. As I began to recognize the feeling underlying all of it as panic, I traced it back as far as I could. You can’t have your daughter, I heard in my head. You can’t have her. It reminded me of her early days in the hospital nursery under bilirubin lights for jaundice, me forbidden to take her out of her glowing bed for more than a few minutes at a time. It reminded me of being in the hospital after her little sister’s birth, still numb from my c-section, realizing that I could not move, not even to rescue my big girl from anything that might befall her before the anesthesia wore off. The feeling of helplessness even extended to generational memory from the holocaust, stories of family who had lost parents and siblings in the horrors of concentration camps or Einsatzgruppen killings in the forest. You can’t have your daughter was a triggering sentence for me.

Realizing that I was operating with the deeper, more primitive part of my mind helped a little — it gave me reason for my feelings of panic over a situation which seemed otherwise just annoying and inconvenient. I had only to wait 16 minutes, and my daughter would be there. Still, the story I carried with me — the story of you can’t have your daughter — was powerful. It informed all of my behavior that day. Continue Reading…

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They Called Me Again

I was watching tv with my family over dinner on Martin Luther King, Jr. Day last week when the phone rang. The caller ID told me that it was the children’s hospital where my daughter spent years being treated for issues stemming from a congenital heart defect (even though not all of her doctors realized it). We’d not had a call from that hospital in over a year.

“Hello, is this the parent of Samara Lewis?” someone asked.

I walked several rooms away from my family and answered, “Yes, who is this?”

“Thank you ma’am, this is the gastroenterology practice at [hospital name]. We’re just calling to discuss the socioeconomic impact of Samara’s treatment for eosinophilic esophagitis. Do you have time for a quick survey?”

I paused. I paused for so long that the woman asked if I was still there. I paused long enough to talk myself through the waves of anger, heartache, and indignance that crashed over me as I pondered the audacity of that question. I paused long enough to think about how I’d like to answer that question. Continue Reading…

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Breathing Fine

winterskyYesterday, I drove through salt-bleached, frozen streets on my way to retrieve my daughter and her friends from school. The temperatures here have been dangerously cold; I am regularly rescuing my children from the frigid walk home.

As I drove my empty car past the grey of filthy alley snow under a colorless sky, I half-listened to the music playing through my speakers. I believe in the Oracle of the Random Playlist, my name for the theory that whatever plays when I hit “random” is a coded message from the universe. Several fiddle tunes and a standup comedy bit from Ellen DeGenerous later, I heard the opening piano chords from John Legend’s song “All of Me.”

I’m not much of a pop music fan, as any of my friends can tell you, but parenting brings surprising gifts. Beginning with Owl City when my older daughter was in elementary school, I found myself reluctantly led back to paying attention to the radio when my daughters started singing it at home. In 2014, as my husband and I waited for months to tell our younger daughter Sammi that she would soon be facing a second cardiac surgery, she came home from her school’s chorus practice one day singing “All of Me.” I listened from the front seat as she hummed, then asked her what she was singing. She opened her mouth and sang,

What’s going on in that beautiful mind?
I’m on your magical mystery ride,
and I’m so dizzy,
don’t know what hit me,
but I’ll be all right…

“That’s so pretty, sweetheart!,” I said then. “What’s it called?”

Her big sister told me the name of the song, and I looked it up later. I remember sitting crosslegged on the floor of my kitchen, listening to the song online, and feeling the earth underneath me roll and undulate like waves. It felt personal. It felt cruelly perfect. Continue Reading…

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Huddle Up

winter-1Every day, there’s something new happening that scares me.

In fact, every day, there are multiple things — here in the US, and other places in the world. It feels to me like we are balanced on a saucer held on the index finger of someone walking barefoot across a sea of marbles, and — moment by moment — people are plummeting over the edge. I wake up from my spot nearer to the middle of that saucer than 90% of the people on this planet, and I look at the news and try to decide where I will throw my tiny threads of possibility today.

It feels desperate. On the worst days, it feels ridiculous.

As this year ends, I am reminded of the years that my friends and family made contributions to causes that would likely never, ever affect them. Though I tried not to be a broken record, I did occasionally reach out to friends and family via social media and other means to support the charities working on research, advocacy and support for the conditions with which my daughter suffered. When her primary diagnosis was eosinophilic esophagitis, I asked for support for APFED, The American Partnership for Eosinophilic Disorders. After she had her second cardiac surgery, we suggested people make donations to Mended Little Hearts. These were good causes — they are good causes, and I’ll continue to support them even though my daughter’s health is no longer affected by these conditions — but the people we asked to contribute or share stories or raise awareness were likely largely oblivious to their existence before my daughter’s diagnosis awakened them.

In the last few weeks, the pitched voices of a number of needs in the wider world and in my community seem to have amplified. Part of that is due to #GivingTuesday, a campaign to encourage charitable giving after the materialistic trifecta of Black Friday, Small Business Saturday, and Cyber Monday. Part of the onslaught of need has also come out of the recent US presidential election, which has given rise to a level of societal panic I can’t remember seeing ever before in my adult life. Causes about which I care deeply — civil rights, women’s health, the social safety net, immigration and international diplomacy among others — seem to need support more than ever. I find my personal politics pinpointed perfectly as my friends add me to Facebook groups daily, my email inbox fills with requests, and every news story seems to offer me an action item.

This holiday season, there are so many bigger needs than those that affect my family. This holiday season, the needs affect my whole world.

I’m doing a few things differently this season, and while I don’t dare tell anyone reading this that my plan should be theirs, I’m finding it useful to think about what I can do to help in three ways:

  1. Actions that help the world
  2. Actions that help my community
  3. Actions that help my family

Continue Reading…

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