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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The Boy in the Next Bed

ricardo

When my daughter Sammi was just over a year old, she had surgery to repair a congenital heart defect. After the worst of it was over and she was nearly — but not quite — ready to go home, they moved us from the ICU to the general ward of the children’s hospital.

In the ICU, each child has her own tiny room — about twice as wide as a twin bed — with a glass partition at the end of it. On the other side of that partition sits the child’s personal nurse, up on a stool next to a computer that monitors a host of vital signs and other measurements. That nurse has no other patients. When shifts change, two nurses fill that tiny space for thirty minutes, conferring and learning so that the new nurse has all the information necessary to sit vigil for the next shift.

In the general wards, the supervision is quite different. So are the rooms. When we got to the door, I went in and dropped all our stuff unceremoniously on the nearest chair, then stopped in my tracks.

“There’s someone already in this room,” I whispered to the nurse, pointing at the curtain and then at the loud tv tuned to cartoons. Continue Reading…

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In Defense of Compassion

leaves

Most of my adult life has been propelled, in one way or another, by compassion.

As someone who began making a career in internet technology during the dot-com boom, I was always uneasy with what on earth I was doing by pushing pixels across a screen for a living. Who did I help, making web sites to prop up the egos of CEOs and corporate shareholders? It took me years to press my way into service to something with more value to humanity. By 1999, I was using the pixel-pushing skills I’d learned to support the voices of non-profit organizations. Necessarily, the budgets and the ability to innovate came later to these organizations. I could not charge them money they did not have; it was not greed that motivated their protest. My prices as a freelancer changed to reflect this. I adjusted and leaned toward compassion.

Then, when my children were born in the early 2000s, my entire life became an exercise in compassionate listening. A baby cried, unable to manage her emotions or get her needs met in any other way, and I held her. I sang to her, I soothed her. It seemed unconscionable to behave any other way. Another baby was born, this time sick and in pain, and she cried even more and for far longer than the first one had. My compassion was called upon constantly, to weigh my own needs against hers and to ask myself whether she had any other means of expressing her misery, any reserves of patience or space in her brain to make the developmental leaps a child with a full stomach and no pain can make. She did not, much of the time, and I needed to dig deep to find my own untapped wells of compassion. She needed every drop I had. Continue Reading…

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Figure This Out, Everyone

affordable care actThe results of the U.S. presidential election are not what I had been hoping they would be.

Although many issues were important to me — and my opinions were represented well across several candidates — one that made me especially motivated was the Affordable Care Act. Between my two daughters and I, we have a host of ailments — historical and current — which would have qualified, before the ACA, as “pre-existing conditions.” I have one daughter who was born with a congenital heart defect that affected her respiratory and digestive health. I have another daughter with a kidney/ureter condition. I have asthma and a severe food allergy. The ACA included within it a protection that kept insurance companies from denying health care because of a pre-existing condition, but President-Elect Donald J. Trump has been quite public about his disdain for the Affordable Care Act, also known as Obamacare. Just last week, he was quoted as saying that Obamacare was a “horror” he would “repeal and replace.”

If we are to take him at his word, our next task is to pray — prayer through hoping, emailing, calling, writing, and traditional wailing prayer — that this most important protection made available through the Affordable Care Act remains in effect in whatever health plan replaces it. Even terrible health insurance is better than no health insurance, a reality many who never had insurance until now understand all too well.

I haven’t slept much. Forgive my lack of eloquence: this scares me.  Continue Reading…

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Summer Lunch, “Free”

For many mothers of school-aged children, suddenly having to create on-demand, in-the-moment lunches during the summer is a rude awakening after the school year’s relative ease in school-supplied lunch or the mindless morning drop of sandwich/chips/apple/cookie into the lunchbox. Because of the economic diversity of my town, I know that the added complication of having to stop a day in the middle to prepare a meal still pales in complexity to the added stress of not having anything with which to prepare that meal. Some 60% or more of the children in our neighborhood elementary school qualify for free or reduced-price school lunch. When the summer arrives, all of those parents lose a third of their child’s weekday allotment of sustenance.

I am extra aware of the heartbreak of this situation after the summer of my daughter Sammi’s diagnosis of eosinophilic esophagitis. To calm the raging white blood cells in her esophagus, a progressive elimination diet had been prescribed for her. From her already vegetarian diet, we had to remove dairy, soy, egg, nuts, and wheat, and any foods prepared on surfaces that touched those forbidden items. In early July of 2010, I pushed carts through the Whole Foods grocery store, then the local multi-ethnic grocery store, then a smaller health-food store, attempting to put together a palatable and nutritious set of meals for her and us, who would be journeying through it with her so she wouldn’t feel alone.

Here’s how it went: I picked up an item — say, a cracker, labeled “gluten free” and “vegan,” which covered the dairy, egg, and wheat portions of the restrictions. Scanning the ingredient list, I searched for the presence of nuts, quite a common replacement for wheat in many gluten-free products. Finding none, I read even more carefully for soy; since Sammi only had to avoid the protein and not the oil or starch, she could still eat a food that contained soy lecithin or soybean oil. In the first weeks, I would allow myself to get excited if my reading had lasted this long without finding an offender, only to be crushed when, at the end of the ingredient list, I found the poisonous statement that made me shove the box angrily back on the shelf: this product is produced on shared equipment with products containing dairy.

Or nuts.

Or egg.

The first week’s grocery excursions cost us over $400, which bought us such strange things as wide variety of gluten-free flours (chickpea, tapioca, brown rice), hemp milk, rice pasta, coconut yogurt. To their odd and unfamiliar ranks I discovered I could add some common, cheap, everyday items that fit our needs and, when I did, I nearly wept with joy despite their chemical makeup being nothing like our previous diet. Post Fruity Pebbles! Betty Crocker Fruit Snacks! Lays Stax Potato Chips! Even so, the price of the diet was staggering, both in direct cost for ingredients and in the time it me took to shop and cook.

One morning about a week into this overwhelming experiment, I found myself near tears trying to imagine a lunch that would be appetizing for my daughters and a child who ate with us three times a week while her mother was busy. Carefully, I spread sunflower seed butter on thin, dense slices of a strange brown bread that had met our criteria. I added fruit in the shape of a face. I spread potato chips — also fancy and unusual — around the edges.lunch

It was the best I could do. My children, having sat through the difficult conversations and understanding the expectations and the experimentation we’d all have to endure over the coming months, gamely picked up their lunch and gave it an exploratory nibble.

The visiting friend, however, was not nearly so accommodating. “Oh,” she said, looking at the plate with a sneer. “My mom should have told you. I only eat white bread.”

I wish I could write here that I was understanding. I wish I could write that I brought her into the kitchen and made her a PB&J on white bread. Unfortunately, there was no food in my kitchen that wasn’t safe for Sammi. I had spent an hour scheming and hoping to build that strange little plate. I lost my temper with that child, telling her she could eat it or go hungry, leaving my children to manage her disappointment and confusion. I walked out of the room, locked myself in the bathoom, and pressed my head into the tiled wall, panting with anger.

Now, years later, I regret my behavior largely because I realize one of the reasons that parent may have left her with us for the day was that she may have been one of those children left without school lunch — and as a result, perhaps without any lunch — in the summer. I think about our astronomical grocery bills during that phase of the diet and wonder what would happen to the children like her if they’d had Sammi’s diagnosis. What on earth would a parent on a limited income do with orders like the ones we were following? I shudder to think of it.

Sammi’s lunch was dairy-free, egg-free, nut-free, soy-free, and wheat-free, but it sure wasn’t cost-free.

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