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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Heart Exchange

child running

There’s a saying about becoming a mother that, for all its overuse and cliche, is as true as anything I’ve ever heard. It explains perfectly my own experience of mothering, one I’ve tried to capture and describe in other ways only to come back, finally, to this beautiful quote attributed to author Elizabeth Stone. In full, it reads:

Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.

Of course, it’s not exactly my heart that runs off each day with my children. Rather, it is an enormous portion of my emotional power, vulnerability, and grounding to the corporeal world that surrounds each of them when we part. There is a piece of my intention for each day that I lend to them, a chunk of my personal energy that I gladly give away in service to whatever they need. Shorthand: heart.

That floating bit of my spirit is something I trust to do what I can’t, shouldn’t, mustn’t in a world they need to learn for themselves. Like a blessing, I picture it keeping them safe. My promise to that end — the heart that goes walking around outside my body — is that the gift of it is irrevocable. I’ve told my daughters over and over that there is nothing they can do to make me stop loving them. They’ve sometimes tested me on this, asking what if I do this or what if I do that, but I always answer, “I will always love you, even if I don’t love the things you do.”

Even if I die? they have never asked, but I do know the answer. Yes, even if you die. Continue Reading…

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