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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The Long Arms of Childhood Illness

Affordable care act calculator

If you saw my two daughters today, you would never know that some medical insurance companies would historically have considered them uninsurable.

My youngest daughter’s history of illness has been documented in my blog and detailed in articles in a variety of publications. From infant reflux to laryngomalacia to a congenital heart defect, from eosinophilic esophagitis to chylothorax, she has been under general anesthesia 17 times in her eleven years. Though the first nine were full of medical intervention, the last two following her final surgery have been nothing short of miraculous for her. She now eats well, has full energy, is growing, and leads a completely normal life. She has a pediatrician, a dentist, and an orthodontist — a far cry from the pit crew of specialists she used to see.

Even so, without the Affordable Care Act, she could be denied health insurance for the rest of her life. Continue Reading…

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My Bruised Birthday Heart

My daughter Sammi turns eleven tomorrow, and when I wake up, I will immediately start down the same well-trod path of many mothers: I will relive the day of her birth.

debibirthMy realization of this tradition began with my own mother retelling the story of my entry into the world, something she did with diminishing success over the years. As a child, I remember her tale of the planned induction beginning with the Chinese meal she ate the night before. She always smiled and rolled her eyes in mock-overwhelm as she described the obstetrician who lived across the street from the hospital and who padded back and forth all night to check on her as she labored, wearing his bathrobe. She always laughed when she remembered the paperboy poking his head in the door to sell her a paper a few hours after I was born, only to do a double-take at her feet still up in stirrups as the nurse tended to her underside. As the years have gone on, my mother muses over all these details less and less. After more than forty years of remembering, there are now some pieces of the story that I remember better than she does, just from the repetition.

My oldest child — my daughter Ronni — came into the world memorably, and I begin the memories of her birth more than a day before her birthday. I can recount it by the hours, still, fourteen years later. Although much was painful, and much was frightening, I recall the event with joy and celebration. I labored, I pushed, I struggled, and eventually I felt the indescribable sensation of my child passing through the space between my hip bones, my pelvis, and into the world. The beauty of it brings tears to my eyes, still. I can access those emotions easily, quickly, and feel washed in love and wholeness, knowing as I do now that it was the beginning of a relationship marked by tenderness and discovery.

Sammi’s birth is so much harder to retell.

Sammi 2 days

She was born a week late by emergency c-section, inexplicably tiny and riddled with health issues. For years after that day, there was seldom a break from worrying about her, seldom a moment when my body wasn’t called on to continue carrying her somehow — to nurse her, hold her, rock her, drive her to the hospital, drive her to doctors’ offices, administer medicine, hold a breathing mask over her face in the middle of the night, pull underwear up her legs under a hospital gown. I was constantly peering at her ears, her mouth, her nose, checking to see if her ribs were protruding more than last week, literally and figuratively weighing her. I fed her with the intensity of a brand new mother, always.

In many ways, Sammi’s birth — and my labor — went on for nine years. It started on the day of her birth and stopped one beautiful day in October of 2014 when her good health shone clearly and she was, for me, finally born. Just like other labors, in those nine years were moments of pain I didn’t think I was really able to bear and moments of rest when I gathered strength for the surges that were coming. Just like other labors, sometimes I begged anyone nearby for help and sometimes I silently clenched my jaw and squeezed the hand of my husband alone. Just like other labors, I was often selfish and believed the struggle was mine alone, and there were other times when I remembered that Sammi was trying just as hard as she could and that my husband was watching both of us, helpless to do more than offer comfort.

And just like other labors, it finally ended.

Remembering the day she was born is hard. It was the beginning of an uphill climb, and when you climb a mountain, you celebrate the summit with far more joy than you recall the moment you took the first step. There is too much journey in the middle. Still, I know that the day Sammi came into this world is important. It did not have the funny cast of characters my mother remembers from my birth, and it did not include the stirring, empowering moment of my older daughter’s birth, but it was the first hard leg of a journey that we both weathered in the end. What it lacks in positive imagery, I suppose it makes up for in the stuff of character-building.

I love Sammi with a fierceness I cannot describe, with a quality different — though not more or less — than what accompanies my love for Ronni. Sammi and I were in labor together for years. She may grow to forget as much of it as my mother now forgets about my birth, but I will never forget how our bodies were linked, how we strained, and how when it was done, there we were: born.

born

Happy birthday, Sammi. I’m achingly grateful that you are here.

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Let Me Take You There

doorA hundred lifetimes ago, in undergraduate and graduate writing workshops, I studied the ways that tense and perspective change the tone of a story. When it comes to my emotions and my words, I find that tense and perspective are the best tools I have for bringing readers into the story quickly. For example: What happens when I tell this in the past tense — “My daughter could barely breathe” — versus when I tell it in present tense: “My daughter can barely breathe”? What happens when I tell a story in first person (“I was frightened“) versus when I tell them the story in second person (“You will be far colder than one would expect“)?

For me, past tense offers distance. As I write in past tense, I feel separated from the events. I can write without getting too caught up in the moment as I experienced it in real time. I am calm, almost clinical in my descriptions. It reminds me of the unwavering steadiness I’ve been able to construct in moments of real trauma by simply breathing deeply, disassociating from my emotions, and behaving like a soldier on a mission. In past tense, I am a reporter, and even when I report on the raw and furious emotions in our family’s history, it is with a detached, analytical eye.

Present tense is where I get you invested. I am here, in the sun-filled living room, with the baby in my lap who is struggling to breathe. Or, I am lying on the floor of my basement in the cold dark, and I think, for a moment, that I can hear my screaming daughter two floors above me as I sink into the drugged sleep of a woman past the edge of exhaustion. You are watching me in real time. Neither of us knows what comes next. We are both — writer and reader — in my mystery. Continue Reading…

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