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 Teal Pumpkin Project: Because We Remember

teal-pumpkin-remember

When my daughter Sammi was five, Halloween could have been just horrible.

Just a few months earlier, Sammi had been diagnosed with a disease called eosinophilic esophagitis. An inflammatory condition of the esophagus — the tube that runs between the mouth and the stomach — it is poorly understood and responds to only a handful of imperfect treatments. The treatment we chose for her was called the Six Food Elimination Diet, a set of food restrictions that required her to avoid anything with dairy, soy, eggs, nuts, fish, or wheat. We were already vegetarians; this was a huge lifestyle change for our entire family.

Sammi had just started kindergarten, learning to read and write and follow instructions in a classroom that necessarily had been forced to eliminate Play-Doh (wheat) and to keep a small box with “Sammi-safe” snacks available for the days — most days — when she could not eat the shared snacks brought by her classmates. It was a rough start. And then, it was Halloween.

On this particular diet, the only kind of typical Halloween candy she could eat were Smarties and Dum-Dums. All other candies contained a forbidden item or were produced on equipment that might be shared with a forbidden item, and so I tried to figure out how to save Halloween. How would it be to walk from house to house and say, over and over again, “No, you can’t eat that one. No, you can’t eat that one either. No, no, no”?

Finally, I decided to solve our problem with a combination of money and magic. 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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Three Days of Reckoning

stroller

When my now-eleven-year-old-daughter Sammi was still in my belly, I had a dream: a thin girl with straight, dirty blond hair and glasses, about nine or ten, was pushing a stroller at the zoo. I couldn’t see who was in the stroller, but something told me that pushing this stroller was very important for that young girl. Standing in place, her thin legs visible under short-shorts, she pushed her glasses above her eyes and wiped the bridge of her nose, then leaned forward, pressing her arms out and putting all her weight into the stroller. It rolled forward, and a gaggle of children I couldn’t quite make out ran and pranced around her as they moved toward the nearest animal exhibit.

That’s all the dream was — a girl I’d never seen pushing a stroller — and, at the time, I knew it was important but couldn’t quite figure out how. After all, I didn’t know I was having a second girl, and this baby in my belly had a round, dimpled older sister with a head full of huge dark curls.

But now, this week, I glimpsed a shadow of this image in real life. Sammi stood in a paper gown, waiting for the pediatrician. She had tried sitting on my lap in the chair, but her legs are now finally long and gangly enough that this is uncomfortable for both of us. I offered her the chair, but it was cold against her bare thighs, and she wanted to avoid the examining table until she had no other choice. So, she stood there: petite but solid, the plastic belt of the gown forcing the beginnings of a woman’s figure into my imagination, and I thought to myself: I really never pictured her at this age. Continue Reading…

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