Just ONE of the Faces of the Health Care Crisis

For a limited time, I'm using her real name.

Some of you may know that my daughter, Virginia Grace, is losing her health insurance, most likely on Tuesday. We have been through so many hoops with TN Care, SSI, TN Cover Kids, and tried everything we know to do to help insure that she's insured.

A little background on Virginia Grace: she was born with a cranio-facial disorder called Pierre Robin sequence, and has been diagnosed since then with many many disorders that have required and will require more than a dozen surgeries, a tracheostomy, a gastronomy tube, through which she gets 100% of her nutrition (medical nutrition), speech therapy, occupational therapy, and so on. It was discovered last week that she also has a very very rare genetic mutation, one that we (and her geneticists) are just beginning to learn about. She will require surgery within the next few months to repair a fistula in her neck. She is one big pre-existing condition. (To read more of our story, click here.)

We are losing her health coverage because the state of Tennessee recently won a 20+ year court battle which allows them to push Medicaid-eligible people off of the TN Care rolls. Because we adopted Virginia Grace (instead of permanently leaving her in the foster care system, a situation which would have had the state paying at least double what they're paying now), she no longer receives an SSI check, though she is medically qualified as disabled. Because she does not receive an SSI check, Tennessee is no longer required to cover her.

We have appealed both the TN Care and the SSI, and are waiting for the appeals to go through. The TN Care appeal is on Tuesday, though the SSI determination may be months coming; the former is dependent upon the latter. Between the time that TN Care terminates her insurance (she was actually terminated on February 25, after only two weeks notice), and SSI does or does not deny her SSI, we are in a lurch. Because we elected to keep her coverage during the appeal process (with the caveat that we will have to pay back all of the many expenses accrued in the interim), we were denied by Cover Kids, the organization which is supposed to be the next step for her (with significantly decreased coverage and SIGNIFICANTLY increased out of pocket). Our private insurance would cost us almost $1000/month to add her. We simply cannot afford that.

Why am I telling you all this? I know that many of my friends come from disparate political positions, and I know that there are no easy answers to this problem, for anyone affected. But what I do believe is that this isn't just about "pushing through tort reform," and "allowing businesses to reward workers who have a healthy lifestyle," or "being able to purchase health insurance across state lines." I also believe that small businesses cannot bear the burden of the costs. I frankly don't know what the answer is. But what I'm asking, or hoping, is that people talk about it, think about it, and when people talk about it they think of Virginia Grace.

Please feel free to share our story . . . because we're not the only ones.

Click HERE to tell YOUR congressperson who you're inspired by.

Callicott's Rainbow by Wendy Sumner Winter - flashquake Nonfiction - Volume 9, Issue 3 - Spring 2010

Callicott's Rainbow by Wendy Sumner Winter - flashquake Nonfiction - Volume 9, Issue 3 - Spring 2010

I heard they were painting over Callicott's rainbow. Things happen that way, I suppose. Room must be made for fresh canvases. Cracking paint gives way to neon lights. Names are changed; and history is covered with fresh sod.

I never knew about this place before I knew you. Like you, it had been there all along, something I could have seen if I'd only opened my eyes, if only I'd traveled out of whitewashed East Memphis to gritty Midtown.

Now, its history has merged with my own. I've danced in front of this stage where Elvis swiveled his hips, decades before our births and tripped acid where my parents romped to the sounds of the Allman Brothers. Now, I hear, they're tearing down The Shell.

I had to drive by today — just in case I don't get to see it again. I wanted to concretize it in my memory, to encounter it empty and let my mind fill it as it willed. It makes me sad to think about it being gone, or even just modified, as if the changes might have some import, some impact on who we are. On what we mean.

As I slowed down and looked, my mind flashed back to the day we met. Here. Under the rainbow. I can see the sunlight oozing through your copper curls, the tips of your fingers as they hold a cigarette to your lips, and your eyes squinting behind the swirls of smoke billowing out of your nose — the breath of a bull.

I remember. We walked in the moonlight to the golf course, following the narrow dirt path that ran alongside backstage. I raised my peasant blouse to show you what was underneath, the skin of my breasts a white butterfly reaching toward the moon. I didn't know any other way to capture you, didn't know that you'd been mine since we were children running around the maypole at my parents' house, since the moment our hands touched, electrifying you into an awareness of girls. Of me in particular.

That night I danced in front of you and we kissed. It was both hot and cold, new and, somehow, not: like we'd been there before and always, and this was just a return.

We've returned, year after year, on that same day, Earth Day, to dance under this disappearing rainbow, to tell each other our story, our history. We've sat on the splintery benches, unmowed grass tickling our calves, listening to our own generation's contribution to history. Jim Dickinson passing the baton to his boys; FreeWorld bending the grooves of Santana. We've slapped our knees with the rhythms of drum circles, Sunday afternoons in the park.

My car idling behind me, I lean against the rickety chain-linked fence. To my right a fire pit is dug out under a low-branched tree, where hippies cook vegan burgers and sell granola from tattered backpacks. The grass grows thin around the spot, trampled for so long by so many black-bottomed feet. We've watched our friends become parents, creating tiny versions of themselves: tangled hair, patchouli-scented tie-dyes draping off their tiny shoulders and dragging in the dust or mud under the tree.

This place seems holy to me. And in this moment, quiet and still, it also seems somehow sad. And I feel pushed out of Eden. I wonder what will happen when our totem goes white, when the story wears thin from too much repetition? Does that happen?

I turn to leave, but stop, take my shoes off and feel the coolness of the ground. This ground will always be here. I and drive home now, where you've begun watering the grass, my flowers, fed the dogs and laid out the backgammon game on the front porch. You hand me my cocktail, kiss my neck, and I tell you the story of today.