Janine Urbaniak Reid, a writer in the San Francisco Bay Area, is working on a memoir about her son’s diagnosis. She is on Twitter: @J9marier.
House Speaker John Boehner and his tea party friends shut down the U.S. government because of people like me. I am the mother of an insurance hog, someone who could have blown through his lifetime limit of health coverage by the time he was 14. My son has managed to survive despite seemingly insurmountable challenges, and he wears his preexisting condition like a Super Bowl ring.
Mason, now 16, was probably born with his brain tumor. We discovered it six years ago. Biopsies showed a slow-growing mass, which was the good news. The bad news was that the tumor could not be removed because it had grown around essential structures in his brain. Under the care of some of the country’s finest specialists, Mason had frequent scans. There was little we could do between tests but hope for the best. Like other children his age, Mason played basketball, argued with his siblings and avoided cleaning his bedroom. He managed to undergo chemotherapy for eight months without getting too sick. He insisted on finding ways to laugh, saying things like: “I have brain cancer. What’s your problem?” It was an uneasy peace — until the tumor ruptured in December 2010, three years after his initial diagnosis, and Mason suffered a massive cerebral hemorrhage.
Mason spent most of eighth grade in the hospital. In the six months he was hospitalized, he spent 65 days in the pediatric intensive care unit. He underwent four brain surgeries. Halfway through his hospitalization, the Affordable Care Act was passed, alleviating lifetime limits on coverage and saving us from the financial abyss. Mason moved to a rehabilitation hospital where he was retaught the most basic skills — sitting up, eating and standing. We faithfully paid the premiums on the employer-sponsored plan through which our family is covered, along with the rest of our bills, thanking God and whoever else would listen for our good fortune to have coverage.
The biggest fear for families such as mine is that we will lose our health insurance and be rendered uninsurable because one of us has been sick. The Affordable Care Act does away with dreaded clauses barring preexisting conditions. It also enables us to keep Mason on our insurance until he is 26; then, he will be able to purchase his own coverage on an insurance exchange. At least, that was the plan until last Tuesday, when the government was shut down in protest of such excesses.
As far as the brain tumor goes, our family might have drawn the short straw. Maybe our story lacks a certain universal appeal. People might thinking to themselves, “I’m so sorry that happened to you, but odds are it won’t happen to me.” I hope it doesn’t, really.
But having lived in hospitals with Mason for months, I have seen that bad things — accidents, freak illnesses — happen to smart, cautious and otherwise undeserving people. It’s one thing we all have in common. We are fragile beings. So what is wrong with allowing us to purchase a financial safety net? What’s so un-American about that?
If I could get John Boehner and Ted Cruz on a conference call, I would explain this to them. I would tell them that, while they were busy trying to derail the Affordable Care Act over the past two years, Mason has again learned to walk, talk, eat and shoot a three-point basket.
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