We've tried to treat the blog like a dinner party with your mother's friends: Keep it chipper, chatty and avoid talk about God or politics.
But we're unwillingly becoming a bumper sticker for healthcare reform.
The bureaucrats drove steel-nerved Mo near tears yesterday. We've spent the last few months waiting for our geneticist to forward his mammoth report documenting every stray hair and malformed bone to the state. We need it to qualify for supplemental insurance that picks up items our regular policy does not, such as hearing aids.
It's not exactly a bargain: $2,400 a year. If the cost doesn't give pause, the paperwork does.
The geneticist gave them about 50 mind-numbing pages. They want more. It's not enough to be diagnosed with Cornelia de Lange Syndrome, with all its attentive problems. They need documentation from four specialists listing why Hope should get something that's outrageously expensive and we hope to hardly use.
So it's another week of faxes and phone calls for Mo to prove that CdLS presents a host of issues, even though a Google search of the syndrome would reveal the answer in about 0.62 seconds.
That's annoying. What's more so is that we could have saved months of hassle if someone told us months ago. When Hope flunked her hearing test in the hospital, we received three phone calls from government social workers within hours. When she was diagnosed with CdLS, no one did, leaving Mo to navigate a dizzying bureaucracy on her own.
She's done a good job, but sometimes spends entire afternoons on the phone doing battle with receptionists.
The good news: CdLS kids at least qualify for supplemental insurance. Kids with Down's and some other syndromes don't, no matter how severe they are. So go the vagaries of health care.
Better news: We only need to do this once. Once Hope's in, she's in for good.
But oh what a hassle to get there.