The Day After The Day of Jubilation
 |
I felt subdued yesterday, had no desire to celebrate anything, much less the national holiday. I’m not about to write about all the things as my voice is tinny tiny teeny and matters not. I made a berry cobbler, signed up to teach cooking classes to formerly unhoused folks, piddled around in my backyard garden, took care of Sophie and ate some grilled pork chops and salad with Carl and my son Henry. Today I am teaching, gathering together documents to get some financial help with my $8300 co-pay for the eyeball blow-out incident from last February and making an appointment for Sophie to have some labs done, one being a genetic test that might give us more info. I have not been able to get more info because I had no desire or ability to pay for more info. When you take care of and advocate for a person with disabilities for 26 years, you pick and choose as they say the fights. More cliches: you win some you lose some, knowledge is power. Diapers grow on trees according to ex-husbands. Systems down as far as my tiny little mother mind™ goes: American healthcare, Family law, marriage, in no particular order.
As my friend Stephen Kuusisto of Planet of the Blind wrote:
So today while the able bodied stuff themselves with hot dogs I am taking time to say that until health care is a right in this country no one is free.
On a good note, I’ve made two new friends in the past week!
The universe is abundant.
Two years ago we finally got that "more info" on our 26 year old, Haya. Until then it wasn't covered by our health fund. While there is no targeted medicine for this syndrome and the finding didn't affect our or the doctors' treatment choices, it was great to just know: It's a de novo mutation on gene SCN2A. That means it's not hereditary!!! Our other children don't need to worry about passing it to their offspring. It also gave us entry to a new club: The support group of nearly 700 other families in the world with children found to have this mutation. I really wish you the sort of "more info" that will help cope with Sophie's disabilities. Who knows - she may have a mutation for which there's some sort of treatment out there. (And please, direct me to a diaper seedling, you exes!)
That Kuusisto quote. Just, yes. We'd been planning for years to bring my mother-in-law over to live by us so she can be with her only grandchildren as they grow, and be close to her only child. But had to face the reality that the health care she gets in Britain (she was born with a disability, and as she ages it requires more care) is not something we could ever replace here without being extremely wealthy.