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!)
I imagine we will become one of those rare families with a daughter with a "rare" mutation for which there is no treatment. I get that knowledge helps, but it also makes me shrug.
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.
This was beautiful and hard. Thank you. Something always makes me want to smash cliches, and yet smashing doesn't make the truths behind some of them any less hard.
Wow that is a huge co pay. I live in Canada and last month was in emergency with what was thought to be a stroke(it wasn't). Catscan, blood tests, then follow up phone appt at stroke clinic. Didn't have a co pay or any charge at all. I do have unstable rental housing and chronic unemployment but except for prescription drug costs which can be large and dental work, no medical cost concerns.That co pay cost is mind blowing.
I would love to be your friend! I don't deserve you though. But your new friends are lucky to have you, as are you, to be still making new friends. And your volunteering sounds like a beautiful idea. For you and your students.
Making new friends when we are our most naked selves is wonderful indeed, as the communion is more likely to be effortless and true. I'm sorry about all the rest of it, though dinner in the back garden with Carl and Henry does sound lovely.
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!)
I imagine we will become one of those rare families with a daughter with a "rare" mutation for which there is no treatment. I get that knowledge helps, but it also makes me shrug.
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.
Kuusisto is a master poet and advocate. He's also a lovely person.
Will be looking up some of his work.
This was beautiful and hard. Thank you. Something always makes me want to smash cliches, and yet smashing doesn't make the truths behind some of them any less hard.
Wow that is a huge co pay. I live in Canada and last month was in emergency with what was thought to be a stroke(it wasn't). Catscan, blood tests, then follow up phone appt at stroke clinic. Didn't have a co pay or any charge at all. I do have unstable rental housing and chronic unemployment but except for prescription drug costs which can be large and dental work, no medical cost concerns.That co pay cost is mind blowing.
The grand old U.S. of A.
Two new friends is a beautiful thing. The American systems of justice and healthcare are most definitely not.
Love you!
I would love to be your friend! I don't deserve you though. But your new friends are lucky to have you, as are you, to be still making new friends. And your volunteering sounds like a beautiful idea. For you and your students.
You ARE my friend, Jo! Thank you for your long support and love and hilarity!
Making new friends when we are our most naked selves is wonderful indeed, as the communion is more likely to be effortless and true. I'm sorry about all the rest of it, though dinner in the back garden with Carl and Henry does sound lovely.
I agree wholeheartedly with the quote. It boggles my mind that health care is so expensive in the States.
Sending hugs and love woman.