My daughter was diagnosed with something awful 2 years ago, when she was 5 weeks old (cystic fibrosis).
Everything since then, everything, has been outrageously positive -- her genetic tests showed a very rare presumed very mild mutation, her sweat tests were borderline and then later, normal, she's pancreatic sufficient, she is tall and sturdy and healthy and a good weight, she has never gotten sick, she cultures no evil bugs, etc. etc. etc. a litany of hope that turned our expectations around.
The doctors were saying that maybe she'd never get sick, there's a new diagnostic category being developed for kids who have two broken genes but who never get sick, she's so healthy, all her tests are so good, she is probably one of THOSE kids, one of the ones not dying in her 20s waiting on the transplant lists for new lungs, one of the ones not doing 2+ hours of medical treatments every single day, one of the ones not going into hospital for 2-3 weeks 2-3 times a year. A lucky one, a healthy one, my daughter, they said, I hoped, I believed, I prayed.
So as part of their desire to move her to a not-going-to-die-from-this protocol, to a not-doomed protocol, to a will-outlive-her-mother protocol, they decided to redo some key diagnostic tests.
And the most important one, the key one, the one that she has NEVER had a bad result on, the one her results were NORMAL on, the one where her excellent normal results made her a not-going-to-die-horribly-and-young-after-suffering girl, THAT ONE
is bad.
is really bad.
wasn't expected to change.
no one knows why it changed.
no one has a theory.
no one has comforting words.
but today, today that I hate, today that I want to erase, today that I do not want to remember when I wake, today they moved her back into the doomed-child bucket, the going-to-suffer bucket, the dying-before-me bucket, the world-without-Bridget-in-it bucket.
This isn't a post about prognosis, so please don't try to help me with medical specifics.
This is a cry from a mother's heart who doesn't want to sleep because the dark is so dark tonight.
Oh, please.
Oh, WHY?
Oh, Bridget. I am so, so sorry.
Everything since then, everything, has been outrageously positive -- her genetic tests showed a very rare presumed very mild mutation, her sweat tests were borderline and then later, normal, she's pancreatic sufficient, she is tall and sturdy and healthy and a good weight, she has never gotten sick, she cultures no evil bugs, etc. etc. etc. a litany of hope that turned our expectations around.
The doctors were saying that maybe she'd never get sick, there's a new diagnostic category being developed for kids who have two broken genes but who never get sick, she's so healthy, all her tests are so good, she is probably one of THOSE kids, one of the ones not dying in her 20s waiting on the transplant lists for new lungs, one of the ones not doing 2+ hours of medical treatments every single day, one of the ones not going into hospital for 2-3 weeks 2-3 times a year. A lucky one, a healthy one, my daughter, they said, I hoped, I believed, I prayed.
So as part of their desire to move her to a not-going-to-die-from-this protocol, to a not-doomed protocol, to a will-outlive-her-mother protocol, they decided to redo some key diagnostic tests.
And the most important one, the key one, the one that she has NEVER had a bad result on, the one her results were NORMAL on, the one where her excellent normal results made her a not-going-to-die-horribly-and-young-after-suffering girl, THAT ONE
is bad.
is really bad.
wasn't expected to change.
no one knows why it changed.
no one has a theory.
no one has comforting words.
but today, today that I hate, today that I want to erase, today that I do not want to remember when I wake, today they moved her back into the doomed-child bucket, the going-to-suffer bucket, the dying-before-me bucket, the world-without-Bridget-in-it bucket.
This isn't a post about prognosis, so please don't try to help me with medical specifics.
This is a cry from a mother's heart who doesn't want to sleep because the dark is so dark tonight.
Oh, please.
Oh, WHY?
Oh, Bridget. I am so, so sorry.
I am so, so sorry. I wish you peace tonight.
