LJ Idol Season 9 Week 0 - Standing Outside the Fire
o/` "We call them cool
Those hearts that have no scars to show
The ones that never do let go
And risk the tables being turned" o/`
-- "Standing Outside the Fire" performed by Garth Brooks
I've been sitting on the old couch in the living room with four of the cats curled around me while I work on the blanket I hope to enter in this year's county fair. The pieces, based upon the traditional granny square crochet motif, will be whip stitched together to form giant daisies on a warm autumn backdrop. There's a fire dancing merrily on the hearth, as spring nights in this part of Florida can still be chilly, and the cats have taken advantage of the added warmth. They lie sprawled conspicuously in attitudes of careless abandon directly where their humans must walk in order to get to any other part of the house save for Faisal. His place is curled in a ball directly behind my head, one paw resting on my shoulder.
Crocheting, for me, is a secondary activity; the hands learn the pattern and then continue producing it until I recall my attention to the project and begin another task. Often I watch television while doing so and this day is no exception; old episodes of Law & Order play in the background, a kind of white noise in counterpoint to the feline snores by which this particular housewife meditates. Suddenly, the scene on television grabs my full attention and I drop several stitches. Irritated, I unravel the mistake and begin the process of automating the pattern. Unfortunately, my brain doesn't want to drop its interest in the show. I listen; a doctor licensed to perform third trimester abortions has been murdered and the detectives are talking to their clients. The girl they're questioning cannot have her procedure now and states she will give birth to a child with "fragile skin" disease. The next scene confirms what I'd already suspected: they're talking about a baby born with Ehlers-Danlos Syndrome and, for the purpose of the plot, the writers defined it as a "non-viable" condition.
I have Ehlers-Danlos Syndrome, classical type II. I inherited the disease from my mother who inherited it from her father who inherited it from his father. It's a relatively rare condition, affecting roughly two million people worldwide and more often found in those with Nordic and Slavic heritages.
There are only two conclusions I can draw: either the writers didn't do their research or there are some utterly stupid, shallow people out there who shouldn't be having children in the first place.
"Hey, Dorie, do I look nonviable to you?"
She comes in from the kitchen, looking puzzled, and I show her the scene. "No," she states flatly. "Granted, there are some medical issues involved, but it's perfectly survivable condition."
She would know; she's seen EDS slowly steal away my mobility and she's the one who does the things for me I can no longer do by myself or without help. There aren't many of those things, but they're important and without her help I'd be in a hospice.
Even so, the question nags at me: did my mother do the right thing? Do I have the right to exist, to take up the resources I do? And just how does one decide that for the sake of a perfect baby? EDS isn't even one of the diseases they test for in prenatal screening because it's so rare. That mother would have had to have a family history of the disease for the doctor to have suspected EDS in the first place, and even then it's not entirely certain that a child will have the disease.
This isn't a productive train of thought. Obviously my parents wanted me enough to go against those odds. So what if we didn't entirely beat them? I'm here now, and I intend to continue occupying the realm of the living.
If you want more information or a longer introduction, the most recent is HERE. Introductions from past seasons are located HERE". Links to the remaining introductions are included in the latter of the aforementioned entries. You might also wish to read THIS POST if you haven't already. It, along with my profile, explain what you need to know about my unique family. -- KMWJ
Those hearts that have no scars to show
The ones that never do let go
And risk the tables being turned" o/`
-- "Standing Outside the Fire" performed by Garth Brooks
I've been sitting on the old couch in the living room with four of the cats curled around me while I work on the blanket I hope to enter in this year's county fair. The pieces, based upon the traditional granny square crochet motif, will be whip stitched together to form giant daisies on a warm autumn backdrop. There's a fire dancing merrily on the hearth, as spring nights in this part of Florida can still be chilly, and the cats have taken advantage of the added warmth. They lie sprawled conspicuously in attitudes of careless abandon directly where their humans must walk in order to get to any other part of the house save for Faisal. His place is curled in a ball directly behind my head, one paw resting on my shoulder.
Crocheting, for me, is a secondary activity; the hands learn the pattern and then continue producing it until I recall my attention to the project and begin another task. Often I watch television while doing so and this day is no exception; old episodes of Law & Order play in the background, a kind of white noise in counterpoint to the feline snores by which this particular housewife meditates. Suddenly, the scene on television grabs my full attention and I drop several stitches. Irritated, I unravel the mistake and begin the process of automating the pattern. Unfortunately, my brain doesn't want to drop its interest in the show. I listen; a doctor licensed to perform third trimester abortions has been murdered and the detectives are talking to their clients. The girl they're questioning cannot have her procedure now and states she will give birth to a child with "fragile skin" disease. The next scene confirms what I'd already suspected: they're talking about a baby born with Ehlers-Danlos Syndrome and, for the purpose of the plot, the writers defined it as a "non-viable" condition.
I have Ehlers-Danlos Syndrome, classical type II. I inherited the disease from my mother who inherited it from her father who inherited it from his father. It's a relatively rare condition, affecting roughly two million people worldwide and more often found in those with Nordic and Slavic heritages.
There are only two conclusions I can draw: either the writers didn't do their research or there are some utterly stupid, shallow people out there who shouldn't be having children in the first place.
"Hey, Dorie, do I look nonviable to you?"
She comes in from the kitchen, looking puzzled, and I show her the scene. "No," she states flatly. "Granted, there are some medical issues involved, but it's perfectly survivable condition."
She would know; she's seen EDS slowly steal away my mobility and she's the one who does the things for me I can no longer do by myself or without help. There aren't many of those things, but they're important and without her help I'd be in a hospice.
Even so, the question nags at me: did my mother do the right thing? Do I have the right to exist, to take up the resources I do? And just how does one decide that for the sake of a perfect baby? EDS isn't even one of the diseases they test for in prenatal screening because it's so rare. That mother would have had to have a family history of the disease for the doctor to have suspected EDS in the first place, and even then it's not entirely certain that a child will have the disease.
This isn't a productive train of thought. Obviously my parents wanted me enough to go against those odds. So what if we didn't entirely beat them? I'm here now, and I intend to continue occupying the realm of the living.
If you want more information or a longer introduction, the most recent is HERE. Introductions from past seasons are located HERE". Links to the remaining introductions are included in the latter of the aforementioned entries. You might also wish to read THIS POST if you haven't already. It, along with my profile, explain what you need to know about my unique family. -- KMWJ