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Joined: Aug 16, 2008
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Last visit: Sunday, March 07, 2010 (00:54:06)
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Signature: Toward what city will I travel? What wild houses do I go to occupy? What vagrant rooms and streets and lights in the long night urge my expectation?...Allen Ginsberg 1954: "Siesta in Xbalba"
Biography: I am best explained as a paradox of astronomical proportions. I rarely take the time to understand myself, so how can I expect anyone else to? I love heated conversations, silly talk, the implied, walking on the edge occasionally, though I shrink to safety in the conservative in zone. I like to think of myself as intelligent, though I am the first to admit that I don't know much. I love learning & being turned on to new things--music, books, films, experiences. I LOVE magnetic poetry, poetry of all types, & helping others find that love of word, especially those who say they hate the form. Okay, this isn't a bio. But aren't those supposed to be written by others, anyway?
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Saturday, March 06, 2010 (06:28:05) - Rewriting the Story: Searching for the CF Cure
Rewriting the Story: Searching for the CF Cure


I am not trying to write a sob story.
My goal is to NEVER have to do that. My goal is to rewrite my daughter's story, to give her more time for her exposition, time for the rising action that will allow her to learn more about life and herself in the process, time for experiencing life's conflicts (commonly referred to as milestones and experiences). I want the resolution to be a long time coming; I am not interested in penning her epilogue. My dream is that she'll be around to pen mine.


I can not change the fact that my daughter was born with cystic fibrosis. Nor would I have chosen not to have her here living her life, as I could have done had I known after conception that she was sick. In many ways, I am SO thankful that her disease was such a shock to me. Had I known prior to her conception that her father and I were both carriers of the cf gene, I would have felt it unethical to have a child, though I so wanted another (and I still do; being the oldest of six children makes two of one's own seem lonely, somehow). I am sure that I would have held steadfast to the decision I feel certain that I would have made--to have not terminated my pregnancy had I found out she was ill, but I know I would have questioned my ability to be a mother to a special-needs child. I would have had questions about her possible quality of life.


On the other hand,

Nadia spent almost eighteen months dying in small increments before she was diagnosed.
Her early childhood was characterized by an appetite that is now legendary--she ate more than her father and I put together at each mealtime, yet was still hungry just ten minutes later. She would grunt and growl between each bite when she still required us to feed her. Her belly was always rock hard and distended like a starving child from a third-world country. She had that hollow look in her eyes. The Christmas before she was diagnosed, she was so teeny, despite all of the eating. She cried nonstop. Her hair was thin. I told my husband that she was going to die. I felt powerless. Once I daignosed her via Googling her symptoms, and after I got over the trauma of attaching the label of a terminal illness to my daughter, I realized that her diagnosis gave us back some control. I also realized that life itself is terminal, so in that sense, she's not that much different than the rest of us.


I was angry, though. I went through a "Why me" stage. I was angry with the state of North Carolina for not testing for cf with the infant "heel prick" they do at birth. I was angry that my gynecologist hadn't explained what it meant to me that I was a carrier for cf (I had discovered this via routine testing when I was pregnant with my son). I was angry that she didn't explain to me the importance of having my husband tested to see if he, too, was a carrier. I was angry that I had forgone the genetic testing on my husband due to monetary concerns. However, I soon realized that had those things occured, I wouldn't have my Nadia. Nothing can make me regret that she is here. She is not misreable. She is happy most days, except for when her brother is pestering or when we don't let her have her way.


Let me tell you how difficult it is to say no to a child with an illness. I want to give her everything she wants. I want to ensure that she never cries. But I know that I also must prepare her to live as normal a life as possible, and the best gift I can give her is one of normalacy. Besides, it is through this every day parenting that we teach our children values and show them how to make their way in the world. It is through this "home education" that we show our kids that we love them, as cliched as that sounds. When I was growing up, I was a good kid, but I didn't have that constant parental attention I craved, the parents who asked me if I had homework or talked to me about my day at school. I want to provide her with that.


The time has not come yet for me to explain many of the details of cf to Nadia. She knows that she is sick and that she has to take medicine. She knows that she has a team of doctors that she visits, doctors that care a lot about her. She understands that she has to be very careful about germs, and she is a better hand-washer than me. She also understands (and loves) that she gets to eat and drink more than the rest of us; she is quick to ask, "Where's my shake?" as soon as she gets home. These protein shakes have helped us get her to just over 30 pounds, a milestone that forever seemed unreachable. When the time comes for Nadia to learn more about her illness and the implications of it, I would like to be able to tell her that it is not so bad. I would like to be able to tell her about all of the great new medical breakthroughs and treatments available to her, including gene replacement therapy.
You can help make this happen by making donations to the Cystic Fibrosis Foundation at http://www.cff.org/. Teams are gearing up nationwide for the annual Great Strides walk. Join a team. Help fundraise. (Visit our team's website to learn more about Nadia and to donate to our efforts). Read about c.f. here so that you know what it is and how it is inherited.

Help us rewrite the story for thousands of children and adults!


Love,
Nadia's Mommy
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    My Poem
    The Scar

    I never forgave my grandfather
    for molesting me
    especially at such an awkward age
    and in my grandmother's own bed
    that winter
    when I was only five.
    I forgot my secret
    beneath my childhood
    and would not remember,
    though I could feel him touching.
    When I grew up
    my boyfriend kissed me gently,
    his velvet penis in his hand,
    and said, "If you loved me, you'd let me,"
    I stiffened in his arms
    and said, "no"
    without a single word
    of explanation and cried.
    In my nineteenth year,
    I still feel
    dirty.

    Boone, NC 1998

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    My 2 Cents
    bfaulkner's recent Blog entry. Rewriting the Story: Searching for the CF Cure ( 45 reads) Saturday, March 06, 2010 (06:28:05)
     
    Rewriting the Story: Searching for the CF Cure


    I am not trying to write a sob story.
    My goal is to NEVER have to do that. My goal is to rewrite my daughter's story, to give her more time for her exposition, time for the rising action that will allow her to learn more about life and herself in the process, time for experiencing life's conflicts (commonly referred to as milestones and experiences). I want the resolution to be a long time coming; I am not interested in penning her epilogue. My dream is that she'll be around to pen mine.


    I can not change the fact that my daughter was born with cystic fibrosis. Nor would I have chosen not to have her here living her life, as I could have done had I known after conception that she was sick. In many ways, I am SO thankful that her disease was such a shock to me. Had I known prior to her conception that her father and I were both carriers of the cf gene, I would have felt it unethical to have a child, though I so wanted another (and I still do; being the oldest of six children makes two of one's own seem lonely, somehow). I am sure that I would have held steadfast to the decision I feel certain that I would have made--to have not terminated my pregnancy had I found out she was ill, but I know I would have questioned my ability to be a mother to a special-needs child. I would have had questions about her possible quality of life.


    On the other hand,

    Nadia spent almost eighteen months dying in small increments before she was diagnosed.
    Her early childhood was characterized by an appetite that is now legendary--she ate more than her father and I put together at each mealtime, yet was still hungry just ten minutes later. She would grunt and growl between each bite when she still required us to feed her. Her belly was always rock hard and distended like a starving child from a third-world country. She had that hollow look in her eyes. The Christmas before she was diagnosed, she was so teeny, despite all of the eating. She cried nonstop. Her hair was thin. I told my husband that she was going to die. I felt powerless. Once I daignosed her via Googling her symptoms, and after I got over the trauma of attaching the label of a terminal illness to my daughter, I realized that her diagnosis gave us back some control. I also realized that life itself is terminal, so in that sense, she's not that much different than the rest of us.


    I was angry, though. I went through a "Why me" stage. I was angry with the state of North Carolina for not testing for cf with the infant "heel prick" they do at birth. I was angry that my gynecologist hadn't explained what it meant to me that I was a carrier for cf (I had discovered this via routine testing when I was pregnant with my son). I was angry that she didn't explain to me the importance of having my husband tested to see if he, too, was a carrier. I was angry that I had forgone the genetic testing on my husband due to monetary concerns. However, I soon realized that had those things occured, I wouldn't have my Nadia. Nothing can make me regret that she is here. She is not misreable. She is happy most days, except for when her brother is pestering or when we don't let her have her way.


    Let me tell you how difficult it is to say no to a child with an illness. I want to give her everything she wants. I want to ensure that she never cries. But I know that I also must prepare her to live as normal a life as possible, and the best gift I can give her is one of normalacy. Besides, it is through this every day parenting that we teach our children values and show them how to make their way in the world. It is through this "home education" that we show our kids that we love them, as cliched as that sounds. When I was growing up, I was a good kid, but I didn't have that constant parental attention I craved, the parents who asked me if I had homework or talked to me about my day at school. I want to provide her with that.


    The time has not come yet for me to explain many of the details of cf to Nadia. She knows that she is sick and that she has to take medicine. She knows that she has a team of doctors that she visits, doctors that care a lot about her. She understands that she has to be very careful about germs, and she is a better hand-washer than me. She also understands (and loves) that she gets to eat and drink more than the rest of us; she is quick to ask, "Where's my shake?" as soon as she gets home. These protein shakes have helped us get her to just over 30 pounds, a milestone that forever seemed unreachable. When the time comes for Nadia to learn more about her illness and the implications of it, I would like to be able to tell her that it is not so bad. I would like to be able to tell her about all of the great new medical breakthroughs and treatments available to her, including gene replacement therapy.
    You can help make this happen by making donations to the Cystic Fibrosis Foundation at http://www.cff.org/. Teams are gearing up nationwide for the annual Great Strides walk. Join a team. Help fundraise. (Visit our team's website to learn more about Nadia and to donate to our efforts). Read about c.f. here so that you know what it is and how it is inherited.

    Help us rewrite the story for thousands of children and adults!


    Love,
    Nadia's Mommy

    Comments (0)
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    Hello? Is anyone there?
    Brylee123: come back everyone!
    20:02:12
    Brylee123: is very quiet around here nowadays!
    20:00:54
    Brylee123: WHERE IS EVERYBODY?!?!?! I feel so alone, so alone . . . seriously though it
    20:00:31
    Brylee123: I thought they were more of a blue(?)
    18:49:32
    schlegel: Loved to Avatar green people, cried a wee bit ha ha Jon
    08:44:40
    Brylee123: Haha yeah right. I really don't have any poems that I like . . . I'll have to start writing more.
    15:43:53
    lash570: nice song - cool!!!
    20:32:26
    Brylee123: Okay, hopefully this works. This is my poem "The Werewolf": http://www.gotpoet ry.com/Poems/l_op= viewpoems/lid=5481 9.html
    18:56:11
    Brylee123: okay I'm back. I'll get the url!
    16:16:12
    Brylee123: Oh . . . okay cool! Off to my poems! Actually, I'm off to bed because it's late I'll PM you in the A.M. with the URL. G'night!
    03:07:34
    PinkNeonFlavor: All you have to do is go to your poems and copy your url in PM...Smile
    22:37:32
    Brylee123: Sorry, I didn't meant to seem rude. Sad
    15:15:25
    Brylee123: Who's Winterchild?
    15:15:02
    schlegel: Hey Winterchild u there? Jon
    07:20:44
    Brylee123: Hmm . . . I'll see what I can do. I'll get back to you on this situation.
    22:07:57
    PinkNeonFlavor: Well, oddly enough I cannot find your poems
    21:52:33
    Brylee123: are you talking to me? guess so . . . what? no poems? I have poems! I have quite a few! You don't see them? isn't that strange . . .???
    19:49:58
    PinkNeonFlavor: Hello! Hello! Smile You have no poems on this webpage...You gotta get writing some poetry. Smile
    16:51:13
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    The Shower

    I’m in my glass box
    where the water’s pelting steamy.
    The frothy river widens
    and then narrows between my breasts.
    I paddle hard through the waterfall,
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    stopping before swirling
    down the drain.

    I dock my boat
    and venture ashore.
    Gripping razor between fingers,
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    Fall 1998 Boone, NC
    published in Appalachian Broadsides Volume 17, Number 4, February 2000

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      Re: B Faulkner (Score: 1)
      by Mayah on Sunday, March 15, 2009 (09:40:51)
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      Love your avatar, Excellent job in your web page... Maya


      Re: B Faulkner (Score: 1)
      by orchidmask on Wednesday, October 08, 2008 (06:01:08)
      (User Info | Send a Message) http://orchidmask.blogspot.com/
      Scar cut deep.
      Deeply personal and alive with emotion. Nice work.
      William

      http://orchidmask.blogspot.com/


      Re: B Faulkner (Score: 1)
      by Huberjack on Wednesday, September 03, 2008 (13:06:23)
      (User Info | Send a Message) http://www.jackhuber.com
      Love your profile pic and your writing style. Looking forward to more of your work.

      Jack




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