1. Twinswithcfmom

    Twinswithcfmom New Member

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    Mom to twins with cystic fibrosis sharing my life as a parent

    Discussion in 'New Member Introductions' started by Twinswithcfmom, Nov 25, 2016.

    Hello Everyone,

    I'm a mom to twins with cystic fibrosis, a genetic disease. I want to share my thoughts, my feelings, and perhaps help other twin parents out there who could use some encouragement that they are not alone. Someone else also walks in their shoes. At this time in my twin sons life, they are the oldest set in Texas at the age if almost 21. Only about 300 sets in the whole world documented when they were about 12 yrs old. So, you could say my twins are a bit famous at the hospitals..hahaha. My life has had many ups and downs and I would like to share with you. That's if you like to read about my life of having famous twins in the community.
     
  2. BayView

    BayView Huh. Interesting. Contributor

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    Are you planning to write about your experiences? For publication, or maybe on a website?
     
  3. Twinswithcfmom

    Twinswithcfmom New Member

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    There is only one book of identical older girl twins with CF right now that I know of, they tour to different cities. There are no publications or books with parents of twins that I know of. Since it is so rare for identical twins to have cf, there might not be a market for my information. However, if I write a story from my experiences, others who follow me may possibly relate to how a parent feels with any genetic disease, which most often is sorrow and grieving. When it's a life shortening, fatal, or no cure, this takes a toll on parents lives.
    As far as a website, just knowing how to get my information out there is hard for me and I am typing this on a iPhone 4 (given to me and much appreciated too!) In my eyes, my twins life saving meds are more important than keeping up with technology. I do the best I can with what I have to share me feelings, thoughts, on this site and perhaps someone will read my life history dealing with very sick twins and how they deal with things
     
  4. Twinswithcfmom

    Twinswithcfmom New Member

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    I guess I need a little bit of looking around in the site (since I'm new) where to start my life history having twins with a life shortening disease and how it affects me personally. Any help appreciated,
     
  5. GingerCoffee

    GingerCoffee Web Surfer Girl Contributor

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    You clearly have a remarkable story to tell. Start writing it and if you can, join a critique group. If you haven't written before, the best way to learn how to write that memoir is to get started and get good feedback.

    You might try writing different experiences, deciding which ones to keep after you are further along in the book.
     
    Twinswithcfmom likes this.
  6. Patsy

    Patsy Member

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    Hello from another new member.
     
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  7. BayView

    BayView Huh. Interesting. Contributor

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    I'm not sure there's a part of the site really dedicated to that - this site is more directed at writing itself. But there's a blog area, at https://www.writingforums.org/blogs/ where you might be able to get some of this down? I'm not sure how much attention the blogs get, though.

    I don't mean to make you feel at all unwelcome, but are there CF support sites or other places where you might find more targetted support for what you're looking for? I think it's totally valid that you'd be looking for somewhere to share some of your stress and challenges!
     
  8. Twinswithcfmom

    Twinswithcfmom New Member

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    Just now seeing this post. A blog is perfect. I don't write on cf websites because there is so much heartache that others post that I find it overwhelming and I feel alone. So, if no one reads my blog, it's ok. I'm releasing my life in my words. Writing on a this iPhone is hard, I meant to edit and hit report sorry!
     
  9. Twinswithcfmom

    Twinswithcfmom New Member

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    Hello
     
  10. Twinswithcfmom

    Twinswithcfmom New Member

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    :) Well Patsy, I guess we learn together.
     
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  11. Twinswithcfmom

    Twinswithcfmom New Member

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    Th
    Thank You
     
  12. KaTrian

    KaTrian A foolish little beast. Contributor

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    On behalf of the staff, welcome! :) Sounds like you have quite a story to tell. Best of luck. We're all here to help! :)

    Here's our New Member Quick Start to get you started if you haven't found it yet. See you!

    -Kat
     
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  13. Twinswithcfmom

    Twinswithcfmom New Member

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    Thank you. I am doing my best in the blog area.
     
  14. Crazy-catfish

    Crazy-catfish Member

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    Hey!! I'm a brand new member here too and it looks like you have a hell of a story to tell us about you and your son's amazing journey in life so far!!

    Looking forward to reading anything you may want to share x
     

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