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Thread: Cliques, depressing site, donations, drama and other MYTHS

  1. #11
    I've always felt pretty welcome here. There are definitely a wide variety of backgrounds represented here (buzzards by light of the full moon, case in point Lynne!), so I don't know how we could be "cliquey."

    No person or organization is perfect. I say, look at the fruit that's produced before judging. CHERUBS has helped a lot of people.
    Chris Tennyson Married to Matt 12 years Mom to Nicole- born 01/06/07 with LCDH- diagnosed in utero at 18 wks. Has g-tube- reflux- eosinophilic esophagitis (EE)- and scoliosis- but one happy and busy toddler! http://i296.photobucket.com/albums/m...s/IMG_5502.jpg

  2. #12
    Well I have come to this site on and off for the past 5 years,never a real regular, but this is the site that I came to while my daughter was in the NICU and it answered so many of our questions, and Dawn you always have answered my e mails, my family and I were very greatful to have this site around during our hard times, and even more afterwards. It is such a help in the grieving process to be able to post pictures and stories about our little angels and survivors, because grief is on going, some of us are here often and others only when they may be feeling a bit sad. I hope to someday become more involved with Cherubs, because it is a wonderful site!!!!

  3. #13
    Very well said Dawn!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  4. #14
    Awwww, you all are so great. Been thinking about this and well, it's just surprising that people still spread lies at our ages and that people are so gullible. So if you ever have any questions....

    1. Will the source of this "fact" benefit at all, in any way, if they dissuade you from coming to CHERUBS site or donating or volunteering? Do they have ulterior motives by "helping" you or "informing" you? What do they get out of telling you myths or lies?

    2. Is the source a member of CHERUBS? If so, ask them why they are members if they don't like whatever it is they are complaining about. Ask them if they have come to me or one of the Advisors with their concerns. If they are not members, ask them why. Where they banned and why? If they have never been members then how do they know what goes on here?

    3. Look for yourself. Learn for yourself. Use common sense. Don't become a victim of idle gossip or catty behavior. Having information and support for CDH is too important.

    4. Someone who truly cares about you will not dissuade you from seeking and finding all the support and information that you possibly can. They won't add drama to your life when you really need support. They won't lie to you or put their own interests in front of you getting help that you need.

    5. Ask before you believe and don't be gullible. If it sounds off the wall, it probably is. If anything horrible was going on, how in the world would we still be here 13 years and 2500 members later?

    These are all things that we should all know as adults, but sometimes when stress and grief and other things happen... we can be vulnerable and forget this things. If any of us come across a CDH family that has fallen victim to these myths... please take a few moments to give them the truth and show them the kindness and support that comes from our members here at CHERUBS.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  5. #15
    well said Dawn, we are all her for the same cause . xxx
    Liz Dunne- Mum to Clodagh Elizabeth Dunne-Byrne- born 8th march 2007 with right sided Eventration Versus CDH- intensive care for 8 days- put on life support at birth- no operations yet- Repair taking place April 14th 2010. Many problems with reflux persistent gagging- turning blue.Gastrophaguel reflux disease- paralysed diaghragm- Speech delay still awaitin speech therapy. We Love Our Little Angel. Also Mum to Her Brother Darragh James Dunne-Byrne aged 7 - Our handsome Prince and our little king Cathal Born June 22nd 2009 and Mum to baby Charlie- miscarried at 6 weeks gestation on 11th august 2005.

  6. #16
    Dawn,
    Very well said. I haven't been on here in ages...and didn't even know this was going on. It makes me sick to my stomach...especially since I did nothing to stop it while I was there. And yet when I came to my senses...you still welcomed me here. And that I think speaks volumes.
    ~Carole
    ~Carole Rocking mom to Joseph-Born into this world and gone from it August 25- 2006. Bilateral CDH- less than 6% predicted lung volume- most beautiful angel I've ever laid eyes on. As well as Zachary (8 1/2) and Abigail (almost 5)

  7. #17
    ((((((((((((hugs)))))))))))))) Carole. You just lost Joseph, you were vunerable and grieving and yet still.... you walked away from all that when you realized what was going on. That speaks volumes about you. We're so glad you're here.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  8. #18
    You know I went back and read some of the posts that have been written about Dawn and Cherubs. I think we were referred to as her "hench men"....I find that funny. OOOHHHH we are all real scary with our SUV's and mini vans, and our stretch marks and vomit stained shirts! Wouldn't want to meet up with us in a dark alley, we might try to give you a hug! The Diaphragmatic Mafia if you will.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  9. #19
    LOL, Lynne. You are the queen of gross analogies. LOL. Henchmen stuff aside, Diaphragmatic Mafia aside.... No matter how angry we may get at this ridiculous stuff, I want us to be able to hold our heads up proud that we didn't roll in the gutter. I just want us to be the best examples that we can possibly be of a loving, caring, giving group of individuals with the common goals of support each other, encouraging research and raising awareness.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  10. #20
    LOL Lynnne
    Mommy to Haylee 01/26/2004 and My cherub Asher 07/04/2007- LCDH discovered at 18 weeks- medical termination at 24 weeks. Hypoplastic left lung and right jaw- pulmonary hypertension- Secundum type ASD- left liver lobe- stomach- appendix- and small bowel herniated www.freewebs.com/babyasher Ashers webpage http://www.youtube.com/watch?v=dxS8F4dkHjE Ashers video montage

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