United Brachial Plexus Network, Inc.

Does UBPN think people whose children have milder injuries that are addressed non surgically should provide a seperate website? Or are they dedicated to serving all the bpi community? I was wondering if Karen was speaking on behalf on UBPN in her post. I think a seperate board for families who do not choose surgery would be a positive thing, and more families whose childrens injuries are milder would probably post than is currently the case, giving a much more balanced view.

So, you guys want to tar and feather me? It's been done already and it doesn't work.

Don't like what I show or have to say on my website?then don't go there. It's MY experience - I state that all over the place and every single family here has a different experience.

Yes - my daughter has a serious injury with serious implications. And anything I say or write about it shows that aspect of it because I DON'T KNOW ANY OTHER EXPERIENCE.

Don't want me to give you any advice? Then don't ask for it. But if you pose a question - WHAT DO YOU THINK ABOUT THIS? then I'm going to tell you what "I think".

Rather than arguing about this why don't you spend your time more proactively doing something more positive- like something for Awareness? Why don't you support this organization? You come here and use their message board for free. Ever think of giving anything back? Awareness committee has been asking for Personal Dedications for the special Outreach publication for weeks now and almost no response? What's that about?

Continue on with this topic as long as you wish. Talk about how terrible I am, this board is, the doctors are, the lawyers are, the surgeries are. We don't care. You're not going to stop any of us from continuing on, doing our work and helping the families.

Sorry everyone:) But Francine, YOU GO GIRL!!!!!!!!!

I have been reading and kept my opinions to myself. Everything has gotten so far out of hand. I for one, am GRATEFUL for any information I get. I have learned more off of this message board and from chats and injurednewborn.com than any dr. could ever teach me. What I have learned is that we are all different. There are no 2 children on here with exactly the same injury or recovery. If there are topics posted that I don't agree with I don't read them. I skip right over. Francine remembers when people go for surgery and asks about how everything is going. Not many people do that, including myself. I can never repay UBPN for all of the information and support I have gotten. My family uses the site to help them understand and injurednewborn to see pictures of the next surgery for Kelsey. I guess what I am trying to say is that I appreciate Francine and UBPN. THANKS to everyone who VOLUNTEERS their time and effort for all of us to be able to come here and not feel so alone.

I second that. Ditto, you are an awesome person, Francine. Yet we all are for what we do for our kids. I agree, in all of my proactive choices for my soapbox, I would like to do more and see more done by others. C'mon everyone, time to chill, sometimes we get too stressed.
(((((GROUPPPPPP HUGGGGG.))))))

I would only like to say a couple of things
I think you should ALL remember what the U in ubpn stands for - UNITED there doesn't seem much evidence of that here.
also Nettie has a point, in the words of a song by Ronan Keating ( Irish singer)
"you say it best when you say nothing at all"

I don't usually post, but I try to keep up with what is going on. This board has helped many people vent their frustrations. While I am not one of those people I can relate to those that do. I cry and get angry with them. Everyone has different opinions and beliefs and in todays society we need to learn to respect and honor them. We may not agree, but we don't have to attack the person who is posting. For people who get advice who didnt ask for it, I think it could have been given unintentionally. The people on this board are caring and know what you are going through. I think they want express their empathy and share how the got through things. There are different severity of injuries and not all advice applies, just disregard it. For parents with mild injuries CONGRATULATION!!! I wish I could say that about Katie. Not every child has the same needs or lifestyle and I hope that noone tries to imply that. I wish that everyone could remember why this board was started. So we could share and vent and cry and laugh. We are supposed to be a "family," so why cant we accept each others differences. I hope I havent offended anyone, if so I apologize.

Wow Francine, I've been trying to figure out where your getting tarred and feathered here. Most of these posts are in defense of you. I always hear you refered to positively, not just here, but all over the web. Nettie simply made a suggestion that maybe we can simply offer a pat on the back type of support when called for. She also made comment of what a good job she thinks you've done with BPI awareness and support. Pam

This is for anonymous Guest. I was not speaking on behalf of UBPN; I am not on the UBPN executive board. I'm just a mom who organizes picnics, disseminates information to those who request it, and advocates awareness in my state. From my understanding, the ubpn board serves all the bpi community. However, I get the impression that some who post here don't think their needs are being addressed because so many families have children with severe injuries or who chose surgical intervention. Whether someone devises a separate board for families who do not choose surgery is up to those who want to create such a board. I think the ubpn message board is fantastic; I don't think it's lacking but again, I fall into the category of a parent of a child with a severe and permanent injury. But, if some don't think it offers a balanced view then they are free to create their own board. We can all do as much as we want to help others in our community. I'm sure, however, if one posts here concerning a child's mild injury there will be those who respond according to their experiences. Thank you for expressing your opinion. We're all entitled to it!

It saddens me to think people have to obviously find fault in everything. I think this website is the most wonderful place. I have come here to learn, vent and share. I have learned more here than I would have anywhere else. Francine has helped me on numerous occasions and I kiss her for that. Where would we all turn without this website. You know you will always find someone with a similar situation who can offer advice or an opinion or at the very least their experience. This website is my sanity. Whoever is not happy with what they find they should obviously stay away. But I am sure at one time or another everyone of us have found comfort here. Keep up the good work.