United Brachial Plexus Network, Inc.

I am voicing my opinion cuz I have one to share!
I don't like the idea of having a seperate surgery and non surgery board. I like all the info in one place... and that it is easy to find. With seperate boards that means more time away from my kids while trying to get info.

Sometimes things get said that hurt my feelings and I have to deal with that. I just try to remember that even when people say things that hurt me... most often it is done without intent. I also try to clear things up with personal e-mails. Sometimes we just add fuel to the fire when we post our responses or at least I feel I would if I posted sometimes.

I am grateful to these boards and the people I have met through them. I am more informed about my choices I am making regarding my son's injury!

Blessings,
Kristie

Wow, I hope everyone is OK! I am not going to say allot because I obviously missed something, but I do have a few things to say!

People it is all good here! If others wish to create boards or whatever that is good too! To each their own, remember?


Thinking of you all!

Lenni

This is intended for Francine or whoever else really cares. First of all, reread my post and you will find positive. You only read negative into it. I never intended to tar and feather you nor was this post intended solely for you. I did use your name and for that I am regretful. But haven't you been the one most pro-active? I am sorry you felt the way you did. Feel free to voice whatever opinion/advice you want. I think that this board at times becomes a private club and parents are chased off when they feel attacked. I for one am not leaving. I for one felt the jealousy(sp?) and sarcasm in not yours, but other's responses, that my child does not have a severe injury. I take alot of issue with your commentary about me doing something for awareness. You don't know what I have done in my local community to raise awareness and I resent the fact that you think I am not pro-active. I have done alot and for your information I am the one who originally had the idea to contact 20/20 and I emailed them immediately. I have talked and talked and talked about this disability with anyone who will listen and I am mad that you would imply I have done nothing. If you feel persecuted, then that is your feeling and you own it and I can't change it. I have never slammed any doctor, lawyer, hospital, treatment options chosen and I resent being accused of that by others. I feel I have supported others and personally email with several people who are affected by this injury to offer continued support and an ear. I adopted my son with this injury, how many people do you know would have done that???? You all need to know that no one else wanted him and he was considered unadoptable. So, I do have a different mindset than others and I am lucky that he has done so well. I thank god everyday that I have him as I am sure you all feel the same way about your children. I do not love him any less because he is not biological. And until someone has been there they do not and cannot understand that feeling of taking a child with an injury that has very little information about it and loving them as fiercly as if he were born to me. So, now I feel better. Keep up the good work Francine, I am sure it is appreciated by many and will continue to be. Thank you for your attention.

Nettie - my post wasn't addressed to you personally- it was a commentary on everything.

I don't feel persecuted although some people seem to feel the need to try and persecute me. I don't even take any of this stuff personally any more - it comes in waves and its expected.

I don't know what you do for awareness but I wish you would tell everyone because when one person stands up and says - "hey I did this" then other people will find it encouraging and might want to follow your lead. After awareness last year we asked for input on what everyone did- we had an input form to fill out (it's still there) and we didn't get even one reply. So - everyone - please, it's important for us to know about your awareness activities because it motivates everyone else.

And Nettie - I think it's wonderful that you adoped a child who was injured. Thank God for people like you - this boy now has a life and a family who truly loves him for who he is. It's amazing that you did this.

Keep up YOUR good work- your emails - your support - you awareness activities and taking care of your sweet child.

I appreciate your post.
-francine

Well, I am going to stand up for Nettie a bit here,
lots of people say that there is no need for a "mild" injury or " no Surgery" board, or they say "go off and start on if you want one"
That strikes me as sounding very rude, almost as if, "your child isn't severe so you're not in our club"
Well, have ANY of you thought that some parents feel guilty about posting messages and questions when their child has a milder injury????????
Have you thought that they might think that the boards only deal with questions about more severe injuries and problems associated with them, and so think that their problems are too trivial to post?
This isn't a competition for who does the most work for awareness, it's about HELPING families with children who have Brachial Plexus Injuries- however mild or severe.
Nettie was merely asking a question, and I for one, can't see a problem with a separate board, especially if it helps MORE families.

Thank you Francine

No problem is too trivial to post. And I've seen all kinds of posts - trivial, non bpi, for mild cases and the responses have been great. Every so often somebody will take something out of context but that happens on every single message board in all kinds of forums - it's not specific to our bpi community. Communicating on a message board where people can't SEE your tone of voice really causes a lot of these problems.

And NO there is no competition for who does the most for Awareness. I certainly don't do my work for a competition. But it is something that we are trying to foster in our community. It is also a great tool in trying to help us deal with our emotions and releasing some of our anger - being proactive. I wish more people would get involved that's all. The outcome is usually a great feeling inside. I went to the Ohio picnic and viewed the Proclamations that Karen worked hard at getting (State proclamation for Awareness Week for Ohio) and I felt so good inside- so good for her too. Just to have someone in the 'outside' world understand that this issue is a problem that needs to be recognized is a huge thing. Awareness doesn't have to be a BIG thing that will take a lot of your time. Last year we came up with a Pick One List (it's still in the awareness section) that lists all kinds of small things you can do to bring about a shift.

When someone posts a question, the people who answer it will answer out of their own experience. A parent with a severely injured child will answer out of that experience. A parent with a child who was mildly injured will answer out of that experience. A parent whose child has a great deal of pain will answer out of that experience. And a parent whose child never stop and keeps on going will answer out of that experience. The thing that we have to be careful about is to try and remember THAT. The difficulty comes when a new parent comes on and they have no idea what they are dealing with in terms of an injury and in that case, the information that is given should be the 'safety net' version. And this is why we created the page Information For New Parents (linked on the home page here).

To Null... the one standing up for someone else...
I don't have a problem with people wanting a different board... I just don't and I wanted to share my opinion so the people at UBPN would be able to consider it if this topic is something they plan to consider. And I my son appears to have a milder injury.... only meaning that he has not had surgery. He is injured and I am finding as much info that I can to help him. As I stated before if we were to sepreate the boards I feel I would have to spend more time looking to find info I want.. and I would rather spend this time with my kids... I am on the computer enough as it is.

I surely hope that people can understand what I am trying to get acrossed and not feel that I am telling them they are not in my club... this is not my intent.

I also realize that this null person might not be refering to my comments but I am one of the people who have commented against the idea of seperate boards. If felt it was a good idea to let people know my idea is not to offend just to share how a decision like that might affect me.

Again... I wish you..
Blessings,
Kristie

Just a thought, but would you guys consider exchanging your phone numbers and hashing this out, and if you did, what would you say to each other with the person on the other line? It's a little more personal that way and besides you might become even better friends with no misunderstandings left. Good luck.

Patty

Just to clarify here in this household--no animosity, jealousy or envy of those with a child that has a less severe injury that our girl does. Only disappointment that yet another child has been injured, it isn't like kids have it easy as it is. And compassion for a family that will go through a turmoil of worrying about their child. I used to worry that I should feel guilty because I was angered by the abuse that occurred in the delivery room that fateful day as we had our little girl and she almost didn't make it. Some families babies don't. But then someone reminded me it was OK to work through the grief--it may not be THE worst injury in THE world but it is our child and the worst injury in OUR world. So it doesn't matter how severe or mild--we all feel the same way about our chilren. And I don't mind if someone wants to create more boards--I visit them all now anyway (I love to get advice from kath, nancy, carrie, etc...who knows better what our kiddos are going to go through later on)so that will just mean information scattered.