I think we need another forum to UPBN

[Nettie]

I am saddened by the fact that Mandie left this board. I am saddened that there is so much anger that gets transferred through this board. I think we need a forum for surgery message board and non-surgery message board. Or Severe BPI, Moderated BPI, Mild BPI or whatever to distinguish the classes. Francine was right that those of us who do not deal with severe injuries do not know what it is like. But I do get scared when I read about how we have to treat these kids like China dolls. Some children with severe injuries I think that is so, those that are not, it is not so. My son is 4, has a moderate injury, has not had therapy other than home ROM for one year, sees the BPI team once every 6 months, surgery was not recommended x2 and he swings like a monkey from bars with both arms, climbs like a squirrel, dresses himself and undresses himself, has only one grade of strength difference in his hands and arms and is an absolutely delightful little boy who just looks a little different and carries his arm differently to the trained eye. His therapy is his everyday life. I was at a picnic with an OT with experience with BPI and she had no clue he had it until I told her he did, then she had trouble picking out which arm. I have felt as Mandy has at times in the three years that I have been on this board, I feel that we have a tendency to look for an opportunity to offer advice and maybe we should just say congratulations or great to hear that or hang in there or just I understand instead of I think you should do this or that, or check out this agency or this program or this service or product. I am going to sum my feelings up the best I can with a recent analogy. Please be respectful of my feelings. My best friend of 25 years was crying one morning on our daily walk about her ex-husband showing up at her granddaughter's pre-school graduation and not acknowledging her(she left him, bitter divorce)and of her sister and brother not liking her too much and avoiding her(there is lots of history I don't have time for) and I told her gently that she is a wonderful person, loving, caring with everyone's best interest at heart, but there are times when people do not want advice, judgement, or opinion, just support. Yeah, she wasn't really pleased with me and it hurt alittle, but you know what, we are still friends, because we accept each other as we are. That is how I feel about this board. Let's just support each other and offer advice and opinion when asked for. Thank you for listening.

[jennyb]

I think that's a really good idea Nettie, surgery or non surgery board for the families I mean. I don't think you need to seperate into 'moderate or severe' because some of the people who choose not to have surgery are severely injured and some who choose surgery are moderate, everyone heals differently or has different expectations of what is acceptable as a result of a bpi. That way those who want to post about alternative therapies or even the idea that a non functioning arm or a less functioning arm (as most of the adults posting on the other boards have, tbpi and obpi) is actually ok can do so without getting attacked. Thanks for your post, you are so right about the fact that people really need support, not always advice, and I suppose we can all only advise from our own perspective and we aren't doctors, our experinces may be helpful to others who share our mindset, it doesn't mean there's a 'right' and 'wrong' way to deal with this injury.

[Carole]

Having been around 2 plus years I have seen these discussions come and go- it has been so respectful and peaceful for a long time on this new board I hope we get back to that. No amount of boards could ever end differences of experience or opinion. Take what you want and leave the rest- this board has always helped me more that upset me so I go by that. Blessings to all.

[admin]

Maybe those who hurt others unintentionally through tactless remarks need to learn to say sorry with some grace. An apology doesn't mean admitting error, it's a simple human courtesy.

[marymom]

its good to wait before posting sometimes
ofcourse I wouldnt be able to give that advice if I hadnt of NOT WAITED more than my share a few times, lol, and said things that were spiteful- so actually I can understand that people are just acting out on their fears and emotions which,
been there done that!
but it does hurt, especially when they are directed specifically at you-
breathing 1 2 3
as far as seperate boards are concerned, thats a thought...as Francine mentioned, there are different mentalities, I think she used the word ideologies that we are dealing with, FOR ME, its not about severe and less severe injury but about recovery and how you obtain it-
and its not about right or wrong, good or bad because there isnt any such thing, surgery isnt wrong, neither is alternative stuff a pack of lies,
it either works for some or it doesnt,
Louise you mentioned the 12 step program, I work a 12 step program and have used it repeatedly in the recovery for Max, recovery for me already is a lifestyle, I just extended it to Maxs injury

[Nettie]

I feel that the TAKE WHAT YOU WANT AND LEAVE THE REST mentality is fine and works for many people, however, many times it does not. Have you ever read "Men are from Mars and Women are from Venus"?, it talks about men wanting to be the solvers and in doing so often offer more advice and opinion on solving our issues and we get mad because we just want someone to listen unless we ask for assistance. I remember telling my husband one day about a particularily bad day I was having(of course, I had told him all about why he is the way he is after having read the book). And he said, "Is this a moment where you want me to tell you what to do, or to just listen." At the time I thought it was pretty funny and still do, but really these boards are no different. Whether the relationship is woman to woman, man to man, woman to man or computer to computer, we all want to be listened to and not be given opinions based on someone else's experience unless specifically asked for. I have seen alot of people ask for help and get it and that is great. I hope it has helped them tremendously. I have been helped once or twice myself, but I have seen an awful lot of opinion and you should do this, especially with new people. Let's keep it simple, welcome them and wait for questions. When we give opinions, let's quantify our child's initial injury. I have to honestly say that when I joined these boards a few years ago and I was introduced to Maia's website, I was scared sh**less(sorry) until I realized that Maia and many others highlighted through pictures had severe injuries. Don't get me wrong Francine, you have done a remarkable job on that website and it is full of wonderful information and useful for a situation similar to yours and I know and feel your passion for education of this injury. It is your life, but it is not many people's. It is a very small part of my life when compared to the whole and it is so, because my son does not have a severe injury. He has not need surgery and is doing well and really looks fine and the untrained eye does not know at this point that anything is wrong. I do feel for all of you that deal with this on a much deeper level and live and breathe it as you need to, but we simply are never going to fully understand each other, and that is what we all need to accept if we are going to end the bickering in the future. So, please do not offer opinion unless solicited. Thank you

[admin]

Nettie, with all due respect, you just offered your own opinion about some more vocal folks here who shouldn't offer theirs! Francine never insulted Mandie. Mandie misconstrued the info. Francine gave her. We're all so sensitive here; we wear our hearts on our sleeves, so to speak.

This board and website is a tremendous resource and this discussion about surgery vs. nonsurgery has been hashed over before. Anyone is welcome to start their own website about mild injuries that are addressed nonsurgically.

Francine, in her defense, is an advocate for families. She spends countless hours helping others. If it weren't for parents like her who put it all on the line with websites, chatrooms, awareness activities, sewing fanny packs for no monetary reward, there would be a lot of families whose lives wouldn't have been improved.

Francine is entitled to her opinion. She is quite respectful here even though there have been efforts to chase her away. I've never met a more compassionate person who does all of this for the right reasons.

I'm very happy your son has a mild injury and has recovered so wonderfully. That is a miracle. I wish all of us knew what it felt like to let everyday life be our child's therapy. I envy your lack of anger at what happened to your child. I can't imagine what it would be like to watch my daughter swing from the monkeybars effortlessly...and not get that sick feeling in my stomach that her shoulder could dislocate this time.

Thank goodness folks like Francine direct their anger into a positive, productive, generous, selfless outreach to others whose lives have been turned upside down from this severe and permanent injury.

If she is to be faulted, it is for caring too much, giving too much.

Respectfully, Karen

[Nicolas]

i feel a lot of frustration in your posts Nettie and i feel bad for you. I understand you when you talk about opinions but dont you think it is unavoidable on a message board to find others opinions??? Poeple come on a board to seek advice but also ventilate!!! I find poeple are alot TCH oriented over here but i dont make a whole lot about it... i take what i have to take and that is it...Maia's surgery pictures terrified me. I could not sleep. We cried and cried all my family cried. But you know what it was not like that at all and the scars where not so "spectacular" sorry for the term but i am frenchspeeking...That day i understood what i had to take over here and appreciate that others take time to share. I dont think you can make your opinions on others sayings but sometimes it is interesting to see what others have to say!!! Goodluck Nettie and Peace!!!

[marymom]

hi Nettie could you please email me privately? mom@bellsouth.net Ill be offline the rest of today but, Ill be back on first thing tomorrow- bright blessings, mary
by the way, I saw absolutley nothing insulting whatsoever about your opinion- just so you know, its safe to email me, no flying cyber plates lol