United Brachial Plexus Network, Inc.

Good discussion here! I can't speak for differing opinions 'across the pond' about being the parent of a bpi child, because I'm not one! Check the post 'If you had your chance' on the adult obpi board, those guys mostly feel the same as I do about their recovery despite our different nationalities, Carrie's post in particular reads almost the same as mine in this thread, she's American, I'm a Brit, our injuries are very different, but we feel pretty much the same about this. Hope you don't mind me mentioning your post Carrie :0) I do sometimes worry that older children or newly injured tbpi may read the posts where an unrecovered or untreated bpi is described as a devastating and awful thing, please remember who might be reading, sometimes I feel just written off when I truly do feel fine about my life as do most of us long term bpi. It's become who I am and so it hurts when what I consider a valid life is just dismissed. Thanks for the emails to those who mailed me :0)

Re: Experimental surgery? francine Posted: Oct 23, 2002 8:16 AM Reply

Francine,

"thank you for sharing where your mindset is and why... and just know that others might be in a different mindset than you are in and that's ok."

I never implied that it wasn't, did I? I often get the feeling that other's feelings are not as accepted here if they are not in the majority. People need to practice what is preached. I feel that my feelings and MINDSET has been diminished because I don't live this and breath this.

"Everyone still needs to be supported at whatever level they are at."

GOOD IDEA. Wonderful words to live by.

"The concept of having a child that has a BPI might be the biggest thing that a person has had to deal with in their entire lives, it's HUGE for them and should not be diminished because someone else sees things differently."


I find this hard to believe and if it is the BIGGEST thing ever to deal with our entire lives, than we live in bubbles. I am sure it is HUGE to many, that is obvious here and if it is not perceived that way by someone visiting here, one has to be an idiot, of which I certainly am not. I never said it wasn't huge to others, just myself. I was simply SUPPORTING another's viewpoint. Isn't that what we do here. SUPPORT EACH OTHER. If it is not, let me know.

"In my experience, oceans between us do matter."

Let me clarify something, I NEVER said BPI was the same all over the world!!! I said, I beleive BEING A PARENT and the feelings associated with are the same.

"Even within UBPN where Awareness Week was an international effort for the last two years - it became more of a national effort this year because of differences that have to be understood better."

Funny thing, on our other BPI message board there are no oceans between us. I don't see the differences as clearly, which I guess I am glad. I see us as parents of children with the commonality of a child with a disability that through sharing ideas over oceans we can live easier with BPI. That is what this is, living with BPI.

"Everyone's mindset and decisions are based on how they view the scenerio. We each view it differently and that's great that we do because we bring of all these viewpoints and experiences to this post."

How true, thanks for your insightful comments.

If I read Francine's Post Correctly, she didn't say that BPI was different here than in the UK she said that these issues are different...

1. Insurance vs Scoailized Medicine

2. Legal systems

3. Etc.

Of course the injury is not different the way they handle the injury is....I am sorry for being one of those parents who feel this injury is the worst thing that has happened to her. No I do not live in a bubble, thank you. Before my son was born I had been through my mothers death due to cancer, the loss of all of my grandparents, my son being sexually abused while his daddy watched, a divorce, 5 1/2 years of no help raising my kids and no child support to help with money issues, and then met my prince charming and thought life would get itself back together.....then my son was born, yes, he almost died and I am gald that he didn't, but that doesn't make it easier. He is now four and I have since lost my sister to suicide, my dad to this nasty injury....I didn't have the perfect atlete for a son, so he was no good.....am I bitter....damn STRAIGHT! Some things in life are not as preventable as BRACHIAL PLEXUS INJURIES.....but some people in the medical profession like to hide behind the fact that these are PREVENTABLE INURIES. No, I am not as bitter as I once was. I do not have to have a box of tissues by the computer everytime I come on this board...but I do still have feelings and I will have these feelings for a long time....BRACHIAL PLEXUS INJURIES ARE NOT THE WORST THING THAT COULD HAPPEN TO OUR KIDS, BUT IN MY OPINION THEY ARE ONE OF THE MOST PREVENTABLE THINGS THAT HAPPEN TO OUR KIDS !!!

If you re-read my post, at no point have I implied that these injuries are not preventable.
They ARE preventable, and I spend approximately 6 months of every year working towards training staff in methods to avoid injuring children.
That's what has helped me to come to terms with my son's injury, one of the other things that has helped me come to terms with my son's injury is looking at him as a normal, healthy 11 year old boy, doing lots of activities that I thought he wouldn't be able to do, and accepting that he is a boy with a brachial plexus injury, not a brachial plexus injury with a boy attached.
yes it did take me a long time to come to terms with it, and throughout his life at important, life changing stages, I revert back to all the feelings of bitterness and hate for his injury.
I don't like being in that place, for me it's a destructive place to be, so I choose not to stay there.
Those are choices made for me and my family, I know they don't apply to everyone, I hope I never insinuated that they do.

I think Nettie was saying that if a new person is visiting this board and cannot tell by the posts that BPI's are a HUGE deal to many of us here then they would be an idiot. And the living in a bubble thing was her point of view about how she would feel if she felt BPI's were a HUGE deal. ???

I have 4 beautiful healthy children, a very supportive husband who is a great father, I once had a career until this injury took that away, we are a very happy family that likes to do things together. A BPI is a big thing to me. One of the hardest most difficult things that I have ever had to deal with. But I can assure you that I do not live in a bubble. Yes I do live and breathe this injury but my life has not stopped. I am dedicated to help put a stop to this injury with awareness and help my son achieve the most movement possible.

Like it or not bpi is a huge deal otherwise no one would post on this board... nor would they be researching the subject...

As for new people, many have been helped by finding this board. It a shock to find out all a bpi injury entails even if it is considered a mild injury. Does it become overwhelming after a while -- I am sure it does for most parents trying to live a full life and fit in all of the therapy and doctors visits. Is it a good idea to put ones head in the sand and pretend it will go away—NO. Obstetrical Brachial Plexus injury is the one that I have been dealing with for over 60 years. Most of my life I ignored it or pretended it did not exist. Could my Mother ignore it? Not on your life she had to devote a major portion of her life to getting me to move and fighting me to keep moving and to motivate me she bore the burden. And thank God she had this drive for me when I was too young to have it for myself. I am sure now that my arm was the focus of much of the last years of her life. Her devotion and constant care is what made me the independent woman I am today. She gave me the ability to take care of my self. To see my self as a whole and fully functional person with the power to do anything I set my mind to. I am sure at times she was accused of being too focused on me and my arm. (FYI recent tests reflect injury to C-5,6,7,8 & T1)

This website is the place for those of us who live with bpi injury to focus, share and to exchange the good and the bad and to vent a little. It is a place to express different view points and share information on an injury that no one seems to have done much quality research on.

Focusing on this site does not mean that we live and breath bpi, it means we have a place to let the steam out if need be.
Most of us do not live in a bubble certainly I don't... I am obpi I had my first reality check in the delivery room. I lived 60 years without any information or support and I made it! But now I try to support others and work on prevention. I pay the price for neglecting to take care and would like to see the younger generation of obpi know more about their injury when it is time appropriate. We all need to learn how to prevent secondary injuries. Remember and obpi baby is long term at the age of 20 and that seems to be when overuse starts ( many report rotator cuff problems and shoulder and neck and back problems) but because we are young and active we fail to notice the symptoms until we are no longer able to put our heads in the sand. As a result of ignoring our various secondary injuries I have met people much younger then I am who seem to suffer more from secondary injuries. Many do not want to post for fear of scaring new people and new parents... that is not always fair to those who need a place to speak... so they do it via e-mail....

This was a very good talk on experimental surgery...
However there were some statements that could be misconstrued as hurtful and unkind...
Statement like it’s only an arm… I have only heard this from people who can use both arms quite well… BUT it is only an arm and I never thought of my self as a person with an injured arm… just as a person.
I would also like to add this thought.
The disabilities I now suffer from are not related to my "age" and are not part of the normal aging process. They are a DIRECT result of my birth injury and it took me 60 years to realize it and tons of medical tests to prove it. I think that qualifies me as a long term bpi. I never think of myself as a disabled person nor do I think of my life as a disabled person's life. I am active, healthy and paying the price for overuse and denial along with benign medical neglect. I rarely take even an aspirin. I still can’t bring myself to apply for a temporary disability parking sticker to protect my arms I would have to admit I am disabled to do it. So I guess I am still in some form of denial… but I will come to terms with this in my own time.

When I am on the message board I do focus on bpi.
This is the place I come to learn to share and to focus on something that most people do not understand. This is the place for sharing and focusing and by doing so it will make it possible for better care, prevention and better immediate care. With information sharing here we can better help when someone is recently injured so they do not have to research on their own or count on chance to get a physician who can help them.

This is my personal view on the bpi I live with and the message boards in general.
Kath

maybe some day bpi won't be huge
but right now it's HUGE - many times overwhelmingly HUGE

it has to be huge when you are in post surgical rehab and doing other modalities to stop other secondary issues from happening....every day has bpi in the forefront

wish it were different but it's just not in the cards for right now