am I the only one....?

[Carolyn J]

Hello everyone,
GOSH!! I sure do hope everyone comes to 2007's Family Camp on Labor Day weekend 2007 somewhere in Washington State. [Site to be named later in 2006 by Board of Directors].

Just think what a wonderful Family Camp we'll have!!!
I'd LOVE to hug everyone who has posted on this Topic!
You are ALL terrific & I learn sooo much from each of you.

Watch for notices on UBPN's Homepage...
Love ya'all all ready.
Carolyn J
Adult LOBPI

[Ginne]

Hi all it's been awhile.

Rachel, David, Cindee and all the "null" or guest posters.

This is why I love this site. I get to 'meet' different people with divergent views. I rarely (IMO)come here to whine and cry. I come here so that I can pick up hints and more importantly LEARN!

Let me share some of what I have learned from the older (but not by much) OBPI adults:

1. that there is ABSOLUTELY NOTHING that BPI kids/adults cannot do if they set their minds to it-- or even if they dont!(Thanks Brit & Amy!!!!!)

2. I have to allow my child the freedom to try ANYTHING and I do mean ANYTHING that she wants whether I think that her injury will allow her to or not. (After all, how will I know unless I let her???)

3. The only guilty party in this injury is IGNORANCE!!!

I actually have a list on my harddirve about all the things I have learned, I will not post it here because it is too darn long!!!

Missy, my youngest, is the one with the injury but is my daredevil. She will be 3 next Sunday. I had never heard of this injury until her delivery and if not for this website and the adults and other parents (and those "kids" that are now posting) I would have been mired in misery thinking that nothing was possible for Missy, when in fact EVERYTHING is possible.

Thank you to all for letting us know that!

Ginne, Jeff, Nikky (10) & Missy(almost-3)

[B.V.]

Rachel,
The mother on the Dr. Phil show is a wonderful, awesome, person who frequents this board and who does a ton of work for brachial plexus awareness. She opened up her heart and showed a lot of guts to go on the show to help prevent future bpi's. For you to judge her based on that episode (which is edited for Dr. Phil's purposes) and then plop on this board and make such bold statements shows two things: 1. you're young, naive and impulsive and 2. you might have some anger issues which I hope you learn to deal with. I wish you the best with your injury but I also hope you can exercise better judgment and feel the positive energy that others can experience when helping each other. It's not about dwelling in our sorrow, it's about education, encouragement, and friendship.

Debbie (mom to Amy 3 ROBPI)

[brett]

Debbie,
I havent seen the doctor phil episode and i dont know the mother so i am saying this just based on the post above! You just did exactly what u accused rachel of by calling her young naive, impulsive and with anger issuies. she expressed her opinion right or wrong. sure she may have judged the mother but u just judged rachel.
just something to think about??
if being young, naive and impulsive makes us half as strong as rachel! im keen on it!
anyways to go on the doctor phil show and raise awareness is well done!!!

[katep]

Brett,

I think the point is that the mom on the Dr. Phil episode was *not* in control of how she was portrayed or edited. Rachel is representing herself in this conversation

Excessive anger about how other people feel is usually a sign of unresolved issues. I don't think it was out of line for Debbie to point that out...

Kate

[brandonsmom]

LeAnne,
I just wanted to let you now that Brachial Plexus Injury is Not a birth defect but a BIRTH INJURY.....PREVENTABLE in a huge percentage of these cases !!!

I think the point of "NEEDING" a support group and having one are two different things. When I Came to these boards 7 years ago, I can under the recommendations from my local support group in San Diego where my child was needlessly injured.

I came here back then to find out why the doctor that I took him to would want to amputate his affected arm when he was two weeks old. I got out of there as fast as I could. His theory was that there was nothing that could be done and that his arm would never be any use. THat is what brought me here. Now anyone that can tell me that is not a good enough reason to need help, can tell me that, I think I have a viable argument.

I frequent these boards to help any other parent who might come against this same quack.....but eveyone has their own reason for being here, that was mine.

It is really important to realize that people here come for a variety of reasons....my main one right now is to help others.....and to hear what the adults have to say aabout a particular problem that my son may be experiencing at the moment. I think the anger here comes from doctors (DELIVERY) who repeatedly lie and cheat their way around the system and the ones who repeatedly hurt our kids.....
Remember #1 THAT BPI IS PREVENTABLE
Remember #2 DOCTORS LIE, CHANGE RECORDS and the such to make it look like our fault when it isn't.
Rember #3 That everyone here has a right to be here and deserves the information we have to offer !!!

Gayle mom of Brandon ROBPI

[RachelMadrigal]

I feel like I'm being slightly misunderstood - with good reason... I understand I have been expressive. Let me explain a few things.

The Dr. Phil show was great, in that BPI was mentioned on TV. HOWEVER, what made me so mad was that the mother ADMITTED that her relationship with her husband was beginning to fail because of her obsession with the injury. She also ADMITTED that she was growing distant from her other children because of this. SHe spent ALL her free time doing research, joining support groups, starting her own groups, and feeling guilty because of it. Obviously Dr. Phil didn't approve of the "obsession" part of it - that's REALLY what the show was about.

I was outraged at that because the mother did NOT need to be that way! I'm not saying my parents are perfect people, but they just decided to love me and treat me equally in the family regardless.

I was mad at the mother because I hurt for the child. And I'm sure that other BPI's on here will agree with me. It feels TO US... (perspecitve, here)... that if you constantly feel the need to "fix" us, then we are broken in the first place and something is wrong with us. Seeing that it can only be fixed to a certain degree, those BPI's who spend years undergoing surgery - only for a limited result - will always feel like something is wrong with them. Can it be "fixed"? Kind of, but I don't think that doing a ton of surgeries is the answer. Doctors may think so... and while it is important to listen to the advice of your doctors, they are concerned with the physical makeup of th human body, not always the emotional and spiritual side of a situation. That's not to say they are insesnitive, (I have a great relationship with my doctor) but their JOB is to work with the BODY - not the soul. When I was born, my doctors were wrong about:
-My mother probably couldnt have children
-I was going to be mentally retarded
-My arm needed to be wrapped up
-I would never use my left arm
-I would have trouble learning to walk

-THE LIST GOES ON!!!!

Like my dad mentioned, kids are very resilient. The human soul can overcome whatever obstacles are in its way - whether or not there are physical limitations. When kids don't THINK about being "broken" or "limited", they will do what they want, regardless of what "the experts" say. "THe experts" also said things like Isaac Newton was stupid - they flunked him in math. It is no different today. There are a lot of things we DON'T know about ourselves - and we are still learning. Science doesn't always have the answer.

My left arm, although I have pretty much ignored it, has given me some character that I would not trade for anything. It's something unique about me - it has made me chose my OWN way rather than just doing everything everyone else does. Some may interpret that as isolation - others call it leadership. If I could "fix" my arm, I would NOT choose to do so at this point.

Hope this helps a bit.
Rachel

[admin]

"The human soul can overcome whatever obstacles are in its way"

Not all souls can overcome things or overcome them easily. Some souls are very sensitive. Some souls have a hard time of things and some souls have an easy times of things. Some souls can figure things out and move on faster and some souls move slower. We are all such different people. We each have a different experience and a different response to the experience. Please try to find a way to honor other people's experiences and responses even though they may be unlike your own. We're all just doing the best that we can.

[richinma2005]

Hi Rachel,

The Dr. Phil show brought you here and hopefully many others who first thought they were alone with this injury. Some who may not have known there was a support group for those who need to just talk about it, or for others seeking out information about what has always been down-played and given excuses of it is just an arm and you will be fine, live with it. Hey it gives you an opportunity to reiterate (like many adults already have) to let your kid experiment, grow up and do the things they want without limitations. We all want to see our kids succedd. Well obviously they will live with it and do quite well I may add, as UBPN has written numerous success stories about an Admiral in the Navy who was born OBPI, about a collegioate softball star who was recruited to pitch for a college team. UBPN's Outreach magazine tells of these stories and of stories of success from our general population. There are all sorts of inciteful looks at this injury from kids, adults, mothers and fathers, and I can tell you most of the people I have met do not feel sorry for their kids or themselves.

I personally know the mother and family that appeared on the Dr. Phil show. She is a determined woman for her family. She is very close to both her children, and her husband. Dr. Phil knows how to make things look very dramatic. Her child is a rambunctious kid with no limits. He does soccer, karate and swimming on top of therapy BECAUSE it helps him, and he loves to play sports.

She has done alot of research as many of us have on the possibilities of natural progression of the injury and what surgical options MAY provide. My daughter had surgery too. She was only two, but it provides her more function. Not because we wanted Fix her, but to provide more options for her. So she grows up having a little more mobility, a little less potential for pain due to a improperly formed joint, and hopefully a little less overusage of the unaffected arm. It is something we thought long and hard about, and are happy with the choice we made for her. There is absolutely no reason for anyone to come to these message boards and question why another family did one thing while someone else did something else.

Bravo to you and your family for stating your convictions about your situation, but to say you were outraged at the mother on Dr. Phil is not something I understand, since you really cannot fathom this woman's reasons for going on the show in the first place. She is outraged that people don't talk about a preventable birth injury, that OB's are blaming the mother's own endogenous forces for the injury, rather than taking steps to acknowledge their own inefficiencies. The mother wants more people to realize that steps can be taken to avoid the injury. Did you know that this injury isn't so rare? That almost 12,000 kids every year get an OBPI at birth? That a majority of them could be prevented? I think FIX is the key word that is troubling me. The injury can't be fixed. The result iof the injury manifests itself that causes secondary injuries. That is what the surgical interventions try to avoid, So the surgeries and therapy are meant to prevent further injur(ies), while providing a little more function. If my daughter had a learning disability, like dyslexia, I would also try and provide therapy to help her learn to read and write. If she had vision issues, I would try and give her options of glasses or contacts so she could see better. I am not fixing what is wrong, but providing something to make her life a little better. That is what parents do. And for this injury, sometimes, that may mean not doing surgery.

I also have thought about what my daughter would be like if she wouldn't have been injured. I agree, that it is part of what makes her. She wouldn't have been exposed to as many people at a young age, she may not be as epethetic towards people with differences. She may not have as much determination to overcome what is easier for others. I love her for who she is and cherish every accomplishment she makes, just as the Woman on the Dr. Phil show does for her children.

Watching a TV show to determine a person's personality is kind of like reading one chapter in a novel to determine the main character. You would never truly define that character without reading the entire novel, and I easily say you have not portrayed the woman from the show accurately or fairly.

Hopefully this board will give you a perspective you haven't thought about and hopefully, you will continue to provide your perspective.

[Kimberly]

Well said, Rich!!!

Kimberly