United Brachial Plexus Network, Inc.

if my guest post went through than ok. i was not logged on
i also know the infamous "dr. phill" mom!!!!!!
she is AWESOME!!!!!!!!!!!!!!!!!!!!!!!
she has researched, published, & volonteered for us!!!!
she needs to be THANKED!!!!!!!!!!!
how many babies did she save?????
how many people saw the show & heard the term BPI?????
did i say she needed to be thanked??????????
it takes GUTS to go on tv & talk about such personal things!!!!!!!
did i say she needed to be thanked?????
i truly admire her strength!
THANK YOU
thank you for helping to PREVENT bpi
thank you for you time
thank you for being a friend
thank you for taking this insult like a true honest woman!
thank you for answering my questions
thank you for listening & responding to my delimas
thank you for all that you do!!!!!!!!!!!!!!!

Carrie, You put that very well. I can see your perspective as far as things being super dramatic on tv - and the coming here and having that same bias assuming everyone is the same here. And I'll admit that is kind of what I did.

And i can understand parents wondering how to handle certain situations - like the classroom example. I am sympathetic about that. I am still frustrated, however, with the idea of constantly tyring to "fix" the "problem." Like I stated earlier, I believe that if kids grow up constantly thinking they are broken, they will never be completely comfortable in their own skin.

I never said the Dr. Phil mom was a bad person - but I can't say I wasn't outraged with the obsession over the injury. It isn't worth sacrificing your entire life for. Like I said, I hurt for the child. This is just a part of life - a thorn in your side - everyone has one. Some are emotional, some physical, some spiritual. Physical limitations are always more devestating in our culture since image seems to be everything.

That's all for now.
Rachel

Rich and Rachel,
Maybe Fix is a bad word, my husband and I wouldn't change Brandon for all the money in the world, but like you said Rich, we all try and improve function for our children that the adult OBPI's are experiencing....Rachel, take a walk on the wild side and go to the adult boards and find out what some of these people experience in eveyday life.....that is what we are trying to prevent....the pain and discomfort of BPI later in life. Gayle mom of Brandon

I've started to reply several times since this post came up but always end up deleting my post. I'm not sure what I want to say will come out right.

We keep using the word "fix". I think what we are forgetting is that this is not something we can ever "fix". We can try to make the most of it through surgeries, PT and the likes but no matter what course of action we choose it will always be a journy. One that often times brings pain, frustration and a great deal of work that shapes us just as much as the ijury does if left alone.

I am not the parent of a BPI child but have it myself. I have two beautiful babies who have issues of their own fortunately not BPI. However, if one of them did I would utilize any and all means in my power to make things as easy for them in the long run. Not because I want to "fix" them but because I want to ensure that they don't fall into the same pain and frustration I'm going through now after spending a lifetime with an OBPI.

I don't want you to get the impression I feel sorry for myself and that my injury is my whole life. It isn't. It's a big part of my life as it's something I live with everyday and being the mother of 1 year olds offers me the challenge of learning to do things "my way" so that I can care for them. I went through no treatments as a child save for a brief stint in PT. However if I had I don't think that it would have changed the way I weathered the storm of having a BPI. No mater what we will always have a BPI whether we choose surgury for ourselves or our children, nothing will change that. Nor does it change the journey (as Caroline so aptly calls it)or how it shapes us.

My father also wants me to add this. "I let my daughter grow up the same way Rachel did. And yes it helped make her into who she is today. But now looking at the pain and threat of loss of not only her BPI arm but also her other arm that she faces now as an adult, if I could go back and push harder and take advantage of some of the surgeries that are now available I would. I know in my heart this would not affect who she would become. But it might make her everyday life a little easier which after all is our job as a parent." My father wanted me to post that to give everyone a perspective that is not heard, the parent of an adult OBPI.

Thank you KISSYGOOSE and DAD !!! I think everything that you said, is oh so true. You are aright "FIX" is not the word, I think we use that as for a term that noone here came come up with. MAYBE the word PREVENT comes into play here again. WE have surgeries to try and "PREVENT" the pain and agony that you now go through !!!! Best of luck to you ! Gayle mom of Brandon 7 1/2 ROBPI

Thank you EVERYONE for posting on this. You have NO idea how much you've helped me today!!

I STILL want to hug each & every one of you!!..How about at Family Camp 2007,Labor Day Weekend? I'm saving for it now!!
Carolyn J
PS..A Big extra (((HUG))) for "Tannersmom"

First of all, welcome Rachel.

Second, I have to say I am a bit upset that you think we as a community need to stop fixing our children/adults. Why? If you had a child with a heart defect at birth you would fix it. You would do whatever it took to make it a good as it could get. It may not be 100%, but wouldn't you pursue the best treatment and options that are the most reasonable? As a mother of 2, I know I would. Don't look at it as we are not satisfied with our child's recovery or lack therof, but rather look at it as we are trying the help our children become all they can be with this injury still in tow. I have an 11 year old son with multiple behavioral issues in special education and I have a 3 year old daughter with ROBPI. Everyday I try to learn more and more about each of their issues in an effor to help them be all they could. Last time I checked, that was what I am supposed to do as a parent.

That being said, I do agree that there is a distinct line between helping as the parent and obsessing. Unfortunately, being the helping parent doesn't make "good TV" so with fine editing and such, a great parent, wife, friend, support person, etc. can easily be portrayed as crossing that line. When Lisa was on the Dr. Phil show, she knew she would be portrayed in a less than fashionable light. She knew this yet still went forward for the benefit of her family and the greater BPI community. I think this would be a great time to thank Lisa...thank you again Lisa. I know Lisa on a personal basis as well, and she is a very driven person who is very loving and attentive to her family in all aspects possible. Unfortunately, that is not portrayed in the short segment on Dr. Phil. Who'd watch it if it was?

Next, I think that opinions are marvelous. They are what make the community what it is. I think though that this community needs to be more supportive rather than not. There are so many new faces that arrive to this forum all the time. We wish to support them as well as the regulars that post/read here. If we focus more on negativity (in whatever fashion it is portrayed), then this board loses credibility, closeness, and the reason it was originally founded...support and knowledge. That's something that I don't wish to happen.

To this day, my daughter hasn't really asked why her arm is the way it is. She has made leaps and bounds with her therapy, one secondary surgery, splints, and the love we support her with. If we had stopped her therapy when she was about 24 months old (as happened in your particular situation), then her arm would be no better. She in the last year has gained so much function. She continues to makes gains, small as they may be. I continue her in therapy and play acitivities in the hopes of making her never lack for anything. It's my job as her mother...it's my priviledge as her mother. Keep in mind that each person's injury is their own. No injury is the same. No treatment plan should be the same. It should be very individualized coming from a multi-disciplinary approach. I am very glad that you appear to be very well adjusted to your injury and seem to thrive as stated by your father. Give the other families here the chance to allow their children to do the same. They know their child best as your parents knew you better than the doctors when you were born and seemed to have made the right decisions for you thus far.

You are correct that it is not the mother's fault in any fashion. You are NOT correct that this "just happens" sometimes. I am a labor and delivery nurse who has seen injuries occur in the past. I have done so much research on the topic of prevention that my head spins. I educate the nurses, OBGYN's, midwives, and pediatricians that I work with on a constant basis about prevention and treatment. I just did an inservice on shoulder dystocia last week at work. I will be presenting at the National AWHONN (Association of Women's Health, Obstetrical and Neonatal Nurses) conference in Baltimore this June. I serve on the Advisory Board of the UBPN. These injuries are preventable and don't "just happen."

Good luck with your endeavors and I hope you never experience some of the secondary issues that many of the adult BPI community seem to experience.

Tanya in NY
Amber's Mom, ROBPI, 3 years old

You are so right, my son will be 2 next month. Let me tell you, nothing stops him from doing what he wants to do. If he tries to pick something up and fails, he will look for a different way to do it. If he falls down, i pick him up and brush him off and send him on his merry little way!

Yes, my son was injured at birth, but its not the end of his life. We are going to raise him like we do his big brother. Normal. But we are also making sure his medical needs are fulfilled, so that he has every opportunity to get his arm to work better. Even if there is nothing the doctors can do, he will make do with what god gave him.

Lisa

My motto is Judge Not and Least you be Judged! Kindess and consideration always help when getting a point across but the point best made comes from the heart based on personal experience. Hard to judge that .

Lenni

I guess I'll jump in here...although I'll probably regret it...
I am so angry. Rachel, I am happy for you that people don't even notice your arm. But when your dad said your injury was as "bad as it gets" and you have "only" 50% usage I about went through the roof, what I wouldn't give for Lizzie to have even 10%.(not that I am trying to minimize ANYONE'S injury just point out a different perspective based on a different injury) She has had 3 surgeries and that is where we are at. Someone has already brought up the point that everyone's injury is different. I don't need to go through the list to prove how "normal" she is, but there are differences,no matter how "normal" we treat her, plain and simple. We don't treat her any different than our other children (except of course when she is crying because she keeps dropping things because her hand won't help, her words). We have seven children and they are all different, each with their own struggles. This happens to be hers but it does not mean we should ignore it. I have a daughter with cerebral palsy should I treat her like there is nothing wrong? No therapy or intervention to build her character? I don't think we as parents should have to apologize for making sure our children have every chance. If my son was failing math I would do research and maybe hire a tutor or have him evaluated for a learning disorder. I would talk to other parents who had dealt with their kids and math problems.
Every one of the parents has been so gracious and kind listening to your ideas. This board is an amazing place to come and get information and support and if nothing else, their attitude towards your attack should prove their good motives. I imagine that you talk to your girlfriends about guys and make-up and school. If you have a support network for that don't you think it's ok for us to have one here?