United Brachial Plexus Network, Inc.

I am 23. And I don't feel any pain. I wasn't "fixed" and I am fine. There was nothing particularly "wrong" with me to begin with. Just different. There isn't any emotional pain - for me OR my family. I can only remember a few instances when I was a kid where anyone even NOTICED my arm, let alone said anything about it. Because I grew up in a house that didn't bother paying any attention to it, I certainly didn't feel the need to. My parents realize that they were not at fault for any of this and it has NEVER been an issue. If I could be "fixed", I wouldn't. I like me the way I am.

Nicely Put, Brett. Thanks!

I am 23. And I have never needed to be "fixed" - because there was never anything particularly wrong with me... I have never really had any pain - emotionally or physically. My parents realize that it was nobody's fault and they never dwelled on anything about it in our house. I grew up never thinking anything needed to be "fixed." I knew my arm was different, but I grew up in an environment where nobody cared that it was different. Because my parents never talked about it, neither did I - and even as a kid, there were few kids who noticed or said anything about my arm. If I could be "fixed" now, I dont think I would choose to do that. If I "fixed" it - I, myself, would feel broken because this is so much a part of me. I have my own ways of doing things - I'd need to re-learn everything again. I wouldnt be able to type (I can type faster than anyone I know), I wouldn't be able to do flags, play my horn, do a kartwheel (I do them one-handed or aerial) - the list goes on.

I told my dad all about this site and the comments and he couldn't believe it - he had to see it for himself. My mom was just as shocked. I hope that would be encouraging because you don't HAVE to live with guilt. Others don't. You shouldn't have to either. Parents: its NOT your fault, no matter WHO tries to tell you that it was. Its just something that happens... life goes on. Don't let this slow you down in life. Yes, it can be prevented - and if it can, I suppose it should be. BUT when it DOES happen, life should just be normal for those of us that deal with it - kids AND parents alike.

That is all for now.
-R

I hope you come back Rachel. I have been really moved by your frank honest posts. Your parents should be proud.

Rachel,
I guess you will understand when you have a child and something happens......it is a hard thing to understand for you I am sure, it is probably a hard thing for Brandon (MY SON AT AGE seven) to understand why I am the way I am. not so much now but earlier in his life. OT and PT three times a weeka and then at home therapy every chance that I had. BPI is part of my life, part of my families life. Trying to prevent this injury is one thing....trying to prevent pain when he gets older is another. There are many different degrees of BPI. There are the ones that "FIX" themselves like my 15 year old daughters..the doc was smart enough to break her clavicle and then there are moe severe, and even much more severe. Maybe someone needs to send you the video that I just watched and maybe you would understand more. BPI effects so much more....my father, Brandon's grandfather, has nothing to do with us because my son is not "PERFECT" okay soit is his loss, but this is what this injury does. My son is so perfect that is isn't funny. He holds a special place in everyone's hearts....even people that he just met. Nobody here is feeling sorry for themselves, we are stating our displeasure, sure, but about alot of things not just BPI. I have a ton of "FRIENDS" here that understand.....have I met all of them, no !!! But I have met a few. My husband thought I was crazy, but he didn't live this surgery like I did, he was off in the NAVY defending our FREEDOM, he looks at Brandon now and thinks wow, awesome, this child does everyting every other kid does. He doesn't remember dragging the kids, (I HAVE FOUR) to the hospital for therapy, he doesn't remember fighting with insurance, he remembers none of this.....so for him UBPN is not essential. He also doesn't deal with Brandon when he comes home from school because some kids made fun of his arm and he told them off, but "MOMMY, there is nothing wrong with my arm, why did they say that?" We suffer through everything, not just BPI together and it is a great resource.

Off my soap box for now...
Gayle

Rachel...Consider yourself "Lucky" to have Your parents AND please share when you are in you 30's & 40's and let us know if you don't have any "Secondary " issues on Pain from Over-use of your "good" side like us "older OBPI-ers" have. I mean this kindly,Rachel.

Gayle,
I have never shared the true darkness of my "Life Journey with OBPI"; believe me it is a "downer" but I thrive in spite of it thru all the love , SUPPORT and "Dark Humor" that I have, particularly about my "Iron Claw Hand" I can't ever get close to my hair or it pulls out clumps...Gayle, It's your families loss, not yours;It is Ignorance & denial of the real world that is it's source and it has NOTHING to do with you or Brandon!
Off MY soap-Box Now too...
HUGS,
Caroluyn J
Adult LOBPI
Age 67 & proud of it!

This is Rachel Madrigal's dad

I can relate to you parents trying to deal this !

But let me give you some suggestions on how my wife and I have dealt with this issue with our daughter.

First - some perspective. Rachels injury was as bad as it gets. It renders her left arm functionality about half of what it should be.

Like many of you we also pursued therapy. Surgury as it turned out was not possible (as in most of these cases). It became evident very quickly to us that there were limits to what therapy could actually accomplish.

So we went to formal therapy for about 24 months. Our docs suggested to us to imoblize her arm. This is one thing we did NOT do and we are soooo glad we did. We continued to encourage and work with Rachel and let her develop on her own time frame.

We discovered that there is a limit to what therapy can actually accomplish. In fact, continuing therapy beyond what can realistically be done will do more harm to the child as he/she develops.

You have to ultimately let them grow up and deal with it themselvs. That sounds cold but it's really not. Love them no matter what and live with it with them !

As a parent I understand the desire to fix your childs problems. Even though this does not seem to be fair at the time, God has plans for your wonderful child and things will eventually work out for the best.

Kids are resiliant. They cope and adapt far better then most adults give them credit for.

My suggestion - Do as much formal therapy as is REASONABLE then STOP ! Then work with your kids every chanch you get and give them opportunities to develop on their own.

Although, (in our daughters case) it limits her doing some things. However, it has not stopped her from becoming an accomplished trumpet and tuba player. Nothing was wrong with her lungs ! She types faster with one hand then most of us do with two. It has not stopped her from being a Deans List CSU student. It has not stopped her from getting married last year. She can do practically anything she sets her mind to and so can your child !


David and Cindee Anderson

Thank you very, very much David and Cindee Anderson! Finally some sanity about this injury. So many of the parents here need to relent from anguish and permit themselves and their BPI child to grow.

As a BPI parent myself, Rachel Madrigal's posting was a great awakening for me. She and now you and your wife have offered me the freedom that I have long wanted to just relent from the bitterness and just live life. In fact, my child was due for an post-op appointment for consideration of further surgery and I cancelled it. Before Rachel Madrigal posted I wanted to cancel it; but she gave me the courage to trust my own child as she and I work toward developing her potential.

Nobldy here is saying that our children cannot do things. My son is 7 1/2 and does everything that everyone else does, but my son's injury was also severe. We investigated the surgery route and are very happy with the progress. Our son had nothing, our son could not crawl.....our son has not had any professional therapy since he was two, only therapy at two, but I would not change a thing that I did. To say that we are feeling sorry for ourselves is going a little too far......that is not the case. I did for my son what I had to do so that he could do what he wanted to later in life. his arms are the same length. They he has a slight contracture. DO I resent what I did, NO WAY
gayle mom of Brandon 7 ROBPI

I think alot of us parents want to prevent the pain that Carolyn is talking about. It is common for older OBPI's to experience pain, I don't want my child to be overwhelmed in pain, when I could have done something to stop some of that pain. I will never regret what we did no matter what anyone says. My son still does things that others said he never would.