United Brachial Plexus Network, Inc.

Hi

First off, I am 28 years old and have OBPI and had no idea that such a network was built for people with various versions of brachial plexus. I feel like I am finally not alone. I am overwhelmed by the similar feelings everyone has been going through growing up with it, dealing with the emotions of not being comfortable and learning how to be confident.

I have it in my left arm, chose to not have surgery and everyday discover that this injury can surprise you. I have played the clarinet, and performed on my flag squad in high school. I am a camera operator for my church and take various dance classes. I don't know to this day the extent of my injury b/c I have never seen a professional doctor while growing up. But I am going on to tackle another obstacle....playing the piano with the help of a brace.

I have spent a lot of time reading and one thing never occurred to me until recently was...how difficult it is for the parents to watch their kid grow up with this injury. Feeling helpless and the guilt that they could have done more. Being a good parent is all you can be. Loving your children for who they are. To never look at them the way others do while growing up. Giving them encouragement and pushing them to try anything and everything. Telling your kids that even though they can't do exactly whatever one else does but with a little adjustment they can be just as good.

They won't be able to tell you everything that they feel and they may lash out at you out of frustration and anger because of the physical limitation, self-esteem is low or the disappointment that they are different from everyone else in class. If they were forced to be left handed...like me, they will need the left handed desks, may write backwards or are told over and over again to "use both hands" when they think they can't. Kids may pick on them or asked questions they can't explain. It will be hard but they will look to you to give them courage, hope and more than anything a sense that they are perfect the way they are.

In the end, they will find a way to adjust, they will become confident, they will set examples to other people that have two good hands, they will surprise you out of determination, they will have the teenage crush, they will grow up and try to find themselves but through it all, they will love you, they won’t blame you. They will know that you fought for them to live, that you cried with them, that your share their pain, you did everything that you could, that you are not a bad mom or dad.

It took me a long time to get to a point of emotional freedom and I am still on that path but on the way as I look back on my life, I want to say thank you to mom and dad for making me feel normal when everyone else might not.

Welcome Drea492 to our UBPN Family, for this is what UBPN has become to me. Since I have no grandchildren of my own I now am adopted Gramma to all our BPI children and their siblings especially the ones I've meet attending UBPN Family Camps 2005,2007, and 2012. Next 1 is 2014 and I look forward to seeing and hugging them all. It is a very healing experience to meet and talk to other adults with OBPI's, have gab fests with the teens too.
there are links to Camp pictures on the home page,BTW.

There is no dumb question accept the one not asked.
The Message Board for Adults and Teens have alot of advice on things that happen as we age,especially those of us who haven't had interventions or therapies.
Come back often.

Carolyn J
LOBPI/74

Wow, I just wanted to say what a great post this is. I am 20 years old with a LOBPI with no surgery as well. I hope that the new parents read this and take to heart that your child will be ok. Growing up with this injury can be hard and frustrating at times but great parents are what get you through it. Kids with this injury will surprise you with how strong, clever, and adaptive they can be. Often times I see parents on here wondering if their child will have a "normal life." I think the key to that is to treat them "normally". I think when they are injured as a baby, at the beginning the world revolves around their arm and it might seem like it will always be that way. As they grow and become involved in school, and activities, and friends it's just not the case anymore. I personally found that people only treat you differently if you act differently, and I think parents are key in shaping the child's attitude towards their injury. Don't baby them or expect less and they will learn to rise and beat the obstacles again and again.

-Brittney

this post can apply to ANY AND ALL "differences" of any child or adult. whether it be BPI, autism, downs syndrome, mental deficits, or any other difference. wonderfully written.

That is the absolute Truth by so many Post to,:D
Tom

Thank you to all responses and all readers

This post and the replies have made me tear up a little bit because that is exactly how i felt/feel about my seven month old daughter. I know that it will be a struggle for me not to cry if she becomes sad or gets picked on, but I know that it is my job to be strong for her and show her she can be just as good, if not better! And honestly, every child has an issue they are ashamed of, whether it be weight, height, acne, hair...so on and so forth. I do have one question though. What does like OBPI and UE and LOBPI and all those abb. mean? I get so confused whenever I read something with them in it. Thank you for the encourgement!!

Katie

I am not sure what UE means, but OBPI is obstetrical brachial plexus injury and then the L or R in front of it (LOBPI) indicates which arm; left or right. I am fairly new to this but I believe that is correct from what I've picked up on.

UE means upper extremity. TBPI is a traumatic injury that happened any time after birth. there is a glossary of terms on the resources tab above. it has a lot of things you might need to know that you have not heard of yet, but will, eventually. good luck to all of you.