United Brachial Plexus Network, Inc.

Dear Mica,
Kath said ALOT of what I lived too except I did not have any support person for me growing up in those "olden Days" of backward thinking and "Don't talk about it"."Forget IT" times.

I had great self-esteem issues until I found UBPN at age 65! That is a loong time to be alone in this. That is why I have JOY in these Boards. I hope I can encourage Counselling AS NEEDED.everyone is different!!

I found that when families talk openly about the BPI injuries,around no matter how young, BPI-ers are more comfortable in their skin and can talk more easily about it too.[That's only my opinion!]

FYI, There is an interesting Topic Thread some where on this Message Board on Self-Esteem Issues,( someone is also doing a Research too), and also "naming" our BPI arms[be prepared for "black humor"..that's one of my survivor skills].

HUGS all around,
Carolyn J


Message was edited by: Carolyn J

My 40 year high school reunion is coming up. We were asked to write something for the memory book - family, jobs or careers, travels, etc. For a while I couldn't think of anything to write. These people didn't want to know me when we were in school together. I was always on the outside. What would they want to know about me now? Probably nothing. Then I thought about what I wanted to tell them about me now. I typed it out on our computer, and then inserted their form into the printer. What I wrote completely filled the form. My name was at the top of the form, so except for my name at the bottom of this post, this is what I wrote:

My husband, John, and I have no children, but we have a dog. Shaina Maidel is a white miniature poodle. She is currently 16 years old. This is old for a dog, so she is our “geriatric baby.”

I am a homemaker. John is retired from Air BP.

We have taken my dream trips to Hawaii and Israel. John traveled a lot in his job with Air BP and seems to have no dream trips in mind.

Gains since our last reunion: The marriages of both of our nephews and all three of our nieces gave us ten nieces and nephews. At this time we have two grand-nieces and three grand-nephews.

Losses since our last reunion: We lost one niece due to divorce, leaving us with a total of nine nieces and nephews. John’s parents and my father passed away before our last reunion. Since then we have also lost my mother, my sister and a dear friend of mine.

I lost some breast tissue to a biopsy and radiation treatments. Thanks to yearly mammograms, I did not lose all of my breast, let alone my life. I was lucky. I cannot say that yearly mammograms will save all women, but I highly recommend them!

Special gain since our last reunion: In 2005 I found United Brachial Plexus Network, an organization of people with brachial plexus injuries. The brachial plexus is a bundle of nerves that comes off the spinal column, goes through the shoulder, down the arm to the hand and fingers. These nerves control the movements of the shoulder, arm, hand and fingers. For a fuller explanation, see ubpn.org online.

The best part of finding UBPN is that I’m not alone anymore! I have met other people with injured arms like mine, both on the UBPN message boards, and in person at Camp UPBN 2005. Some of us were injured at birth (obstetrical injuries), as I was. Some of us were injured later in life (trauma injuries). For some, this injury also impairs the sense of touch, including being able to feel pain. This is not the case for me. My injured arm seems to be capable of feeling everything my non-injured arm can feel, but, of course, there is some paralysis. I have gained friends, including the president of UBPN, who lives in Kent, Ohio, just a 30 minute drive from my house. I will be going to Camp UBPN 2007 in the Seattle, Washington area over Labor Day weekend. Camp UBPN is for injured adults, injured children, and our families.

The saddest part of finding UBPN is learning that babies are still being injured at birth. Part of UBPN’s mission is to educate those who assist women in delivering babies, with the aim of eradicating this birth injury.

Joanie

Wow Joanie! Way to go girl! At least now they know. Whether we talk to our high school classmates or not, they shoud know about this injury and the fact that it could happen to them or their families. thanks for using your memory space as an education tool!
Hugs,
Amy 20 years old ROBPI from MN

Joanie,
This is a fantastic "Update on Joanie"! A great "Awarenes" Message too. I bet you'll get some questions when you atend your reunion.

HUGS!,
Carolyn J

Joanie
WOW - WHAT A GREAT UPDATE!

You brought tears to my eyes.
I so understand the part about people not really knowing you.
I was amazed when I went to my 20th and people were so nice and mature and greeted me so nicely.
I received an apology from one of the girls who was part of a group that truly tormented me.
That was so healing and I felt so forgiving, I had not thought of them in years.
It can be a bit stressful but you may be in for a very pleasent surprise.

You note brought me to tears. I think it's great that you are comfortable and caring enough to educate your former classmates.

Sometimes I think OBPI set ourselves outside the group because we just don't fit in.
We know we are different and it's not always easy to just move forward as a child.

I hope you have a great REUNION and you former classmates appreciate your information.

THREE CHEERS FOR YOU JOANIE FOR BEING SO BRAVE

Hugs
Kath robpi/adult

Parent needing help:

You've been given some excellent advise and commentary so far. My comment seeks to expand on those. A while back I was asked to give advise to parents based on my experiences so here they are:

Love your child with all your being.

Be prepared to sacrifice your time, effort, and money to ensure your child achieves the maximum possible recovery.
This may mean unintended sacrifices to your other children.

Treat your OBPI child as you treat your other children. With love and respect without undue attention to their injury.

Encourage your child when they want to participate in activities that may be physically challenging to them.

Ensure your child receives the education and training that will enable them to lead a productive life.

Prepare yourself for an emotional roller coaster for yourself and your child.

Remember that, in the end, you and your child will learn to cope with the injury. How well your child copes will likely be influenced by how well you do.

John P.
OBPI for 68 years

Thank you Amy, Carolyn and Kath for your kind comments.

Joanie

John
Your advice is perfect as usual.
It is so nice to have a male adult post and give advice to the parents.

Kath robin/adult

Thank you everyone! John, your words ring so true and thoughtful.

She is number one in our lives, often to the dismay of my other grown children but mostly to my daughter in law. She makes it quite clear that we "make a difference" in the grandkids in her opinion. If only she knew the gratitude I had for GOD that I only had ONE child injured and that it is not "more" love I have for this one. She just needs me more, physical, emotional and time wise.

I wish that I could say her condition is not the focus in our house. BUT when a child has to leave school a few minutes early four days of the week for therapies it is hard for them to not know it is because of their "arm". I will never ever forget the day she asked her kindergarten freind what days she went to therapy. The little girl was a little envious when she replied she would have to ask her mommy why she didn't get to go...out of the mouth of babes!

Anyway, thanks to all, keep posting, it means so much to us parents. I remember my first time here, probably about the time Kath found this site too. In fact, I think her first gathering may have been the first picnic we attended when she was just 3 months old.


Lots of hugs and smiles for you all!

I'm just so grateful for the honesty and candor in this place! I feel like I don't have to "make things up" as I go along in helping my daughter with this injury. All I have to do is ask a question (or read another's question), and so many people come forward willing to share from their lives.

To all of you adult OBPIs - you are truly making a difference in the lives of the baby OBPIs. From you, we (parents) are learning how to be more compassionate, more understanding, and - YES - tougher when we need to be.

Thank you.

mica