United Brachial Plexus Network, Inc.

Hello to all,
I am the mother of Keiarra she is 4 years old and LOBPI. She has not had any surgeries to date. Sometimes I post and other times I just read what you all have to say about different things. I just recently had a son (born Sept.3,2003) and he is not injured he was born via C-section. The other day my daughter said something to me and to be honest I did not know how to respond. I was holding my son and she looked at me and said momma I am going to do Kamauri's stretches cause I don't want his arm to hurt like mine. Then she said when he has to go to therapy I don't want to go to school I want to be there so I can help him. Has this happened to anyone else? I did not not see this coming.

It makes me feel so angry sometimes because I have 2 kids that are not injured and my baby girl is and now she is at that age where she is realizing that there are things she can and cannot do. I do not let her injury be the focus of her life though. I try to make her believe that she can do anything she wants to in life if she tries. Sometimes I forget that she has limited use of her arm. I try and let her be a kid. But do you think that she believes that everyone is born with BPI? How do I explain it to her so that she understands? Any reply would be appreciated.

You can visit Keiarra's website at: www.mykeiarraawareness.com

Thank You-Dylecia

Is there anyone here from Georgia I live in the Atlanta area and it would be great to hear from parents that are near here.

Hello Dylecia,
Yes your daughter probably believes that the pains she experiences are normal and therefore other people have pain similar to her own. I thought, well into my teens, that my "normal" friends also felt chest pains and back pains during our long bicycle rides. I didn't know that the pains were a part of the nerve damage and so I thought they were normal pains that everyone feels now and then. Sharing our mutual experiences on the internet, is resulting in a kind of group self education process for people with obpi so Keiarra will come to know through you that her pains are part of her lobpi. Keiarra is at the age when she will begin to understand what you are telling her regarding her injury and that the pains are unique to her injury. When I went through that learning period I rebelled, cried a lot, and felt very angry and sad. It's a hard pill to swallow - the idea that I have unusual limitations, and also intermittent pains that may not ever go away for good. You'll explain the way a loving parent does and she'll receive the information the way that young children do. What is the right time and way to explain? You might want to consult with a therapist first on that or see if you can find a book on child rearing that deals with the subject of teaching our children about their disabilities. There may be other information on the internet that can help you choose how and when to teach her these things. It's all right. Don't worry too much. Best wishes.
P.S. My yahoo group ERBSBPP is about addressing the problem of people with obpi being able to support themselves. We obpi sufferers should be entitled to some kind of support from social security disability insurance but most of us are not entitled to any compensation. To visit my group you will need to establish a free yahoo e-mail address and then click on yahoo's group feature and type ERBSBPP in the search box, and hit enter. Now click on the blue ERBSBPP link. On my groups home page click "join this group". It's completely free. OK! Now, go to the bottom of the page that appears and click join. There are lot's of links to other bpp information and the message board is about trying to improve the lives financially of people with obpi.
Good Luck!

You have such a sweet little girl! I am sorry I can't hep you out but you should be proud of the amount of empathy she is showing.

Thank you Cliff for your advice. As a parent it really means alot to hear from someone who can put into words what I could not. Sometimes things seem so hard for her and it breaks my heart to see her going thru this when it could have been avoided. Much love to all the parents and the kids with Brachial Plexus injuries.

-Dylecia