United Brachial Plexus Network, Inc.

Keri,
I would love to hear your daughter's story. I am actually working on patient stories from CCHMC for our website. Whether or not this interests you, let me know. Otherwise, I would like to hear your story for the research I am doing as posted on this website. Please let me know at what level you are interested in being involved. I am excited to hear from you and to hear how your child is doing!
Carrie

Amy,
I think all of your activities sound awesome. You are more active than most people I know. I like how you set goals for yourself- it is a productive way to approach life. I would like to hear more about you, so I will check out your website and might have more questions for you later. I really like how you wrote, "Life is not over after bpi it just gets more interesting." What a great attitude. This is what I'm hoping to find in this search. Positive stories and messages, as well as an honest description of what it is like to live with bpi (even the difficulties). But mostly for kids, I think it would be helpful to be positive about it. Softball, doing your hair, skiing, rock climbing, swimming...these would make great photo visuals in a book.

Thank you so much for sharing. I'm sure we will be corresponding again.

Carrie

Carrie,
Thank you for your information, I will email you. I really do consider surviving the "SECONDARY Injuries & Issues" of living with OBPI ,my biggest success at 68. It is amazing whenever I look back & start to "pick out" a few things to share from the "Big Picture" of my life "FULLY Living".{is that a verb??...I mean it to be}.
Carolyn J

Carrie,
I did Ballet and swimming and competed in figure skating until the age of 28 (I'm 30 now).
I went to school to become a physical therapist and a teacher. I am now back in school to become a nurse.
Hmm, not sure what else to write!
I have a blog, it has a little info on me in the first "blog" intro I wrote.
http://nurse-to-be08.blogspot.com/
Marieke (LOBPI age 30)

Carrie,

Thanks so much for providing us with more information. It is important to know. We all need to be very careful with what we share with people over the Internet. And of course, we are all interested to hear what you plan to do, which sounds very exciting.

Now, to share something with you ...
How does one measure success? Or I guess, to turn that question around, how do I measure success?

I have always been a fairly driven individual and my work as a professor at Kent State exemplified that. I recently received the President't Medal there for my service and you can read the press release about that here -- it tells about my accomplishments at Kent:
http://imagine.kent.edu/media/content/press.asp?id=472

You will need to scroll about half way down the page to get to my info.

But my real success, to me, is not measured in accomplishments but rather in other intangibles. What matters to me most are my family (hubby Tim, son Josh, daughter in law Heather and grandsons, Scott and Phillip) and my relationship with them. Also my friends, who I hold dear, and fellow UBPN colleagues.

I think the bpi molded my character and made me a better person than I would have been without it. I think all of us with this injury are more sensitive to the needs and feelings of others, especially others with disabilities.

I measure success by looking at who I am and not so much in what I have accomplished. That's a work in progress!

Hope this helps.

Nancy Birk
UBPN President

I have met a Certified Nurse Midwife (CNM) who had suffered a permanent, severe OBPI that has led to about a 90 degree elbow contracture, smaller hand with less dexterity, and less range of motion in her arm/shoulder. Yet, she still delivers babies! How's that for life coming full circle.

Tanya in NY
Amber's Mom, ROBPI, almost 4 years old

Nancy,

I agree with you that there are all kinds of definitions of "success"- whether it be what you do or the kind of person you are. As someone who collects books and loves antique ones, your job sounds fascinating to me- what an awesome career.

Thank you for sharing your wisdom with us.

Carrie

Tanya,
That is so cool! I had a CNM for my son's birth. What a rewarding lifestyle. I'm taking this all in and trying to formulate how I might use all these stories. I might be interested in talking to her at some point if she is willing to.
Thank you!
Carrie

Carrie,
I decided to post here instead of email because I just might "go on forever" in emailing and believe it or not, posting on these Boards helps me keep brief.

I agree with Nancy..it's hard to truly say "success" because it is so subjective. However, I do feel that raising my son,ALONE, successfully with no family support and having a lot of fear that I would injure him with my left-handed "iron-claw" grip, or that I would drop him [ I didn't do either one], was,and is, the highlight of my "Sucesses". Talk about being a new Mommy with LOBPI! I was really a Nervous Nelly until "A" Doctor told me for the 3rd time "...BUT Mrs. Jenkins, YOU know more about it right now than we do!". FYI, my son had severe feeding problems because of Cleft-Palate-Hare Lip, until age 3& a half AND All that goes with it plus other disabilities... and mostly got little help from Professionals back 35 years ago. After that above statement for the 3rd time I got very, VERY competent at everything...probably too much 'cause at times I was very "stident",willfull, pushy. All of this is to say my son turned out to be an Unusual,Handsome, Fine, Productive, Compassionate Man who tells everyone that I am responsible for HIS Success!!

My other "Success" would be the "Coming Out of the dark Tunnels of the,sometimes, invisible "Secondary" Injuries and Issues of LOBPI.I would say, fighting my way thru those "secondary injuries". I did that basically alone until 1998 at age 60.

I am always open & willing to answer any questions, any time.
Carolyn J
LOBPI
Age 68 & proud of it!