What Can We Do?

[cathy@ubpn.org]

Hi Everyone!
I had responded to a post on the tbpi message board a few days ago, and it was suggested to me that I consider posting a similar statement on the obpi message board, because there is a similar desire to find out why "people come and go." If you haven't been there already, check out the posts on the tbpi message board under the heading "people come and go."

For now, I'd like to reiterate much of what I said on the tbpi message board,in that people come and go within local support groups as well as the message boards. It seems to be a natural development in the recovery of an injured person within our community. The point I made earlier was that people may come and go for various reasons, but many of us continue to "hang on," because we are committed to learning more about what's going on with respect to aging and its effects on a bpi, treatment, emotional support, and just being there to help someone new. While everyone comes into this new at one point, (whether tbpi or obpi), others have been around for a while, and find that it is not enough to just be helpful to others who are new to the community. For these people, there is a need to go beyond that point and this is why I'm writing this post.

The Executive Committee of UBPN will be convening a meeting in a few weeks to continue our planning and implementation of our strategic plan. We want to hear from you. If you have ideas or input that you feel would benefit the obpi community, please speak up now and have your voice heard. With your guidance and suggestions, the message boards and other obpi programs have the best opportunity to serve the greater needs within the bpi community.

As I stated in the tbpi post, UBPN will be launching some new programs early this year. Now that UBPN has its first official year under its belt, it is time to branch out and expand the services offered, in addition to expanding the Board and Committees that make things happen within the organization. UBPN plans to have obpi and tpbi leadership, as well as greater international involvement. If you're interested in getting involved, please let us know. It will be easier with more of us involved to accomplish our goals.

We want to hear from you on many levels. Please email me at Cathy@ubpn.org. I will be pleased to provide you with feedback from the Executive Meeting, if you so wish.

Thanks very much!
Sincerely,
Cathy N. Kanter, President
UBPN, Inc.

[cathy@ubpn.org]

Thanks to those of you who responded to me privately regarding my post on this message board. From what I've been able to gather, there are ways in which the adult obpi community could be better served, such as helping to address emotional support issues relating to growing up with a bpi, finding access to information, especially as it relates to pain management and possible surgical interventions, and providing forums, opportunities, and other communication vehicles to disseminate that information. Presently, UBPN offers Outreach, In Brief, the UBPN Website, and we need to make more use of our International Awareness opportunities. Rome wasn't built overnight, and neither was UBPN! We're listening and we're growing, and we appreciate your patience as we ALL grow through this together.

Within the feedback I received, it also became apparent to me that the connection between the adult obpi community and parents of children with obpi goes beyond the mere and obvious connection that there is a shared obstetrical injury. I would suggest that there are emotional connections between the adult obstetrically injured and parents of young children with obpi that warrant a study! Maybe we'll get there one day!

Within these two groups, there seem to be strong, emotional ties and associations that might provide more support and "healing" opportunities (especially for the adult obpi's) than we've given credit for in the past. Might there be an interest among the adult obpi community to further connect on some of these levels with parents of obpi children and/or maybe even with the children themselves? Perhaps on two levels; with parents, and then with their young children?

Please continue to email me with your thoughts and feedback. The executive committee will be discussing these ideas further at our meeting later this month.

Sincerely,
Cathy N. Kanter, President
UBPN, Inc.

[Kathleen]

Cathy

Thank you for these notes. I agree that we obpi/adult have strong ties to parents and to the children. I for one feel my Mother would have loved the support instead of the isolation that came with being the parent of a disabled child. Even though she never used those words or permitted them to be used...

I also feel that support groups are of major importance for the little ones and also for the adults.. When you can share so many commone threads in your life it is healing and also uplifting.

I would love it if there was a support network nearby but as near as I can figure the nearest is hours away. Yet in my community we have at least ten children with obpi... I really need to see what can be done about this.

I spoke to one mother who is not online and she would love to form a group but says that those she contacted did not seem interested... But I offered to work with her on it... her child is still recovering from surgery her fourth so when the splint comes off maybe we will try to get some help and put something together...

This form is the perfect place for us all to share and ask questions and have our information in one spot.
Thank you and UBPN for providing it for us.

I read your post on Asthma... I have had it since I was a child... until I found UBPN I never connected it... So perhaps with the help of all the adult/obpi population we can get some study data put together... and have it all right here...

Thanks again
Kath

[christy]

I would just like to make a note about just HOW much the adults mean to the kiddos and parents. I find them to be a wealth of information, comfort and wisdom of having survived. I think it would be fabulous to include the adults in some actions of the UBPN.

And I especially would like to say a huge thank you to two of you most especially. Carrie and Kath. I rely on Carrie to keep me grounded on giving Katie time off and to consider her emotional states and Kathleen gives advice on things to help katie--that extra hour of sleep we get each night is wonderful. Now if you could tell me how to stop her flying around the room backwards the rest of the night...LOL

And Kath--your Mother must have been an amazing woman. She didn't let you see fear, hurt or anger in her regarding your injury. She was a woman in an unknown world at best and yet she got you through it so well adjusted and wonderful. I know that she must have had an extra special spot for you in her heart (you know the place, where you made her heart smile or sing?)and would be so proud of the work you do for our kids.

Thank you both ladies

Christy, katie and Kim

[Kathleen]

Christy

Thank you so much for the kind words. I have learned so much from the parents that I now understand the injury I have lived with. I knew how to live with obpi but I did not understand all the technicial terms.

Thanks for the words about my Mom... she truly was a strong woman who was so gentle, quiet and yet so strong. If it had not been for her strong determination I would never have survived and made the progress I did. With each thing I learned about my own injury I realized how much time she devoted to me... I am very proud of her and so very greatful.
She was my best friend, audience and cheerleader. I always thought she was so smart and after I found UBPN I knew how smart she really was.

Glad you got the extra hour of sleep. My brothers claim no one slept when I was little. I am a poor sleeper still but when I realized I had to keep the face and arm warm. It really helped me. I also use flannel pillow cases now. That helps with cold face.

Again thanks for the kind words.
I appreciate it.
Kath

[cathy@ubpn.org]

Such appreciative and sincere comments all around. Many thanks for your ideas. UBPN Executive Committee is meeting in a few weeks, and we'll be sure to discuss in greater detail. Thanks again, Cathy