United Brachial Plexus Network, Inc.

I've noticed that a lot of the people who post here know each other, and have helped each other through their experiences. It would be nice to have a specific message board for the mothers and fathers of newborns to meet. We can share our experiences from the beginning. This injury is going to be a long road for many of us. Also, maybe some of you experts can guide us along the way. I'm sure alot of you find yourself answering the same questions to the newbies.
Thanks for your time,
Allison

Mentoring is a big part of our support network. The experienced families mentor the new families. It works so well this way - we help navigate the path, explain the things that we once didn't understand, teach people how to advocate for their children throughout all kinds of systems (insurance, hospital, state, school). The information and the wisdom shared is so valuable for all - I would hate to see it broken down even more.

By reading about problems that older children have, I can plan better for my own daughter.

I made many of my decisions based on the experiences of the older OBPI's -without their input I would have been lost.

Even in the chatroom I have on my site - it's for OBPI - but it's really geared for parents whose children are injured. We have an absolute priority on those going to surgery the following week and for parents with newborns.

The best way to meet families in the same 'time frame of recovery' as your child is to go to picnics. I met my closest friend the day my daughter had surgery - that was 3 1/2 years ago and we've traveled this path together.

I never tire of answering questions from newbies just as the more experienced parents never tire of answering my questions or listening to my vents. I think the message board is really supportive for those at any age or stage.

Just sharing my thoughts,
-francine

Allison,

Thanks for sharing your thoughts, I really appreciate it when people take the time to reach out and offer suggestions for improvement, it shows that they care.

My thoughts on the issue you raise are that in some sense all of the parents in our community are right with you and the other newborn parents. We have all been exactly there at one time. For myself, I can say that I find it healing to be able to communicate and share with the other parents, especially the parents of newborns. I don't ever get tired of it, although it is sad at times.

When my son was born eight years ago there was no website, no organization, no publication, no support group, no nothing. I felt so alone and scared...this is what has driven me to be an advocate for the past eight years...to actually be able to help a newborn parent avoid the black hole I existed in when my son was born gives me enormous satisfaction. And I hope, as Francine says, that our experiences can help guide others down a path that none of us expected to be following...shining a light for the others who come behind. It is an important part of my own healing to feel that I can help others.

My two cents!

Thanks again for sharing. If you really want to connect with other newborn parents in a more personal way, post your babies birthday and ask other parents with babies of similar age to email you personally. Lots of people do this based on children's ages, or location, or philosophy.

Best of luck,
Bridget

allison,
i hope little bradley is doing better and that you were able to get the right splint for him. my husband and i went to maia's party yesterday and had dinner with francine and lou, she is such a source of support and so patient in answering all my questions that my anxiety over meghan's surgery 5/21 (everyone please pray for her) is managable, still high, but manageable.
you can call me anytime. with bradley and meghan so close in age we'll be facing the same issues at the same time. also, laura and calista being three have us busy enough to begin with! i'm so glad we talked. you be my support and i'll be yours. it drives me crazy not to have regular internet access, i'm lucky to have gotten on today at all. talk to you soon,
amy
to all others... it's rare i get a chance to go online.
my 5 month old has her primary surgery next tuesday at TCH and i'm scared but hopeful. she was a 12.5 lb vaginal delivery. has anyone else delivered such large baby? i have no email but i do check this sight on occasion.