United Brachial Plexus Network, Inc.

Hi, my daughter has OBPI- she is 3 and a half now. I searched all over just after she was born and read about many of your stories, I haven't been able to really talk about her and how I feel. Mostly, doctors have just been judgmental. Even when we got to a good clinic where they are familiar with BPI, they make comments that sting. Just after she was born, I was so tired of hearing well meaning people say, "Kids are resilient; she'll learn to use her feet-- she'll learn to compensate".

I wish we could go to the camp. But we don't have the money and the scholarships say they are only for people at poverty level--- which we have good jobs, thankfully, and are not.

We live in Pennsylvania, just north of Baltimore, MD. I'm wondering if there is anyone around I can talk to. Is it wrong that she is almost four and I'm still angry??

i saw a post in the events section of someone in PA wanting to get together who has a 3 year old too... maybe the two of you at least, could get together?

I think we go through a grieving process as parents. You know all those steps. I didn't really have anyone to talk with when my son was younger and buried a lot of those feelings. Then when I got pregnant with my second son, all those emotions/fears/etc came to surface fast and furious and I had to work my way through it. I feel like I've accepted what happened, how our lives are now, and even have found a peace and some blessings in our situation today. There are days though when I still feel the sting of what happened... it's usually when I see my 4 year old struggle with something that my 2 year old can do or when he gets frustrated at himself. I let myself feel that way for the day and call a good friend (who has no clue what it's like, but is a great listener) and vent. After that though, I look at how this injury has shaped his spirit, drive, determination, work ethic and I know that he's being equipped early with things most of us are still learning! That seems to help me feel better!

I think a lot of how our children view themselves is shaped by how we view them, their obstacles/challenges, etc. When my son says, "I can't do it! It's too hard." I say, "Lefty needs to try!" I actually say, "What do you say?" and he says, "I WILL try." I want him to be proud of himself and how hard he works and what he accomplishes. I never want him to feel like because of his obstacles, he is somehow less than or should feel angry about it. We all aren't gauranteed fair shakes in life and while it can be hard, we can still make the best of ourselves. Does that make sense without sounding cold?

Some hospitals have parent support groups. Cincinnati's BP CEnter has a Family to Family Program where you can talk with other parents with a child with an OBPI. Does Philly? Sometimes it can just help SOOOO MUCH to vent and know the other person knows exactly what you are going through/talking about/feeling.

If you want to email me, feel free. My son just turned 4 years old and so our kiddos seem around the same age. Hang in there, Mama! And I don't think it's wrong to feel any certain way... for me, personally, it'd hurt me more to hang on to the anger for years; but we all feel how we feel things differently and at different time. Something that has helped me is finding ways to do something good from our experience... like his injury has opened our eyes to a whole new world... raising money for the Ronald McDonald House, donating toys (like instead of people buying birthday gifts for my boys, we ask for toy donations that can go to our children's hospital or therapy dept), volunteering, etc. I know it's helped me find the blessings in what my son and our family go through.

Gvannice wrote:We live in Pennsylvania, just north of Baltimore, MD. I'm wondering if there is anyone around I can talk to. Is it wrong that she is almost four and I'm still angry??

hi. i think you are doing a very good job of taking care of your kids. no, it is not wrong to still be angry. BUT your anger is more than likely seen by your kids, which in turn may make them angry just by imitating your attitude towards this injury. i say them because it affects all your kids. to be angry is your choice and your right. but not all rights have to be enforced. and not all choices are the best. i really dont mean to sound harsh, but i have lived my entire life around people who were born with severe birth defects (not injuries). and my family has found that being angry makes the affected person more difficult to deal with. and makes it harder for everyone else around them. we just accept who they are and go on and do what needs to be done to take care of them. good luck to you and dont forget the best thing you can do for your child is to take really good care of YOURSELF....

Thanks, I'll definitely check out the board again to see if I can find someone close by-- I must have missed that!

And thanks Crops--- your note was really compassionate.

I was having a rough night; I don't show anger around my kids, but sometimes late at night, when everyone is asleep, I do feel it. I think the great thing about this site is I can share it and have other people who may be feeling similarly understand and relate.

'Thank you' to those of you who are here to do that.

I live in northern Baltimore County and have a first appt coming up in Nov at KKI. Though I am an affected adult, we might have a lot to learn from each other. I would be interested in your perspective as the mother of a BP I child. My mother is not able to discuss her feelings about this with me. As a result, I think I have a unique perspective on what BPI children need (emotionally) growing up.