am I the only one....?

[Carrie]

When I first began posting on these message boards about 5 years ago I had a lot of the same feelings as Rachael appears to, namely, why is everyone so obsessed with this injury, because I've dealt with it my whole life and its no big deal. But someone helpfully pointed out to me that this message board is for just the BPI parts of life, sure, lots of people post about other stuff occasionally, and that's all fine, but this group is made for just that purpose. So, the only side of people that we see is like the BPI interface, the part that is talking about this injury and all the myriad of complexities that accompany it, from day care to doctor selection to PT, OT, everything. But, that is just one little piece of the person that each poster is, it's just that we see that piece most often.
The Dr. Phil show portrayed a woman whose life had been taken over by this injury, and it was consuming her, her marriage, and her other relationships. It seemed to be her whole life, and it's an easy jump to then come here and it looks a lot like the entire UBPN community is the same way, everyone worried about surgeries, doctors, all that. But, the show was edited for dramatic purposes, and to tell a specific story and this message board really looks more obsessed than it is for the reasons I just mentioned. Also, on the general posting board there are a lot of parents who have an injured baby or toddler and have lots of questions about everything. This is mainly because they are scared for their baby's future and ability to have a normal life, that’s why it's so important for older injured people and for parents of older injured kids to keep posting and helping parents to understand that it will all be ok. I don't have any babies (or even a goldfish) so I don't understand what it is like to be afraid for your child's health (or even not afraid, nervous?) And the parents don't know what it is like to be injured this way, so we help each other out, that is the support system. It's everything from toilet training to talking to teachers to managing everyday life. It's not perfect, and it isn't absolutely necessary, we could all do without it, but it's nice to talk with someone who has had some of the same experiences.
I haven't had a completely uplifting, 100% fantastic experience with my injury. I have had a fair amount of pain, physically and emotionally, especially coming to terms with what this injury means for me, career-wise, and having to change paths because of it. There are some things that I can't do. And I think that's ok, but my family lets me sort that out for myself and never said "no, you can't do that because of your injury" growing up, and it only would've pushed me to do the thing anyway. That's kinda how a lot of us OBPI kids (of all ages) are, we will plug away and get it done if we set our minds to it, but it's still nice to have people we can talk to who can understand, and help, and support.
Carrie
(ROBPI 24 Williamsburg, VA)
PS Kath I think it's good you didn't marry your mother.

[admin]

Carrie,
I appreciated your candid, respectful, balanced and insightful post. Thank you very much for supporting these wonderful boards and for understanding that we all have full lives that extend far past the hardships, frustrations and heartbreak we often express on these message boards. We know there is much life outside of bpis and believe it or not we fully live life every day. Our children laugh, play and enjoy life, and there are also times where they cry in pain, are teased at school, dislocated their elbow due to the injury, need surgery, don't want to wear their splint, ask why they can't do things or why their arms looks different, etc., etc. This place is a sanctuary for our sanity at times. We share our joys and our child's amazing accomplishments, but more than anything some of us come here when we scared, confused or overwhelmed. I come here to share my struggles and on days where I am feeling down and alone I know someone will actually understand where I am coming from. I suspect most of us don't say things in front of our children that would be hurtful, but we vent here instead and certainly shouldn't be unfairly judged because of it. These boards are "usually" a very safe place full of understanding and support, and a place where people are not usually judged and criticized by people that don't know how they truly live their lives. I have met many, many amazing families through these boards. Lastly, everyone is entitled to their OWN experience, their OWN pain, their OWN sense of loss and grieving, and their OWN journey and healing path. I still am at a loss as to how others can be so judgmental and why they would ever be so vested in how someone else feels. It is beyond my understanding. There must be more to the angry tone and emotions of others who judge. Thanks again for the post Carrie.

[Kath]

Carrie

LOL... love your sense of humor...

Rich
I loved your post.
I also know this bpi Mom her husband and Son.
Her son is a beautiful well rounded strong child.
He does not think anything is wrong with him and his family loves him to pieces.
He is just a normal healthy kid who happens to have an injury.
His mother only want to give him good medical care and she is SO VERY PASSIONATE ABOUT PREVENTION.
She is loving and dedicated to her family.

Kath (robpi/adult)

[brandonsmom]

Rachel,
As well as the mother on the show, I too almost lost my relationship with my husband over my son's BPI....I however had different circumstances. My husband's EMPLOYER hurt my son. They lied in medical records and my HUSBAND can do nothing to help me with anything........3 years after my son's birth, he left this career and we are so happy now. I am not saying that every family is like this, but he didn't let me get to him and this is why we are together 7 1/2 years later. When you are doing everything on your own it is hard. I have spoke to the Dr. Phil mom on several occasions......she is a awesome person. When you have a BPI child it is difficult at best to make things work they way that you want them to. Did you have other siblings.....it is hard to function when you have others that need care too. One day, you too will udnerstand.

[BIGJAVSMA]

Can someone tell me what month Dr. Phil aired. I didn't see it and am trying to pull it up on archives. The month and show title would help.

Thanks, MArlyn

[brandonsmom]

Marlyn, I think it was on in December, I cannot find the title though. I think it was the beginning of December !!! Good Luck Gayle

[katep]

The original airing was over a year ago... I'm thinking fall of 2004? I remember I took one of Joshua's 6-month-old pictures with me.

Kate

[Carrie]

One thing I wanted to add, because I guess I wasn't really clear on this earlier. I don't think it is supportive to respond to any of the comments here with "one day you'll understand" or using the terms judgmental or whatnot. No, Rachael doesn't understand your pain, I don't understand your pain, but likewise, you don't understand our perspective either and I don't think that is fair. I've seen that episode of Dr. Phil and it angered me too. If that was all I knew of that family, I easily would have the same impression.

The other part is this: I went to school (undergrad) with many deaf students (I think over a thousand or two) and they recognize deaf culture, which is essentially that deafness, for many deaf people, is not a disability, it is simply a different culture, like being French or Latino, it's a different experience of life as a deaf person. Frequently, I've heard deaf friends say that deafness is a gift, and that it helps shape the person, or the character of that person. Likewise, a BPI can be a gift, because it shapes the character of the person injured and changes him or her by pushing that person to be different and engage the world in distinct ways. By saying that you want to "fix" the injury, I understand that you are asking to help your child achieve fuller realities in life and grow and be like other children, accomplishing goals and having a broad range of options in life. And that's obviously what every parent should want, the best for his or her child. But in asking for a fix, it offends that part of us who understand that BPI culture, and the way that we can be proud of our injury because, although painful and sometimes limiting, it has caused us untold fortitude and character strengthening. It's a lot like saying don't feel bad because someone isn't of your culture, because theirs can be similarly rich and broad. It's also like saying, yes, maybe I wouldn't choose this injury, but it's brought me more compassion, strength and perspective that I don't think I'd have without it.

So, when I perceive that "fixing" attitude, it can feel a little hurtful and insulting, because I might hear that you want to fix me, and make me the same as everyone else, neglecting the gains that I've had from this injury. It's less making me whole, as it can be forcing a type of culture theft, or a theft of a part of me.

Carrie

[admin]

"God, give us grace to accept with serenity the things that cannot be changed, courage to change the things that can be changed, and the wisdom to distinguish one from the other."

Everyone is different, handles things different, and we must be accepting of that fact.

[admin]

i also know the infamous "dr. phill" mom, and i want to say SHE IS AWESOME!!!!!!!!!!!!!!!!!!!!! she has helped me! my grandma died last june & i felt so helpless b/c my grandma was my best friend, this mom was able to be a shoulder for my tears. she has published, reasearched, & volinteered for us!!!!!! i respect her, admire her, amd most important i thank her!!!!!!! we are a family!!!! our mission should be positive!!!! without each other bpi will never be heard!!! it takes currage to be on tv telling your story. to be attacked for it makes me ill!!!!the truth sometimes hurts, but, it needs to be heard!!!!! every pregnant woman needs to hear about bpi!!!! the mom who went on tv told the world about bpi and she should be THANKED!!!!!!!!!!!! she may have saved many babies!!!!!!!!!!!!!!i commend her for that ....... you go girl!!!!!!!!!!!