Friday, October 12, 2007

"You're Talking About My Life!"

This has been said to me a few times since I've started this blog, but the emotion attached to it has been very different.

I have received many emails from parents who are happy when they find my blog. They cannot believe they are not alone. My experiences and those expressed in the comments echo their life. They are grateful for my words.

Then there are the few emails that I have received from parents who think I am actually talking about them. They are angry because they think I've used their experiences and claimed them as my own.

For the record, all of the posts in this blog are written by me and are about my life (unless specifically stated). If you think you recognize an aspect of my life, in your own, it is because there a lot of very common long term effects of prematurity.

On a side note... if you send me a private email, I will NEVER use the information in my blog unless I ask you first. Never. I hold private emails in very high regard and appreciate each and every one that I receive.

8 comments:

terri w/2 said...

This is almost humorous, like you have nothing to do all day but gleen from others' experiences and claim them as your own!

PE you are doing a wonderful job with this blog - it is a well-balanced view of the challenges of prematurity and sadly, yes, there are many. .The emperor (in this case, neonatology) has no clothes and you are the one courageous enough to start a blog to let the world know that. In doing so, you are doing a world of good for parents who thought they were in this alone.

Nancy Brown said...

I don't think she meant that others had accused her... On the board we are on a few people cut down others experiences because they don't find them "valid" reasons to have issues.

I personally have enjoyed reading. I experience a lot of the same things and I am glad to have you around Stacy!!

Chris and Vic said...

In addition to exposing neonatology (couldn't resist the pun--that they, like the Emperor, have no clothes!!! Great analogy, Terri!!) . . .

Stacy describes her family's life, her daughter's, her own emotional responses--and yes, there is sometimes remarkable similarity among us, with all the patterns of prematurity emerging---Those patterns, described in this blog may create a NORM. We ARE creating a "new normal," and creating a niche for ourselves and our kids within society, at school, etc.

We are doing this slowly and painstakingly, with people like Stacy speaking out at PE . . .

It can be discouraging, how slowly the new normal/the niche is being created---but on the whole and in the end, we have created a place for our kids and our families. It may mean we are no longer opposed when we ask for special accomodations and services for our kids; it may mean we are no longer stared at in the grocery store or restaurant . . .

So, thanks to ALL who compare notes on the lists/blogs, and find/see the patterns.
C & V

The Preemie Experiment said...

Thank you Terri and Nancy! Feelin the love! :-)

Nancy,

Nope, I was really talking about being accused. Can you believe it?!?! All in one week I got 2 emails from people saying that I was writing about something they said to me and a then few emails from people thanking me (love those!) because they no longer felt alone.

How nice it would be if I was truly the only one with a child who was experiencing these issues.

Hugs,

Stacy

The Preemie Experiment said...

Hi Chris,

We must have been sending our responses at the same time because I didn't see yours until after I sent mine.

I feel the same way you do Chris, we are the norm. But, what I don't want to happen is to have the "norm" be accepted as ok. I'm so afraid people in the medical field will just accept it as a part of premutirity instead of finding a way to prevent all of these long term issues.

My heart has been breaking lately. Not only is Paige dealing with such strong mental health issues (new post on the subject coming tomorrow) but adult preemies are struggling too. I find it hard, at times, to have hope that she will over come this monster.

Hugs Chris,

Stacy

Nancy Brown said...

Oh well.. I guess I can say you are a horrible mean person for talking about my life!!! ( I can't even begine to tell you how many times I have done and felt the same thing....:) ))


I do however have a problem with "some people" who think that their issues are way worse than someone elses so therefore their issues are not valid. ( go vheck out my point of view blog for more info)

Nancy

Anonymous said...

I used to read this blog, but these comments (i.e. The Emperor with no clothes) are what drove me away.

Not everyone & everything about neonatology is evil, in fact, most of us and most of it are genuinely here for the babies and their families.

I am sorry that many of you had bad experiences in the NICU, but rest assured, the majority of us work long & hard to maximize a child's best potential for a good outcome.
- A Neonatologist

The Preemie Experiment said...

Dear Anonymous,

I completely agree with you. There are neo's out there that are committed to the babies and their families.

They are the ones who are honest with the parents about the possible long term issues related to prematurity.

They offer comfort care as an option.

They try to learn through parents of older preemies and adult preemies themselves to change the way medical intervention harms babies.

Their hearts ache as they watch babies be in pain while fighting for their lives.

They are the ones who attend the conferences to actually learn something.

They are the ones who teach new neo's that it isn't all about the almighty dollar.

They are the ones who petition for research on the long term effects of the interventions used.

They are the ones who, when interviewed in the media, give an honest account of the *possible* long term effects of prematurity.

But, as much as I agree that there are some good docs out there, there are also some that do not do the above.

There are thousands of parents out there that are shell shocked because what they've been told in the NICU is not accurate to their lives.

The schools are filled with former preemies who are struggling in some way.

Specialists are dealing with the prematurity aftermath.

There is a lot of work to be done with regards to the perception of prematurity.

I wish all neo's were committed like you.

I hope you come back and read and continue to comment. I would love a balanced discussion. We have NICU workers, parents of preemies and adult preemies who lend their experience, but not too many docs. Although I hear from a few via email, I would love to see them comment. I promise to moderate and not allow the angry mob to come at you with lit torches!

I honestly (and maybe naively) believe that we all can learn from each other.

With respect,

Stacy