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Wednesday, February 21, 2007

Deepest Fears, knowing too much, positive thoughts

I have been blog hopping lately to some new places in the blogosphere. It’s all Jacqui’s fault for making me think about this and having such interesting friends/links.

The journalist reporting on the story of the 21 weeker is either misinformed, receiving bad information or not understanding the information s/he is receiving to imply that the child will come away from the whole thing unscathed.

I have been reading more preemie stories
here and here, here and here. I am inspired by the mom’s in each of these blogs as well as by Jacqui. It’s good to see how other parents are confronting the issues we face. I learn a lot from each of them and take courage in their tenacity and humor in the face of the unknown.

I have also been reading neonatologist’s blogs
here, here, and here. I am glad to be aware of them. But after a few days of taking in all this new information in this new vista of the blogosphere I have discovered I am quite full. Full as in you have just spent a couple of hours in la Louvre and need to lie down. Too. Much. Information. Must. Shut. Down. Now. System. Overload.

Here is my question to my vast readership of 10: Is it bad to know too much? Is it good to follow these debates and be so informed, especially since I can’t change the past and am committed to the path we are on? Is it? I would love to hear your opinion on that.

But – gaaaawwwwddd. Reading these discussions scares the crap out of me. And for the record, I think doctors and the press could do a heck of a lot better job at painting a true and detailed picture of sequalea of hypoxic-ischemic encephalopathy and of prematurity. But once you are where we are, four years plus in, is it really good to know so much?

I am blogging about this however because there are some major problems when it comes to prematurity.

#1 is the myth that preemies mostly do ok and actually have gifts like being extra musical, extra smart, extra wise. We heard all of that crap in the NICU. I have never found any study to bear any of these out. I have mostly seen many preemies with mild to severe issues especially cerebral palsy. Other supporting myths for the greatness of the preemie experience are examples of famous preemies like Albert Einstein. I have no idea if that is true but if it is he is a very rare case and he most likely had

Asperger’s Syndrome.

#2 Because of #1. preemies and parents who do not have good outcomes are certainly not spotlighted as much in the media or even thought of as important voices in hospital systems and their parent support groups as are the parents of preemies who did great in their NICU course and then go on to "catch up". Why are we so unrealistic about preemies? Maybe it’s human nature to want to focus on the positive examples and ignore, deny, shunt away a reality that is not so positive. Maybe insurance would not just give NICU's the green light when it comes to their tiny patients of the statistics were better known?

#3 Because of #2 many parents of preemies don’t get the support they need from their communities. When Ellie was born I can’t count the number of people reassured me all would be well because they knew of an adult preemie who turned out just fine. They did not mean this is in a "so what is your problem way?" but it did give me a lot of unrealistic expectations followed by guilt over the fact that things were clearly not just fine. Also, the head job #2 does on the parents can be debilitating in terms of them facing up to the reality of their child's issues and even feeling like they can ask for and do deserve help.

There it is. How does sadness and fear of the future and the current fatigue (the GSTTN have been kicking my ass this week) help me get through the day? Not at all.

Enter positive thinking 101 survival technique.
An acquaintance of mine just posted an entry on another blog we both contribute to about his happy life and mental discipline of replacing any and all negative thoughts with positive ones, for example something he is grateful for. This in theory and in practice is an awesome thing to do. I’ve known him for a long time and he always exudes this sense of self that is both uplifting and rock solid. Discipline is the only ways to achieve that as this world is designed to separate the individual from such things.

Here is my grateful and positive thought that I am going to use to remind myself in the face of my deepest fears regarding our life and Ellie’s future:

I love these two lovely and amazing people that love me back every day unconditionally. That’s alotta love going on. It’s pretty cool and something I never had before on a daily basis. On top of that they are both really cute and funny and sweet and even think I am great. Life before them, though it looked pretty successful from the outside (education, job, career, health) was in actuality pretty lonely on the inside.

And this is not a rationalization. For the few friends of mine that read Ryn Tales and know my background and travails growing up it will make the most sense.

I hope this post offers some resources to understand the true outcomes of prematurity. I also hope that anyone reading this will understand, that having a preemie who then becomes a child with multiple disabilities is not the end of the world. It is entering into a new one with new challenges and many things to learn. That is the, please don't feel sorry for us part. And though I would not wish the experience on anyone, you could do it too if you had to. Finding that you have that kind of inner strength is pretty incredible.