Friday, January 06, 2006

Double Edged Sword

I know I haven't posted in a long time, and I must apologise for that, not that I'm sure anyone actually reads this blog, but if you do, then thank you!

I have been in reflective mood, wondering if I have created some kind of monster - and no I'm not talking about Michael, although he has been recently....... more about that later.

It stems from Shelley having Jacobs photos stolen, and used on a false website, some person kinda figured they'd get off on having preemie twins, and introduced themselves on a premature baby forum.

Anyway it got me kinda thinking, about not only my blog, but Michaels website

I created Michaels website because I wanted to share the reality of life with a premature baby. To show what it's really like to live with the fallout, the rollercoaster ride of emotions that we faced, the reality of disability and the days of tears, frustration and anger, trying to get your child's needs met, the side not portrayed in the media, and in my experience, not shared by the Dr's either.

I am fed up with the amount of wonderful preemie success stories that float around, proclaiming what wonders are being done to save such tiny babies. There is no thought to the realistic side of saving a preemie, there is no information shared with future preemie parents, about the reality of these miracles. Headlines scream of the "Worlds Smallest Baby goes Home", but no-one goes back 5 years later to see just how this child is doing.

More often than not you do not skip off happily into the sunset with this perfect miracle child, some are lucky, some do........the very real side to life with one of these miracles, for many parents, is being dragged kicking and screaming into a world of Special Needs. Fighting anyone and everyone to get support and services for your child.

So I was honest and open about our lives over the last 6 years, I have shared personal photo's, videos and memories. I have described the anguish we felt and continue to feel, and the aim of this was, that other parents of preemies would know that they are not alone. My hope also being that any of the professionals we deal with, that may wander across the site, would sit up and take notice of this world from a parents perspective.

I know this has happened because I've had contacts from professionals who wanted to use Michael's site in teaching the next generation of professionals.

Unfortunately my site is also open to abuse, and this is the bit I have struggled sharing so much information, have I left other preemie parents open to abuse by those who think it would be a good idea to pretend to be preemie parents??

I sincerely hope not.

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