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Monday, December 17, 2012

A medieval torture tactic

"I liked things better when I didn't understand them." -Bill Waterson

So that's what I did.  I just took her home.  I didn't have a battle plan or an army and I certainly didn't have a force field.  I had the only things I could offer her at the time.  I had an infinite amount of stubbornness, a heart bursting with love and two eyes that I would share with this little girl for the rest of my life.

An enormous amount of weight settled on my shoulders that day as I strapped this tiny person into her car seat.  I could feel the weight threatening to suffocate me.

 Before I left the hospital, my sister in law, gave me a website.  It was for an organization called ican.  International children's anophthalmia and microphthalmia network. www.anophthalmia.org  I did not know that this information would become a life line when I began my adventure into the unknown.

I did know that no one in that hospital had ever really seen a child born with this condition.  The only person they could direct me to was a pediatric opthamologist.

So before I left the hospital I googled ican.  It was full of people,terms and images that were so foreign to me, I had a hard time comprehending what they were saying.

 I didn't know what an Ocularist was.  This was a profession?  I had never heard of it.  Of course, I had never heard of a baby born without eyes either.

So I googled ocularist.  Apparently he was some sort of artist that made these things called conformers.

I googled conformers and was overwhelmed by what I read.  An ocularist makes, and then forces these conformers into the eyes of anophthalmic and microphthalmic children in order for the eyes to stretch big enough to wear painted prosthetic eyes.  At the time, this sounded like some kind of medieval torture tactic.

What? This sounds barbaric!  Wasn't there some kind of new technology for these children?  Something not so painful?

We would have to do this every month for years in order for her to wear prosthetic eyes. And it might not even work.  Her eyes might never stretch enough to wear prosthetic eyes.

It said that we would need to start this process as soon as possible to give her eye sockets and eye lids the best chance of stretching.  Then I read on another web site that if I didn't do this to her, her face might cave in. (Untrue, but I didn't know that until talking with other parents.)

I had to turn off the computer.  I grabbed Oli's little pink newborn blanket, buried my face in it and just cried.  I cried for myself, I cried for her, I cried for Kekoa and Seth.  I cried like I have never cried before.  I did not want to do this.  I did not want to have to put this little baby through procedures that would hurt her.

 What kind of a mother volunteers her baby for pain?

But, I didn't want her face to be deformed either.

I cried harder.

And then I picked her up and whispered "I'm sorry" again.

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