So, after 5 years, it still hurts.  And hurts.  And hurts.  Congenital Glaucoma is definitely the gift that keeps on giving…  With two boys out of three having it, it is as much a part of our lives as peanut butter and jelly.

I had a conversation today with someone close to me.  They said that they were “very optimistic” about Wayne’s prognosis and future.  Both surgeries have gone “great” and that being optimistic was better than being pessimistic.  I had to make a stand… for my sanity… for my future…and for my family.  I had to disagree.  Here’s why…

First, I am very happy that the surgeries “went well.”  That simply means the doctor did everything he was supposed to … very well.  Wayne made it safely through it.  The eye reacted physiologically the way it was supposed to… everything – the mechanics – of the surgery went well.  That doesn’t mean we should throw our emotional armor into the lake… never to be worn again… and assume that since the surgeries “went well” … his disease will be halted, slowed down, or cured.  Experience has shown us time and again for the last five years that it has no correlation to the progress of the disease.  Mainly, because you can’t just cure it… you can’t just “know” what the next step to do to treat the disease is… you can’t just “stop the pressure”… it is a guessing game.  The doctor makes guesses and assumptions and does his best based on 30 years of experience… but in the end… the eye pressure always goes back up.  At least for us.

We lived our life being “optimistic” for the last five years.  Every single surgery, EUA, and office visit we “expected” to hear good news.  Almost always… it wasn’t.  We have been on an emotional roller coaster for 5 years now because of optimism.  It has drained us financially, emotionally, spiritually, and in every way imaginable.  I, for one, am done with it.

My new “leaf” is pessimism…or at least it will be “realism”.  I say that if I expect that something will be wrong with his pressures… and that they will keep getting worse… and the we will have to go to more and more surgeries … Then, when it does happen… I won’t be let down.  It will be the norm.  If it turns out I’m wrong and things get better… then whoo hoo… I am happier than I expected… But what I’m done with is the false belief that this disease can be controlled or fixed in any way.

That being said… I’m done with my depression… my sadness… It is time that I get “realistic” about living life and showing all of my sons that we can take this disease… and win.  It is time to lead my family back into the game of life with a winning attitude and show them how to fight for what you want.  And what we all want is a a break from the sadness… from the heartache… from the letdown… from the exhaustion… from the fear… from the hurt and pain.  We want a little happiness for a change.  That’s what were going to get.  It is a fight… a war…

We will win it…

Coming soon… a new name… a new site… a new attitude… Stay tuned!

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