The Grey Matter

I am still a little in shock but mostly I am feeling guilty.

I know there are a dozen or more mothers who wish they were the ones who had gotten the call that a gene was found for their child. I know that for years and years, I thought I wanted to know the gene that was causing all these problems.  I thought I wanted a name, a place to hang our hat, call it home and settle right in to the business at hand. A dozen or more mothers are happy for me, hoping for the same great news. For this, I feel guilty.  Maybe it should have been one of them to get this news, one of them who was ready and really did want answers.  Instead it was me.  I don't even appreciate the 'gift' I've been given.  It's not that I don't appreciate all the time and hard work of a superior team of doctors, I certainly do but maybe I needed a little more time to mull over the effects of finding the gene.

I never realized until Thursday, just how much I loved being in the grey area.  Limbo.  No man's land...the territory of clinical.  I never realized how deep the phrase, 'if it looks like a duck and sounds like a duck and walks like a must be a duck' meant.

Grey is insulating.  It wraps you all up in possibility. The grey area allows you to be open to ideas.  It presents itself with questions.  The grey area means that maybe, just maybe it can be fixed.  Maybe, it's not as bad as it seems.  Maybe, they just have a mild version of my friend's living nightmare.  Grey means, you can deny that anything is wrong really, and denial is sometimes a really great way to get by. At times, the only way to get by and I sort of liked that my life marched along to the dull beat of denial.  I had become kind of comfortable with our undefined life and as long as I didn't venture out too far in the land of 'normal' people, I was none the wiser that this was not everybody's reality.   Sure, it has been  hard to plan a future, plan a day even but we've done pretty good.  Grey meant there was so much more room to dream.

Grey is a question mark ' ?' .  Its soft in it's punctuation and open to many points of view.  That makes life interesting.

In 8 weeks, give or take, we will have a name and no longer will the boys be packaged in grey.  No longer will there be room to imagine something better, something with an easy fix.  No longer will we spend hours guessing, reading, learning, researching.  The beat of denial will be harder to hear.  No more will life be loosely defined and somewhat comfortable.  Nope.  Now we will have to love the cut and dried of life; the black and white. Parameters.  Definitions.  Prognosis...I hate that word. Someone telling me what's left of our story and how it will end.  I hate that too.  Now we will deal in exclamation points and periods.  No more run on sentences and never ending questions!  I don't want our lives to be defined and right now, I find myself in this quandary.

I want to be happy.  I should be happy.  I am chasing happiness but I have yet to catch it.



  1. This definitely must be so incredibly shocking for you. I hope you are doing ok and that the next 8 weeks go by quickly until you find out what exactly is going on. We'll be praying for you guys!


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