2nd Anniversary

March 20th came and went.  It wasn't until late last night that Matt asked if I was doing okay.  It was then I remembered yesterday marked the 2 year anniversary of Waverly's diagnosis.  I had mentioned it throughout the week, yet it totally slipped my mind.  I guess it was better that way.  Although I can't seem to get it off my mind tonight.

Wow - 2 years!  It feels like yesterday and another lifetime.  That day brought the answer we so desperately wanted.  After months of wondering what was happening to our beautiful little girl, we were given a reason for the changes.  That day also brought extreme heartbreak.  I will never ever forget the first question I asked of the experienced old doctor after he said "Waverly has Mucopolysaccharidoses III or Sanfilippo Syndrome".  Is she going to die?  Our young neurologist, who was playing with Wavey over in the corner, stifled her cry.  "Yes."  The tears came from deep within.  I remember the crying ebbed and flowed.  One moment I was on my knees weeping and the next I was asking questions, desperate for the "but there is a treatment option".  (It never came.)  The doctor gave us information about support groups, transplants, research, genetic counselors.  He told us to enjoy each moment we have with Waverly.  We asked about testing Oliver and got all of the necessary paperwork, but I knew in my heart that he had it as well.

Our lives changed drastically that day.  What a defining moment.  Each moment became more valuable.  I would stare at Waverly, trying to memorize each feature.  I took the camera everywhere so I could capture every event, big or small.  My soul wept every day.  I didn't think I was strong enough to handle the diagnosis.

But here I am 2 years out and life feels *normal*.  It is our normal, but we have settled into a routine and grown accustomed to our unique challenges.  I no longer cry every day.  Sanfilippo still creeps in, but it doesn't block the kids anymore.  I used to look at Waverly & Oliver and see the disease.  Now I see them - the most beautiful, precious children.  The signs of Sanfilippo are there - strong eye brows, long eye lashes, enormous amounts of hair, thick tongue.  Their bright eyes and glowing smile dominate.

The pain has matured (not sure if that is the right word, but it seems most appropriate.)  It is deep within. More private.  I still cry - often.  The pain hasn't lessened, but it doesn't rise to the surface as it used to.

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I am listening to one of my favorite songs on repeat as I type.  It is by Over the Rhine, titled "Professional Daydreamer".  The first verse is beautiful and speaks to my soul.

"Part of me

You are a part of me I never want to lose

Hard for me

This is too hard

Maybe I can't get through

What will I miss the most

Pray that I'm haunted by your ghost"