Thursday, March 20, 2014

Neurosurgery Visit and Update...

Megan took Meara for a checkup today with neurosurgery.  Things are looking on the up.  We've been wrapping her head with the ace bandage but less each day.  Now we are only going to keep it wrapped at night and let her be free of it during the day.  The fluid pretty much is draining.  Every now and then it'll build up a little down by her ear and cheek but then it will disappear…hopefully meaning that the shunt is doing it's job.  Booyah.

So, she is looking like regular Meara, acting like regular Meara, and we are living each day with optimism that this is going to be the next step toward reclaiming her childhood.  Not that she hasn't been able to be a kid throughout all of this…just hoping that she (and we) can do so without the constant trips/visits to the hospital.

I was listening to Arvo Part's "Cantus in Memoriam Benjamin Britten" for string orchestra and bell this evening.  Sat at the dinner table while listening and writing out a to do list for the morning…literally wept onto the paper.  And the to do list turned into this:

The bell tolls…and the ice melts, disappearing into the green grass.  An awakening, a rebirth…a capsule that dissolves into trajectories of new beginnings.  We are blessed.  We are strong.  We are weak yet determined.  We are…human.  Meara has given us a gift that we will be unwrapping for the rest of our lives…and we are grateful.

Saturday, March 15, 2014

Despite it's alright.

Since Meara's shunt revision the fluid did not go away, meaning the valve wasn't working.  In fact, the fluid built up significantly.  A week and a half ago, they did an x-ray and determined that there was air in the valve.  The surgeon manipulated the valve with his hands (on top of the scalp) and then sent her back for an x-ray.  The x-ray showed that the air had most likely gone away.  He sent her home to see what would happen.  What happened was nothing.  The fluid stayed.  

So, this past Thursday she went back in for a MRI and x-ray.  On Friday Meara was given anesthesia and the surgeon drained the fluid with a syringe with the idea that this would "reset" the shunt.  Basically, to equalize the pressure (in layman's terms). The surgeon concluded on Friday during the procedure and from the Thursday tests that the shunt/valve/catheters are in working order.

Meara is home and her head is wrapped tight in ace bandage and we just wait again…to see if this will finally work.

How can we begin again?  How can we just live in this constant yo-yo...called life? 

We met with Meara's kindergarten teacher on Tuesday for her parent teacher conference and IEP meeting.  Her speech teacher was also with us.  Both are an amazing gift to Meara and our family.  They exude love and embrace.  They treat working with children as a privilege and a great responsibility.  They also embody warmth and compassion.  These teachers are an inspiration and make me want to be a better teacher myself.

It always gives my heart a great deal of fuel for thought.  It catapults my mind towards reconciling why this world of ours is always searching for perfection.  I mean, the world is addicted to perfection.  Excellence, achievement, "rise to the top".

For what?  To be alone?  To suffer in loss of opportunity for friendship, community, experiences in life that aren't able to (or even shouldn't be) quantified?  What about the learning and personal growth that unravels when we decide how we respond to and embrace weakness…and failure?  You know, Meara's teachers don't want Meara to be "perfect" in the sense of academic achievement.  They want her to learn, and to love learning but you see, she was born her perfect self.  Is she "perfect" at anything?  Goodness no!  I'm not either!  But she's the perfect self that she was meant to be.  And one day I, along with Meara, will learn to love and appreciate ourselves as being the perfect "imperfect" individual that we are meant to be.  That means accepting, and forgiving ourselves.  

I am grateful for the women in my life.  The one I married taught me that acceptance begins with intimacy and vulnerability.  The other two that revel in childhood mirthfulness are still teaching me to forgive myself on a daily basis.  Every night before I go to sleep my adult, society trained mind starts the conversation about the failures I had as a Dad that day…but then, my heart turns towards these two beautiful, sleeping girls, and it says…just be there for them.  Just love them unconditionally without restraint for the rest of their lives.  And you know what?  I can do that.  And I'll do that perfectly.