Sunday, March 18, 2018

A #FightingForMaya Update: How to Eat a Whale.

For our family, February was a very busy month.  I settled into a new job.  The household went into full relocation mode with selling our Ocean Beach house and working to locate a new house in L.A.  Of course, this means lots of busy days and nights.  Emotionally, its hard to say goodbye, but also exciting to start anew.

In the midst of it all, I took a brief trip to Copenhagen, Denmark.  I was invited to participate in a symposium that was exploring the various phenotypes of Maya's disorder.  I presented on the families' perspective.

It really doesn't capture it to say that I was both "honored" to represent the families that we have met along this journey and "emotionally overcome" by the sheer magnitude of our five year journey from diagnosis to that meeting in Copenhagen.  It is impossible to describe how I felt sitting in that conference room in that far off city for two and half days, while doctors and professionals from around the world discussed the disorder.  The English language does not have words to describe how lonely and lost we were when Maya was first diagnosed.  Yet, here I was in this room as professionals explored the disorder and how best to support, treat and one day cure those impacted.

I'm often asked, what will come out of the Copenhagen meeting.  Its almost as if people are expecting that I would be handed the magic white pill at the end of the meeting.  The pill that will cure it all and rewind things to that day when Maya could run and jump and sing.  Perhaps, that is what I secretly wanted.

In the end, the meeting was a step in the right direction.  One bite of the whale...

Melinda Mae
by Shel Silverstein

Have you heard of tiny Melinda Mae,
Who ate a monstrous whale?
She thought she could,
She said she would,
So she started in right at the tail.

And everyone said, “You’re much too small,”
But that didn’t bother Melinda at all.
She took little bites and she chewed very slow,
Just like a good girl should…

…And in eighty-nine years she ate that whale
Because she said she would!

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