Sometimes I'm Puzzled...(by Michael)

Sitting across from Ella while on the hardwood floor, her back resting against the wall behind her, I see my three-year old concentrating on a game.  Her focus is sharp, her intentions are calculated, her body unnaturally fighting her desire to manipulate not only herself, but the world around her.  

She sits in front of me, void of any braces, as she relies on her own devices to keep herself balanced. A considerable amount of energy on her part is used simply maintaining her sitting position as she plays the game in front of her.

The game is a wooden board covered in a strong but thin plastic.  Pathways are carved into the board, intertwining and intersecting, and at the ends of the pathways are circles (almost like cul-de-sacs) which are of various colors.  There are tiny magnetized balls that are colored the same as the pathways' end circles, and a magic magnetic wand is roped to the board.  The object: using the magic magnetic wand one must move the little colored magnetic balls to their rightful colored circle-spot.  Patience and dexterity are required.

The board, at first, rested on her lap.  This presented a problem, though.  Every time she shifted her weight the little balls would roll out of the places she wanted them to stay. 

We spread out her feet and placed the board on the floor, in between her legs.  Now it was stable.  But now she had to grapple with gravity as she needed to reach across the board to move the tiny balls around.  

I watched.  I coached.  I helped just a little.  She did wonderfully.  Challenging her own comfort level, reaching farther and crossing mid-line.  Leaning on her one arm in an appropriate position and then switching; transferring the magic magnetic wand from one hand to the other.  

A simple game--yet riddled with a host of challenges for Ella. 

Real Challenges.  
                          Difficult Challenges. 
                                                           SMA Challenges.

I'm sometimes puzzled by this disease...

I'm sometimes puzzled by how one can lose their muscle functioning yet still take on the challenges that are part of everyday life.  

I'm sometimes puzzled by the sheer determination exhibited by a three-year old when often, I feel defeated.

I'm sometimes puzzled by how Mother Nature orchestrates our lives--providing us with everything we need despite our lack of seeing it right in front of us.

I'm sometimes puzzled by the strength found within a frame of a person so delicate and fragile, so young.

I'm sometimes puzzled by the courage I find by simply watching my daughter overcome a disease--each and every day and every night...

When she finished her magnet game she asked for a puzzle. With gratitude for her persistence and an eagerness on my part to engage her intellectually once more, we puzzled through the puzzle, despite SMA.  All the while, as I was with her, I myself was puzzled...simply puzzled.

She's quite a person...