“Don’t Let Disease Be Your Grinch This Christmas,” Says Mother of Patient with Batten Disease
December 21, 2013
With the holidays approaching, the children and I have decided to decorate our front yard with characters from our favorite Christmas story: Dr. Seuss’ How the Grinch Stole Christmas.
Twelve years ago, my brother, John, made a Grinch who sat on the front porch at Christmas, and I remember all of the children being fixated on every detail, fascinated with his yellow eyes, bright green skin, and long fingernails. Every wrinkle of his face was animated with a grin that held the awful thought of his plot to end Christmas by stealing it away from the Whos. Every child imagined what it would be like to wake up with no presents or toys, and the Grinch would finally be satisfied that he had put an end to the noise and commotion of Christmas.
So with inspiration from my brother, I struck out to set up tables in the backyard, pulled out the paint and brushes, and began creating our very own Grinch with a jigsaw. One cut led to another, and it seems now we are creating the whole scene where the Grinch is crouched at the top of Mt. Crumpit with one finger on the sleigh full of stolen presents teetering on the edge of a cliff. Overcome with shock and disbelief, he cups one hand to his ear because he hears music and singing coming from Who-Ville beneath. He realizes that his horrific act didn’t stop Christmas from coming……it came anyway! The Whos are standing hand in hand joyfully singing, in spite of the fact that there are no toys and presents.
I must admit, the child comes out in me at Christmas, and I absolutely love the creative process and fantasy of what it will all look like when it is finished. I enjoy the buzz from waking up in the middle of the night with a new idea and the simple mindlessness of painting and cutting. So with the jigsaw humming, and sawdust flying, the whole scene animated itself in a completely new way for me. It occurred to me that not only was I creating a scene from a popular Christmas story, but I was animating a belief that I hold deep at my core.
Life is difficult. People get sick, loved ones die, parents get divorced and at one time or another, we are all faced with pain and suffering. But in spite of how challenging life can be, God promises us what is constant and unchanging and provides us with what will sustain us through any storm.
Batten Disease is a horrible disease that may cripple my child and leave her blinded and perhaps take her away from us too soon. But I remind myself that Batten Disease CANNOT cripple our love, or blind our faith or take away courage or rob our peace or destroy love, friendship, and community. And it will never take away hope.
So my Christmas wish to you is never forget: Nothing….Nobody……Not even the Grinch can steal away your faith, hope, love, and joy!
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