Ari Hest has a song titled “Big Ben.” His website says he wrote it for a friend who was going through a rough time and he offered the clock in England as a reminder of all that is stable and lasting. And yet, the lyrics strike a cord and resonate in my heart. They describe perfectly what it is like to have a child with Sanfilippo.
Someone please explain
How days so plain
Became so fickle and dangerous
Have gathered an unsettling dust
Have beaten up the both of us.
From the moment your child is diagnosed, life is altered. Days that were once plain are now “fickle and dangerous.” The child sitting on your lap is no longer just your boy. He’s a boy who might never. A boy who, if he does, you cannot stop yourself from wondering . . . for how long? Life with Sanfilippo gathers “an unsettling dust” that covers even the everyday things that you do.
In 2001 when Ben was playing tee ball like every other 5-year-old, I described that feeling, “And then it hit me. Sometimes he is so regular. Simultaneously, I was filled with an unyielding sense of sorrow and overwhelming joy. I find the regular moments in life intensely profound and extremely painful. Even as I ache for them to last, I wonder if it wouldn’t be easier if they never tempted me at all.”
Ben is 11 now and his days of tee ball have passed. So many of the things doctor’s warned us would come are here. Over the years many of you who have shared this journey with us ask how Stuart and I face the daily challenges of our lives. Honestly, there are days when it feels as though Sanfilippo has “beaten up both of us” and nothing can drag me out of the sadness that fills my heart and the frustration that fills my head.
And then I hear Ben’s contagious laugh bellowing out from his special room and I know he got the joke on his Arthur video. Or I hear him say, “seven, eight, nine” as he counts along with Nanny from a 101 Dalmatians. And I feel victorious. At that moment, I know how it is that I have the courage to celebrate each day, good or bad, happy or sad, spent with Ben. Courage is the gift Ben has given me.
And again Ari’s lyrics resonate . . .
Don’t go down, don’t go down that easy!
Ben & His Dog | Ben's Last Day | Morning Breakfast
Ben's Words | The Farmers Prayer