The only thing parents want for their kids
The day before I began a five-year study at the University of Pennsylvania for Cerebellar Atrophy patients dad brought over a few pictures from the 1994 CYO baseball championship game.
Context: It’s the bottom of the 6th (the last inning). With the game tied 4-4, I lead off the inning with a hit that, despite a mighty pubescent swing, tinkles in front of the pitcher’s mound. I sprint down the baseline, the first baseman’s glove pops, dust settles on suburbia, and the umpire barks “SAFE!” It must have been when I returned to the base, put my hands on my hips, checked the third base coach for signs, that mom snapped the picture. A picture that is a suitable metaphor for my life right now.
I’m seated in the far corner of the Neurology office waiting room with Clark Able by my side. People with their own version of Clark Able, hobble in, check in, and fill the waiting room seats. Except for the two receptionists talking about lunch orders, the room is quiet. With his hands behind his back, dad paces. Like it’s the bottom of the 6th inning. And the game is tied. And his boy is at bat.
Dad distracts himself by looking at paintings by Parkinson’s patients. I distract myself by looking at my phone. Before we left this morning, I snapped a picture of the picture above. I know, it was only a CYO championship. I know, I was 14. Big deal. Get a dog and move on.But that picture captures my childhood innocence. I was safe. I was young and strong and naively sure nothing bad would ever happen to me. Also, that was the last competitive baseball game I ever played in. And just last week, after straining my shoulder opening a kitchen cabinet door, I realized my romantic dream of playing in the World Series will never come true. Such is life.
Patients are called and led by nurses into the mouth of the elevator. Dad wanders back to my side. He was our team’s coach. I have to imagine, as he watched me run down the first baseline , he just wanted his boy to be safe. Which is what he wants right now. Which is something all good parents have always wanted. To know your kid is safe is such a primal feeling. I shift my weight and look at dad. To him, I will forever be a kid.
To take part in the study, requires genetic testing. Testing that would reveal what mutated gene caused my Cerebellar Atrophy– information that could lead to life-altering treatment. However, and this part terrifies me, the testing may show if I passed on my disease to my kids.
Would you want to know you were genetically responsible (or irresponsible) for giving your kids a disease? And if you knew, would you tell them? Or would you keep it a secret? Would you continue to support their fantasy that they will always be safe?
A parent’s chief duty has always been to keep their children safe. To preserve their well-being. To protect them from both earthly and biological dangers. It’s why Cindy and I have an ancient lump in our throats every time one of our kids climbs our backyard swing set without shoes on or when one complains of a headache. We want to keep our kids safe yet know in the end, we can’t. And as parents we live, as best we can, in the hard space between wanting and knowing.
On that warm June night, in 1994, as the sky turned a soft pink, I used my body, the same one I have now, to round the bases with ease, to score the winning run. On that night, 27 years ago, I was safe. On that night, after my screaming teammates pounced on me, I walked down the first baseline and hugged my dad.
A short, blonde-haired nurse enters the waiting room. “Jason,” she says. With Clark Able’s help, I stand. Dad is there, like he always has been, by my side. He looks at me, furrows his brow and asks “Are you okay?”
The subtle, loving act of a father checking on his boy. A father, who like me, is concerned. A father who wants nothing more than his kid to be safe.
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