I am driving home to
Sitting in silence, I rub his back affectionately and he begins to cry again. When he calms I ask, “what was all that about?”
“What are you talking about?” he replies with a straight face. His emerging sarcastic wit tickles me. We both smile. He says his sister upset him.
“I don’t remember,” he responds.
“Okay, when did it happen… when she was born perhaps?” I admit he may have inherited his sarcasm from me.
Apparently, it bothered him when his sister told him to be quiet and when he tried to calm himself he kept thinking about “bad things.”
“The bad things we’ve talked about before?” I ask. He nods. The bad things we usually talk about revolve around his disease and how it confounds his every effort, desire and dream.
I usually tell him to concentrate on the good things in his life but not today. Today, I confess to him that I too find it hard to see the good because the bad things seem so big. I have yet to recover from the conference.
My son is surprised by the emotion in my voice. He quickly looks into my face and I don’t hide my tears. I am sad and angry and hurt – just like him. We hug for a few minutes, bonded in grief, and then he screams - a deep guttural kind of scream without words or full vocalization.
I ask him if there is something specific he wants to scream. He shrugs. “I hate Muscular Dystrophy,” I suggest. The emotion seems to explode out of my poor boy as he sobs heavily into my chest nodding his head. I hold him tight, tears rolling down my own face and tell him that I want to yell the same. I ask if he wants to yell it right here in this parking lot but he would rather yell in his room when we get home. We make a date: in his room, with the doors and windows closed, on his bed, into his pillows we will both scream “I hate Muscular Dystrophy!!”
Updated: March 23, 2009