By Star Bobatoon

We are sitting in the parking lot of a small deli off Interstate 95.  My 8-year old son has been crying in the back seat of the car for the last 20 miles.  I assume his upset involves some interaction with his 3-year old sister but he shook his head when I asked if he wanted to talk about it.  I warned that if he didn’t calm himself I would pull the car over and he would have to talk to me.  Ten minutes later I pulled off the highway into this parking lot.  

I am driving home to Virginia.  My children have been in New York with my mother for the last few days while my husband and I attended a conference on Muscular Dystrophy.  I have spent the last four days having this disease and the devastating effects it will likely have on my son shoved down my throat in 45-minute increments throughout the course of each day.  I went willingly because it is information I needed to know but it was very hard to swallow. 

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. 

“What happened?” 

“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!!” 

Star Bobatoon is an attorney, trainer, speaker and author.  Her passion is providing services for families and organizations that support families with disabled children.  She can be reached at star@starconsultingllc.com. 

Joan Fleitas,Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNYy
Bronx, New York 10468

Last Updated: March 23, 2009