“I’m going to kill myself. I don’t want to be alive any more.”
Of all the words in the English language, none come close to describing the feeling that took root in my heart the day I heard those words fall from my child’s lips. Here he was, only 7-years-old and already exhausted by his existence, overwhelmed by a body beyond his control and destroyed by the certainty that he was less than. Bad. Stupid. Here was my son telling me in the clearest words possible that he felt he had no value, that having Tourette Syndrome meant his future would never be equal to his peers. He was giving up.
“I want to die.”
I couldn’t stop picturing my son being committed, confined behind barriers I couldn’t cross.
Would staff in a facility like that understand Tourette? How could they possibly when our own doctors didn’t seem to?I imagined him alone in a locked room, sobbing himself to sleep. How would that help him? I wanted to reach out to someone who could tell me what a parent—what I— was supposed to do in this situation, but they didn’t exist.
I thought of the mistakes I’d made before his diagnosis, remembered every time I’d begged, “please, just stop!” I thought about the times he’d been removed from class, punished, and sent home.
About how the adults in his life snapped at him in exasperation, thinking he was only making excuses when he cried and said it hurt to write or sit still. I thought of the battles over haircuts, meltdowns over showers, and the way he sobbed when we made him wear school shirts or socks with seams. In that moment a list of failures ran through my mind like charges at a trial. Clearly, I hadn’t lived up to my role as parent to a child with Tourette. And maybe, if I were honest, I just hadn’t loved him enough or the way I should have, because if I had my 7-year-old son wouldn’t be standing in the hallway, tears pouring down his blotchy face, confessing his desire to die.
“Mommy, I don’t want to live like this.”
With my throat feeling thick and my stomach churning, I called his doctor. Sharing our pain in that moment remains one of the toughest acts of my life. I know now that it was also the right thing to do.
I know now that I was unable to give him what he needed because I simply didn’t know what that was. “I’m going to kill myself. I don’t want to be alive any more.”
“I was so lucky to find the Tourette Association of America.”
It was their strength I leaned on, the care of their Centers of Excellence and the amazing web of volunteers who helped us survive from one day to the next. My son was one of the fortunate ones— eventually he was able to find his way from despair to joy. The young man he has become is full of strength and resiliency; an incredible self-advocate, a successful student and a very happy (almost) adult with Tourette. I know that the TAA serves as a light for the countless other families currently struggling to find their way in the dark.