How I Made the Break

I have read a few stories now of parents dealing with their children’s diagnoses. The same word keeps coming up in the following phrase: “I was devastated.” Yes, I was devastated too. But I look at this word now and think how incredibly nothing it sounds compared to the violence of emotion behind it. It’s almost a dam against comprehension. Cities are devastated by natural disaster and tweens are devastated Joe Jonas will never love them and the word means the same to each.

I was devastated upon confirmation that my daughter had Costello Syndrome. But here is what that really meant:

It was June. Willa was again in the hospital and every day I was riding the commuter train 2 hours down to Philadelphia to spend the day with her then come back in order to sleep. Rinse, Repeat. This had been going on for a week.

One morning while getting dressed and readying myself for another day on the Cardiac Care Unit I paused. I realized I was alone in the house. The neighbors were at work. The air outside was not yet hot with the day, the windows were open and I could see the tender green of the neighboring trees.

I started screaming. Not crying, not wailing, not asking why, no tears. I just screamed with my entire body behind it.

I broke the dam of devastated. I broke capillaries in my face. I screamed for everything we lost in this storm. I screamed for the disappointment. I screamed for the things we would never have. I screamed for the places we would no longer go in life. I screamed because I will never be the mother of the bride. I screamed because my daughter will never share romantic love. I screamed for the grandchildren I will never have. I screamed and screamed and screamed.

And then I finished getting ready and I drove to the train, took it the two hours to Philadelphia, spent the day with my daughter and then came home to sleep.

Rinse, repeat.

And I never went back.