What the hell went wrong? I sometimes think, looking down upon my son’s thick head of hair and stroking it. We painted his room when I was pregnant, but I wore a respirator. I swam a mile almost every day. Was it the chlorine that soaked into my body, my lungs? I drank bits of wine here and there, like the Europeans, but not enough to dizzy a mouse. I ate well—not too much—slept well, relaxed, moved my body and felt happy. How did that one sperm, strong enough to break into that one egg, turn into Calvin, into a boy so weak and compromised who lacks the balance to walk completely by himself, the coordination to manipulate objects, the ability to understand the abstract, the words to tell us how he feels or the capacity to do most anything?

Then came the seizures. All that was before the seizures and the drugs. How does he withstand it? How do I? Do I? Barely, it would seem of late.

From all of this—and what accompanies—I seethe, at times loathing more than just my life, wondering where I am going, pondering my mortality and Calvin’s. Will I be taking care of him for the remainder of my life? What will happen to him after I die? What if he dies before I do? Will his seizures ever stop? Will I ever be able to literally let go of him and walk unencumbered by his side? Will I be able to get the hell out of here and do the things that I want to do, go where I want to go?

But, like so many things, there are no answers, only slow time. So, instead of thinking of tomorrow or next year or five, ten, fifteen years from now, I think only of tonight, of the glass of wine and the bit of sushi I’ll be nibbling with my friend Vivian, which is a long overdue and most thrilling engagement to contemplate.

photo by Michael Kolster


  1. All I have is...hang in there. I regularly play the "why" game. Hope you at least enjoyed the wine and suishi. Sometimes being in the moment is the only way to survive.

  2. Christy,

    I read your blog religiously, day after day. You probably don't realize (or maybe you do) how you touch people, how much your words mean to so many of us.

    It amazes me how you manage your day to day life, and you do it beautifully, gracefully and artfully. I don't have a special needs child, so I mean this in the very best way possible, but reading about your troubles makes me grateful for mine. Granted, I don't like my own troubles either, but yours put mine into perspective. Some days, I don't feel like it, but because of you, I take another deep breath, and continue to put one foot in front of the other.

    You really are a warrior mom, and many of us are rooting for you, and for Calvin, every day.

    1. dear anonymous, it's messages like your own that help keep me fueled. i so appreciate you taking the time to write. may i ask how you found my blog? curious. xo

  3. Not anonymous (just can't figure out how to leave a comment with my name, since I don't have a blog or other URL)

    I read Elizabeth's blog (A Moon, worn....) and discovered yours from hers. There are some very special seizure warrior moms (you two are my favorites) and all of your readers are enriched by the observations you two share.