No matter what people say, when your child is born with some kind of serious disability, syndrome, birth defect—or perhaps doesn’t survive at all—you become awash with guilt. Serious guilt. No, I haven’t spoken with all of the women in the world who have suffered this kind of hardship. I’m just making an educated guess.

Two weeks before Calvin was born my husband Michael and I learned, during a sonogram, that he had significant neurological complications. He was missing some of his white matter—a lot. White matter is the brain’s superhighway, as it’s been explained to me, the way the brain communicates with its various parts and with the body. We need it ... bad.

Before Calvin was born the doctors initially thought they saw evidence of hemorrhaging that might have caused further trauma to his brain. After Calvin was born that theory was debunked, though I always wondered if the doctors were just playing nice to make me feel better, you know, assuage my guilt over somehow causing a hemorrhage.

Since then I’ve racked my own brain for what might have gone so terribly wrong. Did I swim too hard too fast too long? Did I rest enough eat enough drink enough sleep enough walk enough?

Maybe I shouldn’t have dived into that pool drank that bit of wine ate that cheese pet that dog taken that flight worn those pants gotten that cold had that sex slept on my back gotten pregnant so late had that amniocentesis.

My friend had a son with some very serious complications. I'm not sure the doctors ever completely figured it out and therefore were never able to fully relieve his intermittent misery. Having never met my friend in person—only commiserating over the phone or in emails—she told me she thought, at one point, perhaps her son was afflicted as the result of her poor posture, being a woman of tall stature and wanting to appear shorter. While assuring her that couldn't possibly be the case I also validated her concern, which I knew came to her naturally. There’s no getting around it. Guilt. It’s just what we moms do.

Originally published 04.24.11

photo by Michael Kolster


  1. I feel so much pain for what mothers of kids with disabilities go through. As kids, we feel our own sort of responsibility (In the logic of a seven-year-old it's, "Damnit, I'm falling into another seizure. It's my brain's own fault and therefore it's my fault). But I'm fairly sure that we don't feel the sort of responsibility that parents feel it's not their fault. As kids, we try to protect our parents from our pain some because mothers can't stand to see their kids in pain. But in a failing moment as an angsty 13-year-old, we say "My brother got all the good genes! Why did you give me epilepsy, mom? And why did Dad give me bad eyesight." And we watch our mothers' expression crumble and we immediately regret the pain we've inflicted on our parents. But I always thought that my mom knew that my epilepsy was not her fault, until my neurologist mentioned something about my lesion forming in my first or second trimester and I saw fifteen years of worry release from my mom's face; she had thought it was the way she had given birth to me (my umbilical chord was wrapped around my neck and I didn't get a whole lot of air). As kids, we feel the physical pain, but ultimately we feel like we have more control. I pray that my mom does not worry about me too much and I know other disabled college kids who do the same. We're sorry we put you through this.

  2. thank you, julianna. you always bring a different, helpful perspective. xo