Parenting Imperfecta

"World's Smallest Mother Risks Life for More Babies" blared the headline. Stacey Herald, whose 2-foot 4-inch stature qualifies her for the "smallest mom" superlative, recently gave birth to her third child. Despite significant health risks associated with pregnancy, Stacey and her husband, Wil, are open to having more kids. This openness, along with the couple's enthusiasm for parenthood and insistence that they have faith in God's ability to care for their family, have made Stacey and Wil favorite subjects of tabloid-style media ever since their third baby was born last November.

Stacey's short stature is due to osteogenesis imperfecta (OI), also known as brittle bone disease. I have the same condition, although in a less severe form (at 4-feet 8-inches tall, I am a giant by OI standards). OI complications include frequent broken bones, pain, mobility limitations, and respiratory problems due to spinal and rib-cage deformities. Like Stacey, I have three biological children, two girls and a boy. Like Stacey, I had to contemplate the risks of childbearing, although her more severe form of OI potentially brings more serious complications. Like Stacey's children, my children each had a 50 percent chance of inheriting OI. One of my children did; two of hers did. Like Stacey, I made my decisions about motherhood in the context of my Christian faith.

Our similarities accounted for my growing outrage as I clicked through dozens of articles written about Stacey and her family, many of them on sites devoted to "odd" and "weird" news. Most, including the ABC News article, used hyperbolic, inaccurate language. Stacey doesn't just have OI; she "suffers" from it. She doesn't just use a wheelchair; she is "confined" to one. A doctor asserts that pregnancy in OI women can have "disastrous consequences." I am privileged to know many women with OI who have had children. While some of those children also have OI, the most disastrous consequences of these mothers' fecundity are that they can't remember how it feels to sleep through the night yet know every word of Barney's clean-up song. A spokesperson for the national OI Foundation provided a more accurate assessment: While women with OI face increased risks during pregnancy, those risks can often be managed.

The articles made me mad, but the comments made me sick. Readers called Stacey and her husband selfish, cruel, and stupid. They said that OI is a "horrible disability," that she is "sentencing her kids to suffer." Online comment boards do not provide the most accurate snapshot of society, but so much vitriol directed toward people with disabilities offers a pretty bleak picture.

Choosing to have children despite health risks raises important moral questions that people of faith need to engage seriously. Stacey and Wil's faith was central to their decisions, but their interviews did not go into much detail about how. I don't know if their citing of God's providence stems from thoughtful reflection or a superficial belief that success in any endeavor is a sure sign of God's favor.

I will stick to what I do know:

Avoidance of suffering—ours and our children's—is not our highest moral duty. Our God, incarnate in Christ, knew bodily pain and a tortured death. Jesus' suffering does not mean we should seek pain or that suffering is a good thing in and of itself. But it does suggest that suffering is not the ultimate disaster. The Great Commandment was to love the Lord your God with all your heart, soul and mind, and to love your neighbor as yourself—not to make sure everyone is healthy, happy, strong, and pain-free.

While the physical and emotional pain of OI can be terribly hard, pain is not the hardest thing about being a mother with OI. The hardest part is knowing that I don't measure up to cultural ideals of the competent mother. I could not pace with my children when they were fussy infants. I cannot kneel down to look them in the eye. I cannot carry an exhausted child to the car. I can't ride bikes or practice soccer kicks. My inability to run and carry anything heavy would make me useless in a true emergency. Day after day, I have to relearn the truth: I am the best mother for my kids simply because I am theirs. No mother is perfect; every mother has limitations. Mine are just easy to see.

Everyone who has babies subjects themselves and their children to risks, some of them known, most of them unknowable. If we judge those whose risks are obvious, we open ourselves to the same judgment. All of us carry genetic risks (and technology is increasingly able to tell us which ones). All parents bring children into a world where disaster, illness, injury, and pain can bring "normal" life to a screeching halt. All of us are dependent on others to make it through the day. "Judge not, that you be not judged" (Matt. 7:1).