During a 32-week sonogram Michael and I learned that there was something terribly wrong with our unborn child’s brain, that he had ventriculomegaly, which meant that the lateral ventricles in his brain were enlarged and could continue to grow, filling with excess cerebral spinal fluid and pushing against the surrounding brain tissue. The doctor told us coldly, “this is something you need to worry about.”

Our learning curve in the following days, prior to Calvin’s birth six weeks early, was practically vertical, having never heard of this ventriculomegaly thing before. We were faced with the grim news that the condition, if it worsened, might require emergency neurosurgery at birth to install a shunt allowing excess fluid to drain off and hopefully preventing hydrocephaly and brain damage.

At the time I remember thinking about the cliche many parents quote, which is that they hope their child is born with ten fingers and ten toes. I wondered if most parents hoped specifically that their child’s brain be formed correctly, something I took for granted, at least until that sonogram.

Thankfully, when Calvin was born his enlarged ventricles were stable so he did not need a shunt. Nevertheless, he spent a week in the neonatal intensive care unit (NICU) plus six more in the hospital before he was stable enough to go home. During the first few weeks Michael and I ate meals and bunked at the nearby Ronald McDonald house but spent most of our time beside Calvin in the hospital holding him, nursing him, changing his diapers and hoping. Michael traveled 25 miles back and forth from the hospital to the college to continue teaching, having taken on an extra class on behalf of a colleague. Even so, Michael never let me and Calvin down. He was always there when we needed him during what felt like a very fragile situation. He was our rock.

The Ronald McDonald House, a modified old brick structure, had a dozen rooms for parents of sick children being treated at the hospital. One night, while eating a late dinner in the communal dining room, Michael saw a woman he had met once briefly—a fellow artist there with her companion. She had given birth around the same time that I had and her child remained in the NICU. I remember seeing who I assumed were her parents gathered closely around her with dour faces speaking quietly in a corner of the kitchen. I didn’t know what afflicted the child, a daughter, but I got the sense that it was a grave situation.

We heard from a mutual friend, only a few months after our stint at the hospital, that the artist woman’s child had not survived—a pain I cannot even begin to imagine.

To this day, thinking about that couple deeply saddens me though I did not know them. And I realize that, even though Calvin’s health is so complicated and dire, that he faces limitless developmental obstacles and is a great challenge to raise, I am thankful for our good fortune to still have him gracing our lives.

photo by Michael Kolster

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