The joy in her laughter: Sonoma writer reflects on raising a daughter with cerebral palsy

Lyle McKeany was over the moon about the baby he and his wife, Allison, were expecting in 2018. They had finished the nursery and were practicing their Lamaze breathing in anticipation of daughter Emily’s arrival on June 4. It was supposed to be the best day of their lives.

The labor was fast, and the birth faster still. The baby arrived in the middle of the night, just 12 minutes after the McKeanys arrived at Sonoma Valley Hospital.

But she didn’t arrive pink and squalling, as expected. Emily was limp and grey when she came into the world, and she didn’t draw a breath on her own for a very long time. The oxygen deprivation damaged Emily’s brain, leaving her with severe cerebral palsy. The story the McKeanys thought they were writing was rewritten in an instant, bisected by a dividing line drawn in permanent ink.

Hypoxic-ischemic encephalopathy, as such brain injuries are called in the medical parlance the McKeany’s now speak, is caused by acute blood loss and oxygen flow during pregnancy or birth. The only known treatment is therapeutic hypothermia, where the newborn’s body temperature is mechanically lowered in an effort to reduce swelling in the brain.

Within a few hours, 6-pound 7-ounce Em, as her parents call her, was helicoptered to Sutter Hospital in Santa Rosa where her body temperature was kept artificially low for three days. “It’s sort of like icing an injury,” Lyle said of the process in the blog he began writing after Emily arrived.

But the damage to his daughter's brain was profound, and twice in those early days, her heart stopped. “The first week, Emily coded two different times,” he said.

Now Emily, nearly 3, uses a special wheelchair for mobility and is fed through a tube in her abdomen. Allison, a nutritionist, spends a lot of time preparing healthy foods, determined that Emily grow as normally as possible. “Feeding her is basically a math equation,” Lyle said.

Traumatic events, for most people who live through them, are often mercifully brief: the car crashes or bullets fly and then chaos is followed by calm. But the McKeany’s trauma is re-confronted each day. “A therapist we were seeing told us that our trauma was different because we are reminded of it daily,” said Lyle, 43. “This is our new way of life now, and will be for the rest of our lives.”

Finding joy in a life upended by trauma has become mission critical for Lyle and Allison McKeany. The first — and hardest — step was the reckoning, confronting and making peace with what was lost.

“I’m a total golf nerd, and played a lot before COVID. I always thought I’d teach my kid to play golf. But that’s off the table now,“ Lyle said. “And there are definitely moments where I see kids who are younger than her doing simple things like eating their birthday cakes and running around. Those moments are hard. But the joy comes in the moments when she’s laughing, or listening to her music, or reacts to me in a certain way.”

The struggle to find light in the darkness has led Lyle to pick up a long dormant habit. To work through the complicated feelings that accompany parenting a disabled child, he’s begun to write them all down.

He publishes a weekly newsletter on Substack, an internet platform “to enable readers and writers” with hundreds of content producers and more than 250,000 subscribers. The essays are raw, readable first-person accounts, meditations on a journey McKeany hadn’t planned to take.

His work is beginning to reach a wide audience, and hearing from families who find comfort in it has motivated him to begin planning a memoir. “Just Enough To Get Me In Trouble” is a collection of meditations on the already difficult task of raising a child, doubled by the challenge of severe disability.

McKeany has always chosen to do difficult things; he’s an odds-beater by temperament and type. For years, he made a living playing professional poker, and he was the bass player in a rock band a major label spent more than $1 million promoting, before their first single, released Sept. 9, 2001, was irretrievably eclipsed by the events of 9/11.

Raising Emily may prove to be harder still, but McKeany is willing and able. “The worst is when we’re out in public and people just stare,” McKeany said, adding that he sincerely welcomes — and far prefers — questions from strangers.

“It’s easy to see someone in a wheelchair and just go about your day. But we all have stories to tell, we’ve all gone through some really hard things. If I can help someone live in that world for a minute, maybe I can effect some kind of change in them. There are times when we’re just trying to get to the next minute, and other times where it feels more day to day.

“We’re all going though our own struggles, trying to do what is best for our families. I always kind of joke that I was barely ready to be a dad, let alone a special needs dad. People always say, ‘I don’t know how you do it,’ and I think, ‘We didn’t really realize we had a choice.’”

Contact Kate Williams at kate.williams@sonomanews.com.