Feature

Fragile

When Jillian Groh checked in to the downtown Westin Hotel one cold night almost seven years ago, everything felt certain. Then things changed forever.

October 2013

The sound begins as something of a whimper. Bill is lying on his back in the middle of the night when he hears it. A few moments pass. Then the whimper becomes a scream—jagged, piercing, broken. Bill jerks out of bed, cracks a Dr Pepper—the soda helps him shake himself awake late at night—and rushes down the hall to his daughter’s room. 

A few years after the accident, the Grohs decided to care for their daughter themselves at home. They eventually moved into a house in Scottsdale their son owned and fixed it up so it was wheelchair-friendly. Ever since, nearly every night has been like this: Bill waking in the dark to his daughter’s groans and wails. The process has become disconcertingly normal.

He peers through the darkness. As with an infant, Bill does his best to quickly decipher why Jill is screaming. He checks to see if she needs to be changed, or if she’s trying to bite herself—a tendancy that has left scars on the top of her left hand. Sometimes all Bill can do is dab the spit from the corner of his daughter’s mouth with a washcloth and sit with her, hoping his presence eases her pain. 

No one in the Groh house sleeps more than five consecutive hours. Typically Bill takes the night shift and Janelle takes the morning shift. Jill still isn’t responsive, but her eyes are often open, casting a blank stare. She no longer has control of the part of her brain that tells her muscles to relax. Her upper body looks as if it’s tied in a knot. Her chin is pressed firmly against her left shoulder, and her arms are tucked tightly, each in the shape of a bird’s wing. Like her arms, Jill’s ankles are locked, her toes pointed inward. Doctors told the Grohs the only way they could “fix” Jill’s feet would be to break her ankles and reset them in a natural position. Bill and Janelle decided there was no need.

The Grohs do everything for their daughter—feed her, change her, brush her teeth. Jill still has the feeding tube in her stomach. Three times a day, Janelle pours a bottle of a nutrient-dense liquid called Compleat into a large syringe and injects the liquid into the tube. There’s a medicine pouch the size of a hockey puck underneath the skin near Jill’s belly button, which dispenses medicine throughout her broken body. Once a week, Janelle takes Jill to a physical therapy appointment at which occupational therapists try to loosen Jill’s body by stretching her limbs and placing Jill in a contraption that allows her to stand. Between insurance coverage and caring for Jill themselves, the Grohs have made things work financially, but it has been difficult. After the accident, Janelle went back to work a few days a week. The Grohs worry about what will happen when they’re gone. Who will take care of Jill? How will the family afford to provide her with the type of support she needs? 

Jill’s room is a blend of her life before and after the accident. She sleeps in a hospital-type bed, and there are bottles of Compleat and stacks of absorbant briefs on a shelf in the corner. On a dresser underneath a TV, there are pictures of Jill from her cheerleading days and an “Award of Excellence” she received during her time at the Hyatt. When the Grohs need to move Jill from her room, they use a lifting machine and a series of harnesses to pick her up. She hangs heavy and helpless as they transport her to the couch in the living room or to her wheelchair. Though Jill may never be fully responsive, the Grohs say she has perked up since coming home. One day Janelle was talking to her daughter, and Jill let out what sounded to Janelle like a little laugh. It was the first time in years Janelle had heard Jill’s voice. 

Last summer, one of Jill’s old high school friends had a bridal shower. The Grohs have a minivan that holds a wheelchair, making it possible to get Jill out of the house. Janelle dressed Jill up and took her to the party. Janelle was on Facebook a few days later and noticed the friends had posted pictures. Not one photo in the entire album included Jill. Bill and Janelle were crushed. “I can’t look at Facebook,” Janelle says. “It breaks my heart. I’m just too consumed with taking care of Jill, and our little life, our little routine. To think that Jill will never be married or have kids is just heartbreaking.”

 

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