Josiah

Jen Amunategui

Todd Frankel

Narrative Feature Writing

19 April 2014

Josiah

Josiah stands quietly in his father’s shadow. The hot, spring sun beats down as they listen to instructions being yelled to the group of parents and children gathered to hunt eggs. A faint smell of sunscreen wafts through the crowd. Josiah crouches down to rest his legs. He doesn’t whine or ask to be picked up. He watches the other kids. At the sound of “Ready?” he stands straight up. He looks around. The other kids are beginning to move. His dad looks down. “Are you ready Josiah? Let’s find eggs.” 

For weeks Josiah has been practicing hunting for Easter eggs. It started as a game at Grandma’s house, when he found a basket of eggs and his dad didn’t know what else to do but play hide-n-seek. After that, anytime they visited Grandma’s, Josiah appeared with the basket and would sit patiently on the bottom step, eyes closed tight and covered with his palms, until the eggs were hidden. 

The kids rush towards the grass and Josiah’s firsts steps are interrupted by a bump from a bigger kid. Josiah’s not fazed. His dad helps him up from the pavement and hand in hand they head into the grass. 

His pace is slow and steady. Well, mostly steady. As steady as a petite two-year-old can be as he traverses four inch high grass and mounds of mulch in search of small, colored plastic eggs. Josiah’s only sound is his breathing -- raspy and a little heavy, considering the short walk to the grass. He balances himself with a slightly outstretched left hand while clutching the handle of his plush, firetruck shaped easter basket in his right hand. He’s lagging behind the bigger kids a bit, but no matter. His dad is a few steps ahead, pointing in a hedgerow and Josiah zeros in. That bush yields an orange egg; in the next is tucked a yellow one. 

Onward they go. Josiah shields his eyes from the afternoon sun, spots his dad crouched down by a patch of mulch and toddles over. He crouches down too, but the grass is prickly. He raises up, tugs his blue shorts further down over his knees and mimics his father again. Another egg goes into the basket. A fellow dad, guiding his own kid through the hunt, alerts Josiah to a stash of eggs in the grass further ahead. “We’ve g ot enough,” he says. 

To reach these eggs, Josiah must cross the driveway. He reaches out his hand and finds his father’s right index finger. He steps down, picks up his pace to get across the asphalt and takes a big step up onto the opposite curb. Then he lets go. He’s in his element now. Just like they practiced.

The grass is just tall enough today to challenge Josiah’s skills. Another egg in the basket. And another. Occasionally he misses one and shields his eyes again as he looks up to the sound of his father’s voice, “Josiah, here. Look here.” Josiah’s eyes follow the line of the outstretched arm, to the pointed finger, to the treasure nestled in another part of the lawn. Another egg in the basket.

“I’d call it a success,” said Josiah’s father, John. “The practice paid off!” Josiah knew what to do. He was patient and listened to the directions. When the bigger kids took off, so did he. It was a setting small enough to allow Josiah to experience his first outdoor group activity without being overwhelmed. “I don’t get a lot of firsts as a divorced dad with joint custody,” said John. “This was great.”

This was a big first for Josiah. At just age two and four months, Josiah has already endured three surgeries on his tiny body -- stomach surgery at age seven days, open heart surgery at three months and foot surgery at about a year and a half. He was in leg braces for 22 hours a day until his second birthday. Another open heart surgery is required by age three and a half; between 18 and 30, Josiah will need a new heart. 

His parents, John and Christie, knew something was wrong at their first ultrasound, when the doctor noticed the baby’s stomach was developing on the wrong side of his body. John and Christie were immediately sent to St. Louis Children’s Hospital and his progress was monitored throughout the pregnancy, ensuring they were prepared at the time of birth. Josiah was born with all of his internal organs reversed, no spleen and two holes in his heart. It’s called Heterotaxy asplenia and affects four of every 1,000,000 babies born, 85% of these infants not surviving to age one. Even more rare within a rarely seen disease is that it affects only the male members of a family -- Christie also has a 16 year-old son with Heterotaxy, though she shows no symptoms. 

Josiah’s heart was not only on the right side of his chest, but also had two holes and a faulty valve that obstructed blood flow to his lungs -- Hypoplastic Right Heart Syndrome, Atrial Septal Defect and Ventricular Septal Defect. Along with the internal organ malformations, Josiah was born with Vertical Talus. The talus, a bone between the heal and leg bones that helps build the ankle joint, formed incorrectly causing his feet to point up towards the shins. Instead of an arch the soles of his feet curved out, like the bottom of a rocking chair. Once his leg braces were no longer required, the reminders of Josiah’s ordeal are his weekly meetings with an occupational therapist, a physical therapist and a nutritionalist and daily doses of Penicillin to help protect him from infection. In winter he can’t be around many people and absolutely no one without a flu shot. 

“You can’t keep a kid in a bubble,” John said. 

Planning activities with his son can be difficult, though, due to his precarious health situation. Not too long ago they had planned to attend Josiah’s first Cardinal’s game, but on game day Josiah awoke sick with a 101 degree fever. The Easter egg hunt was an activity they could do together, in a small venue, with other children for Josiah to play with. The only clue to his challenges, his shortness of breath. 

At age two, a “miracle baby” John calls him, Josiah is clueless to his physical challenges. He loves Curious George, dill pickles and ice cream and dancing to Macklemore and Ryan Lewis. He knows how to work an iPhone, his little fingers deftly swiping across the screen until he finds the app he wants to bring to life, and it’s confusing that he can’t control a television screen the same way when he pokes its screen. He loved the fish in the pond in his dad’s backyard that they now have an aquarium in the house where Josiah can point out “Big fish. Baby fish.” He knows what Cardinal’s baseball is and loves to give high-fives. He doesn’t know he was not very likely to make it, and whether he remembers the leg braces or not, in the five months since he’s had them removed, he’s progressed nicely from army scoot to full on running. 

While his dad catches up with friends after the egg hunt, Josiah finds another treasure -- a group of young boys playing in the grass. He toddles over to them without a backward glance. His first real day of play, he watches and mimics more than interacts. Soon his attention is caught by a small flag on a wire spoke stuck in the yard. 

Josiah pulls it out of the ground and excitedly waves it around. “Flag. Flag,” he says as he comes running to show his dad. “Look at that,” John says, smiling down at him. “Go  put it back where you found it.” And Josiah does. Then he pulls it out again and taps it  against the tree in front of him. He pokes the flag back into the ground once again, and  runs off to find somewhere else to explore. 

They settle, finally, in the grass to dig through Josiah’s trove of eggs. Josiah quietly watches his dad open and empty one egg, then another. He understands. 

He picks up an egg. 

Pulls it apart. Josiah hands the small green Skittles bag to his dad to open. It’s clear that John believes in his son. He never once picked Josiah up to hurry him through the hunt. Keeping up with the other kids was not his focus. Josiah wasn’t getting as many eggs as quickly as the other kids, but he was walking. “He’s doing so well in these shoes,” said John, an accomplishment because Josiah hasn’t had to wear shoes and walk this much before today. 

John’s goal for the afternoon was for his son to experience a fun, spring activity with kids his age. 

“We planned something, did something, and no one got hurt,” John said, grinning from ear to ear. It’s that simple.