Between Heaven and Earth

Story and Photos by Brenna English Chapman

When the Frakie’s wake up in the morning, they always have the same hope in mind. That they will walk into Peter’s room, and find that his blankets are still moving.  They watch, desperately waiting to see his chest moving up and down before they even get a glimpse of the dawn.  Peter, a member of the Salish and Kootenai tribe was given the name “ Sun Child,” after much consideration by the tribe because he was born, and lives between heaven and earth with the same unpredictability.   No one knows whether Peter will be staying, or going. Or whether he will be alive tomorrow.

When Kari and John answered an ad placed in the newspaper for a long-term caregiver for a Native American child with severe medical problems, they were told upon calling for details that Peter might not be with them for very long. When Kari and John asked their daughter, Jori her permission to take in a foster child with severe medical needs, she gave them the answer they wanted to hear. “You go get that baby from the hospital.”

That baby was only supposed to live around three months, according to area doctors, and had already spent the first 15 at Community Hospital in Missoula, Mont.  He celebrated his thirteenth birthday on November 26.

But like an infant, Peter seldom sleeps through the night.  When bedtime arrives Peter can always be heard calling for his father from the couch. “Hold Daddy’s chest,” Peter says, and lies in his father’s arms until sleep invades.   He doesn’t want to be left alone, and John and Kari promised Peter after he was hospitalized that they wouldn’t leave him alone ever again, even for a second.

“He was smiling the whole time we were at the hospital before we took him home, and when we decided to leave for lunch I remember looking back and he had just visibly withdrawn and lay back down, curled up, and faced the wall,” Kari said. “When we got back he just saw us and started shaking the bars of the crib, and ever since then he knows we would always come back for him.”

There are no breaks for the Frakies.  To see Peter, you would know why he’s afraid to be left alone.  His health is utterly fragile. Peter was born with Fetal Alcohol Syndrome.  His frontal lobes are atrophied.  He has a tube in his throat.  He has a catheter that protrudes from the skin in his chest for needle insertion.  He has tubes in his nose to feed him oxygen for survival.  He has the papilla virus that interferes with the function of his respiratory tract, and has had over 150 laser surgeries to remove the tumors resulting from the virus.  His right lung is deflated and collapsed. He needs to be suctioned six times a day through a hole in his throat. He has a defect in hi s heart, and his heartbeat is not felt in his chest, but on his side, beneath his right armpit.  He is fed four cans a day of “Pediasure,” through a tube in his stomach because he can’t eat solid food.   He drowns in fluid when he lays flat too long to sleep.  The average cold can kill him.  Peter’s voice is soft, but harsh.  One has to listen acutely for his calling.

Peter usually wakes himself up between 4 and 6 a.m.; then listens to his favorite opera, “The Magic Flute.” John believes the music calms Peter’s brain every morning while he eats his scrambled egg with cheese and pepper with a coke, which is the only liquid he will drink. “Every time he takes a bit, he takes a sip to wash it down like a river because he doesn’t know how to chew,” Kari says. “Besides all the tumors and the tubes, the reason he doesn’t eat very well is because no one ever taught him when he was tiny.”

During the first few months of life, Kari said feeding was not a priority because there were too many other life threatening issues to deal with. If Peter resists food altogether, they increase the rube feedings. While Peter is eating, one of the family’s two dogs rests its head on Peter’s lap.  Peter knows why “Kiva” is there, and he looks around the table to see if there is something to feed him as he pats the dog under the table and mutter’s “friend.” Peter burps and tries to swallow a big gulp of air.

Peter doesn’t have many friends.

“Peter’s never been very interactive with toys,” says Kari.  “It’s difficult to find things that he enjoys because the therapists would bring blocks, or little cars, and it was always for a purpose-to build, or to use as therapy, so because of that I don’t think Peter has ever viewed toys as a very free expression.” But Kari says Peter loves watching videos, looking at books, and listening to classical or Native American music.

Peter has revised words to many songs, specifically “Old Mac Donald.” Peter sings, “Old Mac Donald had a tube,” and he makes the sound of the tubes. Kari thinks that the oxygen tubes have taken a large part in his isolation from other students.

“He can’t ever just get on a bike to ride away; he just doesn’t have that freedom,” Kari says. “His oxygen line is his lifeline, he’s tethered to it.”

She noticed last year when she visited Peter’s classroom, that because of the portable oxygen tank Peter had to drag, his hands were never free.  So she called the Norco Company to see if they could give the school a big tank with an extra-long tube for the classroom, which has worked out well.  Kari says she and John have lost a lot of friends because a lot of people are uncomfortable around sick and disabled children.

“We’re protective of Peter’s health, but we also want him to experience normalcy as much as possible,” Kari says.  Which means they aren’t afraid to tell people not to come over if they’re sick, even though their social life has become essentially non-existent.

When company does come over to the house, or when Peter is expecting either John or Kari to come home, he can always be found by their bay window, waiting, pressed against the glass where he is visible from the driveway.  While someone is there visiting, Peter repeats “Beep, horn,” which he waits to hear upon their arrival or departure.

Communicating with Peter is challenging as well.  The only time Peter has conversations is when they are scripted word for word ahead of time.  Both Peter’s receptive and expressive language skills are delayed, as are his motor skills.  But he’s quick to catch onto phrases such as “all aboard,” or “Party, party, party,” and “Pop, goes the weasel.”

Peter spends his mornings at C.S. Porter Middle School, and his afternoons at Hawthorne Elementary.

“He loves school, and getting on the bus, “Kari says. “He has a hard time staying on task for any length of time, and I don’t know how much of that is frustration because he really wants to please people; especially grown-ups.”

Peter eats lunch on Fridays with the Native American Club that meets with sixth to eighth grade students, before he heads to Community Hospital for adaptive swimming every other Friday, and then to Hawthorne.  Doris Kicking Woman, Cultural Specialist at the Native American club is excited when she sees Peter and Kari.

“You’re special, Peter,” Doris says.

“Why?” Peter asks to everything.

“Because God picked you,” she says, reaching out to touch Peter’s hand.

Kari says Peter is 13 going on 2, because of his questioning, but believes Peter is sometimes grasping much more then everyone realizes.  He just has trouble responding to what he hears.

“I wish I would just crawl inside of his brain to see how it works,” Kari says.

“But because of the damage to his frontal lobes, many of the things we hoped would come, will never come,” Kari says.

As Peter gets on his cart to be pushed down the hall, one of the teenagers in the Native American Club looks at Kari’s white skin and blond hair against Peter’s dark skin and hair and whispers to her friend, “Is that his real mother? He’s lucky.”  And another girl responded, “No, she’s lucky.” Kari says she’s not sure if Peter will ever have the cognitive ability to look at her and John and know they look different. But Kari says often when they are taking walks Peter will see a Native American walking and he’ll point and say, “Indian, Indian.”

The differences between Peter and a normal child the same age are obvious.  Peter has never known anything except how life is now.  He doesn’t know how it would be to be able to live without feeding, suctions, or oxygen.

He cries when he gets scolded.  Tears come down his cheeks the same way he laughs.  When he smiles. His eyes get big and crinkle at their corners, and when he laughs no sound escapes, his teeth are just suddenly revealed. Kari says Peter went for so long without ever revealing any signs of distress.

He has no modesty, like any other teenager has when it comes to his body.  Peter ironically watches doctor shows and still chews on a certain teddy bear, pacifiers and his blanket.  He’s always holding three plastic plungers in his hand, and is never without one of the three, which have deep bite marks, and are worn down at the ends.

“He loves them like a baby loves its bottle,” Kari says.

The times that Peter’s life is threatened have been the most difficult and heart wrenching for the Frakies, but they say they would do it all over again just the same way.

“I have seen Peter pull through so many times when he shouldn’t have,” Kari says. “You can’t just give up on him without trying.”

The Frakies are aware now that that what they were told about Peter growing out of his problems was untrue.  They have come to face what may lie ahead in the future.  Peter is ineligible for a heart or lung transplant because of the pre-existing papilla virus in his system.

“When kids reach puberty, the papilla growth is much less aggressive, but in their late teens, and early twenties it exacerbates again, and the papillomas can turn cancerous,” Kari says.  “We belong to a support group on the Web, and they have 2-3 death notices per year between the ages of 17-22,” Kari says, trying to choke back the tears.

Peter walks by with the movie “Annie,” in his hand and Kari asks him to sing. He sings, “I love ya tomorrow, you’re only a day away.” Kari turns her face slightly away from Peter to gain a more confident tone and excitedly says, “That’s right Peter, it is only a day away.”