A Father’s Day story: Son’s illness alters the way Kloes family views life

Bounding across the family’s living room, gliding onto the fireplace hearth, cracking jokes and flashing wit, Jackson Kloes is the picture of vitality.

Outside, Jackson swings at Wiffle balls thrown by his father, Craig, head coach of the successful Sheboygan South baseball team. In the kitchen, father and son bond, preparing their favorite blueberry muffins and sausage for the family.

“He wants to be a chef when he grows up,” said his mother, Jenny.

During the week leading up to Father’s Day, there are hugs aplenty in the Kloes home. Craig rubs his son’s back and reaches his strong left arm around the little man’s shoulders. On Jackson’s T-shirt is a blue star — a symbol of the Make-A-Wish Foundation.

“This is a very special day for me because Jackson treats me like a king; he is an extremely thoughtful boy,” Craig said. “As parents, we are trying to create as many memories as possible.”

For one week in May, in the middle of the Redwings’ charmed baseball season, Craig Kloes put assistant coach Will Madson in charge of the South team and with his family reported to the National Institutes of Health in Bethesda, Md.

His son, much more than his players and fellow coaches, needed him.

“I think the meaning of Father’s Day is a day to really appreciate your dad for what he’s done for you,” Jackson said. “He does a lot of nice things for us, takes me fishing and plays baseball with me. He takes me to the doctor and drives me to the Mayo Clinic. You should treat people how you’d want to be treated.”

Sheboygan (Wis.) South baseball coach Craig Kloes and son Jackson, 8, at their home in Sheboygan.
Sheboygan (Wis.) South baseball coach Craig Kloes and son Jackson, 8, at their home.

Jackson is one of only three 8-year-olds in a 300-patient national study centered on a life-threatening condition known as neurofibromatosis type 2, or NF2, a genetic disorder in which tumors form unabated in the body, particularly on the nerves of the brain and spine.

In Bethesda, Jackson had three magnetic resonance imaging tests, of two to three hours each, and underwent vision, hearing and balance testing.

No known cure for NF2 exists, but Craig Kloes is resolute in his belief that in the coming years medical advances will give his son increased hope.

“What’s great about the National Institutes of Health,” Craig said, “is that if there is any cutting-edge treatment, we’re in the loop.”

His optimism, however, is tempered by the harsh facts the family has been forced to digest ever since December 2001.

When Jackson was only 4 months old, Craig and Jenny grew concerned their youngest son was having vision problems and brought him to Dr. Jean Schott, an ophthalmologist in Sheboygan. She detected a mass on both retinas.

“(A hematoma) was discovered as an infant, which was a blessing,” Craig said of the finding later that day at the Eye Institute in Milwaukee. “If not for early detection, we’d have no clue what was going on. Now we can be proactive. But all that we can do is monitor the tumors and have them removed if needed.”

In June 2002, through genetic testing, the Kloeses were informed Jackson had NF2, which affects one in 25,000 to 30,000 births, and that their son’s gene mutation was spontaneous, rather than hereditary. The existence of NF2 in children, they learned, is considered more dire than in adults because tumors grow more aggressively in youngsters.

During his first three years of life, Jackson was in vigorous therapy.

“When he was 3, the therapist gave up on the idea that he’d ever walk or crawl,” his mother said. “Then he just took off.”

In the five years since, Jackson has been determined to pack years into months. As some NF2 patients don’t reach adulthood, time can be invaluable and fleeting.

Early in 2009, doctors discovered that a tumor touching Jackson’s optic nerve, in his brain, had grown from zero to 3 centimeters in less than a year.

The family’s “lot in life,” as Craig calls it, was magnified prior to the surgery when Jackson leaned in toward his father and asked, “Dad, is this something that could kill me?”

Craig, 43, a physical education and health teacher at Farnsworth Middle School, steadied his son with reassuring words. But he knew the stakes were high.

“I was worried at the surgery, the severity,” Craig said. “When they go over the risks and expectations, it kind of hits home. It got to the point where I thought, ‘This is kind of the big leagues.’ It’s that fear of the unknown. That’s the thing with NF2: tumors are so unpredictable.”

The tumor was not judged malignant, but atypical, and was removed by Dr. Michael Link at the Mayo Clinic in March 2009.

“But if you have one near your brain stem, it doesn’t matter if it’s benign. You can’t get to it,” Craig said.

Jackson and family will return to the Mayo Clinic in August and to the NIH in November; the latter a biannual visit for which all expenses are covered and the family meets with Dr. Ashok Asthagiri.

“Jack’s tough. That’s the thing. We never know if he’s sick,” his mother said. “If he has killer headaches, he’ll never tell anyone. He’ll throw up at school and not tell anyone because he doesn’t want to miss any more school.”

Despite missing 33 days in 2009-10, Jackson’s reading scores fall in the 99th percentile of students, and the soon-to-be fourth grader at Jackson Elementary School has been enrolled in the school district’s Program for Academic and Creative Extension. PACE is for the gifted and talented.

“What they told us at the Mayo Clinic is that there’s a dark side (with NF2),” Craig said. “But that he’s going to amaze you with what he can do.”

Among his interests, Jackson bowls, sleds, fishes, rides his bike, explores Kohler-Andrae State Park and goes to the movies. But for all his energy, Jackson faces many obstacles.

“We have a lot of support, family and friends,” Craig said. “You do what you have to do to make it through the day. You stay positive, but you have to be realistic.”

The Kloes family, from left, Jacob, mother Jenny, Jackson, father Craig and Emma. Jackson suffers from neurofibromatosis type 2.
The Kloes family, from left, Jacob, mother Jenny, Jackson, father Craig and Emma. Jackson was diagnosed with neurofibromatosis type 2.

Jackson is legally blind, only able to see out of the periphery of his eyes. He reads with the help of a magnifying machine and walks with a cane in public. He has a mobility teacher, Diane Gafney, who helps him with his orientation skills. He has tumors over both retinas and on three facial muscles and is having problems with dizziness, nausea and balance, belying his sure-footed movement through the family’s living room last week. In his ears, he has bilateral tumors, called acoustic neuromas, and will lose his hearing.

“It’s hard because you progressively see more things taken away from him,” said Jenny, 40, a first-grade teacher at James Madison Elementary School. “It kills him now because (sister) Emma goes out and plays, and the doctors have him on restriction. He’s so cognitively able, it’s heartbreaking. To see him so unhappy … Yesterday, he did a lot of crying. He just wants to be normal, like everybody else.”

The Kloeses cannot say enough of the earthly angels they have encountered during this journey and how Jackson’s condition has brought the family together.

They call his big brother Jacob, 17, his “caretaker,” while Emma, 11, sang “Star in the Sky,” written and composed by Jackson, at the school talent show on June 9. Jackson, in turn, will write his parents love letters when he can tell their stress levels have peaked. Jacob has Asperger Syndrome and Emma an organic impulse disorder.

“It’s very difficult having three special-needs kids,” Jenny said.

The Kloeses said the outpouring of support from fellow teachers has been impressive, along with precocious gestures by Jackson’s good friend, Zach Polster, a child without disabilities who has brought a cane to field trips and is learning Braille with this classmate.

“So Jackson doesn’t feel left out,” Jenny said.

The Make-A-Wish Foundation and Give Kids The World have been generous to Jackson. Today, the Kloes family hopes to embark on a tour of 21 amusement and waterparks in 21 days, made possible by GKTW. And soon Jackson will be pictured on Make-A-Wish literature.

“I think he’s made a difference in people’s lives,” his mother said. “He likes the good in people and he likes what’s right and he’s appreciative.”

Jackson has made an indelible imprint on the lives of his siblings and parents.

“If you’re contemplating doing something now or later, you do it now,” his father said. “I think I am more straightforward now, more sensitive, more aware of what’s going on around you. The cliche of stopping and smelling the roses. …”

Craig and Jenny hold dear to them every detail of Jackson’s life, every memory, his every reaction — snapshots in time that other parents might not deem worthy to preserve.

“Remember when that giant, bouncing ball got stuck in the tree?” Jackson said last week to anyone within earshot. “That was great.”

And what about that smile that graced Jackson’s face in early June when his father was named the Fox River Classic Conference coach of the year, after the Redwings had broken 28 of 47 individual and team records, tied for the East Division title and finished with a 19-7 record?

That smile stretched from here to Bethesda, Md.

“I think the character of that team, there was always concern for the family first,” Craig said. “There are bigger things in life than baseball.”

Star Josh Gruenke bought Jackson a framed photo of Milwaukee Brewers slugger Prince Fielder last year, while standout Sam Raff spoke of the Kloes family and of South volunteer assistant coach Mark Reinemann, who is battling cancer, in a speech June 10 at the team banquet.

Afterward, the smallest member of the team waited in the wings to congratulate Coach. It was Jackson’s turn at-bat, and he was just one of the guys.

“That’s the saddest thing about NF2,” his mother said. “He’s wanted so badly to play on his daddy’s baseball team.”

(Published in The Sheboygan Press, June 20, 2010)


Holding onto memories of my son’s short, touching life

When Quinn was old enough, he was as active as any boy his age. We did many of the usual father-son activities. I loved being in his company.

In Quinn’s earliest months, I read him a favorite, “Oh, Baby, The Places You’ll Go!,” adapted from Dr. Seuss. It begins:

Baby, oh, baby
The places you’ll go!
The worlds you will visit!
The friends you will know!

He wiggled when I turned up my voice to emphasize a passage. Though my wife, Julia, and Quinn were inseparable, I, too, was forging a strong bond with our first child.

The thing about our Quinn was that he was a a ham. And expressive. In his earliest days, without fail, he would flash a goofy look on his face the moment his image was being captured.

He was along on walks with Mama and Papa. We didn’t expect great feats of endurance because he first was gaining his lungs. But he stretched and moved his legs as surely as other sprouts did. A couple times, he kicked my palm with considerable force, a typical, active boy.

And there was that night I surprised Julia with tickets to the musical “Chicago.” It was March, and Quinn had been with us for some time. When a female vocalist let loose her booming voice, Quinn reacted with turns and vitality. That lad made quite a scene. Quinn moved his arms and legs and danced with pleasure. A regular Gene Kelly, my son. We silently giggled and looked in his direction, and others in our section glanced over and gave us knowing smiles.

I figured that with all that energy, he was destined for athletic greatness. Or whatever he wanted to be: a computer scientist, a policeman, a teacher, a journalist, like his papa. My given name is his middle name.

He was my bud, that son of mine. Together, we explored this world of ours.

I hang onto these memories because they are all I have. Never was I able to hug or kiss my son and have him return my affection. Quinn died in utero, confirmed by an ultrasound. He was born still on April 12, 2001, one month before his due date. No cause was determined.

Brian Gaynor holds his son Quinn at Meriter Hospital in Madison, Wis., on April 12, 2001.
Brian Gaynor holds his son Quinn at Meriter Hospital in Madison, Wis., on April 12, 2001.

But, yes, I experienced Quinn and tried to gain an understanding of who he was through his everyday movements in my wife’s belly, through his reactions to our readings, his dancing to the music we listened to together.

My wife reminds me I was a by-the-books father, attending to Quinn’s nutritional and medical needs. I cared deeply about his well-being and loved him as fervently and unconditionally as any father does a son.

He was bathed and clothed and footprints were made, the same ritual as for a newborn. The nurses at Meriter Hospital in Madison were sensitive to our needs. Soon, we learned that hospitals and support groups used the butterfly as a symbol for infant or child loss. It could be a comfort to parents.

I remember being hesitant, even afraid, to kiss Quinn. I was stiff with fear. I expected him to be cold. Weren’t they all cold? Somehow, he seemed alien. The dead. But he was our Quinn, once vibrant during a healthy and blissful pregnancy.

I kissed his forehead. He was warm. He was the cutest baby in the world. Quinn. Quinn! In disbelief, I longed to welcome him to the world, hug him, tell him about the sports we would play together, the horsey rides I would give him on my back. I wanted him to grip my finger with his tiny hand.

Then … reality. Suddenly, upon the doctor’s hushed words, I was pinioned under the weight of crushing and debilitating sorrow. The amniotic fluid had kept him warm, the doctor whispered.

Outside, rain poured from the grieving skies. I was wholly unprepared for the enormity of my son’s death and the intense sadness it brought.

I thought of Quinn’s crib, enclosed by rows of white, vertical bars, and how it stood at home as colorless and stark as the rows of tombstones at Arlington. And how it stood empty. I broke down.

Once the spring rains finally relented, Julia and I devoted an afternoon to searching for beauty. We found it in our back yard in the buds of early spring and in the birds returning from their winter escape. We took several photos that day because we desperately sought to capture evidence of beauty and life. We had learned how fragile and fleeting happiness could be.

Then, as we turned to walk back to our house, a butterfly brushed up against my cheek, danced around us and soared up into the sky.

(Published in The Sheboygan Press, Oct. 14, 2009)

Long ago, the Ognacevich family made music, shared love and dreams

Sheboygan Falls, Wis. — During the Great Depression and in the following years, Yugoslavian immigrant Peter Ognacevich played the tamburitza in the family’s tiny kitchen at 701 S. 13th St., on the edge of Sheboygan’s formerly robust factory district.

Peter Ognacevich, the patriarch of the Serbo-Croatian family from Sheboygan, played the tamburitza and the harmonica for his 12 children in their tiny home.
Peter Ognacevich, patriarch of his Serbo-Croatian family, played the tamburitza and the harmonica for his 12 children in their tiny home. He was born in Bedenicka, Serbia, in 1883, arrived in America in 1905 and died in Sheboygan, Wis., in 1950.

Those of the 12 Ognacevich children moved by the old man’s talent would dance at his feet. The weary laborer would alternately take a drag from his cigarette or a swig from his everpresent jug of beer bought from Baranowsky’s Tavern.

The children were clothed and fed on a factory worker’s then-meager wages. They were raised in a three-bedroom home bordered by a block-long pedestrian bridge to the north, Sheridan Park to the west and the old Chicago & North Western Railway yards and furniture factories to the east. There, in that poor and uniquely urban setting, they grew close through humor, music and a natural fondness for one another.

On July 31, the descendants of Peter and his Croatian wife, Mary, gathered at River Park for the family’s 40th reunion.

Appropriately, a tamburitza band played.

A tamburitza band from Milwaukee entertains those gathered for the 40th reunion of the Ognacevich family.
The band Mladi Fakini, which means “Young Rascals,” entertained several generations of the Ognacevich family during their 40th reunion in 2005 in Sheboygan Falls, Wis. The tamburitza group hails from Milwaukee and has played for audiences around the world.

This year’s event marked 100 years since Peter, born in 1883 in Bedenicka, Serbia, arrived in the United States looking for a more fulfilling life.

He married a young widow, Mary Siprak Bitorjatz, in 1914, and worked at Northern Furniture (later renamed R-Way) and then at Badger State Tannery (later Armour Leather and Armira). Peter died in 1950 and Mary in 1973.

Katherine Reano, one of six Ognacevich daughters (three survive) and a primary reunion organizer, said 106 of 168 Ognacevich relatives were expected to attend.

Twenty family members have died, including six of 12 Ognacevich children.

“Sister Club planned the picnics for the first 25 years,” said Reano, referring to a group of relatives who exchanged clothing and family news and planned the family’s round-robin Christmas parties.

“At the beginning, each member let their family know all of the details (of the reunion),” she said. “As families grew, married and moved away, we started doing mailings also to stay in touch.”

Mary Ognacevich hangs her laundry in the back yard next to a long pedestrian bridge that went over the rail yard to the furniture and leather factories in Sheboygan. Filth kicked up in the rail yard sometimes collected on their wet clothes.
Mary Ognacevich hangs her laundry in the back yard next to a long pedestrian bridge that went over the rail yard to the furniture and leather factories in Sheboygan. Filth kicked up in the rail yard often collected on the family’s wet clothes.

After several Sister Club members died in recent decades, nieces and nephews assumed some reunion duties, Reano said.

Following the catered lunch, attendees heard the Milwaukee tamburitza group Mladi Fakini (“Young Rascals,” in Serbo-Croatian). The band’s precocious teens have performed worldwide and on this heat-baked afternoon had little trouble stirring relatives to dance, perhaps mirroring the activity seen in the Ognacevich kitchen years ago.

Few reunions have passed without mention of the challenging Ognacevich name and the sons’ nicknames. The name was spelled Ognjacevic in the old country, yet various family members have spelled it Ognacevich, Ognacevic, Ognavic and Ogee. More spellings are found in old Sheboygan city directories.

As for the brothers, Stephen is called Timmy, Michael answers to Billy, Elias was called Eats, the first brother George went by Chicky and the second brother George was called Judo.

A family tree was set up outside the park shelter in Sheboygan Falls, Wis., where the Ognacevich family reunion was held in 2005.
A family tree was set up outside the park shelter in Sheboygan Falls, Wis., where the Ognacevich family reunion was held in 2005.

A professional photograph of the family concluded the event in the late afternoon as “The Original Cast,” Peter and Mary’s children, held a long OGNACEVICH FAMILY REUNION banner printed in their mother’s favorite color, blue.

Food, dance, humor, a century of family memories and Peter Ognacevich’s favorites played on the long-necked tambura.

“How about that!” Reano said. “Grandma and Grandpa would be very proud of us.”

(Published in The Sheboygan Press, Aug. 11, 2005, as a staff member of The Des Moines Register)