Memorial

"Designing and building is my passion. I try to use all that I have and make the best of it. I anticipate the cure in the future. While it's getting harder … for me everyday physically, I am doing all I can … I hope I'm an inspiration to other people. This ship will be my legacy." – Glenn Mikulak

Glenn's legacy to all of us is the example of achievement under duress; of hope where hopelessness might seem the answer; of life lived to the fullest under the constant shadow of death. Glenn was dealt a lousy hand physically – but spiritually he carried a full deck.

But that ship is simply a physical manifestation of a spirit called "Christ-like" by one officiating minister, Father Fasano, who displayed a photo of Catholic Saint Padre Pio, who bore the Stigmata of Christ's wounds for many years, in detailing his own recently developed relationship with Glenn.

An Improbable Tale of the High Seas
A captain among men, Glenn Mikulak sails toward a brighter shore

By Roger Bianchini
Warren County Report

If the above headline rings a bell it may be because it was used this spring just prior to the gradation of the WCHS Class of 2010. We featured soon-to-be-graduate Glenn Mikulak's display of his creation of a 10,000-piece model ship of his own design at his school. On Oct. 24, memorial services for 18-year-old Glenn Michael Mikulak were held at Maddox Funeral Home in Front Royal before a crowd of several hundred. In tribute to Glenn, who died of respiratory failure resulting from his battle with Duchenne Muscular Dystrophy Syndrome on Oct. 19, we reprint a portion of that story with brief comments added below:

For most people, me included, memories of a nice trip, whether it be on a ship or by another mode of transportation, are generally recorded in our sometimes flawed memory banks or on photographs soon to be curled and yellowing in some forgotten scrap book.
But for Warren County High senior Glenn Mikulak, the memories of a 2006 trip with his late grandmother, Linda Hogoboom, on a Caribbean cruise ship were translated into an astonishing reconstruction of a cruise ship. On April 28th Glenn brought his ship, appropriately christened "K'nector of the Seas of the Royal K'nibbean Line" since it is made of approximately 10,000 K'NEX pieces, for display in the Warren County High lobby. The reactions of classmates, teachers and even Principal Ernestine Jordan mirrored my own reaction.

"That's awesome!"

"Glenn, that's incredible – did you draw a picture of it first?" "No, I just started building it," Glenn replied.

"I couldn't do that if I had my whole life to finish it," one student exclaimed.

The fact Glenn oversaw the event from his wheelchair underscores perhaps the added awe with which his classmates viewed his achievement. Glenn suffers from a form of Muscular Dystrophy known as Duchenne, an irreversible deterioration of the muscular system. As a consequence of his condition, Glenn has a reduced life expectancy and must face that fact each day of his life.
Glenn's outlook is an inspiration to all. We asked him how he does it.

"Designing and building is my passion," he told us. "I try to use all that I have and make the best of it. I anticipate a cure in the future and while it's getting harder and harder for me everyday physically, I am doing all I can. It's discouraging at times but I am still creating and building. I hope I'm an inspiration to other people. This ship will be my legacy."

New duty station

But Glenn was wrong, at least in part. It isn't his ship that is his legacy. Rather, as repeatedly commented on by emotional friends, family, and classmates at his Oct. 24 Memorial Service, it is Glenn's spirit that is his most enduring legacy. Yes, that spirit allowed him to create that model ship that was a glimpse into Glenn's professional potential in a design profession had he not been given a short pass for leave on this particular shore. But that ship is simply a physical manifestation of a spirit called "Christ-like" by one officiating minister, Father Fasano from St. John's Catholic Church. In fact, Father Fasano displayed a photo of Catholic Saint Padre Pio, who bore the Stigmata of Christ's wounds for many years, in detailing his own recently developed relationship with Glenn.

Also officiating at the Memorial Service was Hospice Chaplain, Reverend Dr. Kitty Hahn.

Among the emotional testimonies given were those of Glenn's "Team" of caregivers, all youngsters not far from Glenn's age themselves; and all of whom described an emotional and inspirational experience with Glenn. Their comments echoed those of all friends and family who spoke.

Music was an important part of both the Memorial Service and a later gathering hosted by The Lucky Star Lounge and catered by McAllister's Deli. One musician who played at both the service and post-service gathering was Hank Gorecki. Gorecki told those present that Glenn was his hero. – "You're heroes are in your backyard – you don't always have to look far for a hero," Gorecki reminded us. In keeping with the musicality of Glenn's send off, his grandfather Doug Gilbert played at the service and later jammed with local musicians at The Lucky Star, including a nice Hendrix/Dylan – "All Along the Watchtower" I believe it was.
Glenn's legacy to all of us is the example of achievement under duress; of hope where hopelessness might seem the answer; of life lived to the fullest under the constant shadow of death.

Glenn was dealt a lousy hand physically – but spiritually he carried a full deck.

His hand played out on his mother's birthday, Oct. 19, 2010. Captain, permission to leave the bridge of the "Royal K'nibbean Line's K'nector of the Seas" is granted. Please take your next duty station on the bridge of another ship of dreams, a ship without unwanted anchors, a ship sailing into a port of call on a distant and shining shore.

Facts about Glenn's ship:
Length: 8 feet 6 inches
Width: 1 foot
Height: 2-feet-5-inches
Build Time: 6 weeks in 2006
Upgrading time 2010: 3 weeks
Estimated K'NEX pieces used – 10,000

In lieu of flowers, the family asked people to make donations in Glenn's name for the development of the county's Freewheeling Way Playground being developed near Fantasyland as an equal opportunity gathering place for children both with and without disabilities. Information on making such donations can be gathered by calling the Warren County Parks & Recreation Department at 540-635-7750 begin_of_the_skype_highlighting 540-635-7750 end_of_the_skype_highlighting.


Ship of Dreams
By ANGELLE BARBAZON
The Warren Sentinel


FRONT ROYAL, Oct. 24 — Brilliant. Happy. Amazing. Positive. – Friends and family seem to have an endless supply of words to describe 18-year-old Glenn Mikulak, a 2010 Warren County High School graduate who died Oct. 19 of respiratory failure associated with Duchenne muscular dystrophy.

About 250 people attended a memorial service Sunday to pay tribute to the teen known for his big personality and love of all things having to do with design. On display at Maddox Funeral Home was Glenn's pride and joy – an 8-foot-long model cruise ship that he built with an estimated 10,000 K'Nex pieces.

Glenn's fascination with ships blossomed in early 2000 when the Make-A-Wish Foundation sponsored a trip to the Bahamas and Cozumel, Mexico, where he enjoyed swimming with dolphins. Roughly six years later, he began designing a model ship that took him six weeks to complete. Years later, he modified and updated the model.

Glenn ended up going on three cruises during his lifetime, and his final model was a combination of the three ships he traveled on."Each time he would go on a cruise, he would get another idea, and then he would change something about it,Ó Glenn's mother Glenda Mikulak said.

Glenn's final cruise in May was particularly special because he not only met the ship's captain and toured the boat's bridge but was also introduced to Oasis of the Seas' chief architects.

"Glenn is now sailing with the stars in heaven," his mother said.

Glenn began experiencing heart complications related to his muscle-wasting disorder when he turned 18 and had to spend time at Children's Hospital. "The doctors took us in the back room to talk about what we wanted to do and how we wanted to proceed with Glenn's life, and [his father Robert Mikulak] said, 'Do everything you can,'" Glenda said.

Doctors installed a pacemaker and defibrillator and put Glenn on high-powered heart medications. "As we were leaving the hospital, his doctor said with a big smile, 'It looks like you guys get some more time together,'" Glenda said. "And that's how we've lived the past 10 months, as if it was all extra time."

St. Padre Pio became an important figure in Glenn's life when he worried about his health, Glenda said. "He became part of our daily prayers," she said. "Pray, hope and don't worry."

Glenn passed away on his mother's birthday, which Glenda said was a "great gift" from him to have made it that far.

Music played a special role at Glenn's memorial service with friends performing America's "A Horse with No Name," which Glenda called the family song. "Glenn's gentle, compassionate spirit lives in everybody's memory and hearts, and we're hoping that when people hear that song, it will remind them of Glenn's contributions to life," she said.

The service ended with a procession to the gazebo on Main Street where five of Glenn's close friends – known as his "crew" – carried his model cruise ship.

Glenda said his sister, Robin Mikulak, plans to take the ship on a tour of Warren County Middle School and talk to students about the boat. Knowing of Glenn's passion for architecture and design, middle school principal Alan Fox had taken him on a tour of the newly renovated building on Luray Avenue, which Glenda said Glenn was highly impressed by.

Glenda thanked teachers and other members of the education community for having a positive impact on Glenn's life.
"They have been a huge support," she said. "They made it all happen for Glenn. They made sure there were no barriers at any of the schools."

The Mikulak family started the Linda F. Hogoboom Memorial Scholarship this year in honor of Glenn's grandmother. The scholarship benefits students who support peers with disabilities. Glenn's name will be added to the scholarship. "The scholarship is really about trying to change a culture," said Michael Hirsch, Warren County Public Schools director of special services. "The scholarship promotes acceptance, diversity and children with and without disabilities working together."

Hirsch has known the Mikulaks for about 11 years. "I think we can learn a lot from all students, and we can definitely learn a lot from Glenn and his positive attitude toward life," he said.

The Mikulak family asked that all memorial donations be made in Glenn's name to the building of Free Wheeling Way and Blue Ridge Hospice. Free Wheeling Way is a universally accessible playground that would provide a fun place for children with and without disabilities at Fantasyland Playground. "We spent a lot of time at Fantasyland when he was younger and still could walk, but when he got in his wheelchair, it was harder for him to go there,Ó Glenda said. "It was hard for him to watch the children and not be a part of it."

Family friend Robin Stanley began raising money for the playground about 10 years ago in honor of her son, Curtis, who had cerebral palsy and died in 2002. "First of all, Glenn was extremely brilliant," Stanley said. "Glenn was one of the smartest kids I've ever come across. He was a very kind, loving child. Our kids grew up together, and I've had the pleasure of Glenn spending the night over at our house, and he was just a joy to talk to and a very compassionate person."

The family further extends their thanks to the many healers that have worked with Glenn over the years. "They really made a difference in his life," Glenda said.