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 Isaac’s Room By R. J. Lenarcic
Webster’s dictionary defines hero as any person either admired for courage, nobility or exploits (especially in war) or for qualities or achievements regarded as an ideal or model. The word is often misused in describing individuals who frankly do not meet the defined criteria. A hero’s actions or achievements must be so exceptional as to set him or her apart from the rest of us. Sgt. Shawn P. Martin was a hero. The Delmar Marine was sent to Iraq in the spring of 2007 as part of an EOD (Explosives Ordnance Disposal) unit. On June 20 that year, shortly into his tour, his bomb squad was sent to clear out an area where one of our vehicles had been blown up. After over eight hours of nerve-wracking work, Sgt. Martin and Staff Sgt. Steve Wilson decided to check out one more area. The explosion killed them both.
We learn more about this American hero from his widow, Mimi, spokesperson for the local Fallen Stars Memorial Project. The strapping (6’2-225 lbs.), dark-haired graduate of Bethlehem High played football, lived life to the fullest, rarely stopped smiling, was loyal to a fault to friends and family and loved amusement parks. As so often is the case, big, tough guys often have a gentler side. Shawn loved to cook for Mimi and he absolutely loved children. Mimi recalls walking into a room and finding her niece, Jordan, sitting on Shawn’s lap while he read her a story. When recently asking her nephew, Jared, what he remembered about Uncle Shaw, he answered, “Pulling me up a hill on my wagon and helping me ride down.” Whenever he returned home, he couldn’t wait to wrap those big arms around Jared, Jordan and Kiera, his sister’s daughter. Sgt. Shawn P. Martin was 30 when he died for his country.
Big Shawn would have loved little Isaac and the feeling would have been mutual. The two and half year old son of Amy (self-employed farmer) and Marc (driver for Brown’s Feed) Skottke from Elizabethtown Rd., Ilion, has congenital myopathy. The disease has trapped the toddler in a body incapable of movement, speech and save for a ventilator operating 24/7, breathing. A feeding tube sustains his life. Because of his condition, Isaac must live on the ground floor of his home and thus his life is spent in the living room. He is tended to by homecare nurses 21 hours a day. The other three hours (7-10 p.m.) are spent alone with Mom, Dad and 4-year old sister Samantha. The Skottke’s are one of the nicest, hard-working, loving families you’ll ever meet.
Isaac’s Room. Amy and Marc have a dream; a room of his own for their son and it’s a dream that can come true. There’s a small 20 ’x 12’ structure off of the kitchen which can be renovated so that Isaac would not only have his own space but could join the family during mealtime. The Skottke’s have exercised all options regarding financing the project. Thanks to volunteers, family and a social service agency, Isaac’s room can become a reality – but for one thing - financing the building materials. That’s where Irv Bunce and the Frankfort Kiwanis come in.
Bunce is the club’s president and has made Isaac’s happiness one of his life’s pursuits. Subsequently, he has converted us to his cause. Irv is also a proponent of the Fallen Stars Memorial Project and as such, last year, organized a benefit golf tournament in honor of Sgt. Shawn Martin. The event generated a few thousand dollars which, along with our other fundraisers, enabled us to support numerous area charities including the Gram Lorraine Children’s Christmas Program, Camp Kiwanis, the Frankfort-Ilion Food Pantry, the Frankfort Library, etc.
Because you can’t say no to the ultimate nice guy, nor in this case would you want to, we accepted Irv’s recommendation that the proceeds from the 2009 Sgt. Martin Memorial Tournament go for Isaac’s room. Hopefully, we’ll earn enough to make building expenses. If not, we’ll find the rest. Marc Skottke has a special wish regarding the room; that it have a skylight so Isaac can see the stars at night. It will. Isaac will not only be able to see diamonds in the sky but Mr. Sun as well. And somewhere in the great beyond, the smiling face of the big hero Marine will be looking down watching over him.
Making A Dream Come True
Interested in making a donation:
Send a check to the Frankfort Kiwanis Club, c/o Irv Bunce,
202 Kernan Ave., Frankfort, N.Y. 13340
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Guest view: Little boy's wonderful world being created by a community of love
RAY LENARCIC
Observer-Dispatch
Bob Thiele and George David Weiss's classic, "What a Wonderful World," was first recorded in 1968 by the legendary Louis "Satchmo" Armstrong. Its lyrics not only paint a portrait of natural beauty, but also exude hope and optimism - not only for us, but as its final stanza indicates, for babies, too.
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"I hear babies crying, I watch them grow,
They'll learn much more than I'll ever know
And I think to myself . . . what a wonderful world."
Those words have a special meaning for me in two respects. The first relates to my five grandchildren. Each has been a godsend, providing my wife and me countless moments of undiluted joy. We have watched each evolve from babies crying to toddlers taking their first steps, saying their first words, stuffing birthday cake into their faces, suffering through the terrible twos to attending their first graduations (pre-school), playing T-ball and enjoying the heck out of Christmas.
The second relates to Isaac Scottke. A beautiful, blond-haired, brown-eyed 2½-year-old, Isaac has congenital myopathy. The disease has stolen from him opportunities to cry, toddle, speak and eat. Thanks to a respirator, he can breathe.
That wonderful world described in the song, with its "Skies of blue, and clouds of white" and "Trees of green, and red roses, too," will be experienced in totally different ways by Isaac.
Everything will be vicarious. He can see. He can hear. He can understand. And because he can, he has his own wonderful world to behold.
When I wrote about Isaac in the July 26 edition of the O-D, I was hoping to interest readers in supporting the Frankfort Kiwanis Club's "Isaac's Room" project by playing in the Sgt. Shawn Martin Memorial Golf Tournament (Sgt. Martin was killed in action in Iraq on June 20, 2007) or by making a donation. Our president, Irv Bunce, learned of the Scottke family's situation and persuaded the club to use the tournament proceeds to help build an addition to their home.
At present, Isaac lives in the living room because it alone can conveniently accommodate the machines, tubes, wires, and the like necessary to keep him alive. His new room would be located next to the kitchen and have a skylight.
His daddy, Mark, wants his son to be able to see the stars.
In the weeks following, things happened which have added new dimensions to Thiele and Weiss's lyrics - you know - the ones reflecting hope and optimism. A total of 126 golfers played in the rain on July 31, raising more than $4,000. And they got to see the little man. His mom, Amy, and his wonderful day care nurses brought Isaac to Pine Hills.
I swear those little eyes checked out every person in Carl Grygiels's clubhouse. As Amy said upon leaving, the experience left her boy all tuckered out. Donations flowed in. They came primarily from the Utica area and ranged in amount from $5 to $2,000. While the gifts came from people representing every walk of life, the vast majority of donors were everyday moms, dads, grandmas and grandpas. Good, caring people who in addition to money enclosed in the envelopes personal notes wishing us well and offering prayers for Isaac's well being.
As I write, a total of $11,300 has been raised - twice as much as our original goal. What a wonderful world!
There has been a great deal of furor over the stimulus packages intended to somehow jumpstart our economy and preclude a deepening of this serious recession. 2008's TARP was especially controversial as the $750 billion dollars seemed lacking in transparency. Where'd all our tax dollars go? To the Wall Street bankers who caused the problem in the first place. But what have they done with it? Depends on whom you talk to.
The same cannot be said about the Frankfort Kiwanis Club's stimulus package. It's as transparent as transparent can be. Your donations will go to build Isaac's room and maybe a deck so the little angel can enjoy the " colors of the rainbow so pretty in the sky." Local businesses will be stimulated economically as we purchase the materials for the room. For Isaac, the most beneficial part of the package will be the new world that emerges as he views each ". . . bright blessed day (and) each dark sacred night." Imagine if TARP could have provided a stimulus like this the country over. Oh, what a wonderful world.
When the room is completed later this fall by a caring group of volunteer carpenters, those who contributed to the project will be invited to come and take a look at the finished product and greet Isaac. He'll see ". . . the faces of people going by" and ". . . friends shaking hands, say[ing] how do you do?"
With their generosity and smiles they'll be telling the little guy "I love you." And in return, to each one passing, with those beautiful brown eyes, he'll be saying "I love you, too." Sometimes ours can truly be a wonderful world.
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Guest view: They built a room of love around little Isaac
RAY LENARCIC
Observer-Dispatch
Labor of love. An interesting concept conjuring up the notion of working hard at something you really enjoy doing.
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When I hear the term I think of barn raisings - 19th-century communities rallying to help out a fellow farmer by building a new barn to replace one lost be a natural disaster. More personally, as a boy I spent hours constructing a model plane or, more recently, my wife, Kay, crocheting an afghan.
The term can also be used to describe the Isaac's Room project.
I'd like to do so by reversing the words. Love. If, in the future, I'm asked to exemplify the emotion, I'll offer the relationship between 3-year-old Isaac Scottke and his family. The blond-haired angel has suffered from congenital myopathy since birth. He is trapped in a body incapable of movement; he can't talk or walk and has survived only because of a feeding tube and, until recently, a respirator.
While his quality of life is lacking in so many ways we would take for granted, he does have one thing in abundance - love. Proof? All one has to do is spend a few hours in the presence of his parents, Marc and Amy, his 5-year-old sister, Samantha, and his incredible full-time nurses. He is never without their soothing words, caresses and care and, as his eyes will tell you, he is well aware of the attention. If only all of our children were so lucky.
As for labor, well, meet Irv and Art Bunce. Last year as president of our Frankfort Kiwanis Club, Irv heard about Isaac and a dream of his dad's. Marc wanted his son to have his own room - one with a skylight so he'd be able to see the stars. Irv investigated further and learned that despite the fact they both worked, expenses attendant to their son's medical condition left them without the means to tear down the shed abutting the house and replace it with the "dream room."
At that point, Irv decided that maybe the Kiwanians could do something to help out. Once he described the situation it took us about a second to unanimously give him the go ahead, and the Isaac's Room project was born. Under his inspired leadership and with the generosity of local donors, we raised more than $12,000 to purchase the building materials. That was the easy part. The difficulty would be in the construction.
Enter Art, Irv's older brother. A semi-retired master carpenter, he turned the project into his personal crusade, spending scores of hours transforming space into a meticulously constructed room replete with skylights, picture window, bathroom with tub (one of Isaac's great joys are his baths), and light fixtures. Working side by side with Art was baby brother. They've been up on the hill so often that you might as well add them to the family.
See what happens when you feel the love! I can't finish this segment without mentioning the work provided by Gordie Turner, Marc and his brother Chris, John Cooper, Isaac's Grandpa Dan Bodwell and Frankfort High art student Tina Piacente, who decorated Isaac's room with his favorite characters.
On Saturday, June 5, from 10:30 a.m. to noon, the Scottkes will be hosting a viewing of Isaac's room for the various people who have made the dream come true. We're asking the O-D readers who stepped up and donated to the cause - many did following a previous column - to find the time to attend. We want them to see the room which will change Isaac's life forever, and we want them to meet him. I guarantee that the experience will be life-altering. They, too, will feel the love.
I also believe that because of the experience they'll leave ready to value more greatly the little things in their relationships with their children and grandchildren. Those of us who have been fortunate enough to have been a part of this labor of love have also learned something else - always be grateful for what you have and never sell short the power of love. God bless and keep you, Isaac, and enjoy the stars.
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