Currently viewing the tag: "Sue Clabaugh"

by Sue E. Clabaugh

My Grandmother used to have a quilt that she would wrap me in.

She told me it was hers now and made by folks back when.

Said it was all made out of remnants and each and every patch

meant something to someone that nobody else could match.

Some patches were cut from feed bags that they got from the mill,

And some were old velvet with little golden frills.

Each patch was sewn with thread of the sewer’s heart

That nothing in the whole wide world could ever tear them apart.

I always felt that I was loved as my fingers felt the cloth

What a memory for me to keep –

Something that can’t be bought.

Years later I walked into the old back room

Where the children always played.

And there were remnants of the past

From how they spent their days.

The old blue cart that pushed the things that they had bought

The old green doll carriage that one was proud she got.

And over in the corner – the big stuffed bear, with just one eye,

When he was so much younger,

he really was some guy.

The little yellow cradle handmade by Uncle Bill

Was just as sturdy as when he made it from remnants from the mill.

And in another corner laid a raggedy old quilt,

It had been used for such a long time

But loved by many still.

It was used for picnics, and dolly’s little bed

Where many times while playing – they would lay their little heads.

How would that pretty quilt from so many years ago,

Know just how much joy it would bring

To children while they grow.

I cried when my eyes saw it lying there and I remembered Granny’s words

That I now share –“it was all made out of remnants” were the words she said.

Oh, what I’d give to be wrapped up in that old quilt

And rocked by my Granny again,

To feel the love from those old remnants

That were some things that were just left over

And put together – something that can’t be bought.

Families can pass along many traits through the generations. Eye color, facial structure, even a propensity to bear twins. Unfortunately, they can also pass along diseases.

Sue Clabaugh’s family has been in the Thurmont area for hundreds of years. One line of her family tree goes back to John Jost of Wittgenstein, Germany. It is through his line that a genetic disorder called hATTR amyloidosis has been passed. It is also known as “Eigenbrode Disease,” named for descendants of Jost, who are also part of Clabaugh’s family tree. It is a mutation in the transthyretin gene that causes misfolded proteins that accumulate in tissues around the nerves, gastrointestinal tract, and heart. There is no known cure.

“Many people, including doctors, have never heard of it or ignore it,” Clabaugh said. “I know I have a lot of relatives in areas who don’t know testing is free.”

She was diagnosed with the disease only seven months ago at age seventy-three. “It started with a horrible burning in my feet. Then I would get sharp pains at night that would go up my legs.”

The symptoms vary from person to person, but once they appear, they generally continue growing worse. Although it tends to strike senior citizens, Clabaugh has met people as young as thirty with the disease.

Her brother, Bill Eyler, was diagnosed five years ago. “Now he’s sixty-eight and in leg braces because he has no feeling in his legs,” Clabaugh said.

While there are some treatments available, they aren’t always effective. Once Clabaugh realized what the disease was, she remembered seeing family members at family reunions as a child. She thought even then that a lot of them had trouble walking or were in wheelchairs.

“I had no idea that it was amyloidosis until I became a nurse,” she said. “Even then, I never thought I would be on that list.”

Her father died at age fifty-six. “He used to have to change gears with one hand and push with the other because he had no feeling in his fingers,” Clabaugh said. Because the disease isn’t common, it is often misdiagnosed as neuropathy or lime disease. However, Clabaugh urges anyone in Central Maryland with those symptoms to be tested for hATTR amyloidosis. Some of the family names that have members with amyloidosis include Smith, Boyle, Munshouer, Martin, Fitz, Scott, and Eyler. The testing is free, and you can find out more information at www.alnylam.com.

Since being diagnosed with the disease, Clabaugh has been trying to learn all she can about it and get the word out to raise awareness about it.

“If I reach one person with this information and they pass it on, and they get some help, it would mean so much to me,” expressed Clabaugh.

She also wants doctors to be aware of how the disease manifests, because many of them aren’t aware of it. Doctors should be asking patients with foot, leg, or hand problems if other people in their family have the same problem. If so, then consider the possibility that it might be hATTR amyloidosis.

When the Trinity United Church of Christ of Thurmont hit financial hard times about thirty-five years ago, Treasurer Russ Delauter thought the church might have to sell off kitchen equipment to pay the bills. Then he realized that while that might help the immediate problem, it wouldn’t address the ongoing shortfalls.

So, he started baking and cooking soups, pies, and cakes, and selling them. Sue Clabaugh joined him about a year later, and then Mary Jane “Tootie” Lenhart after another year.

“Things really took off when she started helping,” Delauter said. “She got things organized and started contacting people about buying.”

Word of mouth spread about the tasty dishes, such as slippery pot pie, Maryland crab soup, and custard pie, coming out of the church’s kitchen. People started placing orders and so did businesses who wanted to sell home-baked pies to their customers. Some came from as far away as Gaithersburg, according to Delauter.

“Things started out slow, but once we got rolling and word of mouth spread, lots of people started coming in,” Lenhart said.

This was probably a good thing since both Lenhart and Delauter were working full-time when this project started. They had to fit cooking in before and after their jobs. Now retired and in their eighties, both of them will still spend around six hours a day in the kitchen preparing food.

Last year, the kitchen sold about $150,000 in products. Once the cost of the ingredients was deducted, they not only had money to help Trinity, but they assisted five other churches in their fundraising efforts.

For their efforts in establishing the kitchen and getting it running so that it helps support not only Trinity United Church of Christ, but also the community, the Thurmont Lions Club recently awarded Lenhart and Delauter its highest honor: the Melvin Jones Fellow Award.

“I was honored to receive the award,” Delauter said, “but we didn’t do it alone. We had a lot of help.”

Delauter usually opens the kitchen around 4:30 a.m., six days a week, and is soon joined by the other volunteers. Sue Clabaugh, Ziggy Leonhardt, Patty Grossnickle, Nancy Dutterer, and Joann Miller are the dedicated volunteers who also lend their time and talents to keeping the kitchen operating.

Around the time that most people are rising in the morning, smells of fresh-baked cakes are already filling the air around the church. Some people stop in for breakfast and are served eggs, bacon, and biscuits. When they are finished, they might pick up a waiting order or buy something fresh-baked.

Later in the morning, everything is cleaned up and everyone is gone by 11:30 a.m., having done their part that day to help support the church.

“I get a lot of satisfaction from serving people and talking to them when they come in to pick up something,” Lenhart said.

She worries a bit, though, about what will happen when she and Delauter have to give up working entirely.

“When the day comes that we have to stop doing this, there will be a lot of disappointed people,” Lenhart said.

The Trinity United Church of Christ offers various cakes, fruit and cream pies, chicken pies, chili, soups, country ham sandwiches, slippery pot pie, and dumplings. They are now taking orders for Christmas, if you would like to sample their goods for yourself or if you would like to place an order, call 301-271-2305.

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Photo by James Rada, Jr.

Russ Delauter and Mary Jane “Tootie” Lenhart, recent recipients of the Thurmont Lions Club’s Melvin Jones Fellow Award, are busy at work in the kitchen at Trinity United Church of Christ.