BLUE EARTH - Cara Marie Thompson-Weir says it was a blessing to care for her mother before she died of scleroderma.
Now Thompson-Weir wants to raise awareness about this little-known, devastating disease with a pair of events.
"It was an amazing gift to watch my mother face death; our relationship grew," Thompson-Weir said of Darlene Marie Thompson, who died in 2008, at age 72. "My mother was so inspirational to me. So much courage and so much strength."
Cara Marie Thompson-Weir will present her book “A Butterfly’s Song: Watching Mama Fly Away” at Red Rock Center in Fairmont on July 18, then perform at The Scleroderma Benefit Concert on July 20 in Blue Earth. The concert is in memory of Thompson-Weir’s mother, Darlene Marie Thompson of Winnebago, who died from scleroderma.
Thompson-Weir will visit Red Rock Center in Fairmont from 2-6 p.m. July 18 to talk about scleroderma and her book, "A Butterfly's Song: Watching Mama Fly Away," in which she chronicled Darlene's journey.
"I hope with this book to be a crusader for this disease," Thompson-Weir said. "They know so little about it. These people are suffering quite silently."
Copies of the book will be available. Thompson-Weir wrote it under her non de plume, "Cara Marie."
She also will be giving away a set of tickets each hour for a concert to be headlined by Merrill Osmond, lead singer of the Osmond Brothers. Also performing will be Tom Paschke of Blue Earth, the Minnesota Yodeler and Kerry Summers, ventriloquist/magic/variety entertainer.
The Scleroderma Benefit Concert will begin 8:30 p.m. July 20 at the Faribault County Fairgrounds grandstand in Blue Earth. Tickets are $15 and it is all general seating.
Proceeds from the concert will go to The Darlene Marie Thompson Scleroderma Benefit Fund at the Minnesota Chapter for Scleroderma. Tickets are available at Wells Fargo Bank by donating $15 to the fund. Or those interested can go to the website and donate. Either way, concert-goers must bring a ticket receipt and a form of identification to the concert. Those interested can visit www.bycaramarie.com or www.blueearthchamber.com for additional information.
In case of inclement weather, the concert will be moved to Blue Earth Area High School.
Osmond will sing songs from the Osmonds' 55 years in show business, and he will perform songs from his tribute album to Elvis Presley. Thompson-Weir and Osmond will perform a song that Thompson-Weir wrote for her mother, titled "Still My Heart Believes."
Thompson-Weir was a huge Osmond Brothers fan and met Merrill's sister, Marie, after a show. The two girls were pen pals before Marie's song "Paper Roses" hit the charts. Their shared religion sparked a friendship with Merrill as well. Thompson-Weir wrote music for one of Merrill Osmond's albums, and the two have done charity work together.
This time the cause is scleroderma (skleer-oh-DUR-muh), an autoimmune disease. "Scleroderma is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues - the fibers that provide the framework and support for your body," according to mayoclinic.com. It can involve only the skin or it can affect other organs and body systems.
"In general, it starts in the limbs," Thompson-Weir said.
"She'd probably had it quite a while," she said of her mother, who was dianosed in 2005. "If you touched her, her hands and arms were just hard. When she was diagnosed, it was in the heart and lungs."
The disease is difficult to diagnose. Treatments can give some relief, but can't stop the disease. Even worse, there's no cure.
"Because it is a deforming disease, these people will retreat, withdraw into isolation because they don't want to be remembered the way it leaves them," Thompson-Weir said.
"My mother had to be on oxygen," she said. "Her heart had to beat so hard to keep oxygen in her lungs. It was in her heart muscles too. The lungs can't get any air because they are so tight.
"Before she passed, my mother was probably 80 pounds, but she was the most dignified 80 pounds I've ever seen," Thompson-Weir said.
"It was positive for me because I got to know my mom in a way I never knew her," said Thompson-Weir. "It drew us closer to each other. We talked a lot over those months and years about spiritual things like she and I had never talked before. It gave her a lot of strength to open up in ways she hadn't before.
"In our country, we don't realize the gifts we can be given by giving back to our parents in their time of need," she said.
"My mother was an amazing woman. She kept such a positive attitude; never was focused on herself, thinking of everybody else," Thompson-Weir said.
It was that giving nature that makes Thompson-Weir think her mother would approve of the concert to spread the word.
"I think she'd want them to have that hope," Thompson-Weir said. "Keep going, full speed ahead. Keep your hopes up."