Julie's Angels: Fargo woman brings group of friends, supporters on journey with ALSFARGO - What’s on your wish list? Going to Hawaii? Getting a better job? Learning to play tennis? Well, how about Julie Kottsick’s list? “I’d like to walk. I’d like to speak without slurring. I’d like to lift my arms higher than my waist,” she says
By: Merrie Sue Holtan, SheSays contributor, INFORUM
FARGO - What’s on your wish list? Going to Hawaii? Getting a better job? Learning to play tennis? Well, how about Julie Kottsick’s list? “I’d like to walk. I’d like to speak without slurring. I’d like to lift my arms higher than my waist,” she says
Three letters can change a life. The ABCs can make you educated, and RBIs can make you a sports all-star. ALS, however, can rob you of life as you know it.
Julie, of Fargo, has lived with Amyotrophic Lateral Sclerosis (commonly referred to as Lou Gehrig’s Disease) for eight years. A progressive neuro-degenerative disease that affects about 40,000 people, ALS causes loss of voluntary muscle movement and usually means a lifespan of two years.
For 44-year-old Julie, ALS has revealed the value of a year, a month, a week, a day. And arm-in-arm, 16 angels, two children, a husband, her parents, relatives and a community walk the journey with her. One might be considered lucky to have one guardian angel; Julie has 16, who schedule themselves weekly to support what needs to be done.
Julie’s parents moved from her home town of Grand Forks to south Fargo and into the house right next to her, her husband, Bud, and two kids, Carly, 15, and Evan, 12.
“It doesn’t seem right that my parents have to take care of me, when I should be taking care of them,” she says. “Both are in their 80s. My dad and I start every day playing cribbage. It’s been so nice to have them close by.”
After Julie’s diagnosis, so many people wanted to help but didn’t know what to do. Julie’s neurologist suggested forming a group as part of the National Share the Care volunteer program; they became Julie’s Angels, sisters in hope.
Jodi Buchholz of Fargo has known Julie for 12 years. Their paths crossed when Julie served as director of sales for the Fargo Holiday Inn and through mutual friends. Now she’s a member of the care team.
“Julie’s character is quite simple and frank,” Jodi says. “She is strong, original and she believes. I would never call it ‘helping Julie.’ It’s better explained that she helps me.”
For several years, those in the care team have scheduled weekly visits with Julie. The group brings over meals, helps with projects and shopping.
“I live vicariously through them,” Julie says. “I love hearing about their work days and about their families. I figured if they could see me often, they wouldn’t be scared by the progression of my disease. It is a scary disease.”
In Jodi’s eyes, Julie was and still is a determined business woman and takes on leadership roles, especially in her fundraising and advocacy for ALS.
The family organized a walk and raised $40,000 for ALS, and Bud and Julie have both been in Washington, D.C., to speak to Congress and the North Dakota delegation.
Recently, Julie, along with 35 volunteers, organized the Julie Kottsick ALS Basketball Jamboree Tournament raising $14,000 for ALS. She estimates they’ve raised $300,000 for the Minnesota-North Dakota chapter of ALS.
“We need to keep supporting initiatives that will speed development of new treatments,” she says. “We certainly need more corporate dollars.”
Cindy Becker and Julie worked together at the Holiday Inn. Now she manages Julie’s Share and Care schedule.
“Being a part of this group,” Cindy says,” has brought me close to some very special people that will be part of my life forever. Julie did not bring these people together for her care, but also for us to help each other with her celebrations and struggles.”
Julie allows herself one day a month to have a “pity party,” as she calls it. The rest of the month, it is not allowed. Each “angel” has seen her on “that day” and on the days where she is full of faith, encouragement and fun.
“We have so much fun and laugh so much that it’s almost embarrassing,” Julie says. “It’s our girl time.”
Angel Mary Sue
Apparently angels don’t just wear halos – they also sport crowns. Beautiful, large, sparkly pageant crowns.
Mary Sue Ohlhauser of Fargo, a former Mrs. North Dakota International winner, met Julie on the pageant circuit. The women’s pageant experiences wove in and out between Bismarck, Mandan, Fargo and Minneapolis. It took them from mere acquaintances to friends.
Before Mary Sue entered the Mrs. International pageant in 2005, she had just learned of Julie’s diagnosis. Julie was supposed to enter the pageant but couldn’t. Julie permanently traded in her business pumps and pageant high heels, for sneakers.
“Julie is ‘drop dead gorgeous,’ ” Mary Sue says, “and I wanted her to be part of the pageant. So, I wore her interview suit, and before going on to nationals, I had changed my platform to ALS advocacy.”
The angels have organized raffles, dinners and auctions to help the Kottsicks remodel their home to make life easier for Julie with widened doorways, restructured rooms and a handicapped accessible van.
Mary Sue recently won an award from the Mrs. International organization for ongoing commitment to her pageant platform. She currently serves on the ALS Minnesota-North Dakota board of directors and has also lobbied congress to raise ALS awareness.
The Littlest Angels – Carly, Evan and Jessie
The Kottsicks have a family mission statement: Practice gratitude, lend a hand, you can make a difference and give us all a reason for hope.
Bud and Julie never lied to the kids about ALS, but they never quite knew how to tell them what would come next because they didn’t know. Every case is different. Julie currently has logged more than 1,000 miles on her wheelchair following the kids around to activities.
“I think we have nine trips in six months to the Twin Cities for Carly’s and Evan’s events and games,” says Julie. “I’ve told them, I can’t help you make a jump shot, but I can be there to cheer you on.”
“I try to say yes a lot more to them,” Julie says, “and even though they are teenagers, I still wish I could tuck them in at night and give them bear hugs. … They are probably relieved I cannot.”
The kids know how to feed her and prepare her for bed. Jessie barks when the door opens like a good dog should and sits protectively on Julie’s lap most of the day.
“I rarely allow myself to think about the ALS,” Julie says. “But I am tired of it. In my dreams at night I am able to walk.”
And walk she will, with her angels beside her.
“My angels have become good friends,” she says. “Now they have each other. That is my gift to them.”
Julie’s other angels:
Cindy Zetocha, Beth Sundet, Kathleen Wrigley, Patti Donat, Judy Kubalak, Stacey Allard, LaDonna Bannach, Heidi Vetter, Brenda Derrig, Donna Westrick, Kristi Ulrich, Jen Fisher, Betty Opheim.
Merrie Sue Holtan is a regular contributor to SheSays. She lives near Perham, Minn.