In Sickness and in Health
We've all experienced failings of the body-- a nasty cold or blast of influenza. It's all you can do to stumble around the house in search of some sort of relief, let alone be cheery and attentive to your children. Laundry waits, dishes congeal, the dogs don't get walked. Time is the only cure and you know that soon you'll feel better. But what about the bigger stuff? Ever hobble through the house on crutches or dress a preschooler with your arm in a sling? Getting to the car is like running an obstacles course and mowing or shoveling or carrying groceries are physical impossibilities. Rinsing out diapers or picking up toys become intellectual challenges as you try to navigate the ordinary terrain of the household without the ordinary use of your body. Sometimes fear can hamper our movements too: the lump, the odd cramp in the stomach, the injury that doesn't heal. What if it's something serious! When the body fails--or threatens to fail--our grip on life shifts a bit.
This is the story of three families whose lives turned on that moment when "what if" became reality; three families who have shifted their lives to incorporate, but not be subsumed by, illness. The Zimmerman, Adams, and Zwolski families each stumbled, stunned, into a world dominated by doctors, hospitals, wheelchairs, medicine. They each emerged from the initial shock and crisis to build lives that are in many ways ordinary, and in others extraordinary. Each family is living with lupus.
Lupus is a slippery disease, often difficult to diagnose because many of its symptoms are symptoms of other diseases as well. Lupus affects a myriad of body parts and varies greatly in severity; while most people with lupus can expect the disease to be moderate and limited, some face serious illness and life-threatening problems. According to material published by the Minnesota Chapter of the Lupus Foundation of America, lupus is classified as an inflammatory disease in which the immune system attacks healthy tissues and organs. Immune systems produce antibodies, protein substances that normally fight off bacteria and other foreign substances. In people with lupus, these antibodies turn against the body's own organs and tissues.
There are three types of lupus: discoid, systemic lupus erythematosus, and drug-induced lupus. The latter is quite rare: symptoms of the disease occur only when someone is taking specific drugs and the symptoms stop when the drugs do. Discoid lupus is limited to the skin, and consists of a potentially scarring, scaly red rash, especially in areas of the body exposed to sun. Systemic lupus erythematosus (SLE) is the type of lupus affecting members of the Zimmerman, Adams, and Zwolski families. SLE can involve skin, joints, lungs, kidney, blood, nervous system, brain, and more. In some cases, the disease attacks and harms a number of organs. Lupus rarely affects the spine, but when eight-year-old Bree Zimmerman was paralyzed by the disease in 1994, she became one of only forty-seven such cases that have, according to her doctor, been documented.
Lupus wasn't Bree's first challenge. Born in Ethiopia, she spent her first months in a hospital waiting for the Zimmerman's adoption paperwork to file through countless bureaucratic hands. Well aware of the health risks facing orphaned or abandoned Ethiopian children, Kathleen and Randy Zimmerman were anxious about their daughter's health even before they met her, and tried unsuccessfully to get Bree moved from the hospital to a better facility. When that transfer fell through, the couple assessed the situation: Ethiopia was in the midst of war and famine; a Washington D.C. official called and warned them it was too dangerous to travel to Ethiopia; their daughter was there and might be starving to death. Weighing all factors, Kathleen and Randy did the only thing they could do: they flew across the world and into a war to get their child.
When they were finally able to meet and take home their baby, they were relieved and grateful that malnourishment was the only thing wrong with five-month-old, ten-pound Bree. Their trip was also a tangible reminder of how luxurious the typical middle-class American life is compared to the lives of most people on this earth; Kathleen and Randy arrived back in Minnesota feeling doubly blessed and very lucky. Surrounded by love and lots of good nutrition, Bree did what babies are supposed to do--she morphed into that amazing, energetic, and mostly happy creature known as the toddler.
But when she was about three and a half, Bree's energy level began to change. She tired easily and wanted to rest a lot. Worried, her parents brought her to the doctor but nothing serious seemed amiss. By the time her fourth birthday rolled around, Bree was limping and in pain: another trip to the doctor revealed that Bree's blood platelets were alarmingly low. An X-ray showed that she had arthritis in her ankles, knees, and wrists. The possibility of leukemia emerged. Bree began receiving gamaglobulin infusions to increase her platelet count--and possibly her energy--as the tests and speculations continued. By the time Randy and Kathleen got the diagnosis of lupus, they were relieved. Kathleen remembers, "At that point we were thinking, thank God it's not cancer. It's just lupus. We were really naive about lupus."
Bree started taking prednisone, a steroid that reduces the painful joint inflammation characteristic of lupus. For a while, all seemed well. Bree's biweekly blood tests were faxed over to a rheumatologist at an institution outside of her regular hospital and clinic. Bree seemed to be feeling more energetic, she was seeing the doctor every other week, and continuing on medication. So her parents were concerned when November arrived and Bree seemed sick, despite the doctor's assurances that things were fine. They took her to be seen by a doctor more often than her biweekly visits required, and they were told that Bree had flu-like symptoms because she probably had the flu. What the Zimmermans didn't know, and were about to find out, was that the oncologists examining Bree's bloodwork had failed to fax the results to the rheumatologist. So the cancer doctors were saying Bree's tests looked fine. And they did--for a cancer patient. The doctors decreased her medication, despite Randy and Kathleen's concerns that their daughter seemed less well. But her rheumatologist wasn't receiving the reports that would've revealed that the lupus was getting worse and that her medication should've been dramatically increased.
On Christmas Eve, 1994, Bree couldn't sleep. Her back hurt. At first her parents chalked it up to excitement. But the pain increased and the family trekked to the hospital at 7 a.m. on Christmas morning for some tests. One test revealed blood in the urine, so a kidney specialist was called, and when he arrived, he was none too happy about Christmas morning hospital duty. Initially resigned, he became annoyed when Bree wouldn't stand up so he could examine her. Kathleen urged her daughter to get up, pulling her toward the side of the bed. "I said come on honey, let's just do this so we can get home. All of a sudden I pulled her around and her legs were dangling." Looking at her daughter's limp legs and listening to Bree saying she couldn't stand, couldn't feel, Kathleen remembers that as the moment she stopped being nice and polite in the face of crabby doctors. Something had gone desperately wrong. Bree was paralyzed.
"Doctors were scrambling." Kathleen pauses, caught in memory for a moment, looking in a place only a mother whose been down this road can see. "We thought we might lose her." Kathleen, Randy, and Bree tell me their story together on a snowy Saturday at their home. It's a hard story to tell; I could see how difficult it was to remember details accumulated through the years--what drug, what test, what date? Kathleen and Randy fill in the blanks for one another, move in and out of each other's conversation with the seamlessness of two people who are very close. They live with lupus and want people to understand Bree, understand what this disease can mean for a family--any family.
During our interview, Bree is busy with a large and varied collection of Barbie dolls and couture; she is quiet, occasionally interjecting a comment or two, and is self-assured and relaxed in the face of a writer with a tape-recorder.
She's a beautiful child, with loopy dark hair, brown eyes, and an oceanic smile. And she's walking. Her gait isn't easy or graceful. She limps and pulls herself along, and if she's in pain at the end of a day, she may chose to crawl, but she can walk.
Kathleen and Randy explain that in an usual move, Bree's lupus had actually attacked her spine. She was paralyzed from the waist down, with no bladder or bowel control, no use of her legs, and damaged kidneys. She required chemotherapy every few weeks. Her parents catheterized her every few hours, and woke during the night to turn her because she couldn't turn herself. For three years, there was the daily regime of pills. And there was physical therapy, pool therapy, occupational therapy, play therapy, lab tests, neurologists, radiologists, urologists, rheumatologists and finally, a psychologist to see how Bree was coping with the all consuming nature of her illness.
During those years, Bree learned how to sit and pull herself up. Using Barbies as bait, she learned how to reach out for objects. She moved from a bed to a wheelchair to a walker to foot braces to a cane to her current walking stick. Some of her bladder and bowel functions improved and she now needs a catheter every other day instead of every few hours. Her recovery and care require Kathleen and Randy's constant attention, their endless energy.
But the years spent relearning to walk also brought the first day of kindergarten, loose baby teeth, the expansive curiosity of a preschooler turning into a little girl, the fun of swimming, birthdays, holidays, and a trip to Disneyland through the Make A Wish foundation. While those were difficult years, they were also defined by love and fueled by optimism; they were spent focused not only helping Bree recover, but creating a normal, happy family life that incorporated illness as part of the day but also reached for more.
In most ways, Bree Zimmerman is your average kid. A third-grader at Kenwood, she's a member of a YMCA swim team and takes dance classes; she shares her house with two high-spirited dogs and an ancient cat. She has an expansive social life, a mother at home, and father at work. There are rules for conduct and polite behavior, limitations, excesses, and house rules. There are also handfuls of medicine: methotrexate, prednisone, imuran, oxybutin, coumacine, colchicine, suradantin. Those same drugs can make her sick in ways different from, but equally spectacular to, lupus, and their labels warn of possible lung problems, blurry vision, diarrhea, headaches, bone-density loss, liver damage, rashes, nosebleeds, and blood thinning.
It's only when talking about such impossible choices that Kathleen sounds frustrated, an edge to her voice as she rattles off the side effects she and Randy are constantly on the alert for. Mostly, they focus on the positive--and there's a lot to be encouraged about. Many of the forty-six other people paralyzed by lupus experienced a second paralysis within a year; Bree hasn't. Instead, she's relearned to walk. She has excellent doctors and the benefit of an early diagnosis. She's assertive, confident, and intelligent. Bree is also reaping the benefits of two other assets, Kathleen and Randy, who love Bree in that blood-shaking, unspeakable way parents are supposed to love children.
Optimism, flexibility, and resiliency are qualities the Zimmermans share in abundance--qualities typical of families who cope successfully with a child's chronic illness, according to psychologist Kathryn McGraw Schuchman M.A. L.P., coordinator of Children's Hospitals and Clinics' Encourage Program. The Encourage Program attends to the psyhco-social aspects of chronic illness in children and teenagers, working to strengthen and support families. Encourage has a teen-mentoring program in which a teen who's survived or is coping successfully with an illness is paired with someone similar who needs support. The program also works with families, building on their existing assets and promoting resiliency.
"There are negative consequences for kids with illnesses and their families, but the majority of them function well," says McGraw Schuchman. She notes that each family brings it's unique strengths, weaknesses, and tension to a chronic illness--as they do to any situation. Encourage helps the family build on their strengths and address their weaknesses as they address issues that arise in the context of illness. Optimism is an enormous asset; in fact, McGraw Schuchman reminds us, optimistic attitudes about illness can be associated with optimistic outcomes.
An optimistic outcome is what Danita Adams expects. In many ways, Danita represents the average demographic of people with lupus. She's female, African-American, and was diagnosed with the disease in her thirties: African-Americans, Latinos, Asians, and Native Americans are at particular risk for developing lupus; ninety percent of people with lupus are female; and most are diagnosed during their childbearing years, between fifteen and forty-five. So far, Danita's lupus has been moderate, which is much more common than the course Bree's illness has taken.
Another characteristic typical of people with lupus is that at times they can look perfectly healthy, which is often why people around them fail to understand just how serious the disease is. When I met Danita Adams, she looked fantastic--and in addition to having lupus, she was seven months pregnant, a feat that can sap the sturdiest of souls. Danita's healthy, rested appearance seems even more astounding in light of her job in mortgage banking with its time constraints, deadlines, and demands on a daily basis. She also has a four-year-old son, Justice, and is quite recently a single mother after ending the partnership she's had most of her adult life. When she can, she takes evening college courses.
Danita was diagnosed in December 1997, after months of suffering what seemed a mysterious set of symptoms. First, there was the exhaustion. Getting home from work each day was a relief, and it was all she could do to lurch toward the couch. Once there, she simply couldn't get up--couldn't will herself, couldn't force herself. Justice ate cereal for dinner, learned to clean his room, and picked up his own toys at the end of the evening. Danita's body ached. Her hands were swollen. It felt like a flu she couldn't shake. Perhaps worst of all was the persistent 101-103 degree fever. Work and motherhood were her priorities, and everything else--the weekend cleaning spree, jaunt to the park, or dinner with friends--fell to the wayside. She became a frequent visitor at her medical clinic, trudging there a couple of times a week in search of an answer.
The "what ifs" haunted her: what if it's cancer? Terminal? There was initial relief each time a disease was ruled out and a quick return to the worry. Finally, when a fever of 105 landed her in the hospital, a new doctor walked in and within seconds offered an answer. "You have lupus," he announced, immediately alerted to her condition by the scaly butterfly shaped rash spreading across her nose and cheeks. Lab tests verified his assessment and showed that while Danita's kidneys were leaking protein, there'd been no permanent damage yet.
Like many lupus patients, Danita began regular visits to a doctor and started taking large doses of prednisone along with a diuretic to counter the excessive weight gain that is prednisone's hallmark side effect. She quickly, thankfully, felt better. Like most lupus patients, Danita's story isn't dotted with major surgeries or constant hospitalizations. Like most, Danita's story is instead about daily pain and limitations. It's about the decisions this disease demands: if you can only stand for a limited amount of time--say an hour--what do you do with that hour? This is the type of basic, difficult choice people with lupus often make.
All of Danita's decisions revolve around her son and the daughter she's expecting. So if she can only stand for an hour, that's an hour she'll use for Justice. If walking or using her hands is painful, she'll tolerate the pain if she's doing something for Justice. The people she works with have been supportive and understanding. When someone offers to get up and make copies or walk paperwork into another room, she takes them up on it. It's all about conserving her energy, choosing what's worth the pain. Evenings, she rests and takes care of her son. There is never a quick trip to the grocery store or a stop at the dry cleaners. All errands and household chores wait for the weekend, because there's never a full day of energy.
Part of conserving energy means surrounding herself with people who share her attitude toward lupus. "I am not going to let lupus get to me," she says. "I'm doing the same things I did before, it's just that I have less energy." Her always close-knit family has followed Danita's lead with this sentiment and they serve as cheering squad, analyst's couch. Although most of her family lives out of state, she talks with her twin sister or mother nearly every day; her mother is planning to help take care of the baby when Danita's maternity leave ends. Most importantly, her family understands what lupus means in Danita's life and does everything they can to support her.
Unfortunately, not everyone has responded this way. Danita recalls her mother-in-law's initial reaction to the diagnosis. "She works in a hospital. She thought I was going to die." When Danita announced her pregnancy, she got more of the same--including an implication that lupus would ultimately mean Danita's demise and boundless pain for her children. "That was the end of that conversation," Danita remembers. That's the kind of cloud she won't have hanging over her head, or over her children. Her illness also contributed to the end of her ten-year relationship. Like all long-term partnerships, hers had it's strengths and weaknesses before she was developed lupus, but the disease threw some of the tensions into focus. "If I'm going to give fifty percent, I expect the other person to give fifty percent." Her partnership was draining, not rejuvenating, and there simply wasn't room in Danita's life for that dynamic.
Danita is confident and optimistic, and conscious of how important those two qualities are for her life and her children's. She wants her children to grow up with a sense of security--something that lupus can quickly shatter -- and is committed to surrounding them with people who reflect love, security, and hope back to them. If people can't contribute a bit of hope and beam of confidence, she can't be concerned about pulling them on board. It's not worth the walk.
Mark Zwolski understands what hope and confidence can mean to a family: he is the only person in the house who doesn't have lupus. His wife, Cary, was diagnosed with the disease at twenty-two, shortly after the birth of their second child. Since then, Cary, now thirty-nine, has endured and survived a brain aneurysm, coma, kidney problems, chronic arthritis, and over twenty surgeries. She's also had two strokes and the subsequent memory and motor-skill loss that can follow. Last summer she developed restrictive cardiomyopathy, a condition similar to congestive heart failure. For the first decade of her children's lives, Cary spent as much time in the hospital as she did at home; those years were defined by her struggle to stay alive. She strung birthdays, holidays, and all the firsts of childhood into her lifeline. "I wanted to see Laura go to kindergarten, Katie get to kindergarten. It was one thing after another."
Cary also knew her two daughters would need her guidance through their own battles. Laura, eighteen, and Katie, sixteen, are among the five percent of children of mothers with lupus who develop the disease themselves. Born with a bothersome rash that continued into her toddler years, Katie started having difficulty walking when she was around three, and her arthritic symptoms led the family to immediately suspect lupus. Laura was diagnosed as a fourth-grader, when the stomach flu led to that telltale rash and arthritis. While Katie and Laura haven't had serious flares of lupus in several years, they each had one or two significant bouts with the disease as elementary-school children.
During those early years of marriage--with Cary critically ill and his daughters sick off and on, too--Mark Zwolski stepped up to the plate. He worked nights at the post office, and when he walked in his own door 7 a.m., his mother (who spent nights with the girls for years) walked out. After spending some time with the girls, he brought them to day care so he could sleep. With a typical four or five hours under his belt, Mark would spend afternoons at the hospital, keeping Cary company, talking to doctors and participating in the countless decisions and discussions about health care. Then it was off to get the girls, eat dinner, and have some family time, then out the door again as soon as his mother arrived for the night. Maintaining the house and mowing the lawn and buying the food and clothes and taking care of the kids when they were sick were his responsibilities, too. On the days or nights or weeks when the doctors announced, "this might be it," the backdrop to his days became Cary's death. When asked what this period of his life was like, Mark Zwolski puts his head in his hands and cries.
Mark and Cary spend the rest of the interview side by side, Cary handing her husband Kleenex, her hand on his arm. "It hurts," Mark remembers. "I just recall trying to save my wife. I kept so busy I couldn't think about it much, but looking back, it was hard." Cary describes Mark as the center of their success through this period, the person who provided a "solid and safe" home environment for their children, and the one whose optimism and faith never failed them. Mark explains how his relationship with God was--and still is--a pivotal part of his ability to persevere. "You roll over your cares and concerns to God. He doesn't want fifty percent, he wants all of them." Every day, no matter what challenges or crises were looming, the young Zwolskis took a few minutes to remember their blessings. Not metaphorically or vaguely, but to list specific things they were grateful for, acknowledge what was joyful in their lives. With two delightful children, a caring extended family, and a remarkable love for one another, their lists were long.
Cary describes Mark as fundamentally optimistic and reliable. His daughters feel that way too, and it's obvious that despite their mother's health history and their own lupus, Katie and Laura are marvelously typical teenage girls: during the interview they're a bit preoccupied with impending social engagements, a bit bored by a couple of hours spent with adults, and not at all fearful for their own futures. Yes, they have memories of laying awake together at night, worrying about their hospitalized mother. They also describe growing up quickly and being more mature than others their age. Laura, now a freshman in college, notes that even as she schedules her courses, she's aware that a lupus flare is a possibility; planning is practical, but not a guarantee. There's always the chance that she'll get sick.
Cary, in particular, is aware of how profoundly her chronic illness has shaped the young women her daughters are today. She attributes Katie's independence and Laura's perfectionism, in part, to a childhood mapped out against illness, to early years spent worrying about Mom. They're both excellent students and high achievers, children who learned early to be good. She's aware that she's taken center stage and sees her daughters silent when it comes to their own lupus, lackadaisical about their own health. Some of this is part and parcel of a teen: what sixteen-year-old is careful to eat well, get rest, take medicine, acknowledge pain? Part of it is long-held family roles. Mom is the sick one, Dad the strong, the girls helpful, independent, and brave.
But all families--in sickness and in health--allocate roles and work through tensions. All families have strengths and weaknesses, but what makes a family successful in dealing with chronic illness is their ability to acknowledge and address strengths, weaknesses, dynamics, roles. As McGraw Schuchman maintains, it's vital that a family recognize the psycho-social aspects of illness: chronic illness doesn't just claim the body, but affects all parts of life. Nan Gustafson, Director of Education for the Minnesota Chapter of the Lupus Foundation of America, Minnesota Chapter, agrees. Having worked with lupus patients and their families for years, Gustafson says that a lupus diagnosis may be painfully problematic for a family already not functioning well. The disease can bring with it incredible financial, psychological, and social strains.
Gustafson says the people she's admired and learned from over the years are people like the Zwolski's, those who effectively communicate, and take responsibility for, their own needs and emotions. The key to sustaining a solid family is to dive into whatever dynamics erupt and sort through needs and feelings respectfully and directly. It's important that caregivers receive care themselves; it's vital that people with lupus feel they can give as well as receive. Gustafson's observations are sound for any family. People who thrive, she says, take responsibility for their own needs and have a realistic perspective on what challenges lie ahead.
The Zwolski's are open and unguarded in addressing the undercurrents of their lives. Mark and Cary see the difficulties their daughters have faced, but each also has an eye peeled for the silver lining. Both can pull out fond memories of what was joyful and loving about the hardest years. If being constantly bed- or couch-ridden meant Cary couldn't clean or cook, it also meant that she had hours of time focused on her children. She remembers lots of reading, puzzles, cuddling, stories, and talks. Resting wasn't a solitary room or a dark space for Cary, it was a big bed filled with little girls and dolls and books. Katie and Laura also developed close relationships with the many extended family members streaming in and out of their house; they became confidants and comrades, they developed solidarity and friendship that remains today.
Lupus also offered Mark and Cary the chance to define priorities, to make daily decisions about what was most important. In many ways, that was an easy and liberating task: family first. So whenever she was able, Cary volunteered at schools or girls scouts, offering her daughters some memories of a healthy mom. Maximizing time took on a different quality in the Zwolksi household than in most. Imagine what maximizing time means for many of us. For me it often means I've got clothes in the washer and dryer, there's an article to proofread on the kitchen counter and the pasta's boiling while I'm slicing tomatoes and talking on the phone as my two-year-old paints apples at my feet and the baby kicks--or even nurses--in the sling. That kind of multi-tasking makes Cary Zwolksi laugh in amazement, for the hours in her days as a young mother were measured differently.
"Every time I was with the kids, every time I could hug them and kiss them good-night, I knew this could be the last time. I treasured that so much more." Hours in the day weren't tallied by tasks to be tackled, money to be earned or objects to be bought, but by the connections family members were able to make with each other. Questions drove her days: what kind of memories will my daughters have of this afternoon, this day, their mother's life? Every healthy moment was another shot at letting her children know how deeply they were loved.
Cary remains genuinely astounded at the importance people invest in houses, clothes, cars, and cash. Certainly, there are basic physical and financial needs we all must meet. But beyond that, there are choices. Surviving all these years on Mark's income as a postal worker, the couple counts wealth as they do other blessings: they see the value of their lives reflected in happy, confident daughters, and in the love they have for one another. Cary's life--dominated by lupus but defined by devotion to family--tops the list of things for which they're grateful. They count themselves lucky, and while both speak of the other's strength, it's together that they appear unbeatable.
Cary's latest life-threatening event with lupus began last summer when she developed restrictive cardiomyopathy, a generally fatal condition in which chambers to the heart can't fill and pump properly. Until that point, her year had been good, with only one hospitalization and a life that looked typical. She enjoyed the respite. When she learned that her heart would no longer function properly, it came as a doubly difficult blow. "I fought so long and so hard. I thought I was at the end of the tunnel, the end of the really bad stuff."
The prognosis for people with restrictive cardiomyopathy is poor. "Just to hear that word--fatal," remembers Cary. "That was hard. I thought I was done with the big stuff." But Cary's heard and fought "fatal" before. Her lifeline remains as strong now as when she first strung it together with her daughters' kindergartens. There's Katie's high school graduation next year, Laura's graduation from college after that. She plans to see her girls build their adult lives. Perhaps more than anything, she is looking forward to sharing an "empty nest" with Mark, growing old with him.
"This past summer was a big scare." For the first time during our discussion, her eyes drift and her face falls. "I had a hard time fighting through this one. A real hard time."
There's a break, a new pulse through the room as pain and fear flare for an instant. "But Christmas," she says, both hands on Mark's and the lines in her face lightening, "This was the best Christmas we've ever had."
On February 27, Danita Adams gave birth to a healthy, seven-and-a-half pound daughter, Hyatt. Although the baby is thriving, Danita remains hospitalized after suffering a stroke and a series of other complications. Her always supportive family has mobililzed and Danita's mother, her twin sister Dawn, and older sister Tara have arrived in Minnesota to care for Danita and her children. Family members bring Justice and Hyatt to the hospital to spend days with their mom. Hoping they've seen the worst, the family has faith in Danita's recovery and her future with her children. Due to Danita's hospitalization, we were able to include her and her family in our scheduled photo sessions for this story.
For more information about Lupus, contact the Lupus Foundation of America, Minnesota Chapter: 1-800-645-1131 and 6122-375-1131.
Mary Petrie is an award-winning writer and frequent contributor to Minnesota Parent.
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