Weathering The Storm, a book written by Lakeland mom and teacher, Marybeth Misgen, was recently published. The book showcases her son, Nick, who was diagnosed with Duchenne Muscular Dystrophy at only 3 years old.

Duchernne muscular dystrophy is an inherited disorder that involves muscle weakness that progressively gets worse. It is caused by a defective gene for dystrophin, a protein in the muscles. Because of the way the disease is inherited, only boys are affected. Duchene Muscular Dystrophy occurs in about 1 out of every 3,600 male infants.

Looking back, Misgen remembers being devastated.

“It was a week after Nick’s third birthday. It was a very difficult day. I remember the feelings of fear, hopelessness, sadness, and overwhelmed with the diagnosis,” said Misgen.

The storm has had both ups and downs.

“Nick has had to overcome a physical disability that continues to make his muscles weak. He has had to navigate through life with many devices (leg braces, walkers, strollers, a special tricycle, a manual wheelchair, a power wheelchair, etc.). He has had to be creative to find new ways to do thing his peers did. He learned to play the viola with a special piece of equipment to hold the viola in his hand. He learned to downhill ski in a bi-ski. He has gone off to college with the help of PCA’s (personal care assistants), access assistants for classes, and the desire to have the college experience his peers have,” said Misgen.

Duchene Muscular Dystrophy changed the family’s entire life forever and their house and family vacations, in particular.

“We have had to learn to care for a family member with major health issues and obstacles to overcome. We have built an accessible home with an elevator and ramps to help him. We have had to be creative with family vacations and events. Not all things we like to do as a family are accessible. We have become very involved in foundations and agencies to find a cure for MD. We have met many wonderful people through the years because of Nick’s MD,” said Misgen.

Shortly after Nick’s diagnosis, Misgen wrote a poem about a sailboat and a lighthouse, meant to represent the storm that the family was undergoing.

“One warm, humid day the skies were deep gray and filled with mischief,” she wrote. “The lighthouse sensed danger in the air and felt a sense of panic erupting within. She tried to call out to the sailboat, but it was much too late! The miniature boat was plummeting helplessly up and down in the wickedly monstrous waves. The lighthouse watched in pain as the boat struggled to stay afloat.”

Misgen’s poem and the story behind it have inspired many.

“I wrote the poem two weeks after Nick was diagnosed. It was a way for me to put my feelings and words into something productive. It was healing to write it because I identified with that terrible storm. Through the years, the poem has been shared with others, has given me comfort, and is something I am proud of,” said Misgen.

Little did she know that the poem would later be published and transformed into a book.

Shortly after writing the poem, Misgen put it away for several years. She brought it out again when she spoke at events, such as, an on-air telethon for the Muscular Dystrophy Association. She shared it a second time when the association asked her to speak at a convention.

Then, Misgen put the poem away and didn’t share it publicly for about 10 years. That is, until a family friend, Sharon Marty, suggested Misgen have the poem published.

Marty found an illustrator, Linda Niebling, who did the pictures for free. When the illustrations were finished, Marty typed up the poem and put a copy of the story and the illustrations in a box and gave it to Misgen.

It was absolutely perfect.

“I just couldn’t believe it was my poem in print and with gorgeous illustrations. I was very touched that she made it happen,” said Misgen.

Misgen decided to undergo the final steps of writing a book about her family’s experience, and paid the cost of self publishing the book. “When Nick was first diagnosed, I could find a lot of information on what MD was, how it was going to affect Nick, and all sorts of research. There wasn’t a book like Weathering the Storm to give me hope, confidence that we would survive through all of the uncertainty, and to give me a personal connection and face of the disability. I want to give others hope, encouragement, and a chance to know that their dreams for their child CAN still come true,” said Misgen.

“It was a bit scary and very costly. However, I would do it all over again! The self-publishing allowed me to get it in print quickly and gave me control of the process. I was afraid when I ordered 80 that it would be too many. I am thrilled that over 300 copies have been bought. I am so happy that others find the story something they can relate to and find hope in,” said Misgen.

Now she is distributing the book through Valley Bookseller and Amazon, along with selling copies herself.

Nick, now 19, a graduate of Stillwater Area High School and is a freshman at the University of Minnesota. He is majoring in Economics.

“It is a dream come true!” said Misgen. Nick had talked about going to the U of M for years, but there were many pieces that had to fall into place, over the course of a year, to make it happen. “It was nice to be able to make this dream come true and to see him so happy at the U,” Misgen continued.

When Nick is not going to classes or doing homework, he plays goalie for the Minnesota Magic Power soccer team, which uses specifically built wheelchairs in competition. The team, coached by Steve Misgen, Nick’s father, won the National Championship in Power Soccer in 2012.

This was another dream come true for the Misgen family, who have bonded over soccer and the inspiration derived from the players and the games. “We have met lots of amazing people and formed many lasting relationships through soccer,” said Misgen, who has decided to donate proceeds from her book to Minnesota Magic, the wheelchair soccer team Nick plays on.

“Nick is happy for me about the book. He knows it means a lot to me, but in his eyes, we are just a normal family. When I tell him that he is an inspiration and that I am so proud of him, he just shrugs and gives me a smile. He is happy and that is all that matters right now,” said Misgen.

The family has come a long way.

“Finally the storm cleared,” she writes in her book. “The waters became manageable, then glassy and clear. Slowly, the wind died down until all was calm again. The sun came out and rays of warmth spread all around … The lighthouse realized there would be more storms in the journey ahead, but she knew the little boat was stronger having survived the one. Her heart was filled with pride.”

Through hope, the family continues to weather the storm.