life julie kottsick

“Yes, I used to wonder, is this all there is? Isn’t there more to life? And now I see that this is it, there isn’t any more, we already have far more than we deserve and yet we take it for granted.”

story by | lisa gulland-nelson

Weakness in her left hand, an undetectable slur in her voice, a slight loss of balance a year before her doctor, she knew. In 2004, 36 year old Julie Kottsick was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. “I fell to my knees and I thought what are we going to do? I asked God to carry it for me. Almost instantly I knew I was not alone. We’re not alone.”

ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord that control voluntary muscles. The muscles you use every day without a second thought; those to walk, talk, or breathe, stop working. Four years of living with the disease has robbed Julie of many physical abilities, but it has given her a new perspective on life. Last winter Julie constructed a book of pictures, quotes and her own writings to share this perspective on life with her kids; 11 year old Evan and 8 year old Carly. She titled it “Life Tends to Smile on Those Who Smile Back” as interpreted by Julie Kottsick.

“The title is actually a quote from Noah benShea and it really resonated with me,” Julie explained. “Before ALS, people had always commented that when they saw me, I was usually smiling, and after ALS that is still the case. I have always felt as though life smiles on me and I hope and pray that I encourage it by smiling back. Some days it (a smile) is all I have to offer in return for people’s concern and generosity.”

“Making the book was a very healing project,” Julie explained. “I have a great deal of satisfaction knowing that someday our kids can pull out the book and get a sense of how I might view a situation and if the “advice” helps them, great, if not, at least they may know where I stand.”

Life Tends to Smile… We knew all the statistics and they were not pretty. I was painfully aware of what ALS would take from me, but I had no idea what it would give to me. Gradually, gifts were revealed, gifts that are given to us all, but often go unnoticed; the revelations of time, community, gratitude, humility, faith and clarity.

The average lifespan of someone with ALS is two to five years. The ALS website refers to medically documented cases where the disease stops progressing or progresses at an incredibly slow rate, but it also claims lives much faster. “We’ve seen people come and go in six months,” said Bud, Julie’s husband of 13 years. “We spend our days trying to forget and then when someone passes reality kind of slaps us in the face,” Added Julie. “It’s tough because there’s no treatment and no cure.”

Life Tends to Smile… I no longer wish time away. ALS has revealed the value of a year, a month, a week, a day. I tell my family and friends that I love them. I say it out loud, I write it in notes, I do my best to reveal it in my actions. Today is a gift that is why they call it “the present”.

Before ALS, Julie was an active member of the FargoMoorhead community. She worked for the Holiday Inn as the Director of Sales and was on several Chamber of Commerce committees. Once she was diagnosed, she resigned from her job and said goodbye to her old life to face the next chapter. “I traded in my high heels for sneakers and through that gained a whole new perspective,” she joked.

Day by day. That is the approach Julie and Bud have instilled in Evan and Carly. “We never lie about it (ALS), but in the same token, we don’t know what’s coming,” explained Julie. “We just keep telling them this the way it is today. I can’t help you take a jump shot, but I can be there to cheer you on.”

“No one knows what tomorrow brings. I try to say yes a lot more. Not to things, but if the kids want me to watch them play or play a game, stay up half hour later, eat popcorn for lunch.” But Julie added, “It breaks my heart that I can’t do Carly’s hair.”

Life Tends to Smile… Please don’t feel pity for me, for I am richer than some will ever be, but take the time to seize the day, make a difference, practice gratitude and enjoy the gifts we all take for granted.

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.

“We’re blessed with so many wonderful friends and my parents live next door.” The Kottsicks said Julie’s parents have provided needed help allowing Julie to get out of the house much more. “The support from family and friends has made this exponentially more doable.” Bud said.

“We have been so blessed and given so much love, support, money and prayers. I want the kids to know the importance of giving back,” Julie explained. “With everything we have received and been given, I want them to know they have the power to do that for someone else.”

Life Tends to Smile…We have no way of knowing the twists and turns our lives will take (this is a good thing!) but through it all, friendship remains our constant companion and many days, it’s the strength that helps us drive on.

A group of Julie’s friends take turns helping her each week. The group, part of the national Share the Care volunteer organization, helps Julie with just about anything. Kristi Ulrich is part of the group and has known Julie for eight years. “There are sixteen of us that rotate weeks to do something with Julie, or for Julie,” she explained. “Sometimes it’s bringing lunch over and visiting with her or other times it could be preparing dinner for Julie and her family. It’s helping out with whatever Julie happens to need that week.”

“I live vicariously through them,” Julie admits. “I love hearing about their boss or crabby co-worker. They keep me strong.” Julie has also had the opportunity to impact her friends. “Beautiful is a word that comes to mind when I think of Julie,” explains Kristi. “Not only the exterior beauty that is Julie, but the inner beauty that radiates each and every time you see her or talk with her. Julie has remained very positive throughout her battle.”

Life Tends to Smile…There are many stories of individuals faced with adversity, yet our businesses and citizens never seem to wane on compassion…I continue to marvel at the generosity of our neighbors and friends, and that of complete strangers.

About six months after Julie’s diagnosis, several friends organized a dinner, raffle and silent auction. Kristi was one of the organizers and never doubted the success they would have. “In my mind I had set a rather high number that I believed we could achieve. Julie has touched so many lives that I thought we wouldn’t have trouble raising the funds. It was a remarkable evening, filled with love and generosity. [It was] a huge success due to the many, many friends that Julie has.”

The money raised allowed the Kottsicks to remodel their home and make life a little bit easier. They added an elevator, widened doorways, restructured Julie’s bathroom and purchased a handicap accessible van. Julie recalled the impact the event had, “This tremendous show of generosity literally changed our lives by helping us avoid taking on additional debt.”

Although most of the time Julie can laugh and take what life throws her, there are days when reality is too much. “We have pity parties once in a while.” Julie said.

Life Tends to Smile…Poor Me. Poor Julie. Poor Mommy. This is what we say at our house one day a month. It’s not a predetermined day, I just wake up one day and make an announcement and that’s it. All day I mope around and Bud and the kids say, “Poor Julie, Poor Mommy” a lot. Then I cry every 30 minutes or so and get lots of extra hugs and go to bed and it’s over until next month. We’re way too busy for any more of that crap.

When her pity party is over, Julie gets to work helping to raise money and awareness for the ALS Association. Julie said it took a while for her to realize advocating and fundraising for ALS was something she should be doing. “I thought that would be selfish, but as I moved along I realized that if the people with ALS don’t advocate for it no one will.”

The family has made advocating a priority. They took part in a walk helping to raise $40,000 for the ALS

Association. Bud and Julie also made a trip to Washington, D.C to speak to the North Dakota delagation and Congress. “It’s not about finding a cure for me. It’s about the other Evans and Carlys out there.”

Life Tends to Smile…I have always believed that everything that happens in our lives is part of a Divine plan. Everything happens for a reason; it is not for us to understand and it is not for us to question.

Julie’s book includes letters to her children. She said, “You never ask about the day you were born until you have kids.” She explained the day each entered the world and the wishes she has for them. “I want Evan to trust himself and his instincts. Carly, I want her to be open to other opinions and know not everyone is going to agree with her.”

Julie said it’s important to know that what happens, happens for a reason. “Trust, trust in yourself, trust that whatever is happening in your life is happening for a reason, and we have the power to decide how to react to it. We can let it consume us, or we can hop into the driver’s seat and steer.”

Life Tends to Smile…In three whirlwind years, I can no longer lift my arms higher than my waist, hold anything more than 3 pounds, walk further than 50 feet, get out of a chair unassisted and my slow, slurred speech is often hard to understand. I never thought it would happen to me, but unfortunately, I am not alone.

It is estimated that about 30,000 people have ALS. Julie had advice for those facing challenges like ALS. “I would want them to know they should not be too overwhelmed. There’s still hope.” Julie said she still lives a normal life with ALS. It’s just a “new normal.” “You can still enjoy many things. There’s no need worrying about tomorrow.”

Life Tends to Smile… No, I don’t feel cheated, I feel gifted. I have an insight to life on earth that most people will never experience and the time to share it.

“It’s very human to always want more. A diagnosis like this really makes you step back and say what’s really important, and to me I think its people. Love each other, be kind.”

One of Julie’s favorite quotes is by Abraham Lincoln and it hangs in her living room; “and in the end, it’s not the years in your life that count, but the life in your years” and with courage and a contagious smile, Julie lives that quote. In Julie’s words “Seize the Day!”