Who was Leo?

As I remember Leo and try to put into words all of the ways he impacted me as his mother, I find my heart traveling down the many roads we journeyed together. The love between mother and son is full of joy and trial, fiercely reciprocal in protection, admiration, and fortitude. I never imagined that at the young age of 22, Leo would be gone, my biggest fear would be realized, and all at the same time he would be an organ donor- a lifesaving hero.

As a child, Leo had an imagination as vast as the starry sky. He was full of mischief, and like most boys, fearless by day and a scaredy-cat by night. Leo had a twinkle in his eye and could win over even the most stoic with his smile, charm and wit. He was the third of six children. His siblings were his world and he, their go-to and confidante. Sammie and Andee were the big sisters, Jacie the little sister, with Simon and John the little twin brothers. The six have just over nine years age difference between them from oldest to youngest. That being said, their bonds were sealed together at young ages and would prove to be the glue to endure Leo’s untimely death. At present, their ages range from 32 to 23.

As Leo grew, so did his interests. He loved playing sports and tried his hand at several. During his school years he wrestled, played football, hockey, baseball, and ran short distance races and relays in track. He was Captain of his Varsity football team and has held school records in both football and track. In 2012, Leo was a Track State Champion in the 4 X 100 relay and was part of that year’s State Champion Track Team. Leo learned how to play guitar, loved to sing with his family at the piano, was an avid reader, enjoyed hunting, writing poetry, gaming, cooking, and spending time with family and friends. Leo adored his nephews and nieces. He carried a gentle soul in his heart, donned the looks of a heartbreaker, and held insight beyond his years. Leo was deeply inspired to help those in need and showed empathy to the outcast.

During his Junior and Senior years in high school, Leo struggled with alcohol and substance abuse. He attended inpatient treatment programs to face his inner battles. Even with the undying support of friends, family, and community, his future seemed to be continually unraveling. As a mother, I felt helpless and defeated. I couldn’t understand why he would throw away so much talent and opportunity when his future was full of promise. It made no sense to anyone, especially to Leo. He tried time and time again to start over, turn over a new leaf, get healthy, lift weights and work out, and find the motivation to go to work. Every day was truly a struggle. Many days he was not able to even get out of bed due to his depression. Leo would eventually confide in me about negative voices in his head that relentlessly taunted him, admonished him, convinced him that he was not worthy of love. I knew something was clinically wrong as I witnessed him losing touch with reality. Ultimately, Leo was diagnosed with schizoaffective disorder after several hospitalizations and psychotic breaks. The deepest pain I suffered as his mother was witnessing Leo, who was once seemingly unstoppable and on the top of the world, suddenly deemed a vulnerable adult with a disability, being assigned a county case manager, and battling a severe, debilitating mental illness within a matter of a year or so. Finding the medications and dosages that worked for Leo took years, but slowly I was getting my son and his smiles back.

Due to an overdue probation violation, Leo was faced with a decision to go to jail for a short time or to attend what he hoped would be his last inpatient treatment program. He had been working as an electrician's apprentice in a Minnesota union but found himself laid off before Thanksgiving. He thought his time would be better spent meeting some new guys and finding ways to cope with his mental illness. Leo was excited when he got the call that there was a room for him at the treatment center and was excited to go. Sadly, while in treatment, medication changes were made causing negative side effects, and he attempted to end his life behind a locked door. When his friends noticed him missing, they found him lifeless in his room. A firefighter who was in attendance did CPR and kept Leo living long enough until medical personnel arrived. Leo was later intubated and flown to Sioux Falls, SD on life support.

We drove three plus hours to Sioux Falls in the middle of a cold, windy December night. When we arrived at the hospital, we learned that Leo would likely not survive and there appeared to be little to no brain activity. We also learned that Leo had “checked the box” to be an organ donor. The Life Source RN facilitator spoke to us with the deepest of grace, asking how we felt about donating Leo’s major organs. Without hesitation, we all unanimously agreed Leo’s last wish would be to save another person’s life.

That day, Leo received his last rites. He was surrounded by many family members who came to support us during this shocking, and surreal time. We took turns holding his hand, talking to him, sharing stories, and praying for the success of the transplant surgeries. Once brain testing showed no brain activity, Leo was declared dead but left on life support. At this time, the energy shifted to finding recipients for his major organs. We were updated very regularly as the recipients were chosen. As we were made aware of the age, gender, interests, the state of residence, and what organ each would receive, we knew that we were experiencing multiple miracles! We cried tears of joy each time we learned of each recipient for Leo’s organs. In our deepest sorrow as a family, we could not have imagined any higher emotion than experiencing this- giving the gift of life to another family just before Christmas!

Before Leo was taken for surgery, the hospital’s clergyman arranged a Donate Life flag-raising ceremony in front of the hospital which was done to honor Leo. We sang songs, listened to words of comfort from the minister, and watched the flag raise and wave under a spotlight. Our time with Leo was ticking away as we anticipated surgery to begin within a couple hours. After returning to Leo’s room, the Donate Life RN asked us to write on a piece of paper things that we would want his surgical team to know about Leo.  He explained that our written sentiments would be read before surgery started, and there would be a moment of silence in the operating room to honor Leo. Both sides of the paper were filled effortlessly as our memories composed the greatest of love letters.  It would be our final goodbye to Leo in a place where we couldn’t be present. This compassionate gesture of the surgical team touched our family deeply and brought us immeasurable comfort during our most difficult moments.

The time came to take Leo, and several nurses and hospital staff pushed his bed, along with all the medical equipment which was keeping his physical body alive. We followed them, holding each other arm in arm, through hallways and up elevators and down more hallways which never seemed to end. Ultimately, we reached the operating room and bid farewell to our beautiful Leo, our life-saving hero.

The next morning, the Surgeon called me to let me know that surgery had ended, and all of Leo's major organs were harvested with success. I knew he had been up the entire night and morning performing the most intricate of surgeries. I thanked him with the deepest of gratitude imagining how exhausted he must have been. Before we traveled back to Minnesota, we drove past the front of the hospital to admire the Donate Life flag which we had raised together only the night before. The significance of that moment was one of inexplicable pride. Losing a child was my biggest fear imaginable, but his organ donation brought great meaning and purpose to his tragic death.

Our hope is that Leo’s Legacy will not only bring awareness to organ donation, but moreover, those in need of a transplant will not be excluded from receiving a life-saving organ transplant due to lack of insurance or an inability to pay. As Leo's family, our hope is that by sharing Leo’s story, Leo's Legacy can give hope to those in financial need by providing necessary monetary resources. Please consider giving to Leo's Legacy. You will truly be donating to the miracle of life... the greatest gift of all!

"Today I will talk about God. Though I am Catholic my views on God are so much different than the average person. I think of God as being hope. We hope there is a God and we put full devotion towards Him to get to heaven. It's the same as all religions, they all put their hope into their gods when all is lost. This hope feels to all religious people that there's something to live for. Something to die for." -Leo Hoehn