A column by JOHN ANDERSON
After just over six decades on earth, the family of Sue Barner was gathered around her bed in an intensive care unit this past June, knowing the next day, her heart and kidneys were going to stop.
They put up a good fight. However, the heart was working overtime since 2021, and as a result, the kidney’s were shutting down. She had tried everything, but her body rejected it.
I’ve always believed karma was a good thing, almost spiritual. You do good things, and good things happen. Bad things happen to bad people. That’s not karma.
Sue Barner is one of the good guys. Where do you start?
A good place to start is with her professional career. She was a teacher assistant in the special education department at Wellsville Central Schools. This meant helping students achieve goals by working with them one-on-one every single class, every single day.
Her free time was the short drive home. When she got home, she kept that smile on her face as she raised her son, Zachary, who is also developmentally disabled, but for 33 years has had an all-star caregiver as a mom and functions at a high level.
The rest of the time? She was the glue that kept a family together. Families can have differences, families have arguments, love each other, then argue again! But there’s always that one person who is exempt from it all and radiates kindness and love. That is Sue.
The years of work at school would have to come to an end.
During the winter of 2021, a snow plow driving by woke Sue up, or she may have passed away in her sleep. She could barely breathe, but mustered up the strength to call 911. She was rushed to Jones Memorial Hospital in Wellsville and then sent to Strong Memorial Hospital in Rochester to the Cardiac Catheterization and Electrophysiology Laboratory. Thanks to the quick work by employees of the two UR Medicine hospitals, they knew she was having congestive heart failure.
Sue left Strong Memorial with an implantable cardioverter-defibrillator in her chest. That lasted until just after Christmas last year.
Despite the pacemaker, her heart wasn’t holding up its end of the bargain. It was back to Rochester, flanked by her sisters, Bonnie Schettine and Kathryn Quant-Brownell.
The next option was to get Sue a left ventricular assist device, also known as LVAD. This mechanical device would actually start doing the work of pumping blood for the heart. That lasted six days. The heart was too weak. And the kidney situation worsened because of the heart. They were shutting down. She needed a kidney and a heart to survive.
There was no going home. Doctors at Strong Memorial said she wasn’t going anywhere. Little did the hospital know, this was a “keep one, get two” deal, as Bonnie and Kathryn were not leaving, either.
For seven months in two hospitals on each end of the state.
And this is where karma kicks in.
Sue has a rare blood type, so finding a heart is difficult. Finding a donor with the same blood type and a good heart and kidney is impossible.
With her heart failing, a call came in, someone with her blood type passed away, and the heart was functioning. She asked about the kidney. The deceased did not have a kidney that could be used. For Sue, it was a no-brainer, let someone else use the heart.
The heart was used. A 19-year-old with the same blood type needed a heart and because Sue gave up the heart, this person would live.
She was not alone. Bonnie and Kathryn were still with her.
But then there was Zachary. Sue asked her niece, Tisa Robbins, to take over guardianship as her son, at 33, was struggling to take care of himself alone.
Zach has also had set-backs. When he was a senior in high school, his dad passed away. His dependency on his mom grew as a result. Sue was doing everything she could to help her son despite her heart.
Now, Tisa and help from People Inc. had to take over. One strength of Allegany County are the incredible resources for anyone with developmental disabilities. The Arc of Allegany-Steuben assists with the most severe cases and has homes to transition individuals who are ready to live on their own. People’s Inc has employees working tirelessly to help anyone with special needs receive the support they need to participate and function independently. You never know when you may need these services. An accident or illness could cause a traumatic brain injury. These organizations are vital.
But so are people like Sue Barner.
And now Tisa was about to learn the ropes with zero training.
Tisa owns Pampered Pet Salon, and now she has an assistant. Zachary came to work with Tisa every day. Zachary functions at a high level, but there are also settings where he struggles at a 5th-grade level. While his smile and enthusiasm masked any deficiencies, going seven months without his mom at home was going to take a toll.
Without his mom, it was torture. He was devastated. Zachary kept thinking there was hope, his mom would come home, and she did not.
Tisa continued to work with Zach. He would prep the area for the pets and greet customers. The customers would come in with a dog and leave with a dog, but gained a new best friend in Zach. He was so popular, clients were giving him gifts and cards of thanks.
However, Sue’s condition worsened. She had to leave Strong Memorial Hospital on June 9 and was flown by an Empress Emergency Medical Services plane to the New York City area to Westchester Medical Center in Valhalla. Westchester Medical Center is one of the best kidney and liver transplant programs in the nation.
Sue’s heart was nearing the end. The move to another facility was a fact of life, there are more deaths in the New York City area and more chances of finding the blood type and a transplant.
So there they were, the sister act, Sue, Bonnie and Kathy, living each day knowing it could be the last for Sue. Taking her for walks, getting her in the sun, keeping their faith.
The prayers were answered with hours to go on the old heart. A matching heart and kidney was available. Sue was rushed into surgery.
Meanwhile Tisa was preparing for the worst. She was working with People’s Inc. on an apartment for Zachary and becoming his part-time caregiver. She trained Zach at work and at home and he was responding.
This would help Sue, as she came back to her home in Wellsville on July 29, 2024. Bonnie and Kathryn came back home to their families, too.
It was a wonderful Thanksgiving to have everyone together, and now Christmas was near. Zachary has learned to shop, and wanted to thank his mom for everything she has done for him over the years. He asked Tisa to take him Christmas shopping.
Zachary has a compulsive disorder that makes him want to get things in large quantities. When he goes to a dirt track to see races, he wants to be at the top of the bleachers. As a result, when it came to shopping for his mom, he wanted the best.
Tisa and Zachary entered Kohl’s together and he raced to the jewelry department, past the tables of sales items and clearance items Tisa was hoping he would stop at. She knew better, Zachary went to the cases and saw a cross. He saw the gold chain, the silver cross and diamonds. The diamonds were not real, but the shine was real.
So was the price tag of $130.
In the first week of December, Zachary asked the employee at the jewelry counter for “the Black Friday discount.” The employee said it was too late, but he could ask someone up front at the registers.
Zachary heard that loud and clear, “Go up front to the registers.” Tisa, who finally caught up to Zachary at the jewelry counter, spun around as he ran to the front. All she could hear was “excuse me, excuse me.” Zach was told to go to the front. He was never told to wait in the back of the two lines with 30 customers during the busiest shopping weekend of the year!
When he got to the front, he asked, “Do you think I can get the Black Friday discount?” As Tisa was rushing to the line to apologize to customers, Zach explained, “I want to get my mom jewelry — the most precious and best jewelry. She deserves it. She has been the best for me all these years.”
Tisa slowed down. The customers in line who had those blank “waiting in long line” looks were now smiling.
The employee at the register had permission to give the Black Friday discount. And some others, and a few customers may have handed out some Kohl’s cash. While this was being tallied up, Zachary decided to get a second opinion.
And a third opinion. And a fourth opinion.
Zach started asking each person in line, “Do you think my mom would want this?” He continued, “She always takes care of me, she’s taken care of me my entire life. She has always made sure I had what I wanted and never got things for herself. I am thankful for her, thankful she is alive … God answered our prayers!”
The customers approved.
Now it was time to pay. Kohl’s wanted $14 for the gift, down from $130.
At a time when people wanted to buy for others and not be held up in a line, they smiled, they laughed and they came up with almost 90 percent of the cost.
Zachary had new confidence. He shopped for other family members at Bath & Body Works. He got a gift set of hot sauce for someone else.
And during the family Christmas, he presented his mom with her cross. A cross is a sign of humanity and faith, and this one embodied all of that and more shown by Sue and now by Zach.
Zach’s setbacks were tremendous to him. As his mom and aunts were gone for seven months, he has learned to live and someday soon to live alone. He has learned to shop and learned to work.
Sue opened the gift and realized all of this — her selfless life has not been lost on anyone. She brought family together and helped others while six hours away in a hospital. Others rallied around her.
Not only was her heart finally functioning this Christmas, it was warm as well.
(John Anderson is a contributing editor to the Sun. he can be reached at jandersondigitalmedia@gmail.com)
