‘I normally would hear from him by noon each day, so when I had not gotten a call or text I started to wonder why. I sent a text asking how his day was. No answer. I called, no answer.’

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“To understand where I am today, you must understand where I have been. My childhood was uneventful. I was an independent, adventurous, and happy kid. When I graduated high school, I had a plan. I was going to move away and start my own adventure, and that is what I did. I saved and planned and when I was 20 I moved 3,000 miles away from my home in Virginia to California. I had adventures, I was carefree, I started my career and I met friends I still value to this day. After 3 years my career took me on a brand new adventure. In late 2003, I moved to Tennessee with 3 weeks’ notice. I was excited and grateful I had several coworkers I called friends that moved down south with me. Tennessee is where my adventure took turns I could never have anticipated. I remember it like it was yesterday.

It was March 2004, and I had not been feeling well for several weeks. I was back and forth to the doctor every few days due to exhaustion and trouble breathing. I couldn’t even walk up a flight of stairs without having to stop and catch my breath. First, my doctor thought I was experiencing new allergies and then she thought I had asthma. After weeks of treatment for allergies and medication, I continued to get worse.

I woke up the morning of March 24th nauseas, weak, and barely able to walk. I stood up from bed and barely made it to the restroom before I started to vomit blood. I was scared, I knew this was not normal. Usually level headed, I tried not to freak out. Instead of calling an ambulance, I drove the 3 blocks to the emergency room. I was admitted immediately. I had lost close to half of my blood volume prior to making it to the hospital. The doctors focused on stopping the bleeding, even though they did not immediately know where it was coming from and had no idea what was wrong with me. I started on a medication cocktail including high dosages of steroids. I had 2 blood transfusions to keep me alive while doctors tried to diagnose me. I was not in control of my medical decisions and the doctors were very selective with what they told me.

The hospital staff stayed in constant contact with my mom who was living in North Carolina and making the decisions about my care. At the time, I didn’t know they told her they did not know if they could save me. I was a fighter though. I kept in good spirits, likely because I had no idea how bad it really was. After a week, a specialist was flown in from another hospital to help diagnose me. After 2 surgeries, I was diagnosed with a rare auto-immune disorder called Granulomatosis with Polyangiitis also known as Wegner’s Granulomatosis. At the time this was a hard to treat auto-immune disorder, and we knew from the symptoms I had a severe case. I learned that this disorder attacks my body, causing my immune system to flip on me and try to reject my lungs.

Courtesy of Brandy Butzbach

Once diagnosed I was a guinea pig for treatments. I initially started on chemotherapy to kill off my immune system. I was admitted to the hospital monthly for the next 12 months and received high dosages of chemo. In late May 2005, I was admitted once again with a lung hemorrhage. This time my doctor decided I needed more help than she or the hospital I was at could provide. On Memorial Day 2005, I was transported to Vanderbilt University hospital via ambulance.

Once at Vanderbilt, I worked with an experienced doctor that had previously worked on a case of Wegner’s. To allow others to gain experience with this disease, I agreed to allow students to come and meet me, review my case, be involved in my treatment and care. When I left the hospital, I had hope. I started a new chemotherapy treatment that I took daily, I was on medications that would protect my lungs and help me feel more energetic. I did great until November 2005 when I was admitted back to Vanderbilt due to another lung hemorrhage. This time they were not letting me leave without a treatment that would stop this once and for all. By the time I left I had been put through the wringer with various tests and biopsies. However, they had hope in an experimental treatment that was being used in Germany. I also started on anti-rejection drugs. The treatment would save my lungs, which at this point, were so damaged I was on oxygen 24 hours a day. I left the hospital on this new treatment and did not have to be admitted again. I was able to slowly wean off the oxygen. I was feeling better.

Courtesy of Brandy Butzbach

During routine checkups, we found that although my lungs were getting better, my kidneys were failing. This was a side effect, we knew could happen, but I could live a far better life without kidneys than with my lungs failing. In 2006, I was diagnosed with End Stage Renal Disease and started on dialysis. I remained grateful even after everything I had been through and was thankful I could live a relatively normal life. I had a career that supported my need for time off and would be welcomed back with open arms each time I returned. I continued working, going to dialysis and focusing on the positives in my life for the next 7 years. I had little hope of getting a kidney transplant in the early years, they said I was too sick to qualify, but I never gave up hope. I worked to gain more strength in my lungs. I lost the 85lbs I had gained from the massive amounts of steroids and continued to lose until I was at an acceptable weight to have a transplant if I ever got approved. My lungs healed, my symptoms decreased, and I was finally listed as in remission from the auto-immune disorder.

My case was re-submitted to the transplant board and I was told if I remained in remission for 1 year, then I would be approved to be placed on the transplant list. In 2009, I got the call that I was officially placed on the transplant list. I would wait a few more years with no match in sight. Then in 2012, I had a stranger step forward willing to donate. He was approved, and we had a surgery date. One month prior to the surgery, he backed out. I was devastated and depressed. In 2013, a friend of a friend offered to get tested. I was hesitant due the past disappointment, so I did not want to get invested. Despite my reservations, she went through all the testing and was approved! We were waiting for the transplant board to give us a date when I got a call on May 29, 201,3 at 7 p.m. from an unknown number. I never answer unknown numbers, but this time I did. The call was to let me know that a cadaver kidney was available immediately. I was told to be at the hospital by 9 p.m. and surgery would be scheduled for 1 p.m. on May 30th. My transplant was a success and I went home 3 days later. Within weeks I felt like a person I had not known for years. The next year was spent celebrating the life I was never sure I would have.

Courtesy of Brandy Butzbach

I had already been through so much in my life and was ready to settle down and start a family. I was ready to just live life and find that person who was ready to do this life with me. I remember the first time I saw Ben; my friend Robin was at the Billy Joel concert with her buddy, Ben, and posted a picture of him on Facebook saying he was single. I immediately replied that he was a cutie and for her to remember that I was single, too. Shortly after I had posted my comment, I received a private message from Robin because she realized immediately we would be perfect for one another. Ben had been through a lot of heartache and had overcome his own medical struggles. He was ready to find his future.

Courtesy of Brandy Butzbach

As she tells it, once he saw my picture, he had no interest in anyone else. This was in March of 2014 and it took a about 2 months before Ben was ready to meet me in person. He had just started a new job and wanted to be financially ready to have a girlfriend. Robin and I were out at a Girls Night when she finally convinced him to pull the trigger and get out of his comfort zone to come meet me. He showed up after being stuck in traffic for over an hour, and Robin and I greeted him outside. He was visibly nervous, but that did not last long. It was that night I got to see his humor. He had me laughing, saying he was not there to meet me, he just wanted nachos and I happened to be at a place that served nachos and I was hanging out with HIS friend. We stayed for a couple of hours talking before heading home. Shortly after I had gotten home, I got a message from Robin saying Ben was having a cookout the next day and Ben told her she could bring a ‘friend.’ The night of the cookout was the night I started to fall in love with Ben. He was so funny, grilled a good burger, and somehow had me agreeing to taste the ‘World’s Hottest Hot Sauce.’ That was the night two phrases that were echoed throughout our entire relationship were born: ‘Remember that time we killed Brandy’ and ‘Damn it, Robin!’

From that point forward, it was Ben and Brandy. It wasn’t long into our relationship that people were asking when we were getting married. I never took it too seriously, as I expected that we would date a few years before he would want to get married again. In the beginning of 2015, the inevitable Valentine’s Day commercials started, and I would joke with Ben how cliché it was to get engaged on Valentine’s Day. I always told him I would love a ring, but I would kill him if he ever proposed on Valentine’s Day. He assured me he wouldn’t because he knew I had to work that day, plus he had been planting the seed that he would be busy anyway with an interview for his Radio Show.

Courtesy of Brandy Butzbach

When Valentine’s Day came, I spent the day at work with plans afterward to meet Ben at Bridgestone Arena to watch the Nashville Predators game. That morning he gave me what I thought was my gift, $100 to go get my nails done and buy myself some new makeup I had been wanting. He made me promise I would leave work in enough time to pamper myself before I met up with him. I did not know he had an ulterior motive for me having pretty nails. When I showed up to the game, he had planned for me to get pulled by the game operations team to participate in a game during a break in the Preds game. The game they had me play is one they do often. They gave me 3 clues, and I had to guess the player they were describing. I got the first clue. ‘This person has been part of the organization since close to day one.’ I did not have a guess. Next clue, ‘This person’s hobby includes painting, fishing, and dancing.’ I still did not know so trying to be funny I said Big Ben. See, Ben was kind of a big deal around Bridgestone Arena. He is known for being a Superfan and was often featured on the Jumbotron with messages for the fans and the team painted on his belly, so I knew all the fans would know who I was speaking about. That is when it happened. I guessed the right person. No need for the third clue.

Up on the jumbotron popped a picture of Ben with, ‘Brandy, will you marry me’ painted on his belly. I turned around, and he was down on one knee with the most perfect ring. I was in shock, but of course I said YES! We had no clue of the media attention that would follow. As it would happen, we were iced in at home for the next four days. We had media reach out from as far as London to do an interview. We married on September 25, 2015, in front of 125 of our friends and families on a farm. It was exactly the wedding we wanted; low key, but full of dancing and laughing. It was one of the happiest days.

Courtesy of Brandy Butzbach

I was a wife. Being a wife was something I never thought would happen for me. We had a good marriage. Like any couple, we had our ups and downs, but we were in love and in it for the long haul, in sickness, and in health. He was my rock when I was hospitalized due to a severe infection in my transplanted kidney. He never left my bedside unless it was to go get me food so I did not have to eat that terrible hospital food. I was there for him when he had a head injury that caused him to not be able work. We were exactly what each other needed.

Christmas of 2015, Ben surprised me with a gift of a Predators baby bib, and a onesie he wrapped up and had me open away from his family. We were going to try for a baby! We knew it would take a lot of doctor’s approvals and some general testing to see if I was healthy enough to carry a baby safely. In April 2016, we got the all clear. Shortly after, I ended up in the ER with abdominal pain. Being a transplant patient, they were always cautious with my pain near my transplant site. We found out I had a tumor in my uterus, and my OBGYN was unsuccessful in removing it. We were referred to a fertility specialist who successfully removed the tumor in January 2017. In the process, we learned we would need to undergo fertility treatments to get pregnant. We started fertility treatments in July 2017 and had not been successful in conceiving by October.

Courtesy of Brandy Butzbach

Halloween 2017 started like any other day. I had to be at work early, but Ben woke up when I got up and we laid in bed for a bit talking before I had to get ready to go. After I had showered, he was still awake, so I laid in bed for a few more minutes before getting up and preparing for my day. I left the house at 7:30 a.m. and went about my day. I normally would hear from him by noon each day, so when I had not gotten a call or text I started to wonder why. I sent a text asking how his day was. No answer. I called, and he didn’t answer. I thought maybe he was busy, however, by 1:30 I started to worry. I was in a training and couldn’t leave, so I logged on to our cell phone account and did not see any usage for him all day and that was abnormal. When I got out of training at 3:00, I tried texting and calling again, yet still got no answer. I went to my boss and let him know I needed to run home and check on Ben. I told him I would be back in 20 minutes. I left work and drove all the way home fine until I pulled into my neighborhood. As I pulled onto my street, I got an eerie feeling and immediately, for what at the time was an unknown reason, began to cry. I got inside, walked up the stairs to our room, and that is when I saw him and knew. He was gone. He looked like he was sleeping, but he was laid over on his stomach and he never slept that way. I touched his toe and I knew for sure. I called 911 and waited.

Ben passed away from a massive heart attack at the age of 33. His mom had a history of heart issues and Ben went to the heart doctor every 6 months, and everything appeared to be fine. They believe he had the heart attack shortly after I left for work.

Courtesy of Brandy Butzbach

That was the worst day of my life. Everything came crashing down in front of me. The life we planned, the adventures we were going to go on together. They were all gone in that minute. Those first hours and days are a blur. I remember having to call his parents who had only left our house two days earlier and had not even made it home to Florida yet. That was the hardest call I had to make, and I remember all I could get out was that, ‘Ben was gone. Ben was dead.’ His mom’s voice of disbelief broke my heart all over again. I just shattered her heart and there was nothing anyone could do to make it all make sense. I remember calling Robin. She was at work, and I knew she may not answer, but I knew if I had to, I could keep calling and she would answer. She just happened to not be on a call with a customer, so she answered, ‘You know I am at work, right?’ All I could say was, ‘Ben is dead.’ ‘What?’ ‘Ben is dead.’

Robin immediately called her husband, because he could get to me before she could as she worked 45 minutes away. Robin did not leave my side for days. She handled the calls, the text messages, and helped me write the Facebook post that had to be posted sooner than I wanted because the media had already heard the news. Robin and Ben’s best friend made sure I did not have to speak to anyone I did not want to speak to. Robin went with me to make his final arrangements; she helped pick the casket, helped me buy a dress for the funeral, and made sure I was eating. Robin held her own breakdown over losing one of her best friends, so she could be there for me.

I thought of the idea for this photo shoot just days after Ben passed away. I was unsure if it made sense or if it would be creepy or too much, but Robin assured me it was unique and a special way to remember Ben and our love for one another. The process of dyeing my dress and getting the props and flowers ready was intense. It brought back so many memories, and so many tears. On the night I dyed my dress, I washed my gloves and laid them on the counter. I went to hang out with Robin and when I came home the glove had fallen off the counter into the ‘I love you’ sign. I knew right then that was Ben’s way of letting me know that everything was going to turn out great, and that he was ok with this being closure for me.”

Paper Flower Photo
Paper Flower Photo
Paper Flower Photo
Paper Flower Photo
Paper Flower Photo
Paper Flower Photo

This story was submitted to Love What Matters by Brandy Butzbach of Murfreesboro, Tennessee. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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