‘I felt them again last night.’ I was suddenly a single dad to 4 boys. This wasn’t supposed to happen.’: Man loses wife to Cardiac Sarcoidosis, vows to ‘tell her story’

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“It was the coroner, I knew the number by now. Five months after my wife had died in her sleep, and we still didn’t have any answers. ‘The autopsy was definitive,’ she remarked, ‘Cardiac Sarcoidosis.’

What was that? How long had she had it? Were there warning signs? Did I miss them? Is this genetic? What about my kids?

These are just a few of the questions that raced through my head, as I Googled the term. But deep down I knew that none of this would change the reality I was facing, none of this would bring her back. My healthy, 36-year-old wife of nearly 13 years was gone. I was suddenly a single dad to 4 young boys. This wasn’t supposed to happen. This was not the story we wrote together…

Man stands holding youngest son beside three other sons and wife who has since passed away
Twig and Olive Photography

Wendy and I met during my senior year of high school in Menasha, Wisconsin. She was a year younger than me, so we only ever had one class together. We happened to sit near each other because of our last names, and became friends because of this proximity. After a few months, we started dating, just before I graduated and went off to college. This was the start of a 5-year long distance relationship between us – a relationship that I still can’t believe survived those years.

I made so many bad choices, so many mistakes during that time – but I knew I had gotten one thing right…Wendy. After a series of physical injuries related to my binge drinking and drug use, I became disillusioned with the lifestyle that I had idolized for so many years. I started searching for truth, reading voraciously, separating my life into spheres of ‘good’ and ‘bad.’ Wendy personified everything that was ‘good’ in my life.

Husband and wife who has since passed smiling when they were younger dressed for school dance
Courtesy of Steve Ullmer

On March 1, 2003, at the age of 22, life changed for me. God had gotten my attention. Literally. In a moment. A moment that defies natural explanation. As I sat there in the middle of the night, alone in my car, heart pounding, tears flowing…I surrendered. For Wendy and I, this changed everything for us and our relationship. When I told her I had given my life to Jesus, she couldn’t believe it. I proposed two weeks later. We were married the following year. She had been with me through it all, she loved me through it all. This amazing girl was now my wife, and we were ready to start our life together.

Man and wife who has since passed stands holding a puppy when they were younger
Courtesy of Steve Ullmer

‘I felt them again last night’

It was March 16, 2017. Wendy, now 36, hadn’t talked about any heart palpitations in over four years. Back in 2012 she saw a Cardiologist because she could feel her heart randomly skipping beats or fluttering sometimes – especially at night. She had worn a heart monitor more than once, and they diagnosed her with PVCs (Premature Ventricular Contractions). It made sense, since her dad experienced the same thing. PVCs were common, and almost always benign, we were told by the Cardiologist. So here we were, over four years later, and it seemed that the same PVCs she experienced in 2012 had returned.

Man squats in corn field with younger son in his arms beside other three sons and wife who has since passed
Courtesy of Steve Ullmer

Wendy was a nurse, and very diligent with her health. So when she went into work that morning, she had her boss order her a heart monitor, and even had a few of her fellow nurses listen with a stethoscope. When I got home from work, Wendy and I spoke briefly about the heart monitor she was now wearing – but I can’t say I was alarmed. I had seen her wear one before. I had actually worn one myself recently, after experiencing some of my own ‘skipped beats’ (I was diagnosed with a second degree atrioventricular block).

That night felt like any other night. We talked a bit in bed about the upcoming weekend after putting the kids down, and I fell asleep sometime around 10:30 p.m. The next thing I remember was coming out of sleep and hearing her take a breath that didn’t sound quite normal – more like a gasp. I tried to wake her up. There was no response. I shook her, screamed her name, begging her to wake up. A wave of terror came over me as I fumbled with my phone to call 911. She was no longer breathing at all, and I couldn’t find a pulse. I frantically performed CPR until the sheriffs arrived. They immediately tried to revive her with a defibrillator. Nothing. Again. Nothing. Still no heartbeat. I was now hysterical, and started to call family. EMTs arrived on the scene, but were unable to revive her before taking her to the hospital.

We followed the ambulance to the hospital and were met with the news that they had somehow restarted her heart. In my mind this was a miracle. Perhaps the first miracle of many, which might result in my wife coming home with me alive. But the updates from the ER doctor were increasingly grim over the next few hours. The final update hit me like a fist to the face. ‘If her heart stops again, we do not recommend resuscitation.’ I stared blankly at him, refusing to acknowledge the statement. Not long after that, her heart stopped. I heard ‘CODE BLUE’ over the PA system as medical staff rushed into her room. I told them to resuscitate, while we prayed. They took every possible measure, a machine violently compressed her chest over and over. They would not stop until I gave the word. As each excruciating second passed, hope faded. Death was palpable, it seemed to envelop the room, with a suffocating presence. I started to get pleading looks from the doctors and nurses. I finally uttered the words.

‘It’s enough’

Wife who has since passed from Cardiac Sarcoidosis sitting on plastic chair on pontoon boar
Courtesy of Steve Ullmer

It was March 17, 2017. My wife Wendy was gone. The days following were the darkest I have ever known. Telling my kids that Mom wasn’t coming home from the hospital, writing her obituary, the day of the funeral…none of it felt real – yet there was no waking up from this nightmare. I longed for the escape that sleep brings, but sleep eluded me. Grief had taken over my mind, my body.

There were so many questions surrounding her death. Was it a heart attack? Stroke? She was wearing a heart monitor when it happened, so surely they could determine something from that, right? From the monitor, we learned that her heart went into a type of rhythm called Ventricular Fibrillation (V-Fib) at exactly 11:31 p.m. that night. In this state, the heart no longer pumps, and blood simply stops flowing through the body. We believe she was sleeping at the time, and that she lost consciousness very quickly, as is typical during V-Fib. Records show I placed the 911 call at 11:43 p.m.

Man stands smiling beside wife who has since passed from Cardiac Sarcoidosis
Courtesy of Steve Ullmer

So what caused her heart to spontaneously go into this deadly rhythm? Perhaps the autopsy would shed some light on it, but that could take months. What about the kids? Wendy clearly had heart issues. Her dad had heart issues. I had heart issues. Were my 4 boys in danger? Suddenly, the fear of losing one of them haunted me like it never had before. I remember calling the Pediatrician’s office and telling them I needed all of their hearts checked RIGHT NOW. I took them to a Pediatric Cardiac Specialist where they performed echocardiograms, and sent them all home with 24 hour heart monitors. I tried to downplay all the testing, but kids are amazingly intuitive. They knew Mom had died from a heart issue, and now we were suddenly focusing on their hearts. I remember my neighbor telling me her kids were scared to see my boys running around outside with heart monitors. I was too.

The autopsy revealed that Wendy died from a disease called Sarcoidosis. We don’t know how long she had this disease, or whether the heart palpitations she had experienced in 2012 and again in 2017 were related to it. We know the Sarcoidosis had gotten into her lungs, kidney, liver, and heart. Once in her heart, this inflamed tissue eventually disrupted the electrical pathways, ‘shorting out’ her heart, and causing it to stop pumping.

Peace of mind. I longed for it. I often found myself and those around me looking to the wrong things to bring peace. I thought that once my kids were given a clean bill of health (they were), then peace would come. I thought that once we had autopsy results, then it would come. While I was thankful for a clear diagnosis, there was also the temptation to look back at the months and years leading up to her death and try to come up with scenarios that would have saved her. If I could just find someone or something to blame, perhaps that would bring peace.

But real peace, peace in your soul, needs to come from something other than yourself. It can’t be dictated by your circumstances, because circumstances are constantly in flux. There are those that would tell you peace comes from within, you just have to find it. I don’t agree. I know myself too well. Real peace has to come from something bigger, something greater than yourself. Real peace has to come from Someone greater than yourself. Wendy’s death broke me in ways I hope to never experience again. My faith was tested beyond what I ever could have imagined. It took a conscious effort to let go of bitterness, and view her life as a gift – not as something that was ‘taken’ from me. No one saw this coming, but God did. I have even come to see the ways God was preparing Wendy, and our family for this tragedy in the years prior to her death.

Mother who has since passed from Cardiac Sarcoidosis smiles while holding son as baby
Courtesy of Steve Ullmer

God could have stopped this from happening. Why didn’t He?

Anyone who believes in God has wrestled with some form of this question. Even my kids alluded to it during our many talks in the weeks after Wendy died, after I had moved all of their mattresses into my bedroom. Perspective matters when considering this question. There is a big picture that only God can see. A picture so vast that no human could possibly comprehend, one that involves trillions of events, choices, and interactions – each of them setting off a ripple effect. God’s plans for eternity are the ultimate point of this life, and often we are left with only mystery and questions as we struggle to understand this broken world. So all we can do is trust. Trust that God is good, even when life is not. Trust that there absolutely will be pain in this life. Trust that we are never alone, and that He will walk through the pain with us. Trust that He will not waste our pain, that He can use it, that He can bring good from it. Trust that death is not the end of the story…

Something burned deep in my heart after Wendy died. A recurring element of clarity in a dense fog of grief. A simple phrase, one that gave me purpose and a path forward.

‘Tell her story’

I had to do this. I had to share my precious wife with the world. Not only who she was, but what she believed. Wendy’s story is one of beauty and pain, joy and sorrow…such is life. During her life, she too was taken to a place where her faith was tested, through the loss of a baby. Her story is relatable because it’s real, and Wendy was not a faker. If you would like to read her full story, you can find it here.

Can God bring beauty out of Wendy’s death? He can. He has. He will.”

Toddler sleeps in pack and play holding picture of mother who died from Cardiac Sarcoidosis
Courtesy of Steve Ullmer

This story was submitted to Love What Matters by Steve Ullmer, 38, of Sherwood, Wisconsin. If you would like to learn more about Wendy’s story, and how life has changed for Steve and his children, you can find it here.

After Wendy’s passing, Steve got a message that would change his life forever. Read that story here:

‘Everything was changing. But it was grief that brought us together.’: Widows fall in love after losing spouses to tragedies, now a beautiful ‘blended family of 8’

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