My 18-month-old daughter Erin died suddenly in 1990.
She had a fever on a Friday morning. My wife, Trici and I drove her to the hospital on Saturday morning and were sent home several hours later with the suggestion that the abdominal pain Erin was complaining of was simply a “kink” in her intestine. “Give her some Pedialyte,” they told us.
Sunday morning Erin seemed to be getting better. I felt comfortable leaving our Oak Park, IL home that morning for a weeklong conference being held at the Chicago Hilton and Towers. Sunday night was bad. First thing Monday morning, Trici drove Erin to the ER – again. When I got the call, I dropped everything and joined them.
Many questions. Many tests. No answers.
Acknowledging that this case was too complicated for the community hospital to handle, late Tuesday afternoon, we were sent by ambulance (I rode in the back sitting next to Erin) to one of Chicago's major medical centers. With sirens blaring and lights flashing, we traveled down the Eisenhower Expressway to Rush-Pres.-St. Luke's. After a long, painful, sleepless night, we were told (finally) early Wednesday morning that we had a diagnosis – Hemolytic Uremic Syndrome.
“We caught it early. We know how to treat it. She will be fine,” we were told. Early that evening, at 5:10 pm on Wednesday, July 18, 1990, Erin Brennan Zuba died. The world, as we had known it, shattered.
Eight years later, a few days after Christmas, I uncharacteristically stayed up late to read a book, Where The Heart Is, about a girl who has a baby in a Wal-Mart store. As best I can recall, it was my first “Oprah Bool Club picks.” Trici, a night owl, finished watching an old movie in the living room. She came into the bedroom around midnight and started to read a magazine, “Eating Well.” I still have it. Within minutes she turned to me and asked me to take her pulse. “Is my heart racing?” “No, it doesn’t seem to be.” “My chest hurts. The pain is unbearable. Call 911.”
Another ambulance ride. A different hospital. Many questions. Many tests. No answers.
52 hours after we entered that Emergency Room at Oak Park Hospital, Patricia Brennan Zuba was dead. On New Year's Day 1999. She was 43. How do I tell our two young sons ~ Rory was 7 and Sean was 3 ~ that mommy died?
The next day, January 2nd would have been our daughter’s 10th birthday. Despite my protests, the last night of Trici’s Visitation, while standing in the receiving line, her doctor told me that Trici had a hereditary blood disorder. I would need to be tested. Our two sons would need to be tested. Her sisters should be tested. Everyone was at risk. Results from a test conducted just hours before she died, concluded that Trici had a Protein C Deficiency. It’s my understanding that the Protein C Deficiency made it difficult for her body to break down blood clots. Clots collected in her lungs, depriving her heart of blood. As a result, her heart was damaged over a period of time. Had we known of the hereditary blood disorder, she would have been on medication and most probably still alive.
Just two short days after my 13-year old son Rory started 7th grade, at the very end of an otherwise ordinary August 2004 night, I woke to the sounds of strange noises. Drawn to Rory’s bedroom, it wasn’t clear to me if he was having a seizure or a stroke.
A call to 911.
Yet another ambulance ride. Doctors in Rockford and Chicago misdiagnosed him for two months. On Tuesday, November 9, 2004 – one week after the Presidential Election – I was told Rory had brain cancer. After his biopsy-turned-major-brain-surgery, I was told there was no guarantee that my most amazing son would ever talk again, that he’d ever walk again, that he’d ever have the use of the right side of his body again…in fact, I was told there was no guarantee that he would survive the next 48 hours…which would be critical. A few days later the oncologist told me there was no cure. She offered, what I considered the most barbaric treatment, to possibly prolong his life for a few months. I declined and sought alternative treatments.
Rory Brennan Zuba died three months later, on Tuesday morning, February 22, 2005.
After my daughter Erin died I was broken, shattered, lost, confused, angry, shaken, sad and many, many other things for many, many years. My foundation was destroyed. Nothing I had held to be true stood firm. I had no way of knowing if there was a light at the end of the tunnel. It took me a long, long time to discover that yes, indeed, there was a light.
When my wife Trici died eight years later, I knew I would survive. I had done this before. I knew there was a light at the end of the tunnel. This time, the tunnel had parts that seemed familiar. This time, the tunnel also had parts that were new and different, oftentimes overwhelming, frightening and confusing. This time, my 3-year-old son Sean, and my 7-year-old son Rory were staring at me. They were looking at me to create a new life for the three of us.
And when Rory died in 2004, I knew I would survive. At first, I wasn’t sure I wanted to. What was the point? But in time, I realized that not only was there light at the end of the tunnel, but this time the tunnel was lit. This time I was able to observe my journey... not simply feel victim to it. This time I learned so much. About grief. About mourning. About the gifts of denial. This time I realized that I could consciously participate in my own transformation.
This time I gathered tools to make the journey easier – for myself. I look forward to sharing those tools with you and the people you love that are learning to live with the death of someone you love.