One of the most formative events of my life happened a year before I was born. When she was about six weeks old, my sister Katie—my parents’ firstborn, the answer to prayer after years of infertility—was found to have a ventricular septal defect (or as we always called it, “a hole in her heart”). She was sickly, losing weight, sometimes looked blue. Doctors couldn’t figure out the problem. Finally, a new pediatrician, Dr. Tan—who was our family pediatrician from that day forward—heard the heart murmur and urged them to get to Children’s Hospital right away.
My own name tells part of the story of that chapter in our lives. If you follow me on Twitter, you might have noticed that my handle is my initials and last name: @mfjlewis. The “FJ” stands for Francis James—the first names of the cardiologist and heart surgeon (Frank and Jim) who saved Katie’s life. Whatever anxiety or struggle or trauma my parents went through in those early days wasn’t something that I ever had any awareness of or even thought about until I had children of my own. Thinking back, I can’t imagine what it must have been for them.
Katie had open heart surgery and her odds of making it weren’t very high, but she pulled through and by the time I came around the following year, she was a healthy, happy little girl. Later there was another brother and another sister, with Katie the big sister—and she let us know it.
To me, Katie was the loud, annoying, and often embarrassing older sister who I loved dearly but just as often argued with, who was always yelling at me and calling me things like “moose breath” and “moose head” and “moose face” and other names, usually with the word “moose” in them. By the time she reached school age, my parents realized that while she was high-functioning, there were some serious intellectual disabilities. Whether it was brain damage due to a side effect of the surgery and hospitalization or due to other factors (including a baby formula that was later recalled for lack of sodium), we’ll never know for certain. She had an amazing memory (she would memorize the entire TV Guide and could instantly tell you what was on any channel at any time, any day of the week), but the way she processed information was very childlike, and very innocent.
She was the exact same person from around ten years old until 42. She loved her favorite TV shows, The Brady Bunch, The Waltons, and General Hospital. She enjoyed singing (she especially loved the folk group at Church, and later even joined one), and she would make up impromptu songs on the piano that she didn’t really know how to play. She’d bicker and tattle whenever she didn’t get her way, and she always called dibs on the junk food. If there was a baby within range, it would soon be on her hip. If there was a three-year-old nearby, she’d be ordering them around, trying to get the kid to listen to reason. Once my younger sister and I started having kids, she took enormous pride in being their Aunt Kate. She spoiled them and coddled them and got them hooked on The Brady Bunch and General Hospital. They loved her right back.
As my brother, younger sister, and I gathered around her bedside yesterday—we noted how it was the last time all four of us would ever be together in the same room. It was, in a way, the culmination of our shared childhood, of the ups and downs of young adulthood, of taking on responsibilities and hard decisions that we thought we wouldn’t have to worry about for decades.
As I write this, I realize that today (May 21) would have been my dad’s 73rd birthday. Yesterday he and Mom welcomed their beloved firstborn daughter into heaven. No portrait of my dad’s life is complete unless it is filled with stories about how he doted on Kate, how he laid down his life every day for her to make sure his baby girl with heart problems and special needs was always safe and secure and surrounded by those who loved her.
The past five years have been one loss after another. First, Dad in 2016, who went from “never sick a day in his life” to dead at 68 after a short battle with renal cell carcinoma. Then Mom in 2019, who never smoked a cigarette in her life—dead, also at 68, from interstitial lung disease. Yesterday brought the biggest shock of all, when Katie died at 42 because her weak heart just couldn’t keep working.
Half my family of origin, dead in five years.
Every family faces loss—the sting of death—over time. But it never entered my imagination that the last five years would be like this. This absolutely was not on my radar 6 years ago. I was 23 when the first of my four grandparents died. Because they all lived into their 80s and 90s, I got to know all of them as an adult. My wife Stephanie had the opportunity to meet them all and even grow close to my paternal grandmother, who died eight years ago at 90. My boys also got to know her and even have memories of her.
This was the natural order of things. Tragedies—car accidents, deadly cancer, dying young—were for other families. Certainly these were people we felt compassion for, and of course we reached out to them in times of need. But those were other people. We were the kind of family where the kids joked about someday moving our parents into an old folks’ home or having to take dad’s car keys away when he was 95.
I was talking to a friend recently about her sister who is the same age as mine, who also has cognitive disabilities and a heart problem. Her sister still lives with her parents—just as I’d always imagined Katie always would. I thought figuring out what to do about Katie was something I’d have to do when I was older, wiser, more prepared. Then suddenly, within a little over three years, both of my parents were dead. When my mom got sick, the three younger siblings had a meeting to decide what to do with the house and with Katie when Mom died. We worked out a rough plan to ensure that her financial needs would be met, she’d have a roof over her head, food to eat, and she would be close to all of us and see us regularly.
Mom died at the end of 2019, and then came Covid. We decided to put the sale of the house—our childhood home, the only house Katie knew—on hold for a little while. She kept on living there (it’s three miles away from where I live). Earlier this year, we made the decision to finally sell the house, and Katie was going to move in with us on June 1. That day never came. The last two weeks have been surreal. She went to the hospital. She started getting worse. Then we thought she was getting better. Then things got really bad. Finally, on Thursday, the heart that Doctors Frank and Jim patched up on a six-week-old baby girl in 1978 finally stopped beating.
The hospital rules stipulated that one designated visitor could see her between 1-4 in the afternoon each day for a period of 7 days. My aunt was designated for the first week. My younger sister got the second. The third week would have been mine, but we never got that far. That morning, they called us to come to the hospital. She wasn’t conscious. She had all kinds of tubes in her, pumping who knows what into her to keep her alive. We said our goodbyes.
Within three hours, her earthly life ended. Her three younger siblings prayed the Rosary around her as she passed.
Update: Kate’s obituary is posted.
Featured image: All 4 siblings on my wedding day, 2005. Other pictures, from top to bottom: The four of us at Christmas 1988; Aunt Kate and baby Lucy, 2018; Dad holding Kate and me, late 1979; Family photo, circa 2003.