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The complex, waist-high machine standing on the floor gasped in a breath of air, then hissed out another. It repeated its breath, then did it again; at a perfect rate, the machine never ceased its methodical pace. The tubes connected to it slumped to the floor then led up the hospital bed and down her throat into her lungs. As the machine breathed, it forced air into her lungs and then forced air out again. It was the only thing keeping her alive.
My parents insisted on us eating meals together. Being a family of eight made this both difficult and easy; though there were more people to organize, we were all involved in each meal, so there were plenty of hands to both cook and clean up. During lunches while my dad was at work, my five siblings and I would eat with our mom. She would say silly things to make us laugh, and it always ended with her making weird and goofy faces at us. “Now kids,” she’d always say, “don’t tell Dad about this when he gets home.” I never understood why, but being the faithful child I was, I never told him.
The once-stark hospital room was covered with pictures of the family, drawings my 3-year-old nephew created, bouquets of flowers and get-well cards. Lots and lots of get-well cards. As beautiful as the decorations and flowers were, they could not remove the bleak walls, colorless floor, the smell of hospital, the multiple IV bags or the relentless sound of machines. The machines and monitors next to the bed had countless numbers and unintelligible information, but there were two important things I understood: the heartbeat and the breath rate. The never-changing breath rate.
We didn’t watch much TV growing up because my parents didn’t want us wasting our time on things that didn’t last. Instead, we played games. Even through high school and college, I’d walk downstairs while Mom was practicing piano music for church and say, “Hey Mom, want to play a game of cards?” We’d make some flavored instant coffee, sit down on the living room floor and start shuffling. I always had my best heart-to-heart conversations with Mom over a game of cards.
The small room only had one chair in it, and we always made sure Dad sat in it. The only other place to sit was either on an arm of the chair or on the bed itself. So we usually stood. There was always at least one doctor on duty, but for the most part they all said the same thing: “I don’t see any sign of improvement.” But the breathing machine kept gasping and hissing.
One of the things my mom and I always did together was bake. She was an expert in the kitchen, so homemade French bread or Mennonite Zwiebach rolls were common to have on hand. I never became proficient at baking yeast breads, but Mom and I were unstoppable when it came to cookies or quick breads like pumpkin bread, banana bread and orange bread. After she first got sick, the kitchen no longer chronically smelled like freshly baked bread.
The nice thing about the cramped hospital room was no roommates. No other families, no nurses attending to someone else and no inconsiderate chatterboxes. Or, even worse, no angry, bitter souls who resented being in a hospital. My family was free to talk openly about the incomprehensible situation we were in, pray, sing or just be quiet. We were free to come and go as we pleased without fear of bothering any other patients. And since every visitor had to personally be let into the ICU, it was okay to leave the room in tears since it was only staff to see you – and since it was the ICU, they were used to tears.
When I was two years old I would limp every time I wore shoes; apparently it got so bad my parents decided to take me to the doctor for tests. Mom told me they ran numerous tests on me, including a blood test for juvenile rheumatoid arthritis “just in case.” The part I didn’t know was, after they diagnosed me with JRA, she was driving home with me in the car seat in the back, and she was dumbfounded, praying, “God, please, no.” Every few months for the next 16 years, she took me to every doctor appointment, every physical therapy session, every test, every medical procedure. Mom was my caretaker, and I didn’t even realize it.
The doctor came in and confirmed our biggest fear: she wasn’t going to get better. Even with the breathing tubes, her body had gone into shock and was shutting down. There was nothing left to do and no way we could save her. Most of my family filled up the hospital room, and my pastors came and stood with us while Dad sat in the chair. And we sang. There was no longer the gasping and hissing of the machine. There was only her gasping and our singing.
Mom was diagnosed with polymyositis when I was just 12. It’s a rare autoimmune disease characterized by the immune system trying to kill off muscles. After a dramatic rollercoaster battle with it for nine years, it finally subdued enough for her to do a fraction of what she did in the past. The kitchen smelled like bread more often, the piano sang more frequently, and though her weak legs could sometimes do no more than a shuffle, she smiled more consistently. The one thing the doctors didn’t foresee was the severe damage Mom already had in her lungs.
As her body lurched trying to gasp in air, and her unconscious mouth opened to gain as much as possible, we sang. “It Is Well With My Soul” and “Revelation Song” were two of the many hymns and worship songs we sang while my mother tried to breathe. For three hours we sat waiting for her body to let go, and for three hours we sang, prayed, sobbed, held each other, sang and prayed. We didn’t have any clue as to why God was taking her from us, but we trusted in His sovereign plan. And we sang. “No pang shall be mine…” Her body jolted trying to breathe. “…for in death as in life…” Her mouth gasped for air. “…Thou wilt whisper Thy peace to my soul…” Her face tensed with unfathomable struggle. “…It is well, it is well with my soul.”[1]
[1] “It Is Well With My Soul.” Horatio G. Spafford. 1873. Public Domain.