When I Blinked
On a chilly winter day in 2017, I sat on the side of my hospital bed, legs dangling, coloring on my phone, eagerly waiting for discharge after a five-day asthma tune-up. But in the short time between my doctor signing off and my nurse bringing the discharge papers, my knees suddenly felt as if someone was using a chisel on the bone. Tears streamed down my face as I paged the doctor. He suspected steroid-induced myopathy, a side effect from high-dose steroids, and reassured me it should resolve in a few weeks. Discharge went ahead, and I drove myself home in 7/10 pain, determined to push through.
Over the next few weeks, I focused on getting life back to normal. I was working full-time in HOA management, a job I adored, with a supervisor and coworkers who were incredibly compassionate and kind. As a single mom to my vibrant 2-year-old miracle daughter, she was my biggest commitment. Our home was also buzzing with two high school exchange students, Foann from Thailand and Miku from Japan! Life was busy, beautiful, and full of moments to remember: Bible readings in three languages, game nights, cooking Thai and Japanese dinners, my first purchase of a rice cooker (and boy, did it get mileage!), their first Thanksgiving turkey, and every Christmas tradition I could manage to squeeze into December. Life wasn’t easy, but it was so, so full of love and hope.
Unfortunately, my knee pain didn’t go away. On January 3rd, I went to work, sitting at my desk for what would be the last time. That day, I left early to be admitted to the hospital once again. Later in the month, my boss visited me, and tearfully, I handed over my resignation along with my work laptop, keys, and documents. It was the death of my career.
Finally, during yet another hospital stay over my February birthday, I received a life-altering diagnosis: Bilateral Avascular Necrosis (AVN) of the knees. I’ll never forget the look on my doctor’s face as he entered my room, somber and quiet. My mom stood beside me, squeezing my shoulders, both of us sensing that something atomic was coming. He explained that AVN was rare, affecting only a tiny fraction of the U.S. population - 0.006% of new cases reported annually. He told me that life as I knew it was over, and my world would change drastically as the disease progressed, leaving me disabled. He promised that an orthopedic consult would follow shortly, then touched my shoulder and whispered, “I’m so sorry, Sarah-Marie.” After he left, the floodgates opened. My mom called my dad, a critical care nurse in the same hospital, and an hour later, he walked in. Mom and Dad bent over my bed, and we hugged, cried, prayed, and began to process the reality that life had changed in the blink of an eye.
Orthopedics recommended that I start using a wheelchair as much as possible to delay joint collapse. My parents moved into my home to help me and my daughter, as we made modifications to our homes and vehicles. In early 2018, I underwent a bilateral knee subchondroplasty. But it failed. The recovery from this surgery was hellish. My pain was through the roof; I would scream for hours, my parents at my side with tears streaming down their faces, unable to help. In July, I was back in the operating room for a core decompression. That failed, too. At this point, my local ortho team advised that we go to Mayo Clinic in Rochester.
That summer, we said goodbye to Foann and Miku. It was bittersweet; you know an exchange year has a time limit, but it flew by, especially with so much happening. Both girls had been given the option to stay with another family after my health declined. Miku moved one city over, while Foann opted to stay in our home. In the end, they both got a real taste of American family life; beyond the “High School Musical” version they might have imagined. We all cared for each other deeply, especially amid the medical chaos. Both girls spent evenings visiting me at the hospital where balloon keep-away and dance-offs were common!
In late summer 2018, we started the long process of getting into Mayo Clinic. Requesting an appointment at the top hospital in the U.S. isn’t easy, but by God’s grace, and with the help of some very kind intake coordinators, I was accepted for a comprehensive evaluation. Before my appointment, though, I had a severe asthma attack that landed me on a ventilator for three days; causing me not only to miss my Mayo appointment but also my baby brother’s October wedding. I watched the wedding on FaceTime, tears falling fast as my daughter walked down the aisle with her aunt, and then the camera panned to my brother as his bride approached. About four hours later, there was a knock on my ICU room door, and in walked my handsome brother in a full tux, holding the hand of his bride in full bridal regalia! There were few dry eyes in the ICU as nurses came to congratulate the couple, who had given me the first hours of their life as husband and wife! My eyes fill with tears even now as I transport myself back to that small room filled with joyous grief.
After being discharged and settling back home, we rescheduled Mayo for December. Merry Christmas to all, and to all, a good MRI!
On December 8th, we packed up five people, luggage, and a heap of hope and prayer, then started our 15-hour drive from Alabama to Minnesota. My father and sister took turns driving through the night. My sweet 3-year-old slept peacefully beside me, excitedly dreaming about the snow she’d been promised.
Mayo Clinic is truly the most amazing medical facility - a place like no other. Over 15 days, I met with specialists in pulmonology, radiology, orthopedics, endocrinology, vascular medicine, and more. Each test brought us closer to answers. The pulmonologists made minimal adjustments to my asthma care, noting that my asthma was one of the most severe cases they had seen, and praised my local physician. Orthopedics recommended another core decompression surgery with a bone marrow transplant for my knees and awarded me a new AVN diagnosis in both hips. To have the bone marrow surgery, I would need to be on low-dose steroids for 12 weeks - a goal we’ve yet to achieve. I also was awarded a new diagnosis from Vascular Medicine: May-Thurner Syndrome (MTS). They recommended an angioplasty and stenting procedure, pointing out that while MTS is rare, an estimated 20% of Americans have some level of iliac vein compression.
We returned home on December 22, and my daughter and I moved directly into my parents’ house. They’d converted the back porch into a cozy little suite, lovingly named “The Tiny House.”
The waves kept coming, hitting hard, and dragging us under. Yet, my God was faithful.
I spent New Year's in the hospital with post-surgical complications from my MTS procedure. What a way to start 2019!
Over the next twelve months, I was hospitalized over 15 times in the MICU for acute respiratory failure, with each stay lasting at least six days. My sweet daughter, now four, grew up visiting me daily, as comfortable in my hospital room as at home. She’d zip around riding on IV poles, tune out the loudspeaker codes, push my wheelchair, and “help” me with my walker. Nurses, respiratory therapists (RT), physical therapists (PT), occupational therapists (OT), and doctors became her everyday people. Her favorite part? Getting ice cream or Jell-O from the nurses, who felt like family. (They often texted my dad for updates when I wasn’t even in the hospital.) That incredible team at GrandView Medical Center kept me alive through respiratory failure, Klebsiella pneumonia, severe asthma exacerbations, and even codes.
Each hospital stay meant heavy IV steroids, which made my AVN pain unbearable. Bone pain is its own kind of agony – intense and relentless. My parents stood by me, changing ice packs, keeping the lights low, and playing soft instrumental hymns as I moaned in pain. My little daughter would climb into my chair, snuggle up to me, and rub my face, praying for her mommy, quoting Bible verses, and singing hymns. Those were hellish days, for me and everyone around me.
As 2020 began, my pulmonary team warned that my lungs might not survive many more severe attacks. One moment I’ll never forget is my doctor looking my dad in the eye and saying, “Jim, I don’t know if we can keep her alive if you stay here. Her allergic asthma will kill her. Maybe not in the next attack, but she can’t withstand many more. You need to move her to the ocean or desert.”
Leaving Birmingham wasn’t something I could wrap my mind around. This was home. My family had built a custom log house on our 40-acre homestead. Our lives and my father’s career were there. But within days, my parents decided to move us to the Florida Panhandle for a one-year medical trial. With little hesitation, they packed up me and my daughter, leaving behind the life they’d spent over 30 years building. Words can’t express my gratitude for their sacrifice. They indeed saved my life.
A few weeks after our move to Florida, COVID-19 hit our world. My pulmonologist urged me to quarantine strictly, warning that COVID would likely kill me. My dad, an RN working in a local hospital, came home through the garage, wiped down with antibacterial wipes, showered immediately, and washed his scrubs separately. Still, despite all our efforts, I contracted COVID on January 13, 2021.
My CaringBridge, updated by my parents, tells the story.
January 13, 2021: SM was transferred by air to Pensacola ED. Now on the vent, moving to ICU. COVID positive. And we trust Him… even now.
January 14, 2021: Jimmie had to leave the ICU. He came home, broken, grieving, aching to stay with her. Tomorrow he’ll be allowed back in to sit outside her ICU room, looking in through the glass. We know nothing about her prognosis or treatment. Pleading… waiting… trusting… “Lord, to whom shall we go? You have the words of eternal life.”
January 15, 2021: No changes overnight. Vent settings are the same. She received convalescent plasma antibodies but was denied Remdesivir for reasons unknown. Feeling overwhelmed and anxious. “I will lift up my eyes to the hills. Where does my help come from? My help comes from the Lord, maker of heaven and earth.”
January 16, 2021: Today, they’ll attempt to reduce her sedation and let her breathe on her own. Yesterday’s attempt wasn’t successful.
During those days on the ventilator, I was alert off and on. I remember the nurse waking me and giving me a marker board to write on. I scribbled, “Covid?” She nodded and then handed me an artificial rose stem. “This is from Nozomi-Dawn. I need you to fight this for her. It’s hard, I know, but I need you not to give up.” Every time I drifted off to sleep, I was trapped in the same nightmare: I was watching my brother snowboard down a mountain when an avalanche started. Soon, Ben would be buried by the snow and assumed dead. More than once, I woke up and wrote “Ben OK?” on my board. The nurse assured me she would ask my parents, but she felt certain he was fine.
During an attempt to reduce ventilator support, I struggled to breathe. I turned to my nurse with panic-filled eyes. She took my hand and held up the rose, sternly yet empathetically saying, “Breathe, Sarah-Marie. Fight it. You can do it. Stay alive for Nozomi-Dawn. Fight for her.”
January 17, 2021: Good news! Sarah is completely extubated‼️ Her nurse just called us, and she’s asking for her daddy! He’s on his way right now. Oh Lord, there are no words big enough to thank You!
My ICU recovery was difficult. Dad contracted COVID and had to leave me alone. I begged him to stay, breaking his heart as he physically crumbled. He barely managed to drive home before collapsing.
Back in the ICU, I was becoming known as the "crazy patient." I was suffering from hallucinations of being buried alive in a casket full of biting ants. I knew it wasn’t real, yet it felt and looked so legitimate. I rocked back and forth, moaning and crying like a child, desperately trying to regain control. Finally, the staff sedated me again as I continued to recover. Once alert, I was transferred from the ICU to the COVID Step-Down Unit. My mind slowly recovered as my body gained strength.
From there, my only goal was to get home for my daughter’s birthday on January 23rd. It seemed like a long shot, but we prayed and hoped. After all, I was still here – I was alive. Every medical professional who saw me said I shouldn’t be. “You were too critical at admission, with too many comorbidities. You’re truly a miracle.” This was repeated to me over and over during the next months of my recovery.
On January 22nd at 8:00 p.m., my doctor came by to say goodnight, and I begged him, “Please discharge me tonight! I need to be home for my daughter’s birthday tomorrow. My dad’s an RN; he’ll handle any home care orders. Please!” With a compassionately weary look, he explained he couldn’t do the discharge himself as he was needed in the ICU but would ask his Nurse Practitioner to stay late to complete the paperwork. I don’t remember her name, but I’ll forever be grateful to her for recognizing a soul in need of a reprieve.
At 11:30 p.m., Dad posted: COVID recovery patient home! Rolling Sarah-Marie across the threshold is a clinical-spiritual miracle. Her story has yet another chapter. Thank you for your prayers across the state, nation, and world.
No words can capture my joy when Dad wheeled me inside and my daughter threw her arms around me. “You’re home, Mommy! Just in time for my birthday! Jesus did it!” That January 23rd, we celebrated two lives - my daughter’s birthday and my miracle of life; complete with a Pinterest doughnut cake fail, lots of hugs, helium-defunct balloons, gentle laughter, and deep gratitude. To this day, it’s her best birthday party ever.
Recovery was tough. I relied heavily on oxygen therapy, IV steroids, and BiPAP, as my lungs were still weak. My father later shared, “Sarah-Marie and I had a long talk about her near-death experience. I confessed the agonizing prayer I made while she was on the ventilator - whether to ask God to bring her back to this daily struggle or release her to eternity. At one point, I couldn’t even pray; I was spiritually overwhelmed. Yet, we both agreed that another chapter must be written about her journey.”
About 45 days later, we returned to Birmingham for a follow-up with my pulmonologist. During my appointment, I started coughing and struggling to breathe. Dr. B called the ER, and an ambulance rushed to the Physician’s Office Building (POB). My last memory was of a paramedic straddling my gurney, starting manual ventilation. I awoke in the ICU the next day, on a ventilator once again.
March 8, 2021: Sarah-Marie’s life is hanging in the balance. Please pray.
March 9, 2021: Sarah is off the vent, now breathing with BiPAP and doing well. Yesterday’s attack reminded us again of life’s fragility. In that hour of uncertainty, I gave her to the Lord, pleading for the strength to trust Him fully.
March 12, 2021: The Lord has granted Sarah another chapter in her journey of faith; a journey that began when she was 12 years old and prayed for “the faith of Abraham.” We put our faith in Jesus and ask for His grace. Selah.
Later that month, we made the permanent move to the Gulf of Mexico. Our year in Florida was medically eventful but with fewer hospital stays due to acute respiratory failure than the previous year in Birmingham. Splashing in the Gulf of Mexico, baking in the summer heat, tolerating the constant clammy humidity, savoring the tropical winters, batting down the hatches for hurricanes, and treasuring the most beautiful sunsets… Baldwin County, Alabama would now be home.
When we moved to Florida, my Mayo care transferred from Rochester to Jacksonville. Unfortunately, it was now too late for a bone marrow procedure, and joint replacements were needed in both knees and both hips. But before that, seven spinal compression fractures were discovered, and orthopedics deferred to neurosurgery until it was safe to proceed.
In July 2021, I underwent my first spinal fusion surgery from T10 to L2 (about five inches) at Mayo Clinic Jacksonville. It was the most painful and difficult surgery I’d faced to date. The recovery was gruesome and involved many hours with my head in a pillow, trying to stifle my screams of pain. Just a week before removing my brace 90 days post-op, I was sitting in my lift chair riding up when sharp, gut-wrenching pain literally took my breath away. Dad and I knew something was terribly wrong. I was rushed to the ER with neck and spine stabilization, where imaging revealed additional fractures above my new spinal hardware. Mayo advised an immediate transfer back to Jacksonville. I was soon scheduled for another fusion. This surgery lasted 16 hours with over 25 screws, two cages, and double rods spanning nearly half of my vertebral column from T3 to L2. This surgery restarted the three-month recovery clock, and the pain was again relentless. For months, I continued to scream into pillows, trying to find any calm and not scare my tender daughter. When I was finally released from my affectionately named back brace, Murtle, strengthening my weak back muscles was a slow, torturous process - especially with my already deteriorating hips and knees.
I rang in 2022, healing from two spinal surgeries and preparing for four joint replacements. But first, I had more hurdles to clear.
In June 2022, I was hospitalized for an asthma tune-up and developed kidney stones, which led to a severe UTI and then sepsis. I spent over a month in the hospital, fighting a blood infection that caused delirium, confusion, and terrifying hallucinations. This was my most brutal spiritual struggle yet. I could barely pray, and my usual coping mechanism - quoting Scripture - failed. I couldn’t recall basic verses like the Lord’s Prayer or any of the 25+ Psalms I’d committed to memory. My prayers felt like they bounced off the ceiling. For the first time, I felt abandoned by my God. My hallucinations were vivid; I saw nurses as soldiers, children hiding under my bed, and doctors as the enemy. I didn’t even recognize Dad at times. More comically, I once tried drinking through my nose, convinced it was the correct way. Eventually, the medical team identified the bacteria, and after intense IV antibiotics, I slowly regained clarity. Physically, I was the weakest I’d ever been, unable to sit up, stand, or even move in bed. I was discharged with home health, a hospital bed, and daily physical therapy; I had to rely on my parents for everything. Feeding. Toileting. Bathing. Medication. My daughter was also there to help Mommy - covering me up or moving a pillow to be more comfortable. During these recovery days in our family’s living room, I continued to learn the gracious art of accepting care. My parents provided that care with dignity, always acknowledging my humanity with gentleness. It took months to rebuild my strength and even longer to feel God’s presence and trust Him yet again.
In October, another hospital stay came after a UTI led to a second blood infection. Thankfully, the doctors quickly identified the issue, and I was treated before the severe sepsis symptoms began. The Infectious Disease team suspected my medport, which was removed and reimplanted five days later by my vascular surgeon in Birmingham.
Though we live in the Gulf now, I’m grateful for our trusted medical network in Birmingham and Jacksonville. While we’ve added a few local doctors, we still travel regularly to see the core of my medical team, who have become like extended family.
Finally, after years of setbacks, I was stable enough for joint replacements to alleviate the intense bone pain of the past five years. On January 22, 2023, I received a new right hip at Mayo Clinic Jacksonville. This recovery was easier than the spinal surgeries. Five months later, I returned for my left knee replacement. It was tougher than the hip but nowhere near the level of spinal neurosurgery pain. Dad and I handled PT ourselves, and I found his rehab expertise invaluable. After four months of relentless work, I started to think surgery may have been a good idea… maybe.
You’d think by now I’d have learned to stop expecting things to stay still, right? But life kept changing in the blink of an eye. And the next challenge was just around the corner, bringing another rare medical twist.
In December 2023, I developed a severe lung infection - not unusual for me. Under my physician’s care, we treated it at home with IV steroids and antibiotics, but after three weeks, it wasn’t improving as expected. Then I began experiencing strange neurological symptoms. My core muscles seemed to have “shut down,” and I could no longer sit up straight. My left leg was paralyzed. I couldn’t move it, no matter how hard I tried. I even failed the touch-your-nose field sobriety test my dad administered! Something was seriously wrong. We suspected a spinal issue like a loose screw causing the neurological deficits.
We went to a local primary clinic, where a quick workup sent us to the ER for imaging. They started with a CT scan to rule out a stroke. Almost immediately, they wheeled me back for a brain MRI. Confused, I asked if they’d meant a spinal MRI. The tech checked the orders and confirmed, “No, they want follow-up on the brain CT.” Shrugging, I went along. By this point in my medical journey, few diagnostic tests were new to me. One more brain MRI didn’t faze me. Just put a washcloth over my eyes before you put on my helmet, and I’ll hang out in the tube as long as you want, turning the MRI sounds into the percussion section for songs I sang in my mind. After the 45-minute scan, I returned to the ER bay, where Dad was waiting. Before I was even settled, a trio of doctors entered: the attending physician, a senior resident, and a first-year resident. White coats filled my room.
“Ms. Henson,” the attending said, “you have either a brain tumor or a brain abscess and need neurosurgery immediately. We aren’t equipped for this type of surgery here, so we’ll be life-flighting you to Pensacola as soon as the rain lets up.”
My mind reeled. Wait? What? A problem with my brain? That’s new. Lungs, spine, kidneys, bones, bronchial tree. Sure. But my brain? A tumor? What’s an abscess anyway? But all I managed to squeak was, “Wait, I have something wrong with my brain?” The attending solemnly responded, “Yes, ma’am. You need emergency brain surgery in the next 12 hours. We’re arranging an air ambulance and will update you on its status.”
As fast as they arrived, the trio left. Dad and I exchanged dumbfounded glances. Then reality hit us both, and silent tears slid down my face. Dad pulled me into his arms, praying over me as I cried. My heart screamed, “God, Lovie has been through so much. She can’t take any more!” But then, by the mercy of God, my resolve to fight began to grow. I dried my tears, looked up at my father, companion, caregiver, rock… and found my fight in his eyes.
It was a whirl of preparation as we got ready for the transfer. We knew nothing of the hospital or the neurosurgeon I would soon be trusting to cut into my brain.
I was directly admitted into the NICU and prepped for surgery the following day, Saturday, February 10th - just three days before my 39th birthday. My surgeon met with me and went over all the possible risks - including a high risk of losing my personality or death. This would be a difficult procedure, and they wouldn’t know the surgical plan until he could visualize the area in question.
With the Lord’s hand on my life once again, I came through the surgery with flying colors. When I woke up, however, I was still paralyzed on the left side. The surgeon felt confident I would regain some of my muscle memory but didn’t know to what extent. After celebrating my 39th birthday in the neuro step-down unit with a piece of cake the nurses snagged from the kitchen, I was transferred to inpatient physical rehab. The hard work had just begun. I had the absolute best physical and occupational therapists! They believed in me when I didn’t believe in myself. Dad was there every day to go to my four hours of therapy. My mom and daughter visited a couple of times a week. But the inevitable goodbye required at the end of each visit was almost more than Lovie could handle repeatedly.
After several weeks, we finally received the biopsy results from surgery. I had a rare infection - affecting approximately 0.0003% of the US population. The CDC cautioned us, “More than 8 in 10 of patients die after developing nocardiosis of the brain or spinal cord. The risk for death is much higher for patients with very weak immune systems.”
After three weeks of physical, occupational, and speech therapy, Nozomi-Dawn and I rang the completion bell as the entire gym applauded! Home. After almost one month in the hospital, I was going home to recover.
It was amazing to be home, but that joy was short-lived. Less than a week later, I began experiencing numbness on my left side again. An MRI showed the abscess was increasing in size. Another craniotomy was scheduled, and the process began again. ICU nightmares, neuro step-down, three weeks of rehab, and finally, discharge. This time, I was home to stay for a bit! We continue to monitor my Nocardiosis with MRIs every three months. I’m under the care of Mayo Clinic’s Infectious Disease team, receiving lifelong antibiotic treatment because of the almost certain fatality if the infection spreads.
About three months after my return home, my left knee (replaced a year before) began to swell and hurt. Two knee aspirations showed turbid fluid with high white blood cell counts. Thanks to my robust antibiotic regimen, the Nocardia infection was suppressed, but two orthopedic surgeons recommended a revision. In October 2024, I returned to Mayo Clinic Jacksonville for a knee revision. Dr. S and her team skillfully removed the titanium joint and implanted an antibiotic-infused “cast.” This will remain for a minimum of one year while we continue treatment for the suspected Nocardia and confirmed fungal infection. This means daily IV infusions for several months, multiple oral therapies, and only being able to walk short distances with a walker using “toe-touch for balance” on my left side.
While I don’t know when or what the next “blink beat” will be in my life, this soul has learned to fight through the strength of my Savior. While covered in scars and proof of battles fought, I persevere through the blood of my Savior Jesus Christ in this dōlightful life!