‘It was time to break his little heart. ‘Your birthday will be different this year.’: COVID long hauler shares bright spots of journey, ‘Love shows up’

‘It was time to break his little heart. ‘Your birthday will be different this year.’: COVID long hauler shares bright spots of journey, ‘Love shows up’

“Five months. This is how long it’s been since the virus that has upended our world and broken our hearts began its unwelcome assault on my body. What I thought was just a terrible hormonal headache quickly turned into ear pain and sore throat. A few days later, on Thanksgiving, when my entire upper body began to burn and feel as though it was on fire, and intense lightheadedness took over during simple tasks, I knew–it was COVID.

With my husband also in trenches of the illness, our little family struggled through Thanksgiving alone. Trying to maintain some small level of normalcy for the sake of our four young children, one of whom was also very sick, we tried our best to seek comfort by keeping some of our traditions. While setting the table I struggled to breathe, and I felt my heart rate skyrocket for the first time for no reason at all. It was in this moment I remember the fear settling deep into my soul for the first time. I remember sitting down, right there on the cold kitchen floor, to catch my breath and gather my emotions.

As the days passed, my husband slowly recovered, as did our daughter. But as days turned into weeks in early December, I did not. Each and every morning, I’d wake up and think today will be the day. And each and every day, I was painfully wrong. Our son Jack’s seventh birthday came soon after. One cold December night, I kneeled next to him while he took a bath–fever raging, ears aching, head pounding, arms on fire–and I knew it was time to break his little heart, again. With a lump in my throat and tears in my eyes, I explained his birthday would have to be different this year. Even different than the COVID-safe ways we’d hoped to celebrate.

I looked down at my sweet blonde baby boy and explained we wouldn’t see our family at all, he wouldn’t get to play outdoors with any friends, and I wouldn’t be able to take him on our beloved Birthday Date. And in this moment, as he stared up at me with those big, round, blue eyes–a new level of fury arose in my soul. Of course, fury at the countless ways COVID had been a thief to everyone during all those painful months… stealing loved ones, time, memories, and milestones from all of us–but also, a newer sense of fury. Fury as it lurked within my body, at how it tried desperately to steal my joy. To steal our joy. And in this moment, I decided, I would not let it. In suffering: joy matters.

December, in all its magic and busyness, was a blur as I continued to ride the unpredictable, mysterious, and frightening rollercoaster of COVID. I discovered it felt a little like modern day leprosy, as it tried to lead me to dark, lonely, fear-ridden places. And yet, I continued to choose to be a forever student of this lesson: The Light Always Wins. It always comes in through the smallest cracks, and washes over the darkness with its renewal. The ways our family experienced love and light during this time, through words, actions, messages, deliveries, errands and random acts of kindness–from loved ones and strangers alike–became a consistent reminder that light and love are actions. They are revealed through others, and their most powerful work is often done in the ashes.

As the holiday season wore on, the world around us grew darker and darker, and I did my best to hold tight to some of our family’s most beloved traditions. The thing about long COVID (or any chronic illness, grief, and so on) is time doesn’t stop. Babies keep growing. Holidays keep coming. Birthdays keep coming. So, with Chris by my side, we’d seek out this joy–purposely–day in and day out. It’s been said, ‘The best medicine for despair is service,’ so some of our sweetest holiday joys were found as we adopted families, filled and refilled a basket of treats for delivery drivers, and sent cards to loved ones who we so desperately missed. In suffering: serving matters.

We also chased joy as we decorated the tree, read favorite Christmas stories, and planned one of our kids’ very favorite traditions–our Christmas Light Tour. When this night finally came, I was so, so sick. But I know all too well each year, the kids are a little bigger, a little older–and I just didn’t want to miss it. As we reached our final stop, a special light show at a nearby children’s farmstead, we sat in our car and stopped to listen to the festive music and coordinating lights. As the kids watched in delight, I felt the twinkling lights dance on my face while my arms and shoulders felt as though they’d been burned on the inside with a torch.  My upper back and head pulsed, and all of a sudden, the tears poured out, from the sheer, relentless pain. I sobbed quietly in the front seat and soon, Chris knew he needed to get me home.

Once again, those tears of pain and fury spilled out. And once again, I felt it: COVID was trying to steal my joy. And once again: I would not let it. In those final days leading up to Christmas, I dug deep. Through the relentless, mysterious, painful symptoms, I knew showing up for our kids, seeing their joy on Christmas Day, would be balm for my weary soul. So, I wrapped gifts and planned Christmas breakfast; watched my boys’ beloved ‘Light Show,’ and rocked my littles in their tree-covered jammies. And I worked–really worked–on soaking it in. And as often as I could, I sought joy in the ‘doing’ of these tasks, not just joy in crossing them off my list. Because I knew too well, there were thousands of families who would lose a loved one that day, from the same virus ravaging my body. In suffering: perspective matters.

And then one night, when I needed it most, the ‘Christmas Star’ shone bright in our early evening, blue Kansas sky, reminding me even in the pain, even in uncertainty and in sorrow–we can keep choosing to keep our eyes fixed up. So this night, we stopped everything, took our kids outside, and fixed our eyes up. In this moment, it felt like a glimmer of hope. And even more so, the active choice to go and find joy. To seek it out when it’s not always in clear sight. After Christmas passed, five weeks into COVID, I had one of the hardest weeks yet. All my symptoms, once again, skyrocketed–my ear pain was nearly unbearable, headache blinding, arms continuing to feel torched, in addition to scary episodes of chest pain and breathlessness.

There were two nights that particular week I was not sure I would wake up the following day. This week finally culminated with one terrifying night, when I awoke to what sounded like an explosion in my left ear, and then blurry vision the following day. Thankfully, that day, for the first time in my entire ordeal, I had the blessing of being seen by a doctor I felt like really cared about trying to help me. While he barely knew me and I was not his patient, he really, truly cared about trying to find some answers, or at least some peace for me. So, I spent New Year’s Day in the emergency room, undergoing a multitude of high-level testing and investigation into my severe long COVID symptoms. Luckily, we were able to cross the big, really scary things, such as stroke, pneumonia, and pulmonary embolism off our list of worries… but despite excellent, empathetic care, no answers were found that scary day.

I vividly remember being hooked up to a multitude of wires and machines, an IV in my arm, and a big sign on the door of my room labeling me a ‘COVID POSITIVE.’ Though I could see smiling eyes beyond the masks, and in many cases extensive PPE, there was still such a sense of loneliness. Modern day leprosy. Isolation. And as frightening as the whole experience was, my heart immediately went to the fact I knew I would get to walk back out of the ER that day. I wouldn’t go to sleep, alone, in a cold ICU room, wondering if I’d ever see my family again. I was well aware this very same day, thousands upon thousands of Americans would not be so lucky. And this thought made my heart physically ache with pain, empathy, and honestly, quite a bit of fury at this horrific disease and what it was doing to our country. In so many ways. Yes, in suffering: perspective matters.

When I look back over the last five months, and particularly those very dark months of winter, I’m struck by many lessons and silver linings tucked down within the folds of suffering. One of the most simple, but perhaps profound truths, is this: Love Shows Up. In the middle of winter, on a particularly difficult day, on which I’d been thrown back down into to the long COVID trenches once again, love showed up the form of my two sweet parents, who live three hours away. On this day, they had noticed it was going to be a rare, warm-ish (for December!) evening in Kansas City, so they dropped everything to drive down to play with the kids outside at the park, and then have an outdoor picnic (in the pitch black in our backyard) for a couple hours.

As I sat in my chair, arms on fire, head throbbing and short of breath, I watched my dad and four children, faces covered by masks, in the brisk evening air playing football. And I thought, in 2020, love looks a lot like this. A lot like just showing up for others. Later that evening, while they began to eat dinner outside, I covered my mom with a blanket, came inside our home, and watched all those loves of my life through the window. And truth be told, I cried. From exhaustion, constant physical pain, and heartache. From longing to hug my parents as they were on the other side of the glass. To see my friends–to see their actual faces. But after acknowledging those feelings, my mind went immediately to this place: how freaking lucky I am to know LOVE like this in my life. How lucky I am to be in my warm home, watching love in action… not in some cold hospital or makeshift parking garage hospital, all alone. In suffering: gratitude matters.

The hard truth is, COVID is confusing, humbling, and deeply painful. And yes–for someone in their 30s, with none of the major risk factors, for whom wellness is a huge priority–let me clear, COVID is quite frankly terrifying. It’s been five months, and though it’s been glacially slow, my body has made progress. My chest pain and breathlessness have improved significantly, but I still struggle with a daily fever, persistent earache and hearing issues, and daily headache ranging from mild to severe. And though I can function without being totally bed bound, as thousands upon thousands of COVID long haulers are, my energy level is not even close to my normal. Normal activities exhaust me and cause flares of my symptoms. COVID is always by my side, lurking in the background.

My heart, though, has gone through profound changes. In suffering, you’d think everything would feel heavier –and in many ways, oh, it does. But it also has a unique way of making everything lighter. Why? Because tucked in between the folds of suffering are gifts. The lessons and silver linings living within suffering are abundant. As my heart continues to change, I’ve learned to fix my heart on these three unchanging truths: first, when things feel shaky and uncertain, the little, repetitive, seemingly ‘normal’ things in our lives can ground us and bring us great peace. Making time to savor our coffee in the morning, crawling in bed with a book instead of a screen, simply getting dressed and ready for the day–even in leggings and a sweatshirt, or an evening walk… seeking solace in the rhythms of our lives can provide such sweet comfort.

As we walk the road of suffering (or any road, really), this I know for sure: simple joys matter. The key here is simple. The kind you notice when you’re actually paying attention, and not rushing so fast through life you miss them. Sunshine pouring through a window, the feeling of fresh air on an unmasked face, fresh sheets on a Sunday night. Listening to a child read, rocking your baby, flowers on the windowsill. And finally, a lesson I am a forever student of: to be loved and known is the greatest gift of all. I can honestly say, loved ones, friends, strangers, and our faith have carried our little family through this ordeal.

Sweet friends who have given me white hydrangeas just because they happen to know I love them; strangers who read my words and take the time to let me know they’ve helped them in their own suffering; cards arriving in the mail to express heartfelt concern; dear friends who ask if they can come visit because they ‘just know’ getting out and about is exhausting for me right now; meals because other mommas ‘just know’ how hard it is to get dinner on the table when you are unwell. Each and every act of kindness has reminded us we are not alone. Yes, to be loved and known–it is the greatest gift we can give one another.

Suffering blesses us by bringing what truly matters into brilliant focus. The brilliance is so undeniable it’s hard to look away–in other words, it begins to become difficult to see life through any other lens than the one that brings you back to basics of what actually matters. The one that strips away the excess, the toxic, and the meaningless. The material and the elaborate. And you stand there, feet planted on the shaky ground of suffering, holding the lens this pain has gifted you. A lens of empathy. Of gratitude. And of grace.â€

This story was submitted to Love What Matters by Jessica Roth of Kansas City.