Today we’re taking a break from straight-up social media marketing and I’m going to share my experience as a mama/business owner.
As a small business owner, the balance between business and family is a constant struggle, and at times we need to dedicate extra hours to growing our companies. But there are also times, where business needs to take a backseat, or even a break, in order for us to attend to our family. At MKM, I want everyone to see that my small business operates in large part alongside my family (husband Ryan and four kiddos: Aiden, Charlotte, Corinne, and Henry), so throughout the next few weeks, I’ll share with you the story of Fall 2018, when MKM came to a halt for over 8 weeks. Limited work time, limited income, but through it all, I gained a new appreciation for my clients, my children, my family, and my LIFE beyond the world of digital marketing and work.
In my rural small town, I’m sure everyone has heard this story and knows what happened to my daughter, Charlotte, in the fall of 2018. Still, Charlotte’s story (and the story of the parents’ who deal with trauma from their children’s illnesses) has been on my heart to write and share for awhile now. This series of posts is partly for myself to process and heal in the aftermath of the events of 2018, but largely I write this and focus on Charlotte’s battle with acute flaccid myelitis (AFM) because so much is still unknown about this syndrome our daughter contracted last fall, and I and my family are committed to spreading awareness and helping others who may encounter AFM in the future.
So, here goes…
August of 2018 started like any other month. The kids and I were anxiously preparing for a new season of soccer games and the excitement of going back to school. We went together to shop for new crayons (anyone else love the smell of a fresh box of Crayolas?), markers, and Charlotte’s specially-selected unicorn folders for kindergarten. Charlotte LOVES school. As a toddler, she was recognizing letters at 16 months and reading Llama, Llama by age four. She couldn’t wait to get back to school with her classmates and be a “big kid.” We were also planning a birthday party for her sister, Corinne; a weekend away for mommy and daddy; and a wedding for her aunt and new uncle, in which Char was to be the flower girl. It was to be a month full of joyful firsts at the Knuth household.
What we couldn’t have known at the beginning of August was that the month would also be an array of firsts that we didn’t really want to experience: our first MRI, our first ambulance ride, our first breathing tube, and actually missing all the “firsts” we had planned.
The Morning of Saturday, August 11
On the morning of Saturday, August 11, Charlotte woke up at 6 AM complaining of a neck and headache. As a tired mom who had just hosted an in-home birthday party for our 4-year-old, I told Charlotte it was probably because she insisted sleeping on the floor next to my bed the night before. Of course she’d be stiff and sore! I rolled over and closed my eyes. But Charlotte was persistent, “Mom, it hurts. And I can’t move my arm.”
My husband and I sat straight up in bed. True to her word, she was having a hard time lifting and moving her right arm. “Maybe she just slept on it wrong?” I wondered aloud. But deep inside, call it parents’ intuition, Ryan and I knew something was not right with our five-and-a-half-year-old.
Even though it was early, I picked up my phone and texted our family’s nurse practioner. We had been seeing Sherry Kelchen, ARNP, frequently that week because Charlotte was exhibiting some strange symptoms that we thought were associated with a lung infection. Without warning that Tuesday, her voice had changed. Rather than her regular pitch, she now had a nasally tone that was something we hadn’t encountered before. Sherry took a listen and heard diminished lung sounds, so we chalked it up to symptoms of bronchitis and started a steroid regimen for treatment with directions to follow-up if the symptoms persisted.
By Friday, August 10, with no improvement to the nasally voice, inability to eat, and increased lethargy, we returned to our NP who then administered a shot of steroids to Char’s thigh (something that in hindsight was critical at this point of her care) with forewarning that this amount of the drug would make her quite hyper and keep her up most of the day. On the contrary, the rest of the day and through the night’s birthday party, Charlotte napped and could barely get herself off the couch. In my memory, I only saw her upright twice: once for a picture with her sister and another time to hug her soon-to-be-uncle.
So when I texted our NP that Saturday and informed her of Charlotte’s continued deteroting condition, she advised that we go to the nearest ER about 30 minutes away.
By 7:00 AM we were leaving the house with a backpack full of coloring books, art supplies, and toys for Charlotte and a tote full of client work for me. We kissed daddy goodbye, assured him that we would be ok and he could meet us at the hospital as soon as our three other kids were awake and taken to grandma’s, and we loaded up in the van.
What we couldn’t have known that morning, was that our family of six wouldn’t sleep under that same roof together for another 8 weeks.
At the ER
The 30 minute drive went pretty quickly. I was concerned for what was going on, but I don’t think the severity of the situation hit me until we were exiting the van to walk into the ER. When I asked Charlotte to unbuckle her seatbelt, she couldn’t get her hands to cooperate, and as she tried getting out of the car, her neck gave out. Her head tipped backward, face to the sky, and she begged me to carry her the short walk to the admission doors.
The next few hours as we were admitted and assessed were full of paperwork, recounting Charlotte’s strange symptoms, and seeing an array of ER staffers who seemed perplexed and at a loss to explain what was happening to our daughter.
“Squeeze my hand as tight as you can. Good.” Assured one doctor during an assessment.
“Do you see drooping at the right corner of her mouth?” Another doc asked a specialist who had been called in, while I stood close by.
Though she seemed very tired and not herself, Charlotte was satisfied to sip on her blue Gatorade through a bendy straw and watch some movies on my computer to pass the time. She entertained the doctors’ requests through their series of assessments each time someone new was called in to see her case.
“Can you bend your right arm up so you touch your finger to your shoulder? …Ok,” said the pediatric specialist as she was unable to comply with his request.
“Squeeze your eyelids shut and don’t let me pull them open.” The doc placed his index finger on her right eyebrow and his thumb below her eye and pulled her eyelids apart effortlessly. Her muscles seemed to not be able to follow the directions her brain was giving her.
As the doctor conferred with another specialist in the corner, I turned to Charlotte, who was in a state of dismay, “Mom, this straw quit working! I can’t drink my Gatorade.”
“It must have a hole in it,” I took a turn to verify my hole hypothesis. Immediately I had blue Gatorade in my moth, meaning no hole. “Why don’t you try again, honey?” I placed the straw back on her lip, and my concern rose as I could see that she could no longer close her mouth around her straw. In a matter of minutes, this crazy whatever it was that was making our daughter sick had progressed. “She can’t swallow anymore” I said aloud to Ryan, who had arrived by then to join us.
Just then, the pediatric doctor entered the room and pulled Ryan and I aside. “She’s going to need an MRI of her brain. I want you to be completely aware of what we’re thinking, so there aren’t any surprises. (long pause) It’s quite possible that Charlotte has suffered a stroke…or it could be a brain tumor.”
What in the honest fuck?
I couldn’t believe what I was hearing. Hot tears rolled down my face. I know we exchanged questions as the doctor prepped us for what the next two hours would entail, but I cannot tell you what we discussed. All I could think of was, “my baby is seriously sick” as I squeezed Ryan’s hand for support.
The one cruelty I can vividly remember as Charlotte and I rolled down the hall to the scanning room, was that only one parent was allowed to accompany her. While I was able to sit with her as she kept herself immobile on that MRI bed for two hours (minus two potty breaks – a small feat for a 5-year-old that illustrates the strength of this child), her dad had to sit alone in our ER room wondering what we were doing back there, how much longer the procedure would last, and if his baby would be ok. It was horrible.
What the MRI revealed, and another thing we couldn’t have possibly known, was that for the past couple of weeks Charlotte’s immune system had gone on a rampage and attacked her spinal cord, eating away at the myelin coating that protected some of her bodies nerves, leaving lesions on her spinal cord and brain. The most critically-affected areas were around her C5-C7 vertebrae, the area of the spinal cord that controlled her head and neck (therefore her swallowing capacity), upper extremities (therefore her arms), and her diaphragm (which in the hours to follow would dramatically reveal itself).
Charlotte’s case was beyond the ability of care of the hospital we were at. The pediatrician was calm and collected as he told us it would be best for her that she be transferred to the University of Iowa Stead Family Children’s Hospital as quickly as possible before her condition deteriorated any further. He also advised us that this stay could last a couple of weeks, to which we said, “Oh no way will it be that long. Charlotte starts school next week and then she’s a flower girl in her aunt’s wedding. We’ll surely be out be then.” (#famouslastwords) But that pediatrician looked at us sternly, advising that we prepare ourselves for what would be a long journey. And then, he asked to pray over our dear daughter. He prayed for strength for her and us, and he prayed that we have success on this journey. It was an emotional moment that I will never forget.
We were quickly prepped for transfer. I had time to call my mom and our NP from back home who had been checking in hourly to get updates, and thenwe were on the way to Iowa City. Char was pretty excited because it would be her first trip in an ambulance, a “first” I was less than excited to experience.
To pass the time in the ambulance, Charlotte and I read stories and made small talk with the EMTs on our transport. By this point it was only 3PM, but it had been hours since she’d had anything to drink and she was complaining of thirst. Without knowing when her swallowing would get worse however, she was not to be given anything orally – food or liquids – and she was pissed. But about 20 minutes we passed our town, and we waved at the water tower of Cascade as it disapperead into the distance. Another 20 minutes into the 60-minute trip, she asked me to stop reading because she was getting sleepy. Her alarms began to ring as her fever spiked above 103 degrees, and she drifted off to sleep. The EMTs assured me this was ok, and they would keep her comfortable.
As we arrived in Iowa City at the University of Iowa Hospitals and Clinics, Charlotte woke and we were led through a maze of hallways and elevators to get to our room in the pediatric intensive care unit. As we walked, Charlotte made sure to vocally remind us how thirsty we was each time we passed a water fountain (there were 3) without stopping to let her get a drink, a humous reprieve from the very unfunny situation we found ourselves in.
Around 4:30 PM, we made it to PICU room 322, what we didn’t know was to be our home for the next four weeks.
That first day of school we thought she’d attend with her siblings? She was actually breathing with the assistance of a ventilator.
That wedding she was to be a flower girl in? Her dear therapists were helping her sit upright so we could facetime her aunt, the bride.
The WAVE at the Hawk game that everyone talked about upon our admission and we were sure we wouldn’t see because the home opener was a full three weeks away? We saw 3. Not only did we see it for the UofI’s freshman class gathering on the field at Kinnick Stadium on our first weekend at the hospital, we saw the real wave for the Hawks’ home opener, we saw it again for the rivalry with Iowa State, and missed the third home-game-wave by one day.
Our life was forever changed by the events of August 11, 2018, but that was only day one of a much longer journey that we as a family went through, and I would argue we are still going through a full year later.
At the opening of this post, I alluded to this series of lifestyle blogs to discuss the balance of work and motherhood and how sometimes there is an imbalance to it all. On August 11, 2018, I had a bag full of work with me that I carried to the ER in Dubuque and again to the PICU in Iowa City. During our 8 weeks away from home, I can probably count on one hand the number of times I opened that bag to perform a work-related task.
Sometimes life is bigger than work.
And on those instances, I pray you have clients and friends as dear as I did in this season, who let you focus on what’s truly important.
So there you have it. Day 1. If you read this far, I applaud you, but I also want you to know that this is Day 1 of many. Some days were good, some days were terrifying. But I know I am a stronger person because of it. I am a more empathetic, better business owner because of it. I am a more faithful person because of it. Our family holds each other dearer because of it.
In this series, I intend to tell my story of Fall 2018, being as vulnerable as I can while honoring the stories of Charlotte and other members of our family who experienced this trauma too. I may not have been the patient in that hospital bed, but I know that I and each of our family members have a unique take on how these events affected us, and I want to be respectful of their feelings and privacy too.
Thank you for your support, thank you for following along, and thank you to those who offered up prayers or supported us during this time. We were and continue to be so surrounded by love, it was a palpable feeling and left us extremely humbled.
If you’d like more information about AFM, please visit one of the following links: