No, I am not crazy—polio. It all started so innocently ― a cough like she always gets. There they were, Liam and Lydia excitedly dancing at my feet, begging that we go to the pool in the waning days of summer vacation. Lydia had been coughing for a few days now, and as I watched her, I knew that she was wheezing.
“A little albuterol will fix that,” I thought. I couldn’t disappoint those eager faces.
No longer wheezing, Lydia raced her brother to the car. They tripped each other in their haste to jump in, buckle up and shout, “Go, Mom, go!”
“It all started so innocently ― a cough like she always gets.”
At the pool, they laughed. They splashed. They were mermaids and dolphins. We watched friends come and go as the brutal August sun sparkled on the cool water, but Liam and Lydia still played. At last, wrinkled from head to toe like prunes, they followed me out, much more quiet and subdued than they had been a few hours earlier.
That was our last normal moment. That was “before.” We now live in “after.”
I looked at Lydia in the car. Suddenly, she was pale, peaked, and ill-appearing. “Darn, she’s got a fever,” I thought to myself. My thought was quickly confirmed by Lydia’s whining coupled with a hand to her forehead. Kids get fevers. I don’t worry about fevers. Fevers are annoying, but no big deal... usually. But not this time.
Oddly enough, the cough stopped as soon as the fever came. But Lydia just wasn’t right. She quit moving on her own—literally. She lay on the bed, not a muscle twitching. I would prop her up in a chair. Still, she sat like a limp rag. But she would talk to me, and she would walk when I forced her. So she couldn’t be that sick. Or so I told myself.
And then there were the screaming fits. Blood-curdling, inconsolable screaming. Out of the blue. Day and night. She couldn’t tell us why she was screaming, and we couldn’t do anything to make her better during those agonizing fits.
Finally, reluctantly, I took her to the doctor. I don’t take my kids to the doctor. Viruses run their course, and it is almost always a virus. She wasn’t coughing, but that fever just wouldn’t go away. Eight days was too long. And Lydia just wasn’t herself. Our effervescent, feet-never-touch-the-ground daughter could barely smile.
“She couldn’t tell us why she was screaming, and we couldn’t do anything to make her better during those agonizing fits.”
“Why did I bring her here? She is fine. Why are we doing this to her? She is fine,” my mind raced as I pinned her down on the exam table. Different screaming from her now. The terrified kind. “Stop! Now! Get off of me! That hurts! STOP!” My needle-phobic daughter had to have her blood drawn, and I was choking back the tears as I struggled to hold her down. At least she had more life to her now.
And the next day, I regretted having taken her to the doctor even more. Her lab work was normal. She voluntarily walked and moved, albeit not like her usual bouncy self. Her fever was a little better.
“Mom, my arm hurts.” “
Your arm is fine, Lydia. That blood draw was two days ago.”
“Not that arm, Mom. My other arm.”
“Oh whatever, Lydia. You are fine ... Lydia, why are you using your right hand? Those notes are for your left hand.”
“Mom, I can’t really play those notes with my left hand.”
“Stop being silly, Lydia. Play your piano!”
“I can’t!”
“Let me see your arm.”
Her grip was weak. She couldn’t lift her arm up well. The whole arm seemed weak. What the hell? She was acting better. School was starting. Maybe she just wanted to stay home, to get more attention from Mom and Dad.
“Lydia, quit faking.”
“I’m NOT faking!”
School started. But something wasn’t right. Our happy, enthusiastic, bubbly child was on the floor every morning. Screaming. Crying. Inconsolable. Irrational. Not herself. Something wasn’t right. Lydia wasn’t Lydia.
And it dawned on me that her arm weakness was real. She wasn’t using her arm even when she didn’t know I was looking. Something wasn’t right. Lydia wasn’t Lydia.
Labor Day in the mountains would fix it. Time away. Fresh air. Beloved activities. Only by now my husband confirmed my suspicions. The weakness was real. Her corn on the cob slipped out of her left hand. She couldn’t do the climbing wall. She quit playing on the bungee trampoline. Something wasn’t right. Lydia wasn’t Lydia.
“It dawned on me that her arm weakness was real. She wasn’t using her arm even when she didn’t know I was looking. Something wasn’t right. Lydia wasn’t Lydia.”
Panic. Hysteria. What was wrong? Did I do something to her when I pinned her down during that blood draw? Did she fall when we didn’t see it? What did I miss? What was wrong with our baby girl? Something wasn’t right. Lydia wasn’t Lydia.
And suddenly our lives were consumed by emergent doctor visits. An MRI, a CT, an IV—and more screams and tears and pinning her down. And then from one physician, an off-handed comment that made me freeze: “We have that enterovirus D-68 here right now. I wonder if it was that same enterovirus in California with the partial paralysis cases.”
Oh shit. That’s it. I knew. I knew. And the other off-handed comment that day: “It may not get better.” I screamed and screamed.
Lydia was referred for more tests, more torturous tests involving needles and pain. And then the phone call: the tests were abnormal. The tests pointed to a polio-like illness. And we packed our bags for a trip to the hospital. At least she was sedated for these final tests. We waited ― anxious, nervous. Then the confirmation my husband and I dreaded: Lydia indeed had a polio-like illness. In other words, she had polio. Just not caused by the polio virus.
That dreaded news somehow brought a strange sense of calm—at least we knew WHY. But there were so many other questions. Would she get better? Would she stay the same? We prepared to bring her home from the hospital to start anew, to tackle our new challenges. We could overcome these challenges. We would overcome these challenges. My husband put on a bracelet with a quote from the Apollo 13 mission: “Failure is not an option.” We would not fail. We could not fail.
“We would overcome these challenges. My husband put on a bracelet with a quote from the Apollo 13 mission: 'Failure is not an option.' We would not fail. We could not fail.”
But then the screaming returned. An episode at the hospital just before discharge. Maybe she was just anxious. Maybe she was looking for attention. We’d be fine at home. Really, we would. I could suppress the sense of disquiet now invading my soul. We went home. She was home. Where she needed to be. Home.
And then another episode. Endless, blood-curdling screaming. “Make it stop! It hurts, it hurts, it hurts! MAKE IT STOP! PLEASE MAKE IT STOP!” I couldn’t touch her. She writhed. She moaned. She shrieked. I couldn’t make her better. I couldn’t even hold my baby to try to calm her. Hands shaking, heart hurting, mind numb, I called for help. Sleep was her only respite. Finally she screamed herself to sleep.
Panic. Hyperventilating. Numb with fear. My husband and I looked at each other, holding back tears. Were more nerves involved? Should we return to the hospital? What would happen when she woke up? When would Lydia be Lydia again? Would Lydia ever be Lydia again? More emergent doctor’s visits. Her pain was coming from her nerves. No progression of her weakness. Just horrible, excruciating pain.
Sleepless nights. My husband and I felt like we had a newborn again. ‘Round the clock medicine to control the pain. She was back to school. Maybe we saw small glints of our Lydia. Maybe there was some improvement in her arm. Maybe. Maybe. Maybe.
And then a mundane, day-to-day routine replaced the feverish, frantic pace of trying to figure out what was wrong. We knew. Polio. Just not caused by the polio virus. It hung over our heads every day. Polio. Just not caused by the polio virus. Physical therapy appointments, exercises, exercises, and more exercises. Because she had polio. Just not caused by the polio virus. All we could do was work at those exercises. And pray. Pray.
“Polio. Just not caused by the polio virus. It hung over our heads every day. Polio. Just not caused by the polio virus. Physical therapy appointments, exercises, exercises, and more exercises. Because she had polio. Just not caused by the polio virus.”
Our lives will never be the same. Lydia has recovered some function in her arm, but she has persistent weakness in some muscles. She has strengthened other muscles and can hide her weakness from most people. But she is not normal. And she probably never will be again. She knows what she can and cannot do. She knows her weakness. She knows.
Nightmares, anxiety, and worry have consumed our little girl. Outwardly, she is once more our effervescent, feet-never-touch-the-ground daughter. Inwardly, she has deep scars. Painful scars. Therapy has helped those scars, too. But they are there. She calls her story, “I Am Hurt: the Neverending Story.”
