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When My Daughter Called Me 'Brave' in the ER

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Last fall, I experienced terror on a new level. In the days following my monthly intravenous immunoglobulin (IVIG) infusion for common variable immune deficiency (CVID), my body began to spawn unusual, intensely painful symptoms. They worsened by the day. Generally, I have a rather intense headache and a tremendous amount of fatigue in first three days after my IVIG. On the morning of the fourth day, I wake up a new woman, healed like clockwork.

This reaction, however, was a different beast entirely. I lay in bed with a towel covering my eyes to keep the light out. Leaning over produced the overwhelming urge to vomit. A rash began to crawl up my left arm, and it hurt to turn my head. My skull felt too small for my brain. I sat in the bathtub and cried in agony.

On the morning of the fourth day, I did not wake up miraculously healed. Instead, my 5-year-old daughter awoke screaming out in pain,“My head hurts so bad, Mommy! Make it stop!” I quickly took her temperature, still trying to shield my eyes from the light. 104.2 F, I’d never seen her temperature this high before. I frantically texted my home health nurse who’d been at the house the night before to change the dressing on my PICC line and asked, “Do I have something contagious? Did I give it to my daughter?” I’m still trying to heal from her answer. “I think you may have given her viral meningitis. Have your husband take her to the ER. I’m on my way to get you right now.”

I strapped my daughter into her car seat while she vomited into a bowl and cried for me to come with her. My heart felt like it had been put through a paper shredder. In truth, I was too sick to go with her.  In a matter of minutes, my daughter and I were set up in ER rooms next to one another. She cried for me, but I wasn’t allowed to see or touch her. My room was set up for precautions. She needed me, and I couldn’t get to her. Never had I felt more powerless. What had I done to her? It wasn’t long before a doctor came in and told me my daughter was laughing and watching cartoons. Once her temperature was controlled she was her normal, happy self again. She’d been cleared, now me, I was another story. They considered a brain bleed and several other fun options.

About six hours into one of the worst days of my life, the door to my dark, cool hospital room cracked open. In walked my sweet little girl, still dressed in her pink and black polka dot bunny nightgown. An adult sized mask swallowed her face. She stepped to the edge of the bed and asked, “How are you feeling, Mommy?” Tears fell from my face at a rapid pace. “They said I still can’t touch you, but I brought you these prizes for being so brave.” Then, she slid a hospital issued package of graham crackers and apple juice onto the bed. From behind her back, she revealed a Tinkerbelle sticker she’d chosen for me, “Because you are so brave,” she said again.

Here is this moment of my life when I felt least brave, yet my child had named me brave. The tears wouldn’t stop. I took her sticker and hid it under my pillow. After she’d closed the door, I held onto the sticker and sobbed until my body shook. Sometimes, we all need someone to name us brave when it seems all is crumbling around us.

In the end, the neurologist said my body had decided to spawn a new illness called vasculitis. I don’t have nice things to say about vasculitis. Her and I have gone toe to toe several more time since that first episode.

My Tinkerbelle sticker still sits on my dresser, reminding me that I am brave, even when I feel it least. And so today, I’m passing out stickers and snacks. I’m meeting you in the scary, hard, terrible places and I’m naming you brave — even when you feel it least.

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Lead photo by Thinkstock Images

Originally published: February 6, 2017
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