I wanted so badly to be a laid-back mom. When Ellia was little and crawling, I remember fighting the uptight instinct. “Ellia, please pull that rock out of your mouth,” I’d say in my most non-concerned voice. I’d read parenting books on building trust with infants and toddlers. It was easy. Minimize anxiety by giving them 20 minutes of eye contact a day. Feed them. Play with them. It’s harder than you think to neglect a baby. They require so little—love them, look at them, hold them. Don’t drop them. And if you do, it’s still going to be okay.
But there was always one section of the book that drove me crazy. It was written for parents of chronically sick kids. The book said that trust is easy to establish—unless you have a child with a recurring illness. Normal kids learn to trust their environment by having basic needs met. Sick kids begin to learn that their parents can’t make things better. They have a misunderstanding of what it means that their parents will take care of them. As a mother of two healthy girls, I thought this was unjust. How is it fair to a mother of a child with cancer that the child should struggle with trust? And how is it fair to a child who deals with the anxiety of undependable parents?
I hated it for other people.
When Ellia had her second big episode, we spent a couple weeks in ICU and on the hospital floor. When she came home, she wasn’t standing, let alone walking. She hated the attention she received from sitting in her wheelchair, and she cried in frustration during her physical therapy sessions. After four months, she could run again. But she was deeply affected by the fact that she and Olive both started crawling the same day.
The day after she took her first steps, she woke up lethargic and struggling to walk or put sentences together. We had learned to watch for the symptoms, but it hadn’t occurred to us she’d have two episodes back to back.
This one was even more horrific. There was less talk about liver failure and blood transfusions, but Ellia had other battles to fight. She came in with a mild cold. However, the breakdown of her muscles made it impossible for her to cough. She couldn’t walk so the congestion grew, causing pneumonia and a collapsed lung. She was on full oxygen in ICU a few days after we arrived. She didn’t eat for 11 days. Her need for food was outweighed by her need to breathe. She was moved in front of the nurses’ station because she had no swallow reflex and would frequently choke on her saliva.
The pneumonia treatments were awful—the breathing treatments, the lung stimulators and vests that rattled her till she threw up.
But the worst was that Ellia didn’t say a word for six days. At first, she cried in pain and fear. Then, she stopped. Mainly because she couldn’t physically, but also, as she told me later, because it didn’t matter if she did. No one would stop her pain.
She laid there with oxygen over her nose and mouth, and tears would leak out of the sides of her eyes.
By day six, there was something eerie about her eyes. They’d become see-through, as if she wasn’t even there. When I looked at her, I felt like I couldn’t find her. Her mind was protecting her by shutting her off to the pain. She was the first depressed three-year-old I’d ever seen.
While the doctors were keeping her body alive, her soul was struggling. We brainstormed with the Child Life specialists in the hospital about anything that would give Ellia hope—would give her some handle to grab on to.
As the days went on, her room filled with toys she couldn’t play with and stuffed animals she couldn’t hold. She listlessly watched visitors file in and pray for her. She winced as they’d innocently lay hands on her, not knowing that any physical touch was excruciating.
While she was in PICU the first time, three children died. The second time, four children died. She was stuck in a place where the walls were painted in darkness and fear.
But light would always come in through a sundry of forms—an Ariel balloon, a good test result, or a toe wiggle. And for every heavy moment Ellia faced in the hospital, in recovery or beyond, there has always been light. Not floods of light—she struggled with night terrors every night and she couldn’t go to church or school or Barnes and Noble for nine months. She still has such high anxiety over what she can’t control and wants to control every little thing she can.
The kid has trust issues. And I can’t blame her. The world has been unpredictable since a week after her second birthday when she woke up unable to move.
She doesn’t trust me when I say she isn’t going to die soon. She doesn’t trust me when I say it won’t hurt. She doesn’t trust me when I say, “Tell me the truth—it doesn’t necessarily mean you’ll have to go to the hospital”—because it always does. And, as far as she is concerned, it always will. She'll have to go to the hospital and become a human pincushion with a disease that has no treatment or cure.
It is part of Ellia’s truth.
But, thank God we have the opportunity to add to Ellia’s truth. Her understanding of life isn’t limited to a hospital. Her identity has nothing to do with a diagnosis. She’s a kid who has big reasons to be afraid, but that’s not the extent of her truth.
The worst thing we could do is obsess over this one piece of truth. Equally harmful would be to pretend this truth isn’t a part of her world. Instead, we try to show her how this puzzle piece is in the same box with all of her other experiences. It’s a stupid puzzle piece—not one you’d wish on your worst enemy. But it’s in the box, with the others—the good, fun and wonderful pieces. And it’s not up to us as parents to show her how this fits in, as if we have the picture on the box. We don’t know how the pieces fit together or even if they do. We just know it’s a part of her story. We aren’t puzzle fixers or puzzle makers, we’re just there with her as she sorts through it all. And we're crying and struggling to trust alongside her. And maybe, despite what parenting books might say, that's what it means to parent after all.