“When do you think I’ll be able to get out of this wheelchair?” she asks.
It’s a straightforward question; one that she has asked before. “I don’t know,” is the easiest reply but it also feels like a cop out. So, I answer her honestly.
“You may never get rid of the wheelchair completely.”
There’s a moment. I let the silence envelop us and resist the urge to fill it with appeasing affirmations. She squints her eyes when she thinks hard on something. She is squinting now. She looks beyond me, into a wide space of her own thoughts. Finally, she returns.
“So, I’m never going to get out of this wheelchair?”
“I’m not saying that.”
“Because of the seizures?”
“No,” I say. “It’s because of what the cancer has done.”
We speak again about how cancer damages healthy tissue. In her case, we think it damaged parts of her brain that tell her feet how to move properly. On top of that, chemotherapy may have damaged nerve endings in her feet.
She is squinting at me again. Her face is expressionless. I wonder if she is feeling sad or if she is merely processing the idea.
“Well,” she says. “I do hope I can get rid of it one day.”
It’s not lost on me that “it” could be the chair or the cancer.
I agree with her and ask if she worries about life with the wheelchair a lot. She says no, but tells me that she does think about getting out of it from time to time. She says she wonders more about whether or not she will have children. She is confused a bit on this topic as well, thinking her seizure disorder is the potential barrier to her future family life. I explain to her that it also has more to do with chemotherapy. Some of the drugs that she took to fight tumors can make women infertile. We don’t know if they affected her this way, but it’s a possibility.
I feel this conversation is quickly becoming a downer. The Slayer doesn’t let that be the case.
“You would be a good grandpa,” she says with a smile. “Because you like to tease so much. You’re good at teasing me!”
And there it is. Hope and humor and my girl.
She doesn’t know how often I think about these topics—her future independence, her ability to have a family of her own. I choose not to tell her and instead let the thoughts and feelings scatter through my mind like wayward children. A few minutes later we are laughing about the antics of our dog Gracie. A wide smile takes residence on her face, and the squinting is done for now. A little while later she crawls up to her room and lounges in a pair of her favorite pajamas, sorting through photos on her bed and updating her Pinterest page.
These metaphysical conversations about her future are infrequent, but surface they do. I am usually unprepared. There is rarely a preemptive warning. No moody behavior. No emotional outburst. She snatches them from the air as if they were drifting dandelion seeds. When they take root she wants to get my opinion on their nature. Occasionally, she’ll whine or express frustration at my responses, but she is most often impassive. She trusts me to be candid. On the few occasions when I have sugar-coated an answer, she’s called me on it.
She counts on me to help her get it right.
A few years ago, I printed every page of this blog. It wasn’t a retaliation against trees but rather a concern that Jordan’s Journey only existed in a cloud. I felt better knowing we had a hard copy. This is a history. It is different from the kind of history you’d find in the medical records of her physicians and hospitals. It traces more of a spiritual life. Though I wish this blog was in her own voice, I’ve tried to capture the girl in all her beguiling ways as she’s traveled through significant events and milestones. There’s a lot of me set down in this recorded history, but the intent is to capture the life and mind of the beautiful character we call Jordan.
Last week, I pulled the printed version down from the shelf. It lives in a binder, three inches wide. The journey is printed on both sides of the several hundred pages. The depth alone is a sober reminder of how long we’ve been at this.
I flipped through the pages for over an hour, reminding myself of episodes I’d not recalled for a long time. Sometimes, I felt the sucker punches all over again—the horrible setbacks and gut-wrenching struggles like Jordan’s ill-fated 7th birthday and the onset of seizures, or the day she began a week-long comatose absence. There was the realization that the tumor in her spine was growing again, and the long, hard conversation with the gentle doctor in Chicago. But just as often I felt pride in the triumph of Jordan’s will, the resilience of my family, and the hope we’ve always tried to muster. There was the time she scaled the rock wall months after intense physical therapy to walk again. There was the grand birthday celebration at the hospital days after her riskiest surgery. There was the way her brother comforted her and showed a bravery that made her feel absolutely normal.
This trip down memory lane was mostly healing and uplifting. Only one aspect troubled me. As I traced the journey from its beginning I was reminded of the massive changes in Jordan’s personality. The character I’ve labored to capture has mellowed. She was once a rambunctious force. Early entries chronicle a girl who raised the roof with tantrums and laughter, often in the same space and time. She was a girl who ran and danced and made us laugh because of her penchant for silliness. Recent entries paint a picture of a different girl—a girl who is often quiet. A girl who seems to reside mostly in her own head; who squints and thinks deeply about her future. Jordan was once a girl who shed crocodile tears at the Spongebob Squarepants movie (much to her brother’s chagrin). She now says that she cannot cry—that she rarely feels the urge. While she still has moments of extreme joy and unapologetic anger, these mountains of temperament are divided by an increasingly large and mellow valley of blankness.
The physical effects of cancer are easy to observe. Though difficult at times, they can be managed. The mental effects are much harder. I can imagine a life for Jordan that is constantly attached to a wheelchair. I can imagine a life for her that is childless. These potential realities sadden me. But what I find hard to imagine is a life for her that is always attached to uncertainty and increasingly Jordan-less.