On a recent Tuesday morning, I awoke to a set of tasks that needed doing — getting my 12- and 15-year-old daughters out of bed, making their lunches, taking the dog out and (hopefully) sneaking in a quick shower before driving my older daughter to school 45 minutes away. I always like to have a plan.
It was the first day back after our two-week winter break, and I’d been hopeful that we would all be back on schedule. I know my older daughter, Ana, felt the same way. She’d laid out her outfit for school the night before, packed her backpack and was looking forward to seeing her friends. But when Tuesday dawned, she felt too tired and sick to get out of bed.
Ana has terminal cancer. While we hoped she’d feel well enough to start school again, it was clear she couldn’t go. She slept in while her friends caught up with each other and the rest of the world got back into the swing of things. She managed to drag herself to school on Wednesday, but missed the rest of the week.
Nearly five years ago, doctors found a massive tumor on Ana’s liver. Since her diagnosis, except for six glorious months of remission after a liver transplant in 2013, the cancer has slowly and steadily progressed. A dependable daily routine is aspirational, at best, given the current state of her disease.
One day she functions like a normal teenager, and the next, she’s in pain and profoundly tired. Last night, she had a deep ache in her chest that kept her awake until we gave her oxycodone, a potent opioid. That helped her sleep, but in the morning, the pain was so bad again that she could barely stand up straight.
These days, it’s hard to count on anything.
Weekends are easier on the whole family. When school and work aren’t an issue, then we can shift our priorities to accommodate Ana’s good days and bad days.
In the last five years, we’ve been forced to live more in the moment. It’s been difficult, even counterproductive, to try and force a consistent routine — but we come back to it whenever we can. It’s supremely comforting when something in life can be predictable. During the course of her illness, Ana’s had long stretches of stability that have made this possible too. At one point, she was able to take the bus to and from school nearly every day.
But last year, things started to shift completely: Ana’s disease accelerated, and her doctor ran out of treatment options. We started her on hospice in June. Since then, I find myself thinking less and less about morning routines.
I think about Ana. Will she have a good day? If she stays home, how can I help her feel better? Will I need to call hospice if we can’t control her pain?
Ana is a teenager. She wants (needs) the things teenagers want — to go out with her friends, plan for college and go to school. But what actually matters when she has terminal cancer? She’s asked me this question, and I don’t have a good answer. All I can say is that her time is infinitely more valuable than my time.
Whatever she chooses to do is the most important thing she can do. To hell with planning. To hell with routine. To hell with high school. To hell with applying to college. To hell with worrying about the future.
Many parenting books focus on the teen years — how to communicate with your teen, how to watch out for red flags and dangerous situations and, most of all, how to prepare your child for independence. There’s nothing in those books about teaching your teen to live a meaningful life while dying. Planning is what gives our lives meaning, after all. We’re always looking forward: From the time our babies are born, we worry about their future.
I can’t parent this way anymore. It doesn’t make sense for Ana. I must live in the moment, letting go of my expectations. It’s the only way I can help Ana through this. If she doesn’t want to do her homework, I don’t push her. If she needs to stay home from school, I let her. I don’t dictate her schedule — she does. I don’t tell her where to focus her time. All I can do is follow her lead.
My daughter thinks about dying every day. If I get mad at her for something, she reminds me that I’m going to regret my anger when she’s gone. In this way, like many teenage girls, she’s an expert manipulator. She knows exactly what buttons to push to ignite or diffuse my anger, but because of everything she’s been through — and everything still coming — she’s keenly aware that fighting is futile in the face of her inexorable deadline. At fifteen, she is my guide and my teacher. She’s the one who is wise, not the other way around.
We put too much faith in routine, planning every step of our lives as though our expectations are guaranteed. We forget, in the midst of our busy lives, that we don’t control any of it. We’ve gotten it all wrong.
On Ana’s worst night last week, when her pain and fatigue were so overwhelming that she was scared to go sleep, she asked me to hang out in her room. She asked (demanded) that her younger sister join us. Soon my husband came in, dragging the chair from my home office into Ana’s room so he could perch beside us. Then the animals followed — our tiny 6-pound dog and our two fat cats.
The girls played a game on their phones while we all talked and laughed. No one asked how Ana felt. We just stayed with her until she was ready to go to sleep. This unplanned, unscheduled moment of family togetherness was a gift, the silver lining beneath a cloud of dark reality. Ana is teaching us all to be present with her — and with each other — in a way that’s absolutely authentic.
And you know what? I don’t really miss the routine anymore. The best days are the ones without schedules.