Burdensome

If you want to know the truth, we were both acting childish. Both of us were cross and unreasonable. Jordan flared up and then refused to talk to me, turning her head away to avoid eye contact. I was a cranky bully who was having a bad morning and didn’t really want to brunch. But brunch is our weekly ritual. Brunch is sacred … except when it isn’t. Except when she decides to sleep in.

Here’s how it goes most Saturday nights:

Jordan: Dad, what time should I set my alarm so we can go to brunch together tomorrow?

Me: The same as every week. 11am.

Jordan: Ok. I will get up this time.

But some weeks, when I get home from my weekly SoulCycle ride, she’s still snoozing away. When I try to wake her she’ll mumble, “I just want to sleep today, dad.”

And that’s perfectly fine with me. I love the time with her but I’m also more than happy to brunch by myself. And on the days when she actually does wake up, it is usually the most pleasant Dad and Daughter time imagineable—a wonderful way for both of us to end the week in good company, laughing and eating good food at one of our favorite Santa Monica eateries.

Not today.

Here’s what they never tell you about childhood cancer. They never tell you that if you’re lucky enough to keep it from killing your child you get to enjoy the effects of its aftermath.

The aftermath is the stray dog that won’t leave us alone. The aftermath is the conversation we never want to have because there’s no easy way to consider it. We should be grateful for the aftermath. And we are. But sometimes it also pushes us to edges. We live in a world of 24/7 care and concern. There are the seizures, and the risks of falling from troublesome mobility. There are bloody toes and sudden coughing spells. There are the constant headaches and bottles of pills in every corner. There are the struggles disassembling and then assembling the wheelchair again and again … and the planning required to do something as simple as Sunday brunch.

It takes a toll. It takes a toll on everyone including Jordan. We’ve been on this journey of tension and anxiety and constant call for fourteen years. A day of crossness and irritability is inevitable and minor in comparison, frankly.

Yet days like this cause me the most distress. They distress me because those edges that reveal themselves on a foggy Sunday morning are the ones that cut the sharpest.

It started out innocently. I came back from my ride half-expecting Jordan to still be asleep. She wasn’t. She was fully dressed and ready to go. She was also chatty. Before the front door had closed she was asking me questions and soliciting my help to find her sweater. She knows I hate being tasked when I first walk through the door, and Jeanette was quick to remind her to let me put my things down. But Jordan had a full head of steam going.

I’ll be honest. I was in a foul mood, and it had nothing to do with Jordan at all. I awoke envisioning this grand day, when I would get on the bike and crush it and then be so productive in my writing and other chores that my head would spin. Instead, I struggled on the bike and felt like the rest of my to-do list for the day was a prison sentence. Brunch felt like hard labor.

I showered, got dressed and walked Jordan to the car. We decided to drive because her balance was not great. When we arrived at the restaurant we sat at the counter, as we usually do, and I asked her what she wanted to order. Mind you, this is a restaurant that we go to nearly every Sunday when we brunch. She knows the menu. Still, she asked me to read it to her. The menu is double-sided. There are a lot of dishes. I asked for a general sense of what she wanted. She wanted me to read the options to her. So, this set me off.

We went back and forth about whether or not she wanted something breakfasty or something lunchy. I was an irritable old bastard about it. I can’t lie. But as I read through options she started to get sassy and things spiraled out from there leading to the exchange of silence and absence of eye contact that I mentioned above.

Now, you can look at all of this objectively and think it’s a perfectly normal “bad day” between a father and his teenage daughter. Except, what’s missing is the heaviness of minor things. What’s missing is the guilt I felt for not being more understanding of Jordan’s inability to navigate a menu on her own. What’s missing is the self-consciousness that I imagine Jordan sometimes feels by having to ask for help reading a menu—the feeling of dependence, perhaps even of being a burden.

She can’t read a menu.

She can’t go out on her own.

She can’t go far from a bottle of anti-seizure medication.

She relies on us so that she can do normal things like go to brunch. Imagine how that must feel.

I never want her to feel she’s a burden. She is not. She is a gift. Our journey is the burden. Sometimes, it taxes each of us and makes us pretty miserable people. I do my best to don a Clark W Griswold smile, but sometimes the sum of it all takes over.

Fortunately, we find hope by realizing the misery doesn’t last. By the late afternoon, Jordan and I were lounging together in the living room. Jeanette was at yoga class. The sound system was playing jazz. The pets were snoring. I finished my writing. Jordan binged on TED talks. The room was otherwise still and peaceful. I broke that peace.

“Hey!” I said.

She looked up from her iPad.

“I was cranky earlier. It wasn’t your fault.”

“I understand,” she said. “I get sassy, too.”

And with that, we moved on, ready to take tomorrow.