The Disappointed No-Shows
In Zen and the Art of Motorcycle Maintenance, Robert Persig said, “the only Zen you can find on the tops of mountains is the Zen you bring up there.” It feels like we’ve climbed a lot of mountains on Jordan’s Journey. Sometimes, the task feels downright Sisyphean, but on each new summit I think we’ve discovered a kind of Zen. We keep going on to the next mountain because we can and we must, and the Zen we bring with us comes from two sources: from the Slayer’s seemingly endless spirit, and from the generous hearts of the people around us.
Today tested our Zen. It began with great disappointment, but as I write this I am filled with such humility and deep appreciation for the people in my life that I have struggled to write. I have erased and rewritten the paragraph above a few dozen times, until finally, like the Slayer does on her journey, I decided to move on. She always tells me, “never give up.” So, I’m going to keep going with this post.
Today was the UTA Million Mile Run meetup that Jordan and I organized on behalf of Alex’s Lemonade Stand Foundation. When Liz Scott, Alex’s mom and co-founder of ALSF, emailed me and told me that she was planning to launch this inspiring program in September, I immediately committed Jordan and I to the cause. It’s a fantastic idea: people joining together in one month to collectively walk a million miles to show support for all children who are fighting pediatric cancer. Jordan was so inspired that she committed to walk a mile herself. And when I put the word out to my colleagues that we were taking on this challenge, I was overwhelmed by how many of them lined up to walk or run with us. In just two weeks, my UTA family has already raised over $5,000 and logged more than 250 miles. Today, those same colleagues took time out of their Sunday to converge with their families in tow on the park at Page Museum to walk together in solidarity.
Sadly, we were not able to join them. The Slayer had a massive seizure a few minutes before we arrived at the museum. We were having the nicest conversation and then Jordan said those words that we’d love to abolish.
–Mom, I’m having the funny feeling.
Jeanette calmly gave Jordan Ativan, hoping this was just another aura that would subside once the anti-seizure drug got into Jordan’s bloodstream. But within a minute, we knew it was more than an aura. Jordan quickly began reciting her name.
–My name is Jordan. My name is Jordan. My name … Mom! My na-
There is a scream that Jordan has started making before the seizure takes full hold of her. It is a half cry and half panicked plea for help. I would love to never hear this scream again. I always feel so helpless when she sounds it, especially when I’m behind the wheel of a moving car like I was today. That scream breaks my heart.
I turned the car off Wilshire Blvd less than a block from where my colleagues were gathering. Jeanette climbed over the front seat as I looked for a spare curb to pull over. Jordan had left us by now, the fun-loving force of will we know and love had gone wandering elsewhere and left us with a shaking, dilated zombie. But her indomitable spirit showed traces of being present. It animated her body to complete certain tasks with certitude. She kicked off her shoes and she was trying to unfasten her seat belt. Jeanette did everything that she could to restrain Jordan—to keep her from getting out of her seat. It amazes me how strong Jordan can be when she is incapacitated like this. She’s thin as a rail but don’t let that fool you. She has uncommon strength when she calls for it, and in the moving Jeep foraging for parking on Fairfax Ave she had summoned her muscles to work.
When the big ones hit, a lot of Jordan’s body shuts down. She sometimes vomits. Sometimes, she loses control of her bladder and bowels. It was the latter today, and the always-hygienic child we have raised was fighting her mom as she attempted to get out of her soiled clothing. She was still unable to speak. Her vocabulary was only sucking sounds and deep breaths. I knew then, there was no way we would be able to attend the meetup. After finding a spare curb, I texted Laura and René, two of my amazing colleagues at work who organized the day’s event. I regretfully told them we had to go back home.
By the time we reached the freeway, Jordan was beginning to return. She found words again, but they were mostly the same word over and over.
Jeanette: What’s your name?
Jeanette: What’s your phone number?
Jeanette: Who’s driving the car?
Don’t be sad if you’re tempted to laugh at this dialog because Jeanette and I do. Sometimes, you need to laugh at the absurdities shoveled up by the disease. You have to. It’s how you find that Zen state and have the strength to climb another mountain.
Because of Jordan’s accident, I rolled down all the windows in the Jeep. By the time we reached 70 miles an hour, I looked back at the ladies in the rear view mirror. Jordan had put her sunglasses back on. The kid gets point for coolness. No matter what blow cancer throws her, she has dignity and style. The rush of air coming from the windows blew both of my girls’ hair forward. With their shades on and wind-swept do’s the image in the mirror looked like two girls on a fashionable album cover. So I did what I always try to do when things like this happen. I made a joke, hoping to fetch a smile from one or both of them.
–Better and cheaper than Dry Bar
Jordan looked forward stoically. She was still a little out of it. Jeanette, however, laughed out loud. If I did nothing else today, at least I made my wife laugh a little. It may seem a small accomplishment, but I love it when she laughs.
When we got home we rushed Jordan upstairs and into the shower. She took her time, letting the warm water flow over her. She was speaking again but there was a melancholy in her voice. As usual, she did not remember anything leading up to or during the seizure. She was tired. After brushing her still-wet hair she retired to her room to play on her iPad for a bit before falling asleep, which we knew she would. She sleeps long and hard after the big seizures. In fact, she’s still sleeping as I write this.
I felt utterly defeated today. We missed the big event we’d been waiting for all week. I felt the need to do something, so I went out and started walking. By the time I came home, I added 8 miles to our team count. If nothing else, I wanted to walk with my colleagues in spirit. I wanted to walk for Jordan and Alex.
This event meant so much to us. Jordan and I had been practicing her social skills for days. I told her that a lot of people wanted to meet her, and when they introduced themselves she needed to (a) shake their hands and (b) thank them by name. We practiced two scenarios. In one, the person said their name when they introduced themselves. In the other, they didn’t say their name. In the first scenario, I taught Jordan to say “hi” and repeat the person’s name. In the second, I taught her to say “hi” and ask their name. I tried to trip her up with a few crazy names.
Me (in character): Hi, Jordan.
Jordan: Hi. What’s your name?
Jordan: Dad, that’s a silly name.
Me: Go with it.
Jordan: Hi, Wilhelm. Thanks for coming.
We even did a final round of this exercise this morning as Jordan ate her breakfast. She was ready to go. We’d all packed our cameras. We were wearing our ALSF t-shirts. And we were ready to rally the troops to put more miles on the board for Alex and fellow cancer fighters everywhere.
So, we were quite disappointed when we weren’t able to be a part of what unfolded while we dealt with the latest seizure episode. But what happened in our absence was amazing. It left me full of humility and faith in people. From the reports that streamed over my phone from several friends, a huge crowd turned out to put miles on the board: colleagues and spouses and lots of kids. My friend René sent me this photo of her son Chase. Each mark on his arm is a lap that he completed for Alex and Jordan. I’ve been at this so long it takes a lot to make me emotional, but that picture got me.
Another one of my colleagues sent me this pic earlier in the week. It’s a jar that her twins are using to save their allowance so that they can contribute to ALSF.
Kids contributing to help other kids.
That’s what ALSF is all about. It all began with Alex, who setup her very first lemonade stand with a selfless purpose. She wasn’t raising money to fight her own cancer. She was raising money to end cancer for all children. And she kept on doing that until she raised a million dollars on her own before the disease cut short her crusade. We lost a great cancer fighter when Alex passed away, but the greatest tribute to her is the growth of the cause she inspired and led. The spirit behind that cause was alive and thriving at the Park at the Page Museum this morning. Though the Slayer was not able to be part of that effort, we are so proud of our friends and colleagues who came out to show their support. Our family is grateful to them all, and to all of you who read along and support us day in and day out as we keep climbing mountains, led by a girl who knows how to do one thing extraordinarily well: to keep going.