She refused to look at me. I walked into the bedroom around noon on Wednesday. I had hoped to be with Jordan when she watched the DVR of Hillary Clinton’s concession speech. She had been asleep when the shocking news streamed through that Donald Trump was our new President. I had meetings in the morning. I hoped by the time I got home Jeanette and I could break the news to Jordan together. Instead, I caught her midway through Secretary Clinton’s speech. Jordan was visibly upset.

This was her first time voting. She and I worked together for several days before the election, going through all the initiatives and candidates. She wanted to know a lot about everything that would require her vote. The night before election day, we marked up her sample ballot together. And then on election day we stood in line together and then we went to the voting booth together. I regret that we didn’t experience the loss together. Maybe a small part of me is relieved. Jeanette and I were distraught in the early hours of that morning when we heard the news as it happened. I’m not sure we would have been good supports for Jordan then. Now, was probably better.

Back in the voting booth after Jordan cast her vote for President I patted her on the back and said, “you just voted for the President of the United States.” She shushed me and told me she was trying to concentrate. This was her resolve. Voting had so much meaning for her. And she was wholeheartedly behind Hillary. I have to say that her spirit motivated me.

I was heartbroken watching her learn that her candidate had lost. Later that day she watched President Obama ask Americans to support President Elect Trump. Jordan stood up forcefully and started to storm out of the room. I stopped her.

“Honey, he’s doing the right thing. This is how we work in the United States. Donald Trump won and President Obama is reminding Americans to respect the office and support the next leader of our country.”

She looked me in the eyes and said, “I know, Dad. But that doesn’t mean I have to sit here and listen to it. I want to be alone.”

Such was our week. The episode, in some ways, reflects the state of our journey.

Jordan has experienced some setbacks in life. There are days when her balance is off. She stumbles around the house before tripping into a bit of despair.

“Why don’t I have my balance?” she asks.

“It’s just not cooperating today,” I’ll say. But, of course, I don’t know why some days she walks with great confidence and on other days she steps tentatively with arms outstretched for the next solid object.

Then, there are the seizures. They spike here and then. Earlier this week she had three full seizures in the span of 2 days. While she doesn’t remember much about them, she gets frustrated that she’s having seizures at all.

A few months ago it seemed we had made so much progress this year. We reveled in her accomplishments. She walked over a mile and participated in a SoulCycle ride. Her legs plumped back up with muscle. She was back to school and the wheelchair was in the closet.

Now, we have hit a plateau. She has missed so much school due to seizures and fatigue that she’s been assigned a home school teacher. She was not happy about this, but it was necessary. She gets headaches, has a pesky cough that surges to the point of nausea when she feels a seizure coming, and she experiences disruptive nerve spasms that animate her body against her will, leading her to sometimes consider her body an enemy combatant.

We’re not taking it lightly. We stepped up the scheduling of her next MRI, if for no other reason than to rule out tumor progression as a cause and help all of us breathe (and sleep) easier.

I’ve spent a lot of time with Jordan over the past few days. Despite my own disappointment over the election outcome, I’ve counseled her to see it for what it is: an outcome, but not an ending. It needn’t determine our fate. Instead, it should motivate us to take action and participate. It’s no different from the way we fight cancer. There’s a lot we can’t control, so we focus on the things we can. We paint a picture in our mind of the way we want things to be and we do all that we can to make that picture a reality, recognizing that paint will run and the light will change. I’m not always sure how much she understands or believes this. Sometimes, I worry that she believes it too much. No matter. As long as we stick together and retain hope we’ll be okay. Of this, I’m entirely confident.

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