Gearing Up

Until I held her in my arms I hadn’t been bewitched. She with the perfectly rounded head, the bowed lips, the eyes that lifted your dreams. I learned about humility that day. I became a daughter’s dad. I had been blessed before. No feeling like welcoming a son, they say. And it was glorious. But with this angel in my arms I thought the lottery had enriched me twice.

I get asked how I’m doing a lot these days. In the flurry of day-to-day life I try to tuck away my fears as much as I can. The best medicine for me and my family is to create the semblance of ordinary. Even Jordan works toward this goal. But reality bludgeons me here and there: a call/fight with the insurance company so that we can book the operating room, a note from a friend to schedule dinner for the family when Jordan comes home from the hospital, a moment with Jordan as a seizure animates her body.

She will check in at Children’s Hospital on Thursday morning. The surgery is expected to last for at least four hours, but it can go longer. Jordan will spend several days thereafter on her back recovering. It’s never lost on us that the team continues to refer to this surgery as a “high risk procedure.” That’s the part that jars us from ordinary life.

I honestly don’t know how we are really doing. We put on a very good front. We work hard to make our life together as “ordinary” as we can. The kids fight. The parents scold. We tease one another and find ways to horseplay. Bills get paid. Kids do their chores. And we behave like every family should behave. It’s as if we refuse to let the disease change us. But it changes us every day and leaves a residue on everything we do.

Jordan swam today. Our friends invited her over to their beautiful new home in the hills. Jordan was delighted to oblige. Last night I advised her to take it easy. “Don’t try to do too much,” I said.

–Dad, it’s going to be ok. I’m just going to play in the water.

I smiled and said nothing. Jordan kept going.

–I’m just going to have a good time, Dad.

–I know Jordan. I just want you to take it easy.

–I’m just going to swim in the pool for a little bit.

I smiled again.

–Just let me have some fun, Dad. I just want to swim a little bit. I’m just going to swim in the pool.

She does this a lot. She repeats her argument. She goes on and on. I try to be patient, but at some point I feel the need to tap the needle so the record stops skipping.

–I get it Jordan. Just do your dad a favor, ok.

–I WILL, Dad.

I stare across at her and I see those same gorgeous eyes that first transfixed me–wide pools of blue encircling a decisive punctuation mark of a pupil. You can’t help but fall into this well. And lately I fall hard. When I make eye contact with her I feel ridiculously inept. This iron-willed, emphatic force of nature trusts me, just as she did that day she first breathed air, resting in my arms. Her eyes belie her fierceness. They reveal all the love she is capable of giving, the vulnerabilities she rarely admits, and the absolute trust she places in those who are closest to her. In some ways Jordan is a slayer because she doesn’t worry about what we’ve signed her up to do. If her parents tell her she has to do something to fight cancer, she’ll do it. No questions asked. That may seem wonderfully remarkable, but to me it is absolutely terrifying. I have signed her up for another battle. I lose sleep over this decision knowing that she will go through with it more bravely than I ever could.

Tonight she fell asleep on the sofa listening to Ella Fitzgerald with me. At one point, I spent a few minutes just admiring her, draped in one of her favorite blankets with her arm resting above her head. I tried to memorize her unmistakable profile–the same cherub lips I first admired on her very first day, braced beneath a delicate nose on a face that’s no longer a baby’s. I kissed her on the forehead, whispered how much I loved her, and wished that I would make all the right decisions in the days ahead. I wished that I could be a buffer and absorb the coming shocks, that I could be a comfort, that I could honor her trust and continue to be the one who protected her, that I could be the one who always made her laugh. I sat there with her for awhile more, wishing she would tell me not to worry again and again and again, like she does. She relies on me to be strong and I find strength in her.

When it was time for me to go to bed, I stroked her hand and told her I was about to pick her up and carry her upstairs to her room where she’d be more comfortable. Usually, she just nods and sleeps while I lift her. Tonight, she opened her eyes and shook her head no.

–It’s late. You need to sleep.

–I need to brush my teeth first.

I said ok, of course. But her brother was in the shower and she couldn’t get to the toothbrush. She got very worried.

–Do you think it will be alright if I don’t brush my teeth before bed.

Here she was, days before spinal surgery, worn out from a day of seizures and fatigued by the pace of slaying cancer–and she’s worried about missing a night of teeth-brushing. I told her she could brush extra well in the morning. She said okay and let me tuck her into bed. As I was leaving her room she said, “love you madly, Daddy.” And I said what I always do.

–Right back at you.