It was a very good day, except, as is often the case with Jordan, it was a day full of its own challenges.

First, Jeanette sent me pictures of Jordan’s feet. I requested that she do this, naively thinking it would help me be there with them. It did. And it was sobering. The tracing number of incisions and the gruesome spectacle of the Frankenstein stitches emptied my lungs, and nearly my gut. True to form, Jordan didn’t mind the scars so much, but she was incensed that the doctors drew on her leg with a marker (the surgeon’s pen markings were still visible after nearly four weeks). Despite our discomfort at seeing the extent of the work done on Jordan’s feet and legs, it didn’t match the discomfort Jordan had to endure as they fitted her for her new casts. Her feet were very stiff, and the nurses had to really work and stretch her feet to get them into the right position for the next three weeks of casted mobility. I asked Jeanette if Jordan was in a lot of pain. She said that Jordan was quiet and cooperative throughout, except at one point she asked, “how much longer will this take?”

True to form, Jordan handled it all with remarkable poise. She was excited to get wrapped in purple and to be able to stand on her own. She said it felt funny when she placed her weight on her feet, but it hasn’t stopped her from trying to walk around our home. She’s loving the independence.

I love my daughter. I love her strength. I love her personality. I love the beauty she produces in the ugliest of situations. What I don’t love is the unlucky straw she too frequently draws. Seeing the pictures of her poor feet cast a palor on most of my day. It was only matched by the voicemail I picked up from Jeanette. On the drive home, Jordan had a mild seizure. It was nothing to worry about, brief and only strong enough to check her out for a minute and slur her speech, but it was a seizure and those are always scary. I commiserated with Jeanette, who exclaimed, “Really? Today? Can’t we just get one thing a day?” Jordan has very little memory of it, and she isn’t complaining of a headache. Her feet hurt more today and she’s loving the codeine-laced Tylenol again, but she’s otherwise unsinkable. She doled out a lot of grief to her brother when he beat her at Wii. To listen to her litany of complaints, you’d have no idea what she’s been through today. And I suppose that’s what makes this day a win, rather than a fail.

Ever damning teacher,
steadfast I brim
with random Herculean challenges;
love infused, tone obscured.

Always impossible mentor
inspired to pontificate
by the man emerging, boy folding in;
scout the penitent gentleman.

Jordan had a lot of fun with our good friend, Roger Holzberg. He helped her compile and edit her own video about her love of fashion design. She was focused today, and she had so much fun catching up with a kindred spirit. Later in the day, when we had lunch together as a family, she talked about what she’d learned and how she wants to make more movies in the future.

These days, Jordan is playing the part of Mrs. Dubose.

Her pain has subsided to a tolerable level. In fact, she’s able to go most of the day without pain medication. One of her casts was bothering her, but on Thursday the doctors vented it and she said the relief was instantaneous. She has moments of pleasantness, but most of the time she’s bored out of her mind. That boredom leads her down a very cranky path. Her cranky demeanor is testing our patience, though we counsel ourselves to cut her slack, given what she’s gone through.

Those who have followed Jordan’s Journey know that she’s a determined little wag. She doesn’t take ‘no’ for an answer often. It’s generally a good thing, but at times like this it can be maddening. She is so stubborn and independent. If she decides she wants to go somewhere she just heads in that direction without asking for help. I came into her room the other day to find her awkwardly hoisting herself from her bed and into her wheelchair. She would have made it had I not come in, but it wouldn’t have been graceful. And it was risky.

I’ve been lecturing Jordan on smart risks and dumb risks for years. She rolls her eyes and recites the difference back to me. But still, she thinks nothing of wheeling her chair around our upstairs area, navigating too close to the staircase for my comfort. We keep telling her to wait until we can come up and help. She moans and tells us she understands, but then she does it again.

Tonight, she crawled down the stairs using her arms to descend each step.Her helpless legs outstretched in front of her with pink casts ablazing. I dealt her some cane, but all I got back was lip. She’s defiant about her liberty. And not apologetic in the least. It’s enough to make me want to wring her neck … but that wouldn’t help us in our cause. One week is down. She has five or six more to go. With good humor, positive thinking, and a bountiful supply of alcohol, we should make it just fine. I keep telling myself how proud I am of her (I tell her, too, but she’s tired of hearing it). The willpower humbles me, until Mrs. Dubose re-emerges and we’re all taking a verbal beating from the cheeky girl in the wheelchair.

Jordan completely blew me away last night. As I was driving home, feeling sad for what she’s going through — as well as how painful it is for Larry and Jeanette to witness, my cell phone rang. I know I’m not supposed to talk on my cell phone and drive, but when I saw it was from Jordan, there was no way I wasn’t going to answer. I even thought perhaps Jeanette was calling me on Jordan’s phone. I was momentarily speechless when I heard that familiar bubbly voice with her usual “Hi Grandma.”

Although I definitely heard the strains of fatigue in her voice, she chatted on and on about how she just had hot chocolate and some medicine so it wouldn’t hurt too much, how she wants to go see the movie about the dragon with me, and if I could come see her, that would be great. So I promised her I would come up tomorrow after she got home.

My granddaughter is absolutely amazing. Not once did she complain to me or tell me how horrible it was. Had it been me in that hospital bed, I would have been sharing my pain and probably feeling very sorry for myself. Not Jordan. She even asked about my husband, another cancer survivor. “How’s Keith?,” she asked, which made me chuckle.

I want to be more like Jordan!! She truly is an inspiration, and it brings tears to my eyes just thinking about it again.

– Children’s Hospital. Another day, another nickel.

She’s in the O.R. now. It will be a few hours before we see her again. I’m all nerves. Unlike me, Jordan was witty, spirited and determined to get this done. I’m certain she was nervous, too. But it didn’t stop her from chatting with the nurses about rotations in the O.B. ward. Or from cracking a littany of jokes.

I’ve lost count of how often she takes my breath away. She was unbelievable this morning. The lead anesthesiologist asked me, “is she always this happy and talkative?” If only he knew.

I know myself well enough to know that when I find it hard to write, I’m usually avoiding something. The words aren’t flowing today, and that’s because I’m uncomfortable thinking about tomorrow. At 8:30 am, Jordan will check in for the surgery we’ve diligently researched, laboriously discussed, and frequently postponed. But we can’t avoid it any longer because it is what Jordan needs and it will make her life better.

When I was not much older than Jordan, I found myself in a sticky social situation at school. I was inclined to ignore it, but one day when I was exceedingly sullen and full of self-pity, my mother gave me sage advice–advice I’ve never forgotten. She said, “you can avoid this for as long as you want, and you can make yourself miserable, or you can address what scares you and put it behind you.” It was one of those moments where the world compresses and I faced a moment of understanding that made me see things differently. As usual, my mother was right. The fear of what I had to do paralyzed me. The thought of getting it done created hope.

Today, our family wrestles with the dividing line between fear and hope. The fear emanates from not-so-distant memories, and the hope lies in the promise of the girl. Jordan’s last surgery was somewhat routine. It was when they implanted the port catheter so that she could receive chemotherapy more easily. Yet, I will never forget the fear in her face as they wheeled her to the O.R. She is a brave, brave child. She proves her bravery so often we take it for granted. After two brain surgeries, we figured this port catheter procedure would be a piece of cake. But surgery is surgery, and the recovery process was fresh in Jordan’s mind. She grabbed my hand and asked me if she needed to do this. Her eyes were wide and her mouth trembled, and I had to muster bravery of my own when I told her she did.

It’s one thing to be brave when you’re making decisions about your own health. It’s quite another when you’re making those decisions for someone else, especially when that someone is a child you adore. She trusts me completely. The gravity of that trust is never lost on me. I believe, in my heart, we have made the right decision. Jordan trusts us, and she is ready. But I dread the moment tomorrow when I know she will ask me again, “do I really need to do this?”

The procedure will take more than four hours. When she comes to, she’ll undoubtedly experience pain. She’ll face a daunting recovery path. And, she’s going to endure a couple of months of boredom and restlessness from not being able to animate her energetic body the way she prefers. But she will do it, and she will provide inspiration to us in the process. It’s a lot to ask of a child, and I can’t find it in myself today to marginalize the road ahead by painting rosy pictures of the way she’ll cope. I can only tell myself the choice is right and take the next step with her. As a family, we are about to face what scares us and put it behind us.

– Jordan, you’re supposed to be cleaning your room.
– I am.
– No. It looks like you have your feet up on the desk as you surf the web.
– No. I’m not.
I stared her down for more than a minute. She didn’t even pay attention to me. She just kept tapping the mouse and scrolling through her pages, eyes fixed on the screen. Finally, she turned and stared me back with pursed lips.
– What?
At that point, I started laughing. I know, it was the wrong thing to do. She was blatantly lying and defiantly challenging me. I suppose the right thing to do would have been to have raised serious cane. But, there was something so willful about it that I just couldn’t help myself. And, given that she’s got some major surgery scheduled in less than a week, I just decided to let it go.
We’re trying not to make too big a fuss about this coming Friday. Compared to brain surgery, what lies in store is a piece of cake. And the more we focus her mind on the seriousness of it all, the more we’re likely to freak her out. It’s good that she’s still ready to go … optimistic, unfazed, brave. Occasionally, she’ll show signs of concern, but then she encourages herself and she’s ready for the day to come.
On the walk back from a pre-Valentine lunch, Jordan confided in me how eager she is to do things with her feet again. She wants to swim, dance ballet, fight with martial arts, play tennis, ride horses, and attempt gymnastics. I counseled her to take things “one day at a time.” She asked what I meant, not really knowing what to make of the expression. I told her she’d been doing it for six years. I held her hand and reminded her how, when things looked bleak during her cancer fight, she still made the most of every day. I’m not sure she totally understood, but she squeezed my hand three times (our ritual signal for “I love you”) and then started a conversation about the delicious joy of fresh salmon.
“One day at a time”, I thought. Jordan does it naturally. I don’t have to prepare her for it. Sometimes, she takes one day a time to the extreme that she lies to herself and to the people in the room. But, she presses on. I’ve struggled all week thinking about Jordan and her upcoming surgery. I know it’s what’s best and I know it will have incredible outcomes, but I don’t want her to feel pain and I know it will be hard being so limited for two months. Still, I have hope because Jordan lives life to the fullest every day she can. Even when she’s supposed to be cleaning her room.