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.

Jordan prepares for a school choir performance while her mother reasons with her

Last night we attended her school choir concert. She has been practicing for weeks. Last night’s performance was more of a sneak peak for parents–a glimpse into the work the choir is doing. Jordan took the stage in Steve Madden boots that beckoned interest from her stylishly-inclined classmates. She wobbled in them, shifting her weight back and forth to keep her balance. Stylish as they are, they are a challenge for her damaged feet. No matter. Jordan is determined to convey a sense of style, even when it isn’t comfortable.

When it was time to start, she happily climbed the risers and wobbled three feet above the ground, occasionally reaching her hand back to the lip of the stage to keep her balance. Her feet shifted close to the edge of the risers, and her mother and I leaned forward in our seats, ready to spring forward if it appeared she would fall. In truth, I had a hard time paying attention to the music. I forced a smile every time she glanced my way. Inside I was a nervous wreck. I tried motioning to her, mouthing the words “sit down.” But she rejected the idea immediately, whispering loud enough for the entire audience to hear.

–No, Dad. I have to stand.

And stood she did for the entire half hour performance. She did not take a seat until the applause subsided and the choir was released to waiting parents. For Jordan, the show must go on and the audience gets its money’s worth. Divas always give the audience their due.

Her will is about to be tested again.

We spent Monday afternoon at Children’s Hospital, preparing for upcoming surgery. On February 19th Jordan will have both feet reconstructed. The surgeon will split tendons and chip bone in order to compensate for the excessive nerve damage caused by chemotherapy. Jordan’s feet have deformed by the sheer strength of her will. She was determined to ditch the wheelchair four years ago after a rare reaction to Vincristine robbed her of the use of muscles she’d long taken for granted. In so doing, she created a compensatory gate that put her upright again but unnaturally strengthened some of her muscles at the expense of others and shifted her weight so off balance that the bones in her feet calcified and reshaped to support her ironclad will. Surgery will set things right. Two highly-esteemed orthopedic surgeons have confirmed this assessment. And Jordan is ready to get it over with. When there was some debate whether it was better to do two surgeries (one leg and then another later), Jordan lobbied staunchly to make it a all-in-one special. When her surgeon agreed that her logic made sense, she clapped her hands and exclaimed, “I got my wish!”

It will not be easy. She will be immobile for nearly two months. During the first 3-4 weeks she will wear casts that do not support her weight. She will have to keep her legs elevated and use a wheelchair to get around, which will be a challenge given that we live in a three-story townhome. After the first round of healing, she’ll move into traditional plaster casts that can support her weight, but with both feet healing, getting around won’t be easy. Then, when all the casts are off, she’ll have months of physical therapy. It’s not a pretty picture, but we’re sustained by the promise of what she’ll do when the healing is done. And she has strength enough for us all. We find hope in her outlook. There’s no doubt she’s nervous, but she’s also determined to write this next. She’s determined to wear the boots again and stand on the risers and sing out stylishly without wobbling. That’s the payoff. That’s Jordan.

Gracie Daydreams