Determination

She has an abundance of will. She can do anything she sets her mind to. Don’t try to tell her she can’t. She will. It’s the part of her character that is dangerously alluring, at times beguiling, frequently intoxicating, and always humbling. There’s something to be said for the pureness of her determination. It has literally saved her life. And it has been on display all week.

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 an 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 chapter and get it over with. 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.