Jordan's Journey

In the midst of an animated conversation on the art of shopping, Jordan snacks on Trader Joes Spanakopita.

Jordan sashays into the kitchen, swaggering from hip to hip as she often does. In fairness, her gait is partially out of her control. It’s the product of the way her body shifts her weight to compensate for the trouble with her legs. But she takes some joy in the sassy walk. She works it.

– Dad, guess what I found at Walmart?

She is fascinated by America’s leading discounter. Somehow she stumbled on to the Walmart.com link, and to my misfortune her parental control filter seems to think Walmart is tame–safe from any harmful content. Now, you might think that an ecommerce site like Walmart would hold little interest for a juvenile web surfer who can’t read.

You would be wrong.

For the last several days she has flipped through its pages ogling at the different things she would like to buy for her friends and family. She’s been keeping a list and using her new digital camera to take pictures of the web pages she likes (we’re trying to teach her how to bookmark and use screenshots, but she prefers this manual method).

– They have the most AMAZING stuff. We have to go there.

No disrespect to the good folks at Walmart, but I would rather stand in line at the DMV while being treated for rabies with injections to the stomach than visit a Walmart store. I can’t say this to Jordan, of course, so instead I hedge.

– Daddy’s not really much of a shopper.

She thinks of this for a moment, grabs a few snacks from the cupboard and then advises me again.

– You really should see it, Dad. I just love Walmart.

She blows me a kiss and scrambles back to her computer. I sigh and consider cocktails with breakfast.

Jordan in the parking lot of LAX, a few minutes before the whole trip was cancelled.

She’s not happy. She was all set to make her very first trip alone. We booked her first class on a flight to Portland to spend the holidays with her aunts and uncles. At 4:45am this morning, all systems were go. Alaska Airlines confirmed she was clear to board. We drove all the way to LAX to learn it was a no go. The flight was still scheduled, but due to weather, unaccompanied minors were not allowed.



She was devastated. We’ve spent the morning lifting her spirits and promising to rebook her flight early in the year, when the weather is better. I told her the bright side: she gets to have Santa visit her own house.

Jeanette lined us up in the backyard before we set out on our daddy/daughter excursion to the Music Center for a day of culture.

Blue light reflected from the stage and bounced onto her snowy skin. The corners of her mouth lifted slightly as the pas de deux began. Clara and the Nutcracker locked their arms and glided gracefully across the stage. Jordan sighed and leaned her head against my shoulder. She grabbed my hand and interlocked our fingers. Act two was nearing the end and the music swelled with cymbal-adorned crescendos. The Nutcracker spun Clara, lifted her high to the sky, and embraced her while snow fairies waltzed upstage. I turned to Jordan, whose face was alight with inspiration, and I asked her, “wasn’t that lovely?”

Her eyes widened. “That was awesome.”

When the couple returned to the stage to take their bows, Jordan sprung to her feet shouting “Brava!” She also shouted “Bravo!” I told her it was customary to just shout for the prima ballerina. She told me she liked to compliment them both, and so she shouted again, “Brava-Bravo” as if it were a compound phrase meant to leap from the tongue in tandem. It was a beautiful thing. We had an afternoon we both will remember for many years to come. (more…)

Last week, Jordan participated in her school’s holiday play. I wasn’t able to attend, but when I arrived home she was abubble with prideful energy. This is the first year since she became symptomatic that Jordan could do more than hum a tune and interject a few words here and there. She actually memorized whole passages of the songs, and when she reenacted the proceedings for me in our kitchen, she remembered stage direction, too. That might not seem like much, but for Jordan it’s quite a step forward. It means her memory is getting better, further sign of her progress. (more…)

Even a trivial game like a round of Guitar Hero brings out the fierce competitor in Jordan. She isn’t satisfied until she proves she’s the best.

Her seductive personality, which often lapses into soulful discourse on the merits of biscuits and tea, belies a gritty underbelly on her character. Psychologically speaking, she might shiv you to win a challenge. She has a ruthless side that sparks when placed in competition. It is the essence of what propelled her up that rock face in Orlando, the substance of the never-ending war of words with her brother, and the very foundation of her survivorship. Jordan is a competitor. (more…)