The sun showers her hair as she leans across the railing of our third floor patio. She rests her head on her hand, with an elbow braced against the iron, and rambles on about a playdate she plans with a new friend. She has quilted me with random observations and anecdotes for the past 20 minutes. Each patch of one-sided conversation is stitched to the next with an obligatory silence. She knows that I have come here to write. She promised not to bother me. And she doesn’t … for a half minute at a time.

I ditch my keyboard and peck between sites on my iPad, resigned to the fact that writing will have to wait. Instead, I decide to listen and enjoy the lilting musings of my slayer. She’s in a great mood today. It’s been a rough week, but you’d scarcely know it from the smile on her face and the delightful cheer in her voice. On this beautiful afternoon in Santa Monica, the sun has no finer companion than my girl.

Jordan’s neurosystem reminds me of a lovable old car. Sometimes it starts. At other times, you have to coax it, stroke it and give it tender loving care to get from point A to point B. She’s had more than a few seizures this week. They vary in their severity, but quickly subside after a little medication and time to rest. More troublesome are the spasms. They wake her at night and catch her off guard when she’s least expecting it. Jeanette has spent more than a few nights in Jordan’s room, laying with her to comfort her while her body jerks without her permission.

The spasms are an odd lot. She’ll be talking to you one minute with her body relaxed, and the next minute her arms and legs start shaking restlessly. Like an orchestra, they play their part and gradually build until her head and upper body add to the crescendo, slamming her forward and back so violently that she gets a headache. Since Jordan is fully conscious during these episodes, we receive a running commentary, which ranges from complete frustration to exasperated annoyance.

This morning, when her head began bobbing uncontrollably, she whined lightly.

– Oh, maaaaan. Why does my head do this?

– I’m sorry, honey. Please sit down.

I took her hand and walked her to the sofa. She toed her way over like a disabled crane, all while her head nodded back and forth as though she were vehemently agreeing with me on something of great importance. I sat her down and put a pillow behind her head to soften the blows.

– Is that more comfortable?

She answered with a crooked grimace. 

– This is so annoying.

But now she is leaning against the rail looking quite lovely and making the world look quite lovely in the background. As much as I’m nervous about not getting some words on the page, I relish moments like these with Jordan.

A soft wind has kicked up and we both remark how great it feels to have it blow over us. I hope this latest setback in Jordan’s health will blow over just as softly … and that I can enjoy many more moments like this with her. 

Written by Larry

Larry Vincent is Jordan Vincent's father. He is a writer, photographer and a branding executive who works at United Talent Agency in Los Angeles. He is the author of Brand Real and Legendary Brands and is currently at work on his first novel, Juliette, which is inspired by Jordan's Journey.

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