Just overhead, an ominous, black cloud lingers despite a gentle breeze. The sun shines brightly behind some errant white clouds and blue skies peek out between. Slow, rolling movements make us wait to see which weather will prevail.
In the distance, a rainbow forms, arching across some white clouds and disappearing into the black ones. It’s a telltale sign that moisture is escaping those black clouds and that the sunlight is reflecting off the droplets. Moments later, a second rainbow appears; more moisture. Gravity tugs on a few droplets and they make their way toward the earth, landing on a few people and in various spots. The looming dark cloud thickens and builds; taking over the space above us. White clouds are pushed away and the sun eerily disappears.
Ella, my almost 7-year-old, is one of the people who feels a droplet or two on her face. Then she sees one or two hit her control panel. While water and wheelchairs share the same first letter, the sharing must stop there. Water and wheelchairs do not mix well, and Ella is all too aware of that “life with SMA” fact.
I stand on the grass at Henry’s soccer practice “end-of-season” celebration. The person I am talking with feels a droplet on her cheek. From behind me, I can hear Ella’s chair bouncing in the grass as she approaches, “Daddy! Daddy! It’s starting to rain!” Her voice has a touch of fear mixed with a helping of concern for her wheelchair.
I turn and see her driving up to me, while the droplets are coming faster, pelting my back and soaking into my shirt. I meet up with Ella a few feet from where I was standing and reach into her wheelchair backpack (where we keep her feeding pump and bag). In one of the side pockets is a roll of plastic baggies. The baggies were confiscated from the dog supply cupboard. These bags are ideal because they are convenient to carry (all neatly rolled up) and one bag fits over her controls perfectly, yet lets her maneuver the joystick properly. I take one of the baggies and within 30 seconds her control panel is covered while the joystick is still operable. Disaster averted.
The black cloud declares its victory over the sun, the white clouds, the blue skies and the rainbows. The wind picks up speed and decides to join the rain. Between the two, a downpour ensues, and large drops of water cover the entire field while the wind pushes the downpour sideways. Ella begins “running” toward home, a mere block away. I look up and notice the sky above our house still consists of white clouds and sun.
Knowing that Ella needs to get to shelter as quickly as possible I run alongside her guiding her to the sidewalk where trees provide some shelter from the sun shower. We run, wheelchair bouncing with the plastic-metal like jarring noise as we quickly get from the field to the level sidewalk. Once there, Ella pours on the speed and races for home, trying to beat the wind’s attempt to send the black cloud after her. Ava and Henry spy Ella and me running and quickly follow suit. Ava runs in bare feet, holding her flip-flops. Henry runs in his cleats, holding his soccer bag. As I look back at them, I can see them enjoying the sun shower as it cascades water over them in a delightful spectacle of rain, sun and breezy wind.
Ella makes her move and races onward to the safety of our house. Ava, Henry, and I jog a bit down the sidewalk and then slow to a walk. The short-lived sun shower has had its moment and ceases to exist. Rainbows, several of them, dance across the sky, again reaching from one color cloud to the other, intercepting the light of the sun.
At home, we find Ella safely tucked under the garage overhang, dry as a bone. Being prepared isn’t only for the Boy Scouts. Being in a wheelchair and living with Chicago weather requires preparation and level-headed thinking on everybody’s part; and, yes, it requires dog baggies, too!
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