Dancing Through The Pain: Thoughts on Coping With A Loved One's Illness

I can't say that I've ever been a big fan of Mondays.

Sure, sometimes Mondays are a bit of a relief- a respite from the craziness that more than 48 solid hours of sports events, social activities, church, family, and general togetherness can bring. And as someone who works from home, by Monday morning I desperately need everyone to vacate my "office."

But like a bad airplane flight, the reentry into the work/school week is never without a little bit of turbulence. No matter how smoothly you sail through the friendly weekend skies, come Monday morning you'd better fasten your seatbelt because things are about to get bumpy.

After using the jaws of life to separate child from mattress, Monday mornings will typically bring spilled milk (and the inevitable albeit useless tears), runaway permission slips, phantom homework assignments, and/or...Surprise!...3-hour conference calls that magically appear on your schedule.

As if Mondays aren't difficult enough, they also happen to be the one day of the week when we have simultaneously overlapping child activities, resulting in a life-sized version of Parental Taxi Twister: Put your right hand on cross country practice at the park, your left foot on dance class across town, now just contort your entire upper body into a lovely pretzel shape as you streeeettttccchhh your left hand over to the crockpot to make sure everyone somehow gets fed. Now grab the spinner and see what homework awaits should you ever get out of traction. By the time chores and baths are done on Monday night, I'm not sure whether to laugh or cry, and I usually lack the strength to do either. Everything about the day leaves me feeling drained, constrained, and often, pained.

But my daughter, on the other hand- she LOVES Mondays, and not just because she's six years old and first grade is pretty much the best thing to ever happen since...well, kindergarten.

For her, school is just the appetizer to Monday's deliciousness. The main course is served at 5:30pm, when she has ballet. Every week at the appointed time, I marvel as my shy little flower is totally transformed, shedding all her normal inhibitions and putting on some kind of invisible coat of armor along with her leotard and tights. For one perfect hour, I watch her blissfully twirl and swirl across the room, and I wonder what it's like to feel so free.

I wonder if my dad, whose movements are no longer his own, remembers what that's like. Do his muscles, now ravaged by disease, hold deep within them the memories of carefree walks on the beach? Do his limbs, now subject to spasms and tremors and forced into a wheelchair's submission, ache to be stretched and glide on their own?

I wonder if I could twirl fast enough or leap high enough to escape my own sadness over his plight, or my guilt of not being able to make everything better.

I wonder how to shield my little girl from the sheer heft of certain situations that can stop us from even leaving the ground when we try to leap.

I watch her spin and find it hard to imagine there was ever a time I moved through life with such joyful abandon, unburdened by the weight of life. Did I once whirl fearlessly through my days, never fearing what was around the corner?

Watching a parent suffer from a physically debilitating disease means learning to appreciate life in a different way. In the absence of movement, you must find the beauty and joy in stillness. It's always there, but sometimes, you can't help but wonder what it would be like to dance again.

A few months ago my daughter performed in her very first ballet recital. It was a beautiful Sunday afternoon when she took to the stage, and through a miraculous combination of divine intervention and modern wheelchair transport service, her grandfather was there to see it.

As the house lights went down and the spotlight came up, the music started and I felt myself truly exhale for the first time in months. For that one brief hour, there were no thoughts of hospitals, therapists, wheelchairs, or medications. No dark, scary tunnels in the mind. No pain or suffering. There was only music and dancing. Lightness and light.

So now, when I start to feel myself sinking deep into a case of the Mondays, that's where I go: to a place filled with movement and freedom. A place where we soar and we leap. A place not bound by gravity or any other worldly force. A place where the dance never ends.

And I know I'm not alone. As she slides her tiny feet out of her pink slippers at the end of class my little ballerina looks at me with sad, tear-filled eyes.

"Mama, I don't like it when it's time to stop dancing," she says.

Then I see a twinkle in her eyes as she leans in close and whispers in my ear.

"That's why I dance in my dreams."