Life with Mikelle

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Life with Mikelle:  Balancing our Special Needs

 

I thought living with my daughter would either be intense, even feverish. or cool and somewhat detached. After all, I am the “backup” her “just-in-case” person, the one she will use as needed, like a first aid kit. But, as any special needs parent knows, both scenarios are true.

Life with Mikelle is organized chaos. It is a purposeful beehive of activity that buzzes around the 1,200 square foot condo on the second floor of a mid-century, mid-rise building at the corner of two one-way streets.  Roommates, present and former, therapists, family, friends and six cats move in a collective rhythm.

I head for the kitchen and fill the bright red teakettle with water placing it on perhaps my favorite appliance ever, the black gas range sandwiched between the zebra-striped granite counter tops Mikelle chose when we were able to create the funds to remodel her aging kitchen.  I open the refrigerator, grab a grocery store plastic container, take the lid off, and smell the pleasure.caribbean

“Here, smell,” I say, waving the container under Mikelle’s petite nose that is barely big enough to hold her red designer eye glasses.  She curls her lip and wrinkles her nose, unimpressed with the sweet smell of Caribbean curried chicken.  The pungent, spicy, complicated dish is rich with earth, sea and sky.  Exotic juices meld into Yukon gold potatoes, shredded broccoli stalks and sliced brussel sprouts, all topped with crisp baked kale.  My fabulous dish, however, does not impress her fast-food palate.  To me, this dish smells like a second home, an island home far away, and it brings back memories of coral reefs, glass-bottom boats and dark-skinned men with big white smiles.  For Mikelle, the aroma conjures up no fond memories and means nothing to her.

The aroma most precious to Mikelle is that of coffee shops and Frappuccinos.  These smells bring her back to whispered laughter and warm, reminiscent stories, gentle teasing, to a time when her life worked so well, she was at the top of her game, and life was ripe with possibilities.

Her long slender fingers, gripped with spastic muscles, reach for her iPad as the edge of her fingernail clicks as she touches the aging screen, now cracked from one too many tumbles on the polished brown cement floor of her condo, a floor strong enough to endure the gripping tread from the tires of her cherry red wheelchair.  I marvel at her tenacity and revel in her squealing voice as its pitch accelerates as she manages to implant her thoughts on the glowing screen.

“Can you take me for a drive?” she asks as her electronic voice echoes down the hallway.  “I want to go to Starbucks.”

I wonder how anyone could be so thrilled about coffee and never be satisfied with just one cup.  Is it the smell she savors?  Or the simple adventure of leaving the house?  Do the baristas intrigue her as they offer conversation?  Is it that Starbucks has played an essential role in her life after high school?  It was, after all, where she met the friends who first believed in her dreams.  Ian and Chelsea continue to celebrate birthdays and holidays with us.  Does she hope to find another special someone among the metal chairs, long rough tables and soft lights?  Or is it the drive which gives her respite from having to manage it all – the chair, her body, her life?  Is falling into a Frappuccino a meditative state for Mikelle?000_0010

Meanwhile, I drop a green tea bag into the mug Mikelle gave me for Christmas last year, the one with the “K” stenciled in gold on a white and blue background.  I reach for the kettle and pour boiling water over the bag, watching it expand like a balloon and float to the top of the mug.  I cover the mug with a small white saucer to let the tea steep, and sit down on the plantation chair near the window in our cozy living room.  Kicking off my shoes, I pull my feet up under me and cover myself with a small furry blanket.  As I sink into the woven rattan fibers of the chair, I gaze out the wall of windows over the busy street.

Time stops for just a moment, and I collect my thoughts.  One cat jumps into my lap, another sits close to me hoping for some extra love.  Over the past several years, my physical strength has developed, and I bask in the fact that I am also as emotionally strong as I have ever been.  I am more adept at balancing Mikelle’s need with my wants, even though my attempts at creating a routine are less successful that Mikelle’s.  While I juggle my life as I learn to dance, make efforts to become a writer and find abundant reasons to attend numerous meetings on systems change, I wonder if I accomplish much of anything.

My dear daughter, Mikelle, focuses on what she needs…and I guess also on what she wants.  That would be a nice drive, a good laugh, a little shopping and, of course, a Starbucks.

 

About Katherine Carol

Special needs & community expert, speaker, co-author of The Tango of Publishing and Shining Beautiful, with Mikelle Learned, book coach, mom, and community builder.

Comment

  • Hannah

    January 23, 2016 at 2:40 pm

    Mikelle is thin, petite (small like me), and she’s 28 years old! But why does she drool? This is not good news!

  • Hannah

    March 19, 2016 at 10:23 pm

    -Mikelle has cerebral palsy, right? Why is she in a power wheelchair? Why did you send Mikelle to a normal school and NOT a special school?

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