Thursday, December 6, 2012

St. Nick's Dilemma

 One fine December 6, Saint Nicholas went on his annual trek, providing tidbits of good cheer to the down-trodden.  Whistling merrily as he worked, he thought to himself, “Everyone loves my ministry.  Surprises and sweets and all good things I bring!”

He whistled his way around the world, filling shoes set carefully by the door of each home with gold-foiled chocolate coins.  Just to be fair, his bag of treats included dairy-free, gluten-free, peanut-free, and sugar-free sweets.  Good old St. Nick, he kept his eye on modern nutritional issues:  He had covered it all.

Or so he thought, ‘til he reached the home of a teenage girl whose shoes remained firmly on her feet, even as she slept.

She awoke, howling in anger, as he untied her shoes.  “I want to fill them with candy,” he explained.  Her stubborn stare nearly deterred his benevolence.  “I have truly heavenly candy,” he extolled.  “I’ll give you the ones with peanut butter inside,” he enticed.  “What do you care about shoes!  You can’t walk anyway!” he exploded in exasperation.

The girl’s unwavering gaze sliced right through St. Nick’s merry grin.  “I like my shoes.  When I have my shoes on, I might get to go somewhere, to meet someone, to do something,” she told him.  “Even if I can’t walk there,” she added.

Then, as St. Nick’s face registered only confusion, she continued gently, “You never know when a miracle is going to happen.  You have to be watching and ready.”

“So,” St. Nick appraised, “You’d forego the certainty of shoes filled with treats to be ready for the uncertain adventures of life?”

“It’s a brief journey,” she explained, her bright blue eyes never leaving the gray, time-worn eyes of the Saint.  “I’m not about to miss a minute of it.”

The old Saint looked at his bag full of glittering foil-covered chocolate and simulated-chocolate-like-substitutes, and knew she was right.  “Peace be with you,” he said as he carefully re-tied her shoes, in double-knots.

Be watching. Be ready.  Be there.

Saturday, December 1, 2012

What Are You Waiting For?

Yesterday was my Kyra’s birthday.  Today is the 1st day of the Advent season.  I love that Kyra’s birthday coincides with the advent of Advent, the season of anticipation and hope.  God’s eloquence in action.

Today, Kyra and I placed the first ornament on our Advent calendar: a cloud slicing the moon in two.  What better way to start out the season of hope? Without a dark cloud looming, threatening our only light, what do you need hope for?

Our family fervently hopes that our dark cloud will dissipate with the miraculous healing of Kyra’s disabilities, and life will become as we expected it to be when Kyra was born, at 12:32pm, November 30, 1995.

But a small part of me wonders, do we really want that life?

Daily, I pray for, beg for, and anxiously await a quick and miraculous healing of Kyra’s disabilities.  Yet, while I anticipate that healing, I’m dubious of its value.  Just as she is, Kyra is a powerful force, welcoming everyone with a love and acceptance I am ashamed to admit that I do not exhibit myself.

Yesterday, I witnessed Kyra’s power in action as people honored her 17th birthday with gifts, phone calls, text messages, cross-country flower deliveries, and donations to Special Olympics Iowa.  At her bowling party at Perfect Games in Ames, Iowa, families, single mothers, empty-nesters, college students, disabled teens, middle-school students, and senior citizens cheered each other on, offered condolences for gutter balls, and generally celebrated life.  Together.

I know that Christmas shopping for someone with severe disabilities is difficult, so I'm offering few humble suggestions.  If in doubt, please ask parents/guardians for direction.
  • Nuts about Nuts: My Kyra LOVES peanuts, walnuts, almonds, any kind of nut (yes, I know peanuts are legumes… but humor me here…).  If your disabled loved one loves nuts, wrap up a jar of peanut butter (or almond butter… walnut butter… etc.), along with a note that you have sent a  donation to Project Peanut Butter, an organization working toward ending starvation and nutritional disease in mothers and children in Africa.
  • Sports Nuts: Does your family thrive on friendly competition? Special Olympics is a great social and competitive outlet.  My Kyra participates in a fall Bowling league, and spring Track & Field events.  Consider giving your disabled loved one tickets to a local sporting event (along with a ticket for a parent or caregiver), with a donation to the Special Olympics organization of your state.  (Kyra's "pennies for pins" birthday bowling bash raised over $140 for Special Olympics Iowa!)
  • More nutty ideas:  Special-needs equipment is obscenely expensive, and funding for essential items is often not covered by medical insurance, and out of reach for most families.  Find out what the family needs, and get creative with the delivery!  A few dollars toward a surveillance device for families dealing with severe autism, or an iPad for a non-verbal family member, or accessible home renovations for families with mobility issues, is greatly appreciated, but not much fun to give or receive.  So, get creative!   If the family needs a new bathroom, write a check to the parents, and wrap it up in some pretty holiday towels.  If a surveillance system is necessary, slip a check to the parents in the pages of a photo book you’ve created with  Is an iPad the ticket?  Give iTunes gift card along with a cheesy musical ornament.

    Whatever you choose, be aware of where your dollars go:   Write checks to parents, guardians, or a special needs trust, if there is one, to avoid jeopardizing government eligibility of financial and medical aid.  If in doubt, ask!

Do not fear; though light may grow dim through anxious, sleep-deprived eyes, it can never be extinguished.
Peace be with you.