Finding the Joy

Hi folks!

This week’s inspiration comes from Madison, my 23-year old daughter with autism who continues to teach me so much about life—and love.

Madison resides in group home and attends a day program about an hour away. She’s adjusted to the adult services programs, is well-cared for, and most importantly, is loved to pieces by all those who work with her.

However, even though we’ve had a couple bright spots, it’s been a rough year for my Madison. I keep waiting for her life to settle down. For the new meds to kick in. For the behaviors to decrease. For my smiling, laughing, endearing Madison to come back fully—without hitting herself. Without bruising that beautiful face.

It’s also been a year of tremendous effort and extraordinary care, including two hospitalizations, multiple trips to the ER, new doctors, meds, routines, more therapists, and additional cause and effect tracking of behaviors. Still, there are far too many unknowns. Sometimes I get tired of all the unknowns.

When will she get better? Will she ever get better? Will I ever be able to take her out to lunch again? Is this her new normal?

Yet the holidays come—despite all the unknowns and wishful thinking. That dang calendar reminds me relentlessly of the days that need celebration. And my distilled memories come back to me just as faithfully, reminding me of how full and joyous those days can be.

Floating holidays help. I pick a time that works best for Madison and her caregivers, plan for the happy-mad-sad-Madison possibilities, and execute.

My best visits are food-based and short. I bring in a meal from McDonalds (where we used to go out for lunch) and include her favorite snacks from home—fig newtons, nutrigrain bars, and Cheetos. We gather in the conference room at her day program, eat, chat as best we can with her limited scripted speech, and then hug and kiss goodbye.

Thanksgiving, however, was an epic fail.

After scheduling the visit, I made a special Thanksgiving dinner—just for Madison. I roasted a turkey, made stuffin’ muffins, marshmallow-topped sweet potatoes, the famous green bean casserole, and even baked turkey-themed cookies—ok they were bake-and-serve, but it’s the thought that counts, right?

I unloaded my prized dinner on the conference room table, plated it, and placed it in front of Madison.

“Happy Thanksgiving, Madison!” I said, hoping she would repeat it back to me as I know she sometimes can.

But instead, she looked at me, shoved the dinner away, and said simply,

“Cheetos, please.”

I shook my head and had to smile at my strong-willed daughter, who knows exactly what she likes. She never ate one bite of that meal.

So for my Christmas visit this week, I went back to basics. She devoured the McDonald’s food, snacks from home, and then spied the gift bag I brought.

“Presents, please,” she said, surprising me with one of her few spontaneous requests.

I helped her unwrap the gift, a Rudolph the Red-Nosed Reindeer play-a-sound book that included a cuddly Rudolph doll. She looked at the doll, the book, and then let me read it to her.

When I pressed the first button, the Rudolph song began—and she giggled! Then laughed, flashing a smile I’d not seen in a very long time. Even though it was only an instant, too quick to even snap a photo, joy filled every bit of the room—and my heart. Despite all the rough patches and unknowns and wishful thinking, there is already great joy in this holiday.

Madison’s joy—and now mine.

How about you? What small joys are you finding to make your holidays full? I’d love to know.

Wishing you love, laughter, and a holiday filled with many joys, both great and small.

My best—always,

Becky

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