Holding On

Holding On

She wouldn’t let go.

It had already been a Plan B day for me. I woke up to the sound of the dog retching. The disposal had clogged the day before, causing the dishwasher to flood my kitchen that morning. And my sitter called in to let me know that the 24-hour bug she thought she had was more like a 48-hour one so she couldn’t help me.

But by the time Madison arrived, I was ready. We were set to celebrate her 22nd birthday thanks to my longtime friend, Al, who single-handedly unclogged my disposal, fixed the dishwasher, and volunteered to fill in for my absent sitter.

The presents were wrapped. The table set. The pizza was on the way as well as Madison’s dad, step-mom, and brother. And the ice cream cake was thawing per instructions so it would be easy to cut.

Madison arrived accompanied by Al and also Pat, our family caregiver who’s been with me for over 20 years. Madison was happy and singing, but after giving me a quick kiss and a cursory hug, she made a beeline to my wrapping paper drawer where she fetched a large gift bag, per tradition.

“She’s going to the basement,” I hollered to Pat who was still bringing in leftover snacks from the van. I wheeled over to the top of the steps, parking my wheelchair so I could see. “I think she’s just getting her tapes.”

Usually she just grabs a few tapes, “shopping” in the basement bins of VCR tapes I keep for her. This year she took five tapes, including Barney’s “Families are Special,” and Mary Kate and Ashley’s, “The Case of the U.S. Space Camp Mission.” But one year, she tried to take the TV—off the wall.

She came bounding back up the steps before Pat made it in, breezing past me. “Now she’s going upstairs, Pat. Probably just getting Barney.”

Again Madison came down quickly, then plopped herself at the kitchen table and carefully placed her bag now filled with Barney and tapes on the table. After a few slices of pizza, she grabbed the bag and stood up, looking toward the door.

“Not time yet, Missy,” I said to her, touching her arm. We were used to short visits—staying too long or including too many activities would often provoke upsets. But it was her birthday. Surely I could stall her a little longer.

And the battle of wills began.

“Look at me,” I said to her. “Time for presents.” And we rifled through the presents as she still clung to the bag.

“Say, ‘Thank you, Cindy,’” I prompted, paused, and waited as she finally repeated the words. “Say, ‘Thank you, Daddy. Thank you, Zander.’” I coached and she complied.

She stood up again.

“But Madison, you have cake, a yummy ice cream cake.” It was actually a frozen yogurt cake featuring Madison’s favorite snack flavors, peanut butter and graham cracker, that had been artfully crafted by my son’s girlfriend. She’d garnished it with a new treat we decided to try, Reese’s peanut butter cups.

Madison sat down again, still clutching the bag with one hand while she began picking off the peanut butter cups with her other.

“Wow, Madison, you like it! Good job. Now let’s try the cake.”

But she couldn’t. Normally she uses two hands to eat—one to hold the plate and one to use a utensil. But she wouldn’t let go of the bag.

“Alright then, Madison. Mommy’s going to feed you. I think you will like it.”

And spoonful by spoonful, she devoured the cake slice, still holding fast to her bag.  Cindy offered to take pictures, snapping away while I fed my 22-year-old daughter.

Madison stood up again. This time there was no stopping her.

“Give Mommy kiss.” And she managed to plant one on my cheek with a one-handed hug.

She’d reached her limit and I guess I’d reached mine. I had to let her go. After a few more one-handed goodbye hugs, she left, Al and Pat driving her back to her residential home.

We didn’t get to sing Happy Birthday. We didn’t get to light any candles. We didn’t get to change her pizza streaked shirt nor even wipe the sauce off her mouth.

But we got some priceless family pics. And I guess we celebrated Madison-style—holding on tight to the time we had.

This column was originally published as part of my “Tuesdays with Madison” series at AutismAfter16.com.