Thursday, March 20, 2014

World Down Syndrome Day: A Day in the Life of Max


It happened again, just like it happens every night. Sweet dreams born of warm blankets and a cozy bed broken as his 3-year-old body plummets eight never-ending inches to the cold, hard, wooden floor.

"Uh-oh." It's 5:30 am and Mommy hears the tell-tale thud from the kitchen where she prepares her lunch before heading off to work. She freezes, waiting.

Click. Max's door opens.

"Please, don't wake the baby. Don't wake the baby. Don't wake the baby," whispers Mommy. She can hear his quick steps as he pads across the hall to join his snoring Daddy in the big bed.

Max pushes open the door. Boy it's dark. He shuffles toward to the foot of the bed, hoists himself onto the cedar chest, left empty for just this purpose, and up onto the bed. The covers are tangled and messy but he easily makes his way toward the pillow that Mommy left behind an hour before. He nestles into Daddy who lifts the covers.


"Shhhh..." Says Daddy. "Time for sleep."


"Shhhh.... Sleep."

It's not long until his breathing slows.


"Oooo! Oooo! Oooo!" Max is pointing at the snack cupboard.

"No, Max. It's time for breakfast. Want pancakes?" Laura, with plate in hand, leads him to his his plastic table in the corner. She holds the plastic chair still as Max shimmies on.

Daddy enters, his shirt newly pressed, his tie hanging undone around his neck. "Morning. Amy'll be home at the usual time today."

"No problem," says Laura.

Daddy leans down to kiss Max on the head and waves. "Bye-bye, Max."

"Say 'bye-bye,' Max. 'Bye-bye.'"

Max throws his hand into the air. "Bah-bah. Bah-bah-bah-bah."


"No, Max! No!"

Max is standing at the bottom of the stairs, toy truck in hand, arm cocked back ready to fire. Laura lunges but is too late.

Boom! The truck slams into the wall so hard surely it'll leave a mark.

"Don't wake up. Don't wake up. Don't wake up...uh-oh. Max, you woke up your brother."


The clock on the radio reads 3:25 when Mommy arrives. The children are already on the playground. so she backs into the parking spot to get a better view. It's not hard to find Max. Like every other day, he's on the swing. Miss Becky steps away from him to help a little girl and he begins to slow. He doesn't like this. He crosses his arms in front of himself and very forcefully flings them outward. "All done. I'm all done!" he signs, but no one notices.

He's getting frustrated, and Mommy's feeling anxious. She waits, but just as her will power gives out  a little boy swoops in and gives Max a huge push. Mommy can't hear Max's delighted giggle but as she watches a grin spread across his face she can feel one spread across hers too.

The clock now reads 3:29. It's time. On cue car doors begin to slam as mothers, a few fathers, and a grandma or two make their way toward their kids. Mommy's coat is the same long, fluffy, black down as half the other mothers and her hair is pulled into a messy utility bun, but Max, who has been scanning the parking lot, spots her right away. His hand flies up, thumb toward his chin with fingers pointing upward. "Mommy! Mommy! Mommy!" he signs again and again. Mommy's heart leaps.

"Hi, buddy!"


"He had a great day," says Miss Becky. She slides the straps of his backpack over his shoulders. "We went to the movement room. He's gonna be tired tonight."


"Hugh!" Mommy grunts as she heaves Max out of his car seat. Laura opens the side door and reaches for the back pack dangling from Mommy's wrist.

"Is he asleep?" Mommy nods. As she approaches the couch Laura slides off Max's sneakers and together they remove his heavy coat. He stirs but doesn't wake.


"First chicken, then biscuit." Max bats away the fork.

"One, two, three!" Daddy makes a break for it with the kiddie fork. Success! A few quick chews, swallow, and then biscuit.

Round two. "Ready? One, two, three!" Success, again! "Yeah, Max!"

"Yaaaahh!" Max claps. "Wah, wah, wah, wah, wah." He reaches for his cup. After several large, loud gulps he gasps for air, hands Mommy his empty cup and reaches for the biscuit.


 "Time for bed?" Daddy grabs the footie pajamas that Max is holding. "Say 'Nah-night' to Mommy."

"Goodnight, sweetie. I love you." Mommy kisses Max's cheek. He waves over Daddy's shoulder as he goes upstairs.

A moment later Daddy returns. "He's out."

"Oh, good."



Click. Max's door opens.

"Please, don't wake the baby. Don't wake the baby. Don't wake the baby."