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

Boom!

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.

"Ha!"

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

"Ha!"

"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!"

"Hah!"

"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."

Boom!

"Uh-oh."

Click. Max's door opens.

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

Guest Post by Marty Green: I Love Being a Grandfather

Today marks a first here at My Boy Max. We've ventured into "guest post" territory, and I'm down right excited about it. This inaugural post is brought to us by none other than my very own dad--a.k.a "Pop" to me and "Papa" to the kiddos. I started bugging him a few months back but as life is wont to do, it got in the way. Then a few days ago this little gem showed up in my inbox. Enjoy!

Max with Papa, August 25, 2012

I love being a grandfather!  OK----I’m not crazy about being old, but being a grandparent is a nice offset to creaking joints, age spots, and ear hair.  My move from carefree middle age to grandparent happened 9 years ago when our oldest son Andy and our daughter-in-law Nicole presented us with AJ.  At the time, my wife Barb being the practical, organized, plan-a-header that she is asked, “so, what do you want to be called?”  Sensing a trap I replied, “Well, King of The World would be nice.”  “No no”, she said.  ”What do you want your grandchildren to call you?  You can be Grandpa, Grampy, or Papa.” 

Hmmm, I had to think about that.  I decided it was a good idea to choose a name ahead of time, otherwise I might wind up being called Bumpa, Uncle Green, or, gulp, Old Man.  Grandpa was too ordinary, Grampy sounded too much like Grumpy but Papa was just right.  The more I thought about it the more I liked it.  In my romantic musings I would become like Papa Hemingway, patriarch of a vast brood that doted on me in my declining years, which, by the way, have already started.

Soon, Nicolas came along and AJ had a little brother.  Now we could have week-end sleepovers, forbidden trips to the ice cream shop, and non-stop play days, no chores allowed.  And the best part, after I had completely destroyed all of the good habits my kids were trying to instill it was time to take the grandkids home.

And so it was with a sense of joy, pride and eager anticipation that we accepted the news that Amy and Sean were going to have a baby.  But then, the dreadful news, something was wrong.  There was an abnormality.  The baby was not going to be “normal”.  The sentence was Down Syndrome.  I was devastated at first, but not for me, I was just a grandparent.  I was heartsick for Amy and Sean.  What did this mean for them?  What sacrifices would they have to make, what hardships would they have to endure, and what would it mean for a child in this condition?

After a very bittersweet pregnancy Maximus Alexander Lanagan came into this world and everything changed.  No longer was Down Syndrome a stigma, no longer was his disability a sacrifice.  His presence in our lives immediately changed our perspective forever.  He was a blessing.  Max became our very own “Profile in Courage”.  At 4 months he had to endure major heart surgery.  I’ll never forget visiting the intensive care unit.  It looked like the bridge of the Starship Enterprise; video screens and monitors covering an entire wall beeping and flashing.  Nestled in the middle of it all in a tiny basket was my courageous little Max with a scar from breast bone to navel but still fighting.  Soon after, he was fitted with glasses because of his poor eyesight.  He took it all in stride, wears them when he wants to watch Mikey and throws them away when he gets tired of them.

Amy said “I can’t wait till he walks.”  I said, “Be careful what you wish for honey.”  He’s not walking now, he’s running.  One of my favorite times is knocking on the door at Amy and Sean’s and waiting for Max to open it.  His pure unadulterated joy at seeing me just melts my heart.  Max can say my name using sign language now and he’s starting to make some sounds that could be words.  Maybe his first word will be Papa!