Extra-Awesome

It was 7AM. Wil was lying on his back with his chin jutted up and mouth wide open; soft snores were given free passage. I gently placed my hand on his shoulder. I felt his body give a quick shudder of awakening then his mouth snapped shut and he flipped his face to the wall, all without opening his eyes. He knew it was time to wake up for school.

Getting Wil out of bed is not the process it used to be. Last year some days could take thirty minutes of creative coaxing. And even that would not ensure a productive day at school. This year, however, his maturity has expanded. He’s had time to grow into his changing hormones that blossomed a year ago. He’s well into his second year at the middle school where the teachers, his paraprofessional and environment were all new to him. Consistency is everything to Wil. 

When in-person school was halted because of the pandemic last spring, Wil realized within himself the consistency he needed. Friday has always been Wil’s favorite day of the week and lunch has always been his favorite subject. How can you beat pepperoni pizza day? But lunch time is not just about the food, it’s about time with friends. Time with friends at school is what Wil missed the most during virtual schooling. Wil is just as excited for Fridays as he ever was, but now he’s excited for every other in-person school day too. 

Though our morning process has dramatically shortened due to Wil’s growing maturity and his boosted appreciation of in-person school, Wil is still, well, Wil. To motivate Wil, you must be on the same page as Wil. Force only sets you back; but an offer of a piggy-back ride may get you where you want to go. Negotiation falls flat; but bribes can be counted on. If he put the amour on tight that day, a sure-fire way to put a chink in the chains is through silliness. 

 “Waky, waky, Wil.” I started tickling him.

“Ok, ok,” he laughed, his head still turned to the side. “I’m up.” Then he fake snored. I laid across him perpendicularly, arched on my back, and let out some good ol’ cartoonish snores complete with a whistle (the only thing missing was a feather floating up and down).

“Hey moooom!” I kept snoring, ignoring him. Wil sat up in bed and pushed me off. “It’s time to get up!” I made a dramatic rolling fall to the floor. I knew now our morning was rolling in a forward direction.

“Mom, hug!” Wil never gets out of bed without a hug. Wil insists on it, and I never want him to stop. Because it’s what makes me stop. 

Before Wil was born, I thought raising a child with an extra chromosome meant you were born with something extra, too. But that’s not the case. It’s in taking the time to understand Wil’s way of thinking, and jumping full-in, that adds extra value to my everyday life.  Complete with extra daily hugs to back up that extra-awesome fact. 

Flipping the Coin

“Mom walks very fast,” Wil said.

I looked behind me, and smiled at Wil. “I do walk fast, don’t I? Would you like me to slow down?”

“Yes, please.”

I stopped, my head turned his way as he walked up and stood next to me. I slipped my hand in his, and we walked forward. I was careful to keep pace with him, and not the other way around.

His hand was soft, his smile was sweet, the lights above brighter, and I felt brighter inside, too. All around me life felt softer, higher, more enjoyable. I breathed it in. Wil noticed my breath, and he mimicked my large inhale. We both broke up laughing. I vow to enjoy this pace more often.

Wil flips the coin every day. While some see his pace as a detriment to his quality of life, I’ve come to know his pace as a great asset in absorbing the multiple qualities of life all around us — at any given time or place.

Stepping Into the Real Story

There is a book called “Count Us In” that is written by two young men with Down syndrome (and as the book’s description adds: with some word processing help from their mothers). This book was a symbolic “coming of age” for me.I started out reading beautiful books such as “Gifts 1: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives” and “Gifts 2: How People With Down Syndrome Enrich the World.” I highly recommend these two books over and again. They were immensely helpful to me (I foolishly brought Gifts 2 on a plane ride and found myself in happy tears instantly.)

Oftentimes, the hopes and dreams we had for our child are immediately transformed to enormous question marks when we receive the initial diagnosis. This leaves an enormous void. What do we fill that void with? What new hopes and dreams can we dream? That is where real stories from real people come in. They help answer these questions and create new hopes and dreams. The void begins to fill. But there are still so many question marks. Gifts 1 & 2 filled so much of the void I was feeling. I began to dream new dreams and hope new hopes. I was so emboldened that I moved on to the book, “Count Us In.” What could be more inspiring than a book written by two young adult men with Down syndrome?

I don’t remember how far I made it through this book, but I had to put it down. I cried again, but this time big, sad tears. I wasn’t ready for this book. What specifically go to me was this: the young men’s speech delays were clearly evident in their writing. I wasn’t ready for that level of reality. The void I felt was still too raw, too fresh. I thought I had filled it, but after getting into “Count Us In” I knew I had more accepting to do. Or maybe more accurately speaking, more “knowing and experiencing” to do. In those early days what I needed was hope and faith in a very broad sense. I needed to read real stories from real people showing me that my son had a beautiful life ahead of him. They showed me to way to dream new hopes and new dreams. I wasn’t ready, though, to understand the intricate realities of the daily walk into those new hopes and dreams.

I returned “Count Us In” to the library and picked up those “Gifts” books over and again. As each book has a series of individual stories, as a busy mom, I reveled in the fact that I could open the book to any page and read as briefly or as languishly as I chose. Now, 13 years later, I am as inspired as I once hoped to be with “Count Us In.” (And I continue to absorb and read the stories of Gifts 1 & 2) So what has changed? I have now had the benefit of walking into those new hopes and dreams. This life is up close and personal instead of new territory to navigate.

When I watch Wil read 2nd grade level book, I know every single step it took to get to this place. I’m so proud of him, proud of his teachers and proud of our family. We have all seen every single step of his progress, and it’s an absolute joy to realize every triumph. Nothing is overlooked or taken for granted, and when you live that way, life is a good place to be.My twin girls are starting to drive. Wil sits in the back seat and teases them and they tease back. We have worked so hard on back and forth communication with Wil, and this is how it’s starting to emerge. I sit in the passenger seat listening and loving what is happening. My girls are driving and my son is teasing them. So darn typical! And still, within that typicalness, I could jump through the roof with my gratitude for it all.

Now when I read “Count Us In” I’m so proud of these young men, and I’m proud of their word processing mothers. I’m also thankful they took the time to share their lives with us. I’m also thankful that I’ve walking into a place where I can rejoice with every word they have written, in full and very real detail. Where at once I felt disconnected, I now feel more connected than ever.

We all have our own timeline for getting to where we want to go. And sometimes, it just takes some extra steps to get there. When we do arrive, we know, because we are the ones who have taken those steps. Even better, there are always new hopes and dreams to step(or crawl) into.