Yesterday Wil and I were driving to get his hair cut. Wil always takes my phone, searches what he wants to play on Amazon music.
If he diverges from Luke Bryan he’ll say to himself, “how to spell Dierks Bentley” and type it out using phonics. Sometimes this works, and sometimes it leads to frustration and more tries. I listen as he figures it out, only helping when necessary.
Wil used to think Rodney Atkins’ name was Ronnie. He was adamant about this. But his searches lead to dead ends.
“Wil, it’s Rodney. Like a fishing rod, and your knee. Rod-knee.” I mimicked throwing a fishing line then pointed to Wil’s knee. Wil liked this explanation so gave up his strong adherence to Ronnie. Rodney became a joke between us, Wil throwing a line and hitting his knee.
There are two parts to nearly every story with Wil. As a parent, I always notice the learning happening. Always. It’s part of my every day with Wil and has been since day one. He needs extra in life, and the extra given gives back, without fail, in every experience, no matter how seemingly small.
The other part of each story is the joy. It’s pure. Because Wil is Wil. He’s all in to who he is, and that can not be faked. That’s why people are drawn to him.
There is a vulnerability to that which scares me. He can easily be taken advantage of. And yet, his vulnerability is the bravest way of being a human being without the effort to be brave. Wil is Wil.
When Wil listens to music he is all in. He rocks back and forth in his seat. As I’m driving, I sing and move my head but don’t rock at his level or I’d be off the road!
As is often the case, we will reach a destination and he wants to finish the song. I decided to match his back and forth rocking. It was a damn workout and I only matched his pace for just over a minute.
We’ve been at stop lights where people look over because he is moving so much. He never notices them looking but if he did, he’d look over and smile and keep on going without missing a beat. That’s authentic joy ~ freely sharing your inner joy outwardly with whomever wants to join in, and if they don’t he’s not bothered because he is all in.
As for me, I’m always learning too. The extra I give Wil always gives back more than I could ever give or have imagined to receive.
I saw it in his eyes. He wanted to bolt. If he found a crack in the crowd, he’d force his way through like a flower through a concrete slab. At 5’5” and 155 pounds, clad with big blue noise-cancelling headphones, people would step back startled and stare, walk around and give him space, rather than stop him.
And that’s what scared me. Where would he go? When Wil is overwhelmed in a store he bolts straight to the parking lot. He knows exactly where our car is parked. If it’s locked he’ll stand right by it. But in that state, he may not watch for passing cars.
He escaped the eyes of about 20 mothers at Crisler Arena (home of University of Michigan men’s basketball). “But he was just right here!” a startled mother said. “That’s how he does it!” I replied as we all split up to find him. A Crisler Arena employee, once I alerted her Wil was lost, spied him on the security camera. He had located the exact doors we entered, and was just about to exit the building. He was in hot pursuit of our parked car.
Today, though, we weren’t at a store. We weren’t at Crisler Arena. In fact, losing Wil at Crisler was child’s play compared to this venue. We stood upon hundreds of acres of farm field amongst 20,000 concert goers. Our only land markers were identical lamp posts installed for the concert with identical colored square boards tacked to the top of each lamp post. The colored square boards differed only by the number printed upon them, but it was highly unlikely Wil paid any attention to that. The gentle rise and fall of elevation erased any purposeful sense of direction I tried to hold onto. By the time we neared the ticket-taker, I knew only that our car was at least a mile away in the general vicinity of stage left.
I talked to Wil softly, reminding him how badly he wanted to see Luke Bryan. How special it was that his sister Elizabeth and friend CJ, and CJ’s mom, Cheri, were there too. That Riley Green was opening and he’d get to sing with Riley to, “I Wish Grandpas Never Died.” That we just had to get through the ticket-taker, and there would be loads of room to spread out and find the perfect spot. I knew Wil wanted to believe me, that he wanted more than anything to be with the country artist he listens to every day; is a fan club member of, has 2 pillows of and multiple t-shirts of, knows what town he lives in, the names and ages of his wife and children, including his adopted nephew and nieces, and every lyric of every song. I tease Wil that if there was a category on Jeopardy titled “Luke Bryan,” that he would take down the entire column against Luke Bryan himself.
Cheri and her son, CJ who is 2 years older than Wil and also has Down syndrome, were being pushed further ahead of us as Wil held his ground looking for an escape route. Elizabeth did her best to block any means of escape for Wil. Elizabeth and Cheri know how this goes; when our boys have their minds made up, there is little to stop them. I kept my eye on Cheri’s pink shirt and my body only inches from Wil’s. There was no cell phone reception.
“Can I help?” I turned around. He had a very light shade of red hair. I noticed his female partner had the same shade of hair color.
“Yes, please! I so appreciate you asking. It helps to break the spell when it’s anyone but mom.”
The blond-red haired man leaned forward to get Wil’s attention. His partner smiled kindly. They drew Wil in with questions. I don’t remember the questions they asked Wil, but I do remember the gentle, calming kindness with which they asked them. I could both see and feel the grip of overwhelm loosen within Wil. Not fully, but it was enough.
The crowd pushed forward and we started to separate from the couple. I knew Wil would quickly revert. But just as I was having that thought, a man directly to my left, that must have been there for some time but I was so absorbed in Wil that I didn’t notice said, “We will get you guys through tickets. I’m Paul. This is my wife Erica, and my twin boys Mark and Mitchell.” Then Paul, in a sideways comment to me said, “Hey, my cousin is missing a chromosome!” We shared a chuckle.
“Hey Wil,” Paul asked, “how old are you? These are my boys. They are fifteen.”
“Wil, they are the same age as you, how cool!” I said trying to keep Wil’s attention on anything but escape. “And Wil’s sisters are twins! This is one of Wil’s twin sisters, Elizabeth.”
Elizabeth, Paul and his wife, Erin, then struck up a conversation. I was thankful that the focus could now be on Elizabeth for a change.
Paul kept to his word and stayed with us. Wil never fully relaxed, which meant nor did I, but again it was enough to keep us moving forward. We made it through the ticket-taker (halleluiah!) and the security guard actually gave me a hard time for the bag I had (it was a big open bag with no pockets or compartments). I politely pointed to Wil and said it simply wouldn’t be safe for me to carry two lawn chairs, two jackets and keep tabs on him (most people, I’ve found, aren’t trying to be difficult, they simply don’t know). The security guard called his manager over — a huge, imposing man — who upon seeing us, gave us the hugest, heartiest smile and waved us on.
“Sorry, just doing my job,” the security guard said.
We broke way into the concert area and the crowds dispersed like a dense flock of birds exploding from a tree into the sky. Wil visibly relaxed in the open space and recognition soaked in.
Wil and I attended Luke Bryan’s very first Farm Tour in Fowlerville last year. We arrived later in the day, so didn’t have the experience of the crowd. However, we were backed up in traffic for over two hours which led to it’s own set of challenges. Armed with last year’s knowledge, and companioned with Elizabeth, Cheri and CJ, we were in a much better situation. Even so, there are some hurdles that must be crossed to get where you want to go.
Paul said that his family was meeting a large group of friends and we were welcome to plant our lawn chairs with them. He said that way I could relax as there would be many “eyeballs” as Paul put it, on Wil. I smiled, thanked him, and chose not to share the Crisler Arena incident.
We did in fact plant our lawn chairs with Paul’s friends and I felt more of a sense of ease. Every single person in the group was friendly, welcoming and clearly there for a good time, but Cheri and I always had one eye on CJ and Wil. CJ made a few attempts to make his way, on his own, up to the stage. He was unconvinced as to why he couldn’t go up there. He holds his own weather report on YouTube every day, and plays baritone with his high school marching band. He lives on the stage. In one forward attempt, he walked up to a pretty girl dancing and asked her to dance with him. She jumped at the chance, and even her boyfriend, who’d been standing still as a statue, broke a smile and busted a move.
Paul leaned over and said to me, “It’s a beautiful life, but I know you have challenges. Please know that you sharing Wil and CJ with us is a gift.”
Wil had become overwhelmed and fled the situation with little warning. I chased after him and tried to get him to open up. He never did.
Wil has grown greatly in his communication skills, and each time we go somewhere he grows in independence too. However there are multiple stops that must break way to starts. The unexpected throws Wil off and we find ourselves at a standstill. It’s all part of the territory, but at times the repeated standstills weigh on me.
I’ve heard you need to fight for your joy. And some days I do. It seems the only way to get through at times. But whenever I take a deep breath, step back, open my eyes (and ears), I’ve found joy has a way of letting itself in.
Last Wednesday night McKenna Marsh, a senior at Wil’s school, came over to watch Wil while Matt and I had a date night. Though we know McKenna and her family, this was the first time she would be Wil’s caregiver. Wil was very excited about this (as was I) so when McKenna arrived he ran to the door to let her in. We walked to the kitchen and started chatting. Wil’s high energy fell to silence.
“Wil, you are very quiet. I know you are excited to spend time with McKenna. Is something on your mind?” I asked.
He tucked his head, and with a coy sideways smile at McKenna said, “I’m feeling a little bit shy.”
Joy flooded through me! Wil hadn’t retreated into deeper silence. He hadn’t run away. I hadn’t asked multiple questions to draw out his emotions. He opened up of his own will — by being a flirt!
The next night, driving home from Special Olympics golf, with the windows down and country music blasting, Wil and I belted out the country songs at the top of our lungs.
“Mom look!” As I rounded a curve, off to the right, hanging low over a wide-open field, the sun was an oversized fiery pink ball. Scattered clouds absorbed its color creating a brilliant sky. We fell in silent awe.
Wil and I looked at each other with easy smiles and synchronously resumed our loud and off-pitch tunes. I never regret the weight of this territory, otherwise I may never know such heights.
Think being light-hearted doesn’t hold weight? Even in serious matters? Just ask the fly who won the vice-presidential debate.
Just ask an elementary school teacher how a whisper quiets an entire classroom.
Just ask a parent of a child with Down syndrome.
When Wil is feeling heavy, he has a hard time getting out of his own way. Even in serious matters. He’s decided, in the middle of the Saline post office parking lot, that he could not take another step. He sat down, cross-legged, half-way between our car and the post office door. Smack dab in the middle of the parking lot. Reminding him of the dangers held no weight. It was my singing to him that elevated his attention. It was Elizabeth’s offer of a piggyback ride that lifted him off the asphalt.
Wil can be equally heavy in the morning. No reminders of being late for school hold any weight. It is laughter that puts a new spin on the morning. But then there are the mornings when I’m not feeling the laughter. How do I share it if I’m not feeling it? And yet, every morning Wil demands my laughter or he falls heavier into his pillow.
After our hugs last Thursday morning, I tried a few familiar tactics to lift Wil, but nothing worked. Wil remained heavy in his bed. My reserves were empty. But I knew I had to dig deeper. I had to find something to cut through the heaviness. Somehow, from somewhere, I found myself talking to Wil in a new language: “Wharbargargrrrr, Wil! Grrrarrberrrargh!”
Wil sat up. “Wharbargargrrrr!” He replied.
“Time to – warrgarrrberrgarr – get – brrrgarrr – dressed!” I said.
“Ok – wharargrrrrrr – Mom!” he said. Yes! I thought.
I walked into the kitchen to make his breakfast and hollered back to his bedroom, “Whargarbrrrrgrrr, Wil!” He peaked his head around the edge of his doorway and yelled back “Wharbarrgrrr, Mom!” I laughed and thought to myself, I had not only busted through Wil’s heavy walls this morning; I busted through mine too.
Elizabeth was sitting at the kitchen table, eating an English muffin. “Are you talking Taz?” she asked, meaning the Tasmanian devil cartoon.
“Umm, yep!” I replied. (I guess it wasn’t my language after all. Thanks Taz!).
Though at times I wish lifting Wil were easier, I find myself thankful for the times that he’s not. It is in these times I have learned that somehow, from somewhere, even when I’m not feeling it, I can bring forth a light-heartedness. Once released, it creates a forward-moving momentum powerful enough to bust through the walls of heaviness.
Just ask Taz. He tornadoes through the boulders every day. “Whargarbrrrgrrr!”
'WIL'ingness = Willing to Embrace Extra in Life 