I was about two years younger than Wil when I hopped a fence with my friends. The top of the fence caught the back pocket of my favorite jeans and ripped them. I was devastated. Then my mom found a butterfly patch and ironed it over the rip. I loved that butterfly patch. Those jeans, once my favorite, now held special meaning; a memory I hold nearly 40 years later.
Those jeans, though a simplified analogy, are resemblant to raising a child with special needs. The diagnosis — the unexpected rip. The devastation.
But you don’t know about the butterfly yet.
In just this last week alone, I received a text from Wil’s friend, Lila Harvey, sharing a photo of what she called Wil’s “awesome hair.” Wil had piled up his sweatshirt on his head. I also received a video clip from another of Wil’s friends. The video showed not only Wil sinking a free throw in gym class (she told me he sunk two), but also of his friends jumping up to cheer and congratulate him. I received another message that Wil’s Connect friend, Jacob Mann (Connect is a program that connects typically-developing students with students who have special needs), is going to help Wil deliver a joke in the school announcements on Monday. I also received a photo of Wil and another of his Connect friends holding pizzas they had made on English muffins. Thursday night, Elizabeth had a basketball game in Chelsea — Wil entered wearing his noise-cancelling headphones. The ticket taker made a special effort to be friendly with Wil. When Wil and I sat down in the stands, he laid his head on my shoulder multiple times. He’s never outgrown such shows of affection.
These are the threads of the butterfly. They are not large in size, but they are brilliant in color and meaning. The butterfly is personally delivered with nothing expected in return; the giving as transformative as the receiving. The butterfly is the gift of seeing anew what you once believed to be lost. The butterfly does not take the rip away, nor should it. The process of melding the butterfly to the rip is what creates special meaning; and memories you will hold close for years to come.
The girl stood behind the hospital wheelchair and clasped the narrow top of the plastic seat. Her mother, standing beside her (both about the same height) grabbed a handful of the girl’s pale blue shirt, directly at the small of her back, and wrapped it tight around her fist. The girl stepped forward, wobbly and deliberate, landing each step on the outside edge of her shoes, with a deeper bend in her left leg. I would guess the girl to be fifteen or sixteen years old, not solely by her height, but by her desired independence – her mother’s expert grip allowing for this.
Further down the hallway the mother asked, “Are you hungry?” The girl nodded. “Well, let me push you then.” The girl kept walking.
“I know you don’t want to sit,” the mother said, “but we can get to the car faster for lunch. Come on, we’ll play race car.” The girl conceded, and supported herself along the edges of the wheelchair to take a seat. The mother grabbed the black-capped wheelchair handles and sped forward.
Just last week I left Wil home alone while I took his sisters to school. Wil was stuck on which hat to wear. He’d been sitting in front of his plastic bin of hats for 20 minutes. “Sorry, Wil, time is up,” I said. “I’m taking your sisters to school because it’s not fair to make them late. I’ll see you in a few minutes.” He looked up at me and back down again, but didn’t budge.
On our drive to school Elizabeth asked, “How late do you think he’ll go to school today?”
“Your guess is as good as mine. When I get home he’ll either still be stuck on the floor, or blasting his iPad to Luke Bryan thinking he has the day off, or running away in the back field.”
When I turned the car back into our driveway, Wil was seated on the porch steps. His coat and backpack were on – he had put them on himself. Wil’s morning, though wobbly and deliberate, was also deeply triumphant for these things.
It is easy to grow impatient, as hesitations are built into our everyday – I understand the wheelchair race car game well. I was having coffee with my friend, Laura Walsh, whose son Manny is also a teen with Down syndrome. We were sharing stories about mornings with our boys. Manny was taking his time getting dressed. “Put your freaking shoes on already! I wanted to scream. But of course, I took a deep breath and was calm.” We laughed so hard over that. Our patience may seem supernatural on the outside, but some days our brain begs to put the pedal to the medal.
Our stories have been looked on with pity or sorrow. Our stories have been dismissed with careless derogatory words. Our stories have been seen as reserved only for “special” people. But when you really take a moment to observe, though our stories of navigating independence with our children may look different, in our own ways we are all wobbly, hesitant, deliberate, impatient and holding on tight to what we love, even as we let go.
When Wil was born, I wondered on his differences. How would they separate him from making friends? How would his differences separate him from living a full life? What I didn’t know was Wil’s differences would become woven so deeply into our daily lives that they would be our norm.
One example is Wil’s dancing. When the mood strikes, Wil busts a move down the aisles of Target, Busch’s or Meijer. Wil gets jazzed going shopping with his sisters, because there are mirrors hanging everywhere to dance in front of.
Chopping vegetables with me for dinner is always a hip wiggling activity for Wil, and a car ride another opportunity to belt a tune out the window.
Wil’s had the music in him for so long, it’s ingrained in our lives. I forget that not everyone dances whenever the mood strikes, or bounces to the beat in their car seat, until a stranger gives Wil a smile as he rocks out to his own tune. I smile inwardly to myself, as I smile outwardly back to the stranger, how one-dimensionally I once viewed what differences meant.
Wil’s dear friend, Sarah, is a ballerina. Sarah is graceful in every sense of the word. She is tall and lithe, and practically floats on air when she walks. Wil has low muscle tone so he lands flat-footed with a slight side-to-side gait. I love watching the two friends walk together, because they could not carry themselves more differently. Sarah, however, always makes a point to walk at Wil’s speed, and when he talks, she leans over so they are eye-to-eye. Then, I can almost predict at some point during their conversation, Sarah will throw her head back laughing at something Wil shared with her. And they always find time to share a dance. It’s been that way since preschool.
On Wil’s 14th birthday, Sarah wrote in a beautifully-crafted handmade card to him:
“I am so lucky to know you. You are so amazing and always make me laugh. Goodness, you’ve gotta be the funniest person on this Earth! Your laugh is so contagious. I always have fun walking around with you and talking about lots of things. Hope you have the best birthday bud!”
As I read Sarah’s words, my eyes welled with tears. I now wonder, these 14 years later, how on earth did the differences I once so worried on become a true blessing? That this life, that such friends, have woven themselves into the dance of our lives as our norm.
At one time differences stopped me in my tracks. Now, all I see are blessings in the dance.
Wil’s closest friends are five girls from school; all typically-developing. In our tight-knit community, I hear over and again how special Wil’s friends are. And it’s true. They are. My gratitude is high because I know in another tight-knit community – the community of parents who have children with Down syndrome — Wil’s friendship circle is not commonplace. I wonder, is there a special ingredient these friends have that can be shared? What exactly is it that sets them apart?
One obvious answer is Wil sets himself apart. Not by intention, but by his nature. Wil is funny, silly and goofy at times; as most of us can be. Wil belts out a good tune, and hugs heartily; as most of us are moved to do. Wil grows tired, grumpy and impatient; as we all can. Wil, however, takes all of the above to a slightly, and other times very, different level than most of us.
Last year, I drove Wil through the McDonalds drive-thru to get a Sprite (his reward, aka bribe, for not ditching the school bus to hide in the stairwell. Thanks to a team effort with his teachers, we uncovered another motivator before his teeth rotted).
“We-we-we-welcome back to McDonalds. Wh-wha-wha-what can I get you?” We were asked via the speaker under the drive-through menu. Wil mimicked the words verbatim, then laughed. My child with special needs was making fun of another person with special needs! How could he? Then I thought on this. We all have varying levels of differences. And this was an unfamiliar difference to Wil. A typical reaction for a child, and even adults, is to make fun of what is ununderstood. So, in effect, Wil was responding in a typical way. I marveled at the irony. I also wasn’t going to stand for it.
I turned around in my seat, looked Wil in the eye and said, “Wil, that is how he talks. Just like you talk the way you do, Elizabeth talks the way she does, and Katherine talks the way she does. We all talk differently. There is nothing to make fun of. Sometimes all you need to do is be patient and listen.”
“Oh, ok,” he said. I pulled up to pick-up window, and Wil leaned forward from the back seat and waved, yelling, “Hi!” Then “Thank you!” Wil has good manners when he’s not being a pistol.
One of my favorite quotes from Wil’s friend, Ashely Bobo is, “That’s just Wil being Wil.” She says this with a shrug and a smile, as any friend would. When Wil grew tired in gym class, he laid flat on the floor as his friends jumped rope. When he was ready, he hopped back into the jump rope game and his friends cheered him on.
Another favorite quote is from Wil’s friend, Lila Harvey. Wil and Lila were playing on the slide at the playground. Wil decided to plant himself at the top. When it was clear to Lila he wasn’t budging she said, “Stop fooling around Wil and get down here!” Wil considered this for a beat, then down he went. Lila knows how to call his bluff, as any good friend would.
Wil and his friends do not have a level playing field, yet they built a friendship on common ground. They are not perfect, either (everyone needs a reminder to use their patience and listening skills now and then). What they have created together is a friendship circle. In the center a revered place to meet, surrounded by a wide breadth of latitude for their varied level of differences. A circle that is absolutely duplicatable; and yet it is not commonplace. That is exactly what makes this group of friends so very special.
I walked Wil into his first day of camp, then I walked back to my car. I shut the car door and cried for 5 minutes straight.
I couldn’t stop seeing Wil’s face in my mind. His big, wide eyes looking up at me above his mask. I knew that look. He was trying to be brave. He was trying to do what I wanted him to do. He was trying to do what he wanted to do. To do camp by himself. But he was scared. The innocence and trust in his eyes is so pure. It’s beautiful and terrifying at the same time.
Wil was all a bundle of joy on the drive to camp. Country music a-blaring, he was bouncing in his seat and yelling his songs out the window. No matter it was 19 degrees, the music in him was too big to be contained within the walls of the car. It needed to be released into the winter air.
He was most excited about his lunch. We stopped on the way to camp to pick up a Lunchable to pack along with the carrots, cheese, crackers and water bottle I packed at home. The Lunchable was a special treat – he chose the ham & cheese sub with the little Pringles packet and 2 Oreo cookies.
With weeks of virtual school, and now Christmas break, Wil’s mojo has slowly been declining. Wil is an energetic kid by nature, and I am very mindful of nurturing that energy. Wil has low thyroid, so it would not be hard for him to fall into sluggishness. For both physical and mental health reasons, it’s key to keep his energy high. And I know, personally, how physical and mental health go hand-in-hand.
For Christmas, Wil received a mini-trampoline and Luke Bryan CDs. I knew he’d love jumping around to his favorite country singer. I also bought one Luke Combs CD, because I knew Wil would want me to take turns with him jumping to music, and Wil has me about burned out on Luke Bryan! (Wil is agreeable to adding Luke Combs, Alan Jackson, Blake Shelton, Johnny Cash, Zac Brown and Kenny Chesney to his music selection on occasion).
When I came across an email that the Saline Rec Center was having a winter camp, I read into it further. Then my heart sank when I read the age group was for kids ages 5 through 12. I knew Wil would not want to be with the 5-7 year old children, as he’s very much a teenager, but I also knew he’d enjoy the activities the 10-12 year old’s would be doing. As Wil is 13, I thought the camp director may make an exception. No hurt in asking, so I did.
When I called the camp director and mentioned that I had a 13-year-old son with Down syndrome I’d be interested in signing up for the winter camp, her first questions surrounded Wil’s interests. This may sound routine, but whenever I mention Wil has Down syndrome, the first questions typically surround what his limitations are. Let that sink in a minute…when you are asked about your child, are the first questions about what they can’t do?
Raising Wil, there are multiple micro intricacies like this that pop out in our daily lives. Many times, people are not being unkind, it’s truly a matter of not knowing. And you don’t know until you do know. I just happen to live in the know in this particular category. So when you meet people who are in this type of know, you don’t miss the cues, no matter how small. And the cues usually are small –which is what makes them so big.
The topic of Wil’s limitations never came up directly. In discussing who Wil was as a person, the conversation naturally unfolded into what his triggers were for certain behaviors and what extra help in certain areas he may need. The camp director determined that how the camp was structured would be a good fit for Wil, and described the group she would place him in (with 10-12 year olds). It also so happened that the staff member leading that group has an adult sister with autism. Though Down syndrome and autism are very different, there is a deeper understanding gained in growing up with a sibling with special needs.
When I met the staff member leading Wil’s group at the camp, I knew right away he would be a good fit for Wil. Wil had a Master’s baseball hat on, and he said to Wil, “Ahh, the Masters! I love watching the Masters. So you play golf, Wil?”
“Uh huh,” Wil said. Wil looked around at the other kids that were playing ball. His eyes were wide and nervous, but he also wanted to join in the fun. The staff member got Wil settled and I asked him about his sister.
“She’s doing great. She has her own agenda, you know?” I nodded. In his words were a whole world I knew. I didn’t know him, I didn’t know his sister, but I understood what lived under those words. There are pieces of this life that are difficult to articulate. They have to be lived to be truly understood. Even though each piece has its own personality, underneath it all the emotions are the same. And that’s where we met. It’s the same place I meet my friends in our Down syndrome support group. We don’t have to explain, thank goodness. Explaining takes too much energy and the words always fall flat. It’s an enormous comfort when you meet someone underneath the words.
With the combination of the camp director and the leader of Wil’s group, I knew he was in good hands. It was time for me to go, and give Wil his first day at camp. I gave Wil a hug, said good-bye and walked back to my car.
These are my first steps in opening Wil to greater independence. It’s a feeling I’m not sure I’ll ever be able to articulate accurately with words. But if you saw Wil’s eyes, you would know exactly what I mean without my saying a word.
“Look at me, Mom.” Wil held a sandwich close to his mouth and nibbled bit-by-bit.
“Look at you. Such a cute, little mouse.”
“Ugh, Mom, no. I’m a cute, little squirrel,” he said emphatically, then rolled his eyes upward. Wil is an expert at merging the aspects of childhood with the antics of teenage-hood.
Wil’s voice has grown deeper, there is the faintest hint of peach-fuzz on his upper lip, and he has a huge crush on Luke Bryan’s wife, Caroline (ask Wil what he wants to be when he grows up and he’ll answer, “married”). Wil has a mean left-handed golf swing, he knows every word to no less than 100 songs (99% of which are country), and he gives a hug that melts the grumpiest heart.
Wil recently ditched watching his favorite show, Doc McStuffins. “It’s a baby show, Mom.” Yet if Sesame Street is playing on PBS, he stops in his tracks for Elmo. It’s the music that moves him, no matter the age it’s intended for. Play anything from Hairspray to Frozen, High SchoolMusical to Sing, and you’ve got his attention.
I’ve been asked on many occasions what “mental age” Wil is. I think it’s a way for people to understand his abilities. But it’s not a question I can answer. Wil’s interests and skills are much too broad to categorize him under a singular mental age. To understand Wil is to understand his individual interests and skills. And even those could change tomorrow. Except country music — that lives in his soul.
In our Down Syndrome Support Team, we parents share insights on our children’s learning styles in reading, math, and social studies. We exchange stories on their sports, hobbies, and friends. We laugh and cry over the challenges of puberty. Topics most parents discuss. However, many of our stories are elongated and can be quite in-depth. What works today may very well not work tomorrow. There may be a stand-still in progress for what seems like an eternity, then one ordinary day the floodgates of progress fly open. In our world, no day is ever ordinary. Every day holds a surprise gift waiting to be hand-delivered. We know the gift is coming, the surprise is in not knowing exactly how or when.
Each of our children cross the bridge to a milestone on their own timeline and in their own way. Some bridges have a few extra planks built-in, others circle back to wind forward, and a few crisscross with one another. It’s nearly impossible to speak of our children in linear terms, nor do we want to. I find it highly ironic how often our children are categorized when they defy the boundaries of most any category they are placed in.
I would know. Just this morning I had mistaken a cute, little squirrel for a mouse. And so life grows…
Not too often, but every once in a while, and it happens when Wil is doing something active like playing basketball or fishing, a transparent form of Wil superimposes himself over the real Wil.
The transparent Wil moves and plays in perfect time with the real Wil. The only difference is the transparent Wil’s limbs move fluidly, and are slightly longer and lither; his eyelids rounder, his ears higher, his hair wavier.
Just like a ghost from the past, the transparent Wil never announces his arrival. I’m both struck with shock and familiarity when he shows up.
I used to question myself when these transparent visions would appear. Deep down I know my acceptance of Wil’s diagnosis. I took the very steps to full acceptance myself, because no one can take those steps for you. You can be supported, lifted up, and cheered on, but it is you who must cross that very finish line on your own two feet.
I crossed the acceptance finish line long ago. So why do these visions appear? They don’t come often, but shouldn’t they have long faded into the past?
But that’s not the way it works. When Wil was a baby, and I was on my journey to acceptance, I would stare at his almond shaped eyes, cup my hand over his short-stubby fingers, and find myself falling in love with all the features that initially terrified me. The features that are considered “markers” for Down syndrome.
But even with acceptance, sometimes the brain just wonders. When I see these superimposed visions, they are not filled with longing. They are not filled with pain. They feel more like observations. And that is why I can accept the visions too.
I’ve learned so much with this acceptance process. Acceptance always starts with a deep pain. A pain surrounding something you did not expect. A pain that wants to make a home in the pit of your belly and never leave.
Sometimes, though, you have to sit with that pain in your belly for a while. Let it burn down deep. Let it light it’s fire until it’s too painful for you to let it stay. And there will be so many well-meaning people saying to call out for help, and though you desperately need help, you don’t exactly know what kind of help you need. So you have to sit with it. Feel it. Assess it. Journal it. Hold a friend’s hand while feeling the fire. Share what the fire feels like. Don’t paste over it – don’t try to make it look prettier than it is. Don’t stuff it down, don’t cover it. It will burn its way back up with a fury. Just don’t sit with it too long. Or the pain will become part of you. It will hurt, but it will be habit. And you owe yourself more than that. When we find our way out of the fire, it’s never in the same place where it was set.
When I see the transparent Wil, he doesn’t threaten my acceptance. Because I sat with him when he was a fireball of pain. I felt my loss for him. I held my friends’ hands and talked about him. I made peace with him. And I let him go.
I’m not sure our pains ever leave, but how we look at our pain is what changes. Now when I see transparent Wil, he is a reminder of how far I have come on this journey. How I can sit with the pain. How I can let it go, even when it comes back.
When Wil drops himself on the floor, there are times when someone who doesn’t know him well will step up and say, “Let me try.”
“Have at it,” I say. Then I sit back and observe what I already know is going to happen. I can’t always predict the exact words, but I do know the tune with which the words are played. It’s a sweet tone; syrupy sweet. The notes tilt up as they go, the sentence always ending in higher notes.
I know this tune, I’ve used it before. But it’s not getting him off the floor. Though the tune is sweet, the words are still based in someone else’s agenda, not his. And he knows that. If the Pied Piper came to town, Wil would be the sole remaining child. Unless, of course, the Pied Piper was well-versed in Luke Bryan. Then Wil would fall into step.
If it’s not his tune, he’s not budging. Though he may appreciate the sweetness of the notes, underneath it he knows it for what it is. Your tune, not his. No amount of syrup is going to slide him in your direction. Unless of course, it’s in a bottle of Sprite. Then you’ll be singing his kind of song.
At home, if I want more of a cool, calm vibe, I’ll ask Alexa to play “Van Morrison Station.” Wil will throw his head back and holler out, “Ugh, Mom! Alexa play Luke Bryan Station!” Then he’ll start breaking out his latest dance moves. “Watch this, Mom!”
It’s not that hard to get Wil off the floor, unless, of course, you aren’t playing his tune.
I am often placed in the position of being teacher. Not by trade. Not by degree. But by raising a child with special needs.
My favorite way of learning is through storytelling. Allow me to introduce you to the cast:
Grumpy: Lila
Happy: Ashley
Sneezy: Seeger
Sleepy: Sarah
Doc: Olivia
Dopey: Lillian
Bashful: Rebecca
The Prince: Wil
The Evil Queen: Yours truly
I, the Evil Queen, trailed 10 feet behind the Prince, Grumpy, Happy, Sleepy and Doc (we’d join Dopey and Bashful later). The Prince’s red cape billowed behind him as he ran with his knit-capped friends of varying personalities. Grumpy created the route; it was one she had carefully constructed over the years that yielded top candy output. The friends fanned out in the side streets, then narrowed 2×2 down the sidewalks– Sleepy ran ahead to talk with Happy; Happy later dropped back to put her arm around The Prince; Grumpy sped up to catch Doc, Sleepy shared a story making Doc laugh. They were a letter swapping word game; switching it up, creatively making sense in any order.
The Evil Queen lingered behind, careful not to put a kink in the easy moving chain. The Evil Queen’s role this Halloween night was to walk the Prince back to Grumpy’s house when he showed signs of tiring. Other than that, she was merely the observer.
As the friends made the climb up to Chi-Bro Park, the Evil Queen saw it was time for the Prince to take a rest. The Prince received a round of hugs from his friends, and he and the Evil Queen made their way to Grumpy’s. (This particular Prince is a fan of Luke Bryan, so he and the Evil Queen jammed out until the rest of the crew returned.)
When Sneezy, Grumpy, Happy, Sleepy and Doc returned to meet up with the Prince and Evil Queen, they all headed to Sneezy’s house for a haunted woods walk and bonfire. There they met up with Dopey (Bashful joining in via zoom). The friends banded together and each carried a flashlight, that doubled as a whistle, to survive the scares from the Evil Queen, Sneezy’s parents and any other spooky spirits that hid in the haunted woods.
Having successfully survived the haunted woods, the friends sat around the bonfire. They flashed their flashlights and blew on their whistles in between conversation. As the pitch of the whistles increased, the Prince became overwhelmed as he is sensitive to loud noises. Without warning, the Prince jumped up out of his lawn chair and disappeared into the dark.
In perfect unison, Sneezy, Grumpy, Happy, Sneezy, Sleepy Doc and Dopey lifted out of their chairs and banded together. Flashlights in hand, they ran together into the dark: “We are so sorry, Wil! We just forgot.”
“That’s ok,” was the reply I heard from the dark. The Prince and his friends began a new game in the dark with their flashlights, but not the whistles.
One afternoon at school, Wil became overwhelmed during the lunch hour. He got out of his chair and bolted. He was chased by a few students and teachers. When he reached the hallway, he plopped himself down on the floor. The well-meaning students and teachers that followed him tried their best to coax him back up. He wouldn’t budge. Seeger (aka Sneezy) stepped up and asked that Wil be given some space. She explained that he needed to feel back in control of his environment. How did she know this? Because she read “Stories of Wil: Puberty Part 1.” She wanted to read this book to better understand her friend. How cool is that for a 13-year-old? Sure enough, Seeger’s suggestions got Wil off the floor and back in the lunch room.
There are buddy programs in schools that pair typically-developing students with students who have special needs. While many of these programs are viewed as teaching typical kids how to have a better understanding of those with special needs, they are really about creating an understanding that we all have differing needs. And that can change on a daily basis, especially when you are in middle school! We all are a multi-letter swapping word game that requires creativity in putting the pieces together. Wil and his friends do not play by their differences, they play by their understanding.
Though I am often placed in the position of being a teacher, in this story I am the observer. Grumpy put me there. She asked that I be the Evil Queen. Grumpy knew that if the Evil Queen was available in the background, the Prince could join his friends for a night of trick-or-treating. Grumpy not only mapped the trick-or-treating route, she also creatively put the pieces together.
I hope you have learned as much from the story of Grumpy, Happy, Sneezy, Sleepy, Doc, Dopey, Bashful and The Prince as I have. May you find yourself in one of them (or maybe a few of them depending on the day). Play by understanding. Shuffle the pieces. Get creative. You never know who may be learning from your story.
Last night, there was a story on the news about a young man with Down syndrome training for a full ironman. Yes, a FULL! I fanned my hands in front of my eyes. Just freaking WOW!
His motto was 1%. Every day do 1% better than the previous day. That’s something we can all commit to. A very smart and dedicated man.It’s a feel good story for sure. And it’s a barrier breaker. It’s likely getting shared all over, as it should be. These stories are powerful not only for individuals with Down syndrome, but for all of us. Who knows who just needed that 1% nudge and decided to take it after this story.
I love these front stage stories. But as a parent of a child with Down syndrome, I also want to pull back the curtain. I want to talk to his parents. Beyond the typical questions that are asked. This is how they go: We were very concerned that my child had Ds. But what a blessing! Look what he/she can do now. These are success stories, and we can relate. I know I can.
But I want to go deeper. What is the day to day like? In many ways, our kids need some support. So in giving Wil independence, he’s not always aware of dangers. How did his parents give their son independence? How did that look over time? When did they push? When did they step back? Who put the Ironman idea in his head? Did he discover it? How was he made aware of it? Was it a fitness progression over time? That is the 1% I want. What were the 1%’s each day that added up to this place for your son?
I’m not asking because I want Wil to do an Ironman. If he wants to, more power to him. But my question is more 1%. I want to know the day to day for Wil to reach the highest level of independence he is capable of. I want to know the ideas to open him up to that. I want to know the parts they opened for their son to discover on his own. All the pieces that add up to the whole, whatever that whole may be.
Last night as Matt and I watched this show, Wil was out in the back field collecting sticks. He got cold, so came in grabbed a hat then dug through the glove bin. He picked out one glove and one mitten: one fit the right hand, one fit the left. No time to find a match, there were sticks to be collected. He flew out the back door, grabbed his wagon and pulled it up to the sticks he had piled. He hefted up one after another, stacked them across the top of the wagon (they were too long to fit in the wagon). Then he pulled his wagon down the hill to the fire pit, stopping a few times to retrieve a large stick that would slide off the pile.
I didn’t want to interrupt his busy work, but I also wanted to know where he was. So I went to our master bathroom window, that has a view of where the firepit is. I watched as Wil carefully unloaded each stick into the pit. Some weren’t quite right, so he put them back in the wagon. I yelled out “Good job!” from the window.
“Oh, hi mom! Look, we can have a fire!” Then he marched back up the hill with the remnant sticks and piled them all up on our back porch. I’m not sure of their intentions as they are still there today.
Wil walked in the house, nose pink and declared, “It is time for a 4-wheeler ride now, Mom.” I was nice and snug inside. It was a grey day and dusk. I really didn’t want to go on a 4-wheeler ride. I wanted to get under a blanket on the couch. But that wasn’t happening. I’m so thankful how active Wil is and I want to keep it that way. I don’t want him to get lulled by the couch. Activity for Wil is incredibly important for his health. He has low muscle tone and low thyroid, and his independent activity keeps him fit and energized. So I wasn’t going to put the stop sign on the 4-wheeler ride. Out we went. We zipped around the back field, then up and down the hill about 1,000 times in front of our house. Oh that fresh air! It woke me up, and I felt vibrant. Wil yelled out, “Giddyup Yeehaw!” every time we sped down the hill.
Wil picking up sticks is so much more than that. It’s 1% toward whatever goals he wants to achieve in life. But he needs my support. He needs the people behind the curtain. Every 1% adds up to the whole. It’s so much more than a feel good story; it’s about adding up the 1%’s. Next time you see an inspiring story like this, take a moment to look behind the curtain. To wonder what it took to get to that place. It’s more than an inspiring story, it’s about learning. It’s about growing 1% better every day. And when you do that for someone else, you do it for yourself too. It’s about us ALL being better.
'WIL'ingness = Willing to Embrace Extra in Life 