Purposeful life

The Dance

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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. 

In Sync

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As Wil has gotten older, it’s clear he needs closer friends with Down syndrome. He has wonderful friends at school that love and support him fully. As the gap in abilities with his typical peers grows and social lives expand, Wil also needs to cultivate friendships with those whose abilities match his.

Manny’s family lives in the neighboring town, so his mother, Laura, reached out to get our boys together. Manny will be entering 9th grade, and Wil 8th.

When Manny arrived at our house, it was our second get-together. We had met at Portage Lake the previous week and a friendship was formed. Though both Manny and Wil had talked of this second get-together for days, when Manny entered our house he went to the couch and Wil retreated to his bedroom. They were overwhelmed.

I took a big sigh of relief. Why? Because this was normal behavior not for just one of them, but for both of them.

I coaxed Wil out of his room, and Laura coaxed Manny to show Wil the toys he brought. Manny won Wil’s heart by bringing him a can of Sprite to drink with lunch.

The two laughed and were silly with lunch, and that broke the ice. But after lunch, they separated again. Even this separation was refreshing to me as it’s usually Wil I’m coaxing while others wait. This day, we were all gloriously on the same page, even if Manny and Wil were apart. Manny’s older sister, Grace, was there, and she kept the conversation going engaging both Wil and Manny. Like Katherine and Elizabeth (who were at a birthday party), this is Grace’s normal, and she handles it, well, with grace.

Laura suggested a movie to start the ball rolling again. And roll the ball we did — Manny chose Hotel Transylvania 3 and we played a game where we sat on the floor and rolled the ball to each other. When the music in the movie played, that was the kryptonite to whatever was holding them back. Manny and Wil broke out their dance moves. Then Wil broke out his karaoke player and jammed to Luke Bryan while Manny jammed on his Bluetooth mic he brought from home.

After the jam session, we headed outside to the driveway to ride bikes. Manny tried Wil’s recumbent bike while Wil rode his bike with training wheels. The handles on the recumbent bike are what steer it. Manny is used to using an elliptical machine, so he was pumping the handles back and forth zig zagging around. I thought that was a smart technique. With a few more tries, he figured it out and was zooming around, even on the grass!

Then I took Manny on the 4-wheeler. He “woohoo’d” the entire time. The guy has a need for speed!

Soon it was time for them to go, and we said our goodbyes until next time. I talked to my sister that evening, and told her how great it is to have a get-together where the kids are on the same level. It’s something you just don’t take for granted.

A day full of stops, starts, zig-zags, and full speeds ahead — all the while, remaining gloriously in sync.

(Photo: Potato chip lips)

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No Words to Describe the Words that Do

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Wil was busy packing his backpack. Then he walked up to me and told me what he was doing and walked out the door. I didn’t understand fully what he said. So I watched him walk down the lane of our back field. If he turns right, that means he’s going to the river. If he turns left, he’s collecting sticks. He turned right.
I threw on a coat and gloves, hopped on the 4-wheeler, and sped down the lane. I hopped off and started making my way from our property to the woods.

But, before I reached the woods, there sat Wil – cross legged in the grass. His backpack was open, the soccer ball he packed had rolled out. In front of him was a spiral notebook. He held a pen in his hand and had written one word: Ashley.

“Hi Wil.”

“Hi Mom.”

“Whatcha doing?”

“Mom, look.” He started writing.

“Ashley summer? Yes, we’ll see Ashley in the summer.” He nodded and continued writing.

“Swimming with Lila? Yes, you’ll have fun swimming with Lila.” He nodded then wrote again.

“Eating? I know you love to eat!” He laughed and wrote again.

“With Mom and Dad. Yes, Wil, that’s right.”

“Mom, look.” And he wrote “I love you.”

“I love you, too, Wil. Very much. I’m also very proud of you.”

He smiled at me, and signed his name.

“I’m cold, Mom.”

“I bet. I’ll give you a ride home.”

Words can’t describe. ❤️

Twist, turn, kick. Sputter. Smile.

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His swim instructor was showing him how to roll over from his stomach to his back in the water. He’d start, face down, floating, then twist himself around. As he made the twist, he’d flail slightly, body twisting hard, with a little kicking to get himself all the way around.

He’d pop his head to the surface, his clear-lensed wide-eyed goggles—he affectionately calls “Frog power” when he puts them on—showing wide eyes underneath. His breath sputtering, spitting out water. Then catching his breath, laying on his back, realizing he succeeded, a huge smile spread across his face.

Again, he’d twist, kick, turn his body around. Low muscle tone making the task challenging, his observing mom thankful for the important core strengthening that was happening. Again he surfaced, sputtering, eyes wide, spitting out water, catching his breath. Then the smile. Big. Proud.

Again, he’d twist, turn, kick. Sputter. Smile.

Again, again, again.

Each time, the twist would come a little quicker. The sputtering less. Soon, the smile was already there, shining underwater, revealed as he completed the turn and lay on his back. Floating.

And his observing mom found herself smiling too, thinking isn’t life just like that?

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Slippery Rocks Ahead!

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“Slippery rocks ahead!” It was a dark, pre-dawn August morning in Michigan’s Upper Peninsula. Headlamp lights bounced off the rocky trail. It had rained the night before, so the trail was slick. The jutting rocks and roots mixed with the elevation proved challenging without throwing in the darkness and slickness. Even though I had read about this trail and watched a video of the race, I was only partially prepared. Traversing the trail with my own feet was the only way to truly be in the know.

I have made no hidden remarks about puberty with Wil mixed with Down syndrome. I could have guessed what was ahead, I had read enough and prepared myself enough, but there are certain things you simply need to experience to fully be in the know. I talked to Wil’s teacher consultant for ideas in working with his new behaviors associated with puberty–she has worked with multiple children with multiple diagnoses. I noticed the first thing she did was ask questions. Lots and lots of questions. I respected that greatly. She wanted to know all about Wil and his behaviors. She didn’t make assumptions based on him having Down syndrome. Though she is someone “in the know”, it was important for her to know and understand Wil.

The other morning, Wil was being extremely willful. It took him a full 30 minutes to get out of bed and ready for school. The pattern continued through the day into the evening. He didn’t want to go to Katherine’s CrossFit class that night, but Elizabeth was at basketball, and Matt was out of town, so going to CrossFit was his only choice as he is not able to stay home alone at this point. Katherine and I finally convinced him to get in the car, with the promise of a stop at Bigby Coffee for a cup of hot chocolate with sprinkles. I took a deep breath when we got in the car, played some music, and all seemed to be going well. After dropping Katherine off at Crossfit, Wil and I headed to Bigby Coffee. I ordered his hot chocolate and he drank most of it. We shared a conversation, with a few pauses and prompting. When it was time to pick Katherine back up from CrossFit, he refused to leave. Again, with lots of prompting, I finally got him up and into the car. When we arrived home, he had some time to watch tv and then go to bed. Again, he refused. Thankfully, we didn’t have anywhere to go so I walked him to his bedroom and told him he could stay in there until he was ready to put on his pajamas. This is usually a successful tactic as it gives him time to unwind and feel back in control of his situation. It can take anywhere from 15 minutes to an hour. Well, it took an hour. By the time I got Wil into bed, I wanted to go to bed too I was so exhausted from the constant negotiations and patience required the entire day. Though I knew I would have fallen asleep the moment my head hit the pillow, I felt the need to unwind and feel back in control of my situation, too. So I sat down and read a book, as exhausted as I was, until I felt calmed down, then I went to bed. And indeed, I fell asleep the second my head hit the pillow.

When Matt returned to town, I told him about this experience. How the entire day, Wil had been willful. How I had tried to get him to communicate, but he was being obstinate with anything I did.

“Hmm, sounds like a teenager to me,” Matt said.

That next week, the kids had Friday and Monday off for President’s Day weekend. On Thursday morning, Wil popped out of bed singing, “Friday, Friday, Friday!”

“Actually Wil, it’s Thursday.” I replied.

“No, it’s Friday, Friday, Friday!” He continued singing.

“Huh, you know, you are right. In school days, this is your Friday. Hooray Friday, Friday, Friday!”

On the flip side, Tuesday was not so celebratory. After having Friday and Monday off, Wil was well out of his routine. He refused to get on the bus after school on Tuesday and even took off outside for a brief period. His teacher was on it, rallied him back in, and when I entered the school office to pick him up he was fairly cheerful, no doubt for his bout with fresh air and freedom.

“Wil, you were all excited to ride the bus home when I dropped you off for school this morning. What happened?”

“Mondays are hard, Mom,” he said. I almost said it was Tuesday, then caught myself. In school days, it was his Monday. And yes, I agree, Mondays can be hard.

Refusing the bus ride home on Mondays is more the rule than the exception. If I were to graph his week, it would be an upward slope. As the week goes on, he gets back into the groove of his routine, and though no day is smooth sailing, his days grow progressively smoother and more productive. Wil earns stars for doing work in each of his classes. Wil earned a mere 4 stars that Tuesday, but doubled that count by Thursday. On Friday he promised to uphold that double count of stars. And that he did. Friday, Friday, Friday!

When Wil was a baby, I read multiple books about Down syndrome. First books about babies with Down syndrome (which is an actual title of one of the books) up to books about teenagers and young adults with Down syndrome. I wanted to put myself in the know. I needed to put myself in the know. There were much too many unknowns in the distant future when I learned of Wil’s diagnosis. Reading books helped put me in the know–or so I thought. I really was only partially in the know. Because you don’t know what you don’t know until you do know. Now that I know, I know there is much more knowing to come.

When I trained for the 50-mile trail race in Michigan’s Upper Peninsula, I approached it quite similarly. I read as much as I could about ultramarathons. The terrain I was used to in the lower Peninsula was much different from what I would experience in the race. Where the race’s trail was rocky with steep elevation, the roads I was used to were sandy with rolling hills. I would also start the race in the dark. I wouldn’t be able to see what was ahead of me except for what was illuminated in the small, thin beam of my headlamp. I wanted to be in the know. But until I hit that trail with my own two feet, I was only partially in the know.

At the beginning of the race, we runners were all backed up along the single track trail in the dark pre-dawn with the calls of “Watch out, slippery rock ahead!” We made our way gingery, step-by-step-by-step, careful not to twist an ankle this early in the race. As the dawn spread, and the view of the trail opened up in front of us, we proceeded more confidently, and found the paces we had trained for. Even so, there were many surprises along the way. Along the shore of Lake Superior, I made good time. The ground was a soft bed of pine needles. I enjoyed the view, the soft footing and the flatter terrain under my feet. When I hit Hogback Mountain, I stopped and looked up at the tall climb. I had read about this part of the race, but now I was about to experience it. I was on hands and knees, climbing, crawling, scaling looking for the little orange flags stuck in a crevice, that led the way, so I wouldn’t make a wrong turn. I climbed next to others, and when we’d spy a flag we’d call out, “There’s the flag, this way!” And we’d creep and crawl until we found flatter footing and took off again.

As much as I value preparation, no one could have told me how it felt to know the soft bed of pine needles under my feet. Then, to come to an abrupt halt of a hard rock hands and knees climb, progressing at a snail’s pace, eyes peeled for a sign I was heading in the right direction–all the while knowing, if I made a wrong turn, I wouldn’t make the time cut-off, and will get pulled from the race I trained so hard for. As such, you can’t read about a child with Down syndrome’s behaviors and expect to know what exactly they are communicating without being able to ask questions specific to that child. You can’t know the free flow of milestones being hit, closely to on time, and then bam, a mountain to scale–seeking out any flash of orange to guide you on your way. You can’t know the patience it can take, and also to fully understand when that very patience breaks, until you’ve been through it yourself—all the while savoring your journey, no matter how confusing, exhausting, or exhilarating it may be. As prepared as we may believe we are, we don’t really know until we’ve traversed the path with our own two feet.

I have learned a lot from Wil, but Wil is not a lesson to be learned. Wil is not an object of advocacy. Wil is a 13-year-old boy. Wil has 47 chromosomes and Wil is also a teenager. Wil has tough Mondays and cheers on his Fridays, Fridays, Fridays! Wil has 4 star days and 8 star days. Wil’s week goes in an upward curve quite predictably, but what happens along that curve is anyone’s guess. Sometimes it’s a protest on the basement stairs and sometimes its as close to smooth sailing as he gets. Sometimes I can navigate the journey on my own, and sometimes it takes a team. What I know about Wil is what I know now. Preparation is key, and so is the reality that tomorrow is anyone’s guess.

The only advice I can offer up to this point is there are Slippery Rocks Ahead! I can’t tell you where until I cross them myself. But when you get there, who knows, the climate may have changed and you may sail right through. Keep your head up, always work toward an upward curve, and ask lots of questions. The little flash of orange is always there to lead the way, though you may need an entire team crawling, scaling and putting one hand and foot in front of the other to find it. Mondays are hard, even if is a Tuesday, and celebrate every Friday, Friday, Friday! even if it is a Thursday. Be weary of those who claim to know the answers–only those who ask questions truly seek the answer. Labels define us, and preparation prepares us, so we feel that we may know. And yet, each day is it’s own, and each of us is our own–so we only partially know. You don’t know what you don’t know until you do know. Once you do know, you can betcha it will change.

Common Bridges

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“Come on, you have your ear protectors on. It will be fun. Remember you wanted to go to the movies?”

The three of us stood there, Katherine Elizabeth and myself, juggling popcorn buckets and drink cups, in the hallway just outside the entrance to the room where our movie would be playing. Wil sat on the floor, smack dab in the center of the entrance. We had made it this far with very few signs of resistance, then plop! He wasn’t going in. 

Looking back, there were a few small red flags. When I ordered popcorn, Wil said he didn’t want any <red flag>. I ordered him a small bucket knowing he would change his mind. When it came time to fill up his drink cup he perked up. He reached up to press the button of his drink of choice, slid his cup under the fountain and filled it to the top. He was one happy guy holding his cup walking down the hallway <red flag down!>. All four of us walked down the hallway with our treats, until Wil came to an abrupt halt just as we were about to enter the room. Plopped on the ground. And here we were.

“Wil if you aren’t going in, can you at least scoot to the side so people don’t have to walk around you to get into the movie?” A few kids that sat on the couch across from the entryway were staring at us. It’s always strange to be stared at. But I think it’s a good thing. This is our normal. Everyone has their own version of it, and the more we see other forms of normal, the less we fear them. 

Wil scooted across the floor away from the entrance. 

“Great, job, Buddy. So what is going on here? It’s not that loud in there. And you wanted to see the movie. So can you help me understand?” I received no response, though I really didn’t expect one at this point.

“It’s going to be a funny movie. Hey, we might even laugh til we wet our pants. How about that!” He looked up at me, with the faintest smile like he really wanted to laugh, then put his head back down. He wasn’t ready to be that open yet. 

“Is it the popcorn? You don’t have to eat it.”

The previews started rolling and Katherine wanted to go in to watch them. “Mom, I can carry in Wil’s popcorn and pop.” 



“Thanks honey.” Katherine gave a big bear hug around both her and Wil’s popcorn buckets with drinks in each hand and made her way into the theater. I thought of all the times the girls need to be patient. Katherine, Elizabeth and I all need to work as a team. While Katherine took in our supplies, Elizabeth stayed out with me to help encourage Wil into theater. This is our normal. People were streaming by us into the theater. Wil remained un-phased by the traffic and the boys staring on the couch. 

Elizabeth worked on convincing Wil to enter the theater by asking more questions with very little response. For whatever reason, Wil resists piggyback rides from any of us except Elizabeth, so she pulled out the big guns, “Wil do you want a piggyback ride?” This is not so easy anymore with Wil weighing 104 pounds. He stood up and Elizabeth gave him a ride into the theater. Once he was in the theater, it was like he crossed a mental barrier as much as a physical one. He laughed as he reclined his seat. He asked to hold his own popcorn and placed his drink in the cup holder. And, as promised, we did laugh during the movie, but thankfully evaded any pant-wetting.

The previous week when Wil and I went to the same theater for a Down Syndrome Support Team event to watch Frozen 2, there were multiple other kids with Down syndrome who also decided that they did not want to enter the room where the movie was being shown. My guess is they were full of excitement to see Frozen 2, but when at the threshold, they found some part of the experience overwhelming. Be it a new room, anticipation of the event, concern of loud noises in a populated room or experiencing the unknown. Without the verbal communication skills to express those emotions, the physical communication is expressed as coming to a complete stop as to stop what is happening. On this particular occasion, Wil entered the theater without incident on that day, but I fully understood what was happening with the kids stopped at the entrance, as did everyone else in our Down Syndrome Support Team. There was no staring with the wonder of what was happening. This crowd of parents and siblings have all had been there, done that. This is our normal. 

When Wil was very young, we were part of a playgroup. Wil’s favorite pastime was to find the door and escape as quickly as he could. I had to keep an eagle eye on him or he would be gone. I had to leave the twins with another mom and chase Wil down the hall again and again. He was the only one who did that with very few exceptions. Most of the kids were content at that age to play together or with all of the toys in the room, or if upset, sit down crying. But not Wil. His intent was to escape at any chance he could find. 

Then I started hosting Down Syndrome Support Team play dates. 90% of the moms there spent the majority of their time with the same eagle eye, because their kids first priority was to exit the door. As challenging as it was, it was all of our normal. 

Katherine, Elizabeth and I recently went shopping with Wil. We all know that our time is limited when shopping with him as he will run off or take a seat in the middle of the store when he is tired. We watch for the cues. It’s a team effort. We went to one store and I took him for a walk while the girls shopped and tried on outfits. Wil and I would circle back around to where the girls were shopping so I could see what they liked, or answer a question, then we’d circle around again. We made it through that store without incident. Then onto one other store. We tried the same tactic but I could tell Wil was falling apart. He started running and taking off. I saw a friend, Julie, shopping with her daughter. I waved and said hello as I followed the top of Wil’s head through the aisles of clothes. 

She said, “How are you doing?” 

“You know, just chasing Wil as per usual!” Julie knows Wil, has 4 kids of her own, and is a teacher, so no explaining was necessary. She nodded her head and smiled. 

Following Wil, I ran into Elizabeth. I told the girls we had limited time. Elizabeth said that was fine, she didn’t see anything she liked anyway and was ready to go. We walked together, following Wil, to give Katherine some extra shopping time. For whatever reason, during Wil’s running he decided he wanted a vest. A $250 North Face vest. He pulled it off the rack to show it to me. I agreed it was really cool, because it was. But he was not getting a $250 vest as cool and well made as it was. He was not happy with that and decided to run around the store again. When he gets like this, I prefer he stay on the move, because if he drops on the floor, it’s really hard to get him back up again. The flip side is, he can easily decide to run out the door. 

Elizabeth and I both looked at each other and telepathically exchanged it was time to go. Elizabeth said, “I’ll text Katherine to meet us at the car.” 

I told Wil we were leaving and he made a sprint to the door. I put my arm around his shoulders and slowed him to a walk.

“Why your arm on me mom?”

“Because we are headed to the parking lot and we need to be safe.”

“So I’m not flat like a pancake.”

“Exactly.”

We made it to the car, then off to lunch. It was time for us all to sit in one place and enjoy some time together, which is exactly what we did. 

Elizabeth came home from school one day and shared with me that her gym teacher, Mrs. April Stewart sat down with her and a few other friends. Elizabeth said there was some downtime in the class and Mrs. Stewart shared some stories about her sister with Down syndrome. Elizabeth said they laughed about the similarities between Mrs. Stewart’s sister and Elizabeth’s brother. How they could be absolutely unmoving and headstrong, but also openly and unconditionally loving. Elizabeth told me how special these conversations are to her. She said you really can’t understand what it’s like to have a brother with Down syndrome and it’s hard to explain. But Mrs. Stewart really understands. She said that she also likes the others in the group to hear these stories so they can understand, too. Elizabeth said sometimes Mrs. Stewarts gets tears in her eyes talking about her sister. She knows she really misses her. I had tears in my eyes too after Elizabeth shared this with me. (April and I met at a basketball meeting for our daughters, Elizabeth and Maggie. April saw Wil running around the gym and asked if he was my son. She then shared she had a sister with Down syndrome. We instantly became friends with our special chromosomal bond.)

In many ways I feel like we live in two different worlds; the typical world and the Down syndrome world. In our Down syndrome world, what Wil does is completely normal behavior. The stops at the entrance of the movie theater when it all feels too much. Or the sprints out the door when the shopping has gone on too long. But Wil has two typical sisters and we live in a typical world. So we must balance the two. Wherever we go we must be prepared. It’s is always a guessing game of how long Wil will last, and watching for the cues of his being tired. Because the typical world moves much faster, is a lot louder and has much less patience than the Down syndrome world. In the Down syndrome world we stop when we feel overwhelmed. Or we bolt because it’s much more appealing to run down an open hallway than to be overstimulated by the multitudes of activity crowded into one room. In the typical world we crave this activity, more is better. We crave distraction, and we must pack in as much as we can in a very short time. 

It is a delicate dance to balance the two worlds. Katherine and Elizabeth understand this dance and they do it very well. I’m always amazed at how well they roll with it and we make it all work as a team. I’m thankful for the Mrs. Stewarts of this world. It’s of great importance for Katherine and Elizabeth to know others who balance these two worlds. These friends are our bridges–where our normals are broad and in-between; it is a place we can laugh and cry together with no explanation needed, because our understanding is whole on this well-traversed common ground.

All That We Are

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He said mom, look at me, and he placed my hands on either side of his face. I looked at him. At first what I was doing screamed for attention. I did not have time. But he smiled, and I melted into his little face. Those almond eyes, his soft innocent stare that only asks for all that I am. He wanted his mom, not half of his mom, but all of his mom. We all want all of who we are with, and all of who we are, but along the way we forget to ask. We forget to ask that even of ourselves. He doesn’t forget. Thank God. 

So then, for that day, by virtue of that moment, I am brought back to life. Back to a place I didn’t know I lost because the distractions filled my life of all the empty spaces. His hands on my face cleared the room. The empty spaces become empty again. It is not sad. It is a feeling of freedom. Life zooms in full focus to his face, and that face is everything. I am filled with a peace, a love, that I was born and created with, but had forgotten a long, long time ago. 

We know that peace holding our babies. We can stare at their sweet, innocent faces with their gurgles and giggles, and their sleep for hours. Everything else sheds away. They are our everything. Then they start crawling, and toddling, and soon they find new independence. Though they are still our everything, distractions start finding their way into the periphery. Our kids soon pick up the habit of distraction just as we did–from our parents, from our environment, from responsibility. It just is what it is. It happens so very gradually, we don’t even notice until our life is full, so we think. 

Until one day, you are awoken. It happens in the simplest of ways. Because that is how the true joys of life are–simple. I was washing dishes, my mind not even on the dishes. I was a million miles away living with the million other things that I had to do and what I already had done. A voice cut through the swirling galaxy of my thoughts and said, “Look at me mom.” The voice interrupts but the distractions need to be heard. They will not lie down for a simple interruption. They have been born of habit and so persist. “What do you need, Buddy?” 

The voice beckons again, but this time, he walks up to me and places his hands on either side of my face. They are like paddles shocking me back to life. The distractions cease. They don’t fade to the corners, they lift and fade into the ether. My Life is back into rhythm with what matters. This is not another distraction pushing out the distractions, like a drink, drug or food. This is real. This is God talking.
This is where we shut up and listen. 

Underneath all the noise, he wanted his mom. He wanted me to see him, to know he was there. Not partially, but fully. 

We all want to be seen fully, to be heard fully, but we learn to live without it. I’m not sure what it is in Wil that he did not learn that part of life, but I’m sure thankful that passed him by. I don’t listen to others as well as I should, but he reminds me to stop and listen. Not partially but fully. Whenever I stop, and turn my head to who I am with or what we are doing and fully listen, life immediately feels fuller. Because that is how the true joys of life are–simple.

Discovering New Stars

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When Wil was a baby, I declared Wil would get his high school diploma. Wil would have full inclusion in the classrom. Wil would drive. Wil would go to college.

Today, I still have high hopes but they look a lot different from those early declarations. Wil is not going to get a high school diploma. He will earn his Certificate of Completion. Wil is in 7th grade and reading at a beginning 2nd grade level. Does that sound sad to you? It may have to me those many years ago. I may have believed someone wasn’t doing their job. 

Today, to see him sit down on the couch, put on his glasses and read a beginning reader’s book is one of my greatest thrills. Or to drive with him in the car and hear him read billboard signs fills me up with a happiness you can’t buy. 

Why? Because I now know the steps it took him to get there. And there is no way I could have known what those steps would look like when Wil was a baby. I had to take those steps with him. Day-after-day-after-day.

Those early high hopes were important. They gave me stars to reach for. But as we moved further along the road upwards toward those stars, I saw some where just not going to happen. 

Wil works hard, when he wants to, but no matter how hard he works the reality is he has certain limits. He processes words slower. He moves slower. Wil also spends the majority of his time at school in the resource room. The full inclusion I envisioned for him is available, but it’s not the best thing for him. He simply can not comprehend and keep up with all the studies his typical peers are doing. He still spends time with his typical peers in gym, science and social studies. But he learns reading and math in the resource room, along with life skills. 

Now Wil is going through puberty. Every morning is a true test. He needs lots and lots of encouragement to get out of bed. If there is any forcing to get him out of bed, his whole day could be set back. It’s hard emotionally, for me. Every morning I need to steel myself for the long haul. For no missteps. I know we will get through this. But right now it’s hard.

I’m entering a new chapter with Wil. I relate it to when he was born. I’m navigating a new place I have not been before. When he was born, I wanted to know what Down syndrome was all about. I could read about it, but I didn’t really know it until I lived it. Travelled alongside other parents on the same journey. Now I’m navigating “What is Down syndrome with Puberty?” I’m traveling alongside other parents. This is an emotional journey and it’s extremely valuable to walk with others who understand not just what it looks like, but what it FEELS like. 

Puberty is challenging for anyone. But you tie in communication and comprehension barriers, and it’s a whole new learning experience. Right now I can best equate it to a tall-hedged maze. I can’t see where we are going, or what direction to turn in, but I know we will eventually make our way through. We walk down one aisle to find a dead end. We walk backwards, retrace our steps to where we were, and try a new direction. We hit another dead end. We walk backwards again, start over, and find ourselves further this time than before. Progress! We build on that, get a little further, find another dead end, but know we are closer. We try again. 

Never, ever dismiss the power of a 12-year-old boy reading at a beginning 2nd grade level. You may never know the emotional strength and steps it took to get there. We still reach for the stars, but in a different way. At first, I thought reaching for the stars was about achieving certain goals. But somewhere along the way I found the real stars are where we make true emotional connections along this mazy path.

Living a Purposeful Life: Our Friends with Special Needs As Our Greatest Teachers

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I see a lot of stressed unhappy people out there. And I wonder, how can we change that? I mean, we all have different battles to fight. And we all have different things that make us happy and sad. The online self-help bookshelves at Amazon have multiple aisles. There are therapists and any drug you can name that advertise relief.

With so many tools available, why do so many seem as stressed as ever? It’s like a competition to see who is busier. I overhead a conversation waiting in the check-out line at a grocery store. Two ladies ran into each other, and soon they were competing over who had less sleep. Is that really a competition you want to win? 

There is a difference between being purposeful and being busy. It seems that being busy is supposed to win us a gold star. But how purposeful are we really in our busyness? Are we missing the point as we run in circles?


I don’t have the answers, but it sure hurts to see so many people hurting. We seem busier but unhappier. I don’t believe there are any secrets but I do believe there are methods to being happier in life. And it does involve making some changes….in who you talk to.

I will tell you, every time I go to a special needs event I am filled up. Not just by the participants, but also those doing the volunteering. Now, I’m being very general here because everyone is an individual; but when you are talking and working with someone with special needs, for the most part, their learning style doesn’t so easily fit the norm. Most of us typical folks adapt even if it isn’t our preferred way of learning. But you can’t tell a child with Down syndrome to hurry up when they don’t want to. It ain’t gonna happen. You can’t talk to a child with autism in generalities, you won’t get through or you will have someone very upset on your hands. You have to slow down and think through what you are going to say. You can’t just force things. You have to look at things from their perspective. Now, that may sound stressful to some of you, and at times it can be. But here’s the secret…it gets you out of your own stressful world that continuously spins around in your head. It forces you to think above all that noise on a different plane. To broaden your perspective and throw in a dose of compassion. And even though you may have some very big things on your plate, these experiences have the power make them shift to a better place in your mind. 

At a recent Special Olympics function, I was sitting on the side of a hill with a few of the athletes. I struck up a conversation with two of the gentleman. One of them works at a nursing home. He stutters a bit, but that did not slow down his enthusiasm in explaining how he cleans the floors, makes the beds, takes care of general room clean-up. I barely needed to ask a question before he was answering it. I was thoroughly enjoying our conversation. I actually found myself almost to tears. I’m sure it was part happiness seeing this young man thrive as Wil will be a young adult in 6 years. But, mostly I think it was the pure joy I felt as a child. Sitting on a grassy hill in the summer sun and having an enthusiastic conversation. It was so refreshing. He wasn’t telling me how stressed he was to clean the floors, or how some coworker was an absolute jerk, or how he hadn’t slept in 3 days. He was a man grateful for his daily life and couldn’t wait to tell me all about it. I want to be more like him. Sorry, ladies competing in the grocery store aisle, my new friend is the real winner. 

So many of us are given more cognitive abilities than this man, and yet we use most of our time stressed to the hilt. I’m not saying that we do not have very important things to attend to. But what I am saying is that it’s ok to take a step back. To take a good look to be sure what we are doing has purpose to it. To find a purpose for growth and a broader perspective, and in some cases, great enthusiasm.

The next time I get stressed, or overwhelm myself, I’m going to bring myself back to the conversation on the grassy hill. Our friends with special needs may need our help to achieve certain goals, but we need their help just as much, if not more, to remember what a purposeful life is meant to be.Â