What They Can’t Tell You

Wil ran up to me, then reached into his pajama pants pocket. He pulled out an adhesive mustache and stuck it under his nose. “Look at me, Mom!” He leaned his face so close to mine that I saw double.

“You are so close I can’t see you!” He stepped back, his mustache upside-down, the edges tickling his cheeks. He smiled at me with that upside-down mustache and I thought, this is what they can’t tell you.

The silliness started at about 7:30 that morning. Wil busted out of his bedroom, in his stripe-legged pajamas, the music from his CD player trailing behind him. He placed his hands on the living room floor and kicked his bare feet up in the air. “Look at me, Mom!”

“Look at you, Fancy Pants! Nice moves.” Though I’m a coffee drinker, there is no amount of caffeine that can lift me higher in the morning than Wil’s dance moves. It’s like being handed a fistful of balloons and feeling your feet leave the ground.

Sadly, I had to bring us back to earth. It was time to log in to school. “Wil, you look very handsome in your mustache. How about you show off your mustache in class? You are going to be late if you don’t log in now.”

“Ugh, Mom, no.” He flopped himself on the floor then laid face-down.

I dropped to the floor, laid on my belly and put my face close to his head. In a deep, sing-songy voice I said, “I see you! Time to log in to school, Wil.”

He lifted his head, leaned his forehead into mine and mimicked my deep sing-songy voice, “Ok, Mr. Mom.” Then he started laughing. When Wil laughs, he laughs with his whole body. I thought, this is what they can’t tell you.

They can’t break through your tears, into your hurt heart, after you learn your child gained one extra chromosome, and explain how a smile under an upside-down mustache, a leg-kicking pajama dance, and a body-racking belly laugh on the floor will make you feel like you hit the jackpot.

Because you did. You just have to live it to know it.

Lightweight

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!”

An Evil Queen’s Observation on Acceptance

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.

Win/Win

Wil had not slept in his own bed for months. He said he had a bad dream. 

A bad dream could mean lots of things. It could mean something scary in his room. A toy, a book, a game. A bad dream could mean a scary occurrence that he couldn’t shake. 

I dug deeper. Tell me more about your bad dream. He gave me a clue: Elmo cats. I knew right then the culprit. Mr. Tiger. 

Mr. Tiger really isn’t all that scary. He’s a fluffy puppet with soft white mutton chops, friendly eyes and is more prone to smiling than biting. What he does do, though, is come on the screen and let out a roar.

We have a 100lb yellow lab and the fact that he rarely barks and is an intensely laid back dude is the reason he and Wil are best buddies. Other than Woody, Wil is terrified to be in another dog’s presence. The same goes for babies. 

Though he’ll look at pictures of round-cheeked babies and floppy-eared dogs all day long and exclaim how adorable they are, in person there is nothing more terrifying. 

Babies and dogs belt out loud noises unpredictably. Unexpected loud noises are Wil’s kryptonite. He’ll shrivel up on the ground with hands clamped over his ears. Sitting through his sister’s basketball game with the sporadic buzzes and whistle blows takes enormous convincing complete with the promise of a hot dog and Sprite. He’ll sit up at the very top, hands clamped over his noise cancelling headphones. As he’s gotten older, he’s become more aware that not everyone wears headphones. He prefers not to wear them when he can brave it out. But with babies, dogs and sporting events, even pride cannot win. Without headphones, he’s not going in.

Mr. Tiger has turned into an obsession for Wil. He wants to turn away but he just can’t. It’s like a Jack in the Box. He keeps cranking the handle (or hitting the rewind button) even though he knows one of the turns is going to make him jump.

I took the DVD out of his room. I talked to him about it. Still, he’s not going in.

I’d put Wil to bed, and at some point during the night he’d make his way to the basement, take out a sleeping bag, drag it up the stairs, and spread it out on the couch. It didn’t take long for him to create a deep dip in one of the cushions from his tired tush.

I talked to him again. I showed him the divet in the couch cushion. He was conscientious of his couch imprint. So he moved his sleeping bag to the living room floor. 

I didn’t think the floor situation would last long. Our living room floor is hardwood with a wool carpet spread over it. Not the cushiest sleeping material. But he persisted. 

I tried bribes. I made promises I’m not sure I could have kept. The call of the tiger was too strong. On the floor he slept. 

Yesterday I googled ways to keep your toddler in bed. He’s far from a toddler, but I simply needed a way to get him back into his bed, and there were no resources on how to keep your teenaged son in his bed that fit our situation.

So last night I took Wil’s sleeping bag and spread it on the floor of his room. I told him I was going to sleep there to keep the bad dreams away. He looked at me like I was crazy but he agreed to sleep in his own bed. For the first time in months. Wil went to sleep, in his own bed, without issue. I was so relieved at the success of this idea, that though my sleeping quarters weren’t ideal, my relief relaxed me into sleep. 

When I woke up, I silently exited Wil’s room. I went into the kitchen to make coffee and get ready for the day. Not a peep from Wil’s room. His door stayed blissfully closed. He went in and stayed in. 

About two hours later, I opened Wil’s door to wake him for school. He was not in his bed. He had taken my place on the floor in the sleeping bag, snoring away.

I guess we both had our wins.

A New Flight Path

On the day of Wil’s birth, the nurse said he was “floppy” which is a soft marker for Down syndrome. He melted into my chest. The soft, defined curve of his eyes warmed my heart like I’d known this love forever. At the same time, the shape of his eyes sent a hard marker of knowing deep into my gut. I wouldn’t let the knowing climb up to be processed by my rationale. I held it down like a child with hands clamped over her ears, singing, “la-la-la-la.”

We all have dreams for our children. Even if our children do not step into those dreams. Even if we don’t really expect them to. It’s natural to form a moving picture view of the future ahead. Our dreams point the way. When I could no longer hold down the knowing of Wil’s diagnosis, confirmed by a doctor’s solemn nod, I found myself staring into a blank future. In what direction do I go? It was a stand-still in time.

I stared into Wil’s eyes and wondered at the seeming randomness of it all. Though I received many words of consolation and many words of encouragement, I felt directionless. I had no reference point. I was lost even though people all around me shouted directions.  

My first step was to call a trusted friend, Beckie Brewis. She ran the First Steps Parents as Teachers program which Katherine and Elizabeth were enrolled in. She was also the Early On service coordinator (a program for children with special needs ages 0-5). She put me in touch with therapists for Wil. He soon started speech, physical and occupational therapy. Beckie and Wil’s therapists not only helped him take his first steps into speaking, walking and picking up Cheerios, they also helped me take my first steps into this life too. 

When Wil first learned to walk, his physical therapist, Shelly, helped him up onto a balance beam. Shelly held one of Wil’s hands and I held the other.  On a balance beam the only reference point is forward, or you fall off. “Look how he does that,” Shelly said as Wil advanced along the beam. “He doesn’t know how to walk on his own yet, but he is now able to place one foot in front of the other.”

Today Wil and I run like airplanes – our arms out wide, we dip, we skip, we circle, we jump, we zig, we zag, all through the landscape. Our path may seem directionless to some, but we know where we are going because our grounding is solid. Imprinted in the earth are our footprints, one in front of the other, the path of trusted friends alongside steadying our gait. 

Learning to walk through the blank space was how I learned to fly. You can’t spread your wings standing still with your hands clamped over your ears. The knowing that I once held down is now the air that lights my wings….arms out wide, ears open, eyes curved to the sky, la-la-la-la onward we go.

Photo: Beckie and Wil

We’ve Got Ourselves A Runner!

I intentionally started running in 2013, but when I think back, it really started around late 2009 or 2010. When Wil learned to dash.

The kids and I were part of an amazing parent-based learning program called First Steps (for babies up until your child went to kindergarten). The program was held in a school, within two adjacent rooms. There was a wide door opening between the two rooms.  As Katherine and Elizabeth are twins, and Wil only 20 months younger than they are, it seemed the 3 of them were always going in 3 different directions: Katherine would go immediately to riding the little tractor in one room (one day she earned herself a huge goose egg on her head, propelling herself along as fast as her legs would let her, until she encountered a countertop), Elizabeth in the other room with quieter tasks like the wooden puzzles, and Wil, as soon as he could walk, always found a moment to escape through the door to the open adventure of the long hallway.

With all of the parents in that room, Wil could have eluded even Columbo. He sought his moments in time when we were thus distracted, and he’d slip out the door and tear down the hallway in his little Stride Rite shoes.

Though every mother in that room was understanding, I always had an underlying “bad mom” feeling that my child was the only one constantly trying to escape. Then our Down syndrome support group started having indoor play dates with a University of Michigan student group called Motley Crew (a fun spin on the legendary rock band’s name as student group began volunteering at Mott Children’s Hospital). 

The college students of Motley Crew set up a single classroom at one of our local schools full of crafts and games. Despite this fact, I found that 95% of the kids in that room’s favorite activity was finding just the right moment to escape to the adventure of the open hallway. Instead of being the minority, Wil was just one of the “runners” as we moms called our kids.

Most of our kids would enjoy the crafts for a bit, but before long, even as fun and encouraging as this group of student volunteers was, the majority of the play date ended up being repeated games of Duck Duck Goose (at least that way our kids ran in circles and not out the door!).

As Wil got older, his running and escape methods improved. While at a basketball camp in the ginormous Chrysler Arena, all of the basketball players and their families assembled in the gym for a group picture. Wil was standing next to us one moment, and was gone the next. One of the moms standing next to Wil exclaimed that out loud, “He was just here!” 

There were no other events going on at the arena, so it was basically empty, but my largest concern was Wil getting outside and running near the road. I knew all of the moms there and we immediately split up and ran in search of Wil. Down one hallway, I came across an employee. “Did you happen to see a young boy with blond hair? He has Down syndrome?”

“No,” she responded. “But we have cameras up. I’ll see if I we can spot him.”


We ran down to her monitor room. Sure enough, Wil was going toward the outside doors. I made a mad sprint to get him.

As he’s gotten older, he’s not so much of a runner. However, when he does decide to go somewhere, he still slips out silently. Sometimes he’s still in the house, and he won’t answer me, so I’ve gone in desperate search for him only to find him in the basement bedroom quietly watching his iPad.

This is a common occurrence amongst other parents I’ve spoken with in our support group. One young man used to slip out to other houses in the neighborhood. It wouldn’t be uncommon to find him on a neighbor’s house watching television. One morning before school, his mom couldn’t find him. She called out his name with no answer, so then started calling her neighbors. He decided he wanted to read a book in the clothes dryer that morning, but didn’t respond to a single one of his mom’s calls to him! Not surprisingly, our Down syndrome support group often has discussions on alarms that can be fastened to a door so we will be alerted when our kids slip out the door. 

Now that Wil is a teenager, he’ll go off on what he calls “adventures.” The good news is he takes Woody, our yellow lab, most of the time. So if Woody is out the door, I know Wil is. Wil loves to collect sticks, so I’ll find him along our tree line (we live in a rural area and have 10 acres) finding the perfect specimens. He’ll come home hefting up either an impressive pile, or one solid walking stick. “Look what I found on my adventure, Mom!”

As Wil has low thyroid, as well as low muscle tone, this type of exercise, especially as it’s self-motivated, is good for him physically. The challenge is, of course, his safety, which again, he doesn’t fully comprehend. It’s a delicate balance as I certainly don’t want to quell his adventures as they are important for his health and his independence. I just wish he’d tell me when he decided he was going on one! 

But like everything with Wil, things come with time and lots and lots and lots and lots and lots of repetition and explanation. And I’ll likely always be a runner…at least as long as Wil is. 

In Wil’s Words

Wil and I laid on our sectional couch just before bedtime. Our heads together, we made a right angle given that we are almost the same height from top to bottom. My boy is growing up. 

“Mom, we read ‘The Shoemaker.’” I smiled. It takes quiet moments like these for Wil to initiate a conversation. 

“The Shoemaker? Was that in Ms. Kennedy’s class?” (Ms. Kennedy is Wil’s new resource room teacher.)

“Yes, up on the screen.” 

“Did you read it with the whole class?”

“Yes. There were elves.”

“Elves? Were they helping make the shoes?”

“Yes. They are cute.” Wil tilted his head closer to mine and smiled up at me.

“You are cute too.”

“I know.”

 “Tell me how the elves made the shoes.”

At quiet times like these, when Wil’s words are flowing and forthcoming, I wonder how many stories Wil keeps locked inside when the world is moving too fast for him. Wil is quick to laugh with his friends and interjects when he has something to say, but he rarely expands on his thoughts unless the time is laid out openly in front of him. When conversations are moving fast, as they typically do during the day, Wil is prone to stutter. Wil knows exactly what he wants to say but his words don’t come out fast enough and he gets stuck. “Use your soft voice, Wil,” is a cue we learned from Mrs. Charney, one of Wil’s speech therapists. Using his “soft voice” gives Wil the feeling of time and space laid out in front of him for his words to flow into.

When Wil is not forthcoming about his day (he is a teenager, after all), the topic of lunch usually gets the conversation rolling. Lunch revolves around his two favorite subjects: food and friends. Wil easily offers, in great detail, the day’s menu and the friends he sat with at the lunch table: “Seeger, Lila, Ashely, Sarah, Lilly…” This group of friends is gold, and happen to be 100% female. One of Wil’s homework assignments asked, “What do you want to do when you are an adult?” He thought about it for a moment and answered, “Football player.” 

“Hmmm, that’s an interesting answer.” I said. “You don’t play football. Do you want to learn how?”

“No.” 

“I’m pretty sure you have to know how to play football to be a football player. What else would you like to do?” 

“Get married.” 

“I’m not surprised to hear that. I hope whoever you marry loves listening to your stories as much as I do, Wil.”

“You are silly, Mom.”

Typical Truths

“He will always be happy.” “God only gives special children to special people.” “Kids with Down syndrome are angels on earth.” Or the dreaded, “I’m sorry.”

Words meant to heal. Words meant to help. Words meant to fill the gap of not knowing what else to say.I have experienced, however, these words don’t fit the truth. Wil is not always happy. I’m not any more special than anyone else. Wil may be an angel, though, because he has brought me to my knees in prayer on many an occasion.

So what are the words that heal? What are the words that help? What words effectively fill the gap when it seems there are no words to say?I didn’t know the answers to those questions myself after I received Wil’s diagnosis. I was shocked and confused. My typical hopes and dreams were instantly dashed. A large void stood before me. What do I fill that space with? I simply didn’t know.

In tears, I called a childhood friend, Kelly. As I blubbered on about my child having Down syndrome, she said, “Well, how much does he weigh?” I stopped my crying in shock. Such a typical question of a newborn. I realized I had not yet been asked any typical questions. I didn’t even know I wanted to be asked such a question until that moment. When everything felt a-typical, feeling typical was a healing balm.

Words such as “Congratulations!” “What a beautiful baby!” Or, like my friend, “How much does he weigh?” And the helpful yet typical lie, “You look amazing and you just gave birth!”

In those early days, as a mother, I was flooded with information on how different our life would be. I didn’t want to feel special, I wanted to feel “normal.” I already was feeling sorry for myself, so I didn’t want anyone sorry for me. Hearing such typical words was the healing balm I craved yet I didn’t know it until I heard it.

Every baby is a gift. Every baby is an angel. And every mom deserves to feel special after giving birth.

Champs of the Day

Two weeks ago, I shared a story with you about our tubing adventure on Lake Lansing with friends Cheri, Randy and their son, CJ. Thanks to Cheri’s patience, Wil overcame his fears and very tentatively got on the tube with her. With much coaxing, Cheri convinced Wil to go for a very slow ride. Wil’s fear morphed into thrill that day, and he couldn’t wait to come back for another try.

Wil’s second attempt was vastly different from his first. Wil eagerly hopped on the tube with his friend CJ, who also has Down syndrome. CJ is very adept at water sports. He tubes, wakeboards, ZUPs – you name the water sport and he’s likely an expert. He’s also fun to watch as he has great enthusiasm and knows lots of tricks. CJ, thus experienced, easily got up on his hands and knees on the tube. Wil followed CJ’s lead and propped himself up on his hands and knees. We all cheered Wil on from the boat.Wil and CJ bounced over big waves and even went outside of the wake. Wil’s smile never faded. What a transformation from his first ride!

After the tubing fun, we were all hungry. We decided to make a trip to Culver’s for a bite to eat. Wil loves a cheeseburger so he was pumped up. CJ was also pumped up to eat a cheeseburger with his friend, Wil. Cheri and I exchanged stories how Wil and CJ can tend to swallow things whole, as it’s so much work to chew certain foods. (Many individuals with Down syndrome have low muscle tone, making chewing certain foods a challenge.) Cheeseburgers are one of those challenging foods for CJ. He typically removes the bun and cuts up the cheeseburger. This day, however, CJ was determined to eat a full cheeseburger complete with the bun like Wil.

CJ watched Wil (an experienced cheeseburger eater) devour his cheeseburger, then looked down at his own cheeseburger with doubt. Cheri reminded CJ he could do this and she helped him cut the cheeseburger, with the bun still on it, into quarters to make it easier to chew. CJ picked up a quarter and bit into it. He chewed it slowly and tentatively.“CJ, you are eating a cheeseburger!” Cheri cheered. CJ looked at his mom with a huge grin. It was an exciting moment and we all cheered CJ on. By the third quarter CJ was eating like a champ. In fact, Cheri had to remind him to slow down! He finished his fourth quarter and we all reveled in his accomplishment. Not a light in the room beamed brighter than CJ.With the power of friendship, that tube and cheeseburger never stood a chance. Cheers to the champs of the day: Wil and CJ!

~Photo credit: Cheri Vincent Riemer

~Thanks for sharing this story Manchester Mirror: http://themanchestermirror.com/2020/09/07/stories-of-wil-champs-of-the-day/

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.