Trevor, The “Spokes” Man

For the longest time, Charley has been bugging. Yes, "bugging" us to get him a bike. Like every five minutes. 

It started around Christmastime.

"Mom, I want bicycalt," he'd say.

"It's winter. No one rides in the winter," I'd say.

"Oh, I do."

I'd open the blinds. "In the snow?"

"Yup."

"Not happening," I'd say, and he’d stomp up the stairs. I could hear him telling his things in his room, “Mom said no.”

Then spring came along. Enough time to forget about the bike. Thank you, Lord. Or was it? Every time we passed a bike in a driveway. Every time a bicycler passed us on the road. He'd point. "I me one." (Charley may have speech challenges, but never fails to communicate.) And I do mean, every. single. time.

"Mom, member, I want bicycalt," he said one morning. Thanks a lot, Lord.

"Maybe someday," I said. But probably not. Again, he’d stomp. His toys heard it all. “Mom said no. Again.”

Did Charley know how much these things cost?

Not that we wouldn't spend the money on him, but the last time we bought him a bike his foot got stuck in one of the spokes. He fell off, kicked it, and said, "It no work."

He never got back on.

I reminded him of that. "Charley, we can't just go buy you a bike. Everybody knows you're supposed to get right back on the horse."

He looked around. "What horse?" 

"It's a figure of speech, Son. It means when you fall off the bike you have to get right back on. You can't just give up."

He nodded his head. "Pleeeeaaaassseee. I promise." 

"We can't just go buy it. We have to save up."

"Woohoo!" His enthusiasm was contagious. So much so that I found myself at Dick's Sporting Goods looking at the bikes.

A sales associate approached me. "May I help you?"

"Yes, I'm looking for a bike."

"Who's it for?" she asked.

"My son."

"These are the girls' bikes," she said.

She was right. I was standing there looking at the girls' bikes. "Think one of these would fit me?" I asked.

"Sure, hop on," she said and held the bike. Steady now. Just hop on the bike. A little jump. There you go.

"Go ahead," she said. "Just a small hoist."

She'd obviously not noticed the size of my rear end. "There's no such thing as a small hoist," I said. She tried not to smile, but I saw the curves of her lips.

"I'm trying to see if I can get a bike to keep up with my son. He just got a three-wheeler."

"Yes Ma'am."

"Honest, I really want to do this."

"Yes Ma'am."

"I'm a little challenged. You see, I shattered my femur a few years back, and..."

"Yes Ma'am."

I had one leg over the seat (well, partially). And one leg still on the ground.

"I'll hold the bike, don't worry," she said.

"Don't let me fall." The bike wobbled.

Any minute now...

She looked at her watch.

"Lunch time?" I asked. Please say yes. Please say yes.

"Um, yes Ma'am." Would you stop calling me Ma'am? What do you think I am, 95? No wonder I can't get my rear end up onto this stupid thing. 

Need I tell you I came home without the bike? And worse, I came home without even getting on the bike.

Charley met me at the door.

"Mom, where were you?"

"Nowhere."

"You got my bicycalt yet?"

"Maybe sometime, but not today."  Epic F in athletic parenting 101.

Later that week I told my sister about it. "Marcy, I'm thinking about getting a bike. I saw one on the yard sale site."

I studied her face across the FaceTime screen.

"If I promise not to get one will you stop laughing?"

Every day Charley followed me around. "I promise. I promise."

What was he promising? I have no idea. That he wouldn't kick the bike? That he’d keep his foot out of the spokes? That he wouldn't abandon the attempt to learn?

As luck would have it, he stopped asking. Problem solved.

This ranks right up there with; how dumb I can be?

How long has he been my son? How long have I lived with that 21st chromosome? The one that operates like a diehard battery? Going on twenty-seven years now? Silence means one thing; he's concocting some plan to make me cave. 

Just when I thought that subject was a done deal, there was a knock on the door. It was the neighbors, asking if Charley wanted to come across the street and play basketball.  Thank you Lord.  New friends. It'll take his mind off the bike. 

"Charley's going to play basketball with Amanda, Shane, and the girls," I told Brad.

A few minutes later I looked out the window and what do you think I saw? My adult son on the little girls' tricycle. And there, right beside him, were the neighbors. Walking down the street with my son as he attempted to peddle a bike meant for a four-year-old.  Needless to say, it was a little top heavy.

We have great neighbors!

"We gotta get him a bike," I told Brad and posted a picture of him on that tricycle. In my post, I asked if anyone knew where we could get an adult tricycle. A half-hearted attempt at best. 

That’s me, the one hiding in the computer. Mother of the year. I'd done my part. At least I tried, didn't I? At least we wouldn't be chasing him around on some bike. I stand accused of being a little overprotective. Ok, not a little. A lot. Point taken.

The next day rolled around. "Mom, you got my bike yet?" His face lit up with anticipation. 

He had that same look on his face that he had when he was determined to take his friend Jordan to the prom. I told him it probably wouldn't happen. Still, he insisted. "Oh yes I are," he said. Little did I know that it was Jordan who invited him, not the other way around. The next thing I knew, he was in a tux. The man doesn't give up. EVER.

"No, Charley, I didn't get a bike yet. Let's talk about it later, ok?" 

His scrunched grin wilted. "My friend got bicycalt," he said, his voice dropping a few decimals, referring to the neighbors and their pigmy-sized little three-wheeler, like, geez, Mom and Dad, you guys just don't get it.

"Forget about it, Son. Now I have spoken. Drop it. It’s not happening." Lord, he's wearing me out.

That settled it. We needed to get him a bike. But how? How do we do the impossible?

I sat down in my recliner and flipped open my iPad. Time to look at the newsfeed. To see what was what. And what do you think I saw? 

A message from our friend Jackie at church, who said her friend Trevor saw my post and wanted to give Charley a bike.

Could this be? Someone, would do this for our son? Someone, he didn't even know? Someone we’d never met?

Now. Before I go any further, I must tell you; it wasn't the only offer. Our friend Tina from Knoxville saw the post too. Two offers of getting a bike for Charley. I nearly fell out of my chair. People are so generous. There's a reason I walk around with a lump in my throat.

Before I knew it, Trevor made a house call. Accompanied by his Mom and Dad, and an adult sized tricycle in the back of a truck. 

Our new friends, Trevor, Tim, and Mary Gross

Charley had no idea. It was Trevor's surprise. And it was not just any bike, It was his bike. He'd learned to ride a two-wheeler, and told his Mom about Charley. 

Without a thought for himself, or seeking recognition. Just a simple gesture. At least, that’s what he thought. But it was so much more than that. 

Every day Charley runs downstairs and says, "I go on my bicycalt?"  And every day, he peddles his way around the neighborhood. And then again. And again. And just like that, Charley has gone from a man on a little trike to a big tyke on a bike. A big deal on wheels.

Yesterday during my husband's sermon he was talking about Ecclesia, which means "to go out." 

"That is what we are called to do as a church," he said. "To go out. Not to keep to ourselves in a building, but to take the church out of the building."

As I sat there listening to him, I thought about Ecclesia and the people I've known over the years who know how to go out. Those who take meals to shut-ins, and communion to those who cannot come to the church. Those who make home repairs for the elderly, and visit the sick in the hospital. There are a lot of ways to practice Ecclesia.

Sometimes it directly benefits the church, and sometimes it's just a gesture. It's church. It's what you do. Any way you look at it, to practice Ecclesia is to do what God asks us to do.

A minister can stand in a pulpit all day long, but taking it to the people? That's Ecclesia.

Something else I thought of yesterday. And oh boy, I couldn't get it out of my mind.

I thought of Trevor. And how he said Jesus had put it on his heart to give his bike to Charley.

How is it that we’ve been a clergy family for as long as I can remember, and yet along comes a young man with an extra chromosome who seems to nail this thing called Ecclesia? This knowing how to go out. This sharing about Jesus in his heart. This “Spokes”man, who’s gospel message rides its way into our hearts?

I usually write about Charley. But this is Trevor's story. It's about a young man with an extra chromosome. The world refers to it as Down syndrome. 

I refer to it as heart. An extra heart, if you will. 

It takes heart to reach out to someone you don't know. To see a need and fill it. To take something you value and offer it to someone else. To get pleasure from making others happy. To expect nothing in return. No ulterior motives.

In a world that seems to concern itself with me-isms, boasting, and upping one another, it's good to know there's a Trevor in the house. A Trevor with a heart bigger than the love of self. A heart that's worth writing about.

A heart that reached out and into the heart of another special needs young man.

Trevor, your Ecclesia is showing!

I've always said, "Don't underestimate that extra chromosome. The one that makes Down syndrome such a mystery. It often surprises in ways we least expect."

On second thought, forget about the extra chromosome. Trevor has enough heart for the rest of us.

Charley and Trevor

HOME

How many times have I said, “Put your dishes in the sink!” I confess I have used a high-pitched whine, as if turning up the volume will deliver the desired results.

And do they land in the sink? Well, no. Not always. Okay, not ever. Well, hardly ever.

Each time I remind my son, he says, “Ok Mom," in a dismissive tone, that can only mean, "I heard you the first time. And the second, and the third, and I've lost count."

“I’m not kidding, Charles Benjamin. What do I look like, the maid?”

He thinks this is funny. I know this because he’s Skyping me from his bedroom, and he’s falling over on his bed laughing.

Time to lay down the law.

So I look into the camera. “I'm so sorry.”

He gets this serious look on his face, like, “Huh?”

"Yeah, sorry about lunch, honey."

He waits for an explanation.

"Have you heard the news? The cook just quit." 

This gets his attention. See the face? The carefree grin is gone.

“New rule,” I say. “If you don't put your dishes in the sink, you don't eat. This means that the spoons collecting under your bed must find their way to the soapy water. Your plates must grow legs and run down the stairs, where they are to dive into the sink.”

Then he laughs again, and says, “Oh.”

So here he comes downstairs. “Mom, I show you tometing (something).”

I go to the kitchen, and he points out that he has poured the entire bottle of A1 Sauce on his plate, then covered it with frozen French Fries. He is preparing to stick it in the microwave (because who cares if the cook quit? He'll cook it himself, thank you very much).

And since I’m always getting after him for the amount of A1 he uses (wastes), he thinks if he puts the French Fries on top I won’t see how much sauce he has on the plate. Nice try.

Into the microwave goes the plate. His arms go around my neck. There are hugs. Kisses. Tickles. More hugs.

And up the stairs, he goes. To veg out with his movies and eat his fries. 

In the meantime, I’ve done the dishes, sprayed 401, wiped down the counters where I will condition the pillow I've just finished knitting. First, up: submerge in water for a short while in the sink. I like this new SOAK. It has a floral fragrance. Won’t it smell nice on the couch?

Next, I will place the knitted piece in a bath towel and roll it up to absorb the water, and will then place it on the drying blocks and pin it down, all while keeping close eye on this bad boy right here, who likes to jump in the middle of my knitting, do a little dance, and shred whatever’s there.

Don’t let him fool you with that innocent face. He knows he’s bad because he cries before he gets in trouble, which is every time he gets ahold of my yarn. He just walks all over the house, crying into the wind.

Charley is good to sound the alarm. “Mom, Gizmo got your yarn…”

And I come running to pull it out of his teeth.

But today, I’ll keep close eye on this yarn monger, to make sure he doesn’t see the knitted pillow drying on the dining room table.

At least, that’s the plan.

This pillow has been a challenge to make, but I think it’ll make a nice addition to the house. It has the word “HOME” knitted into the fabric. Just think, everyone who visits will know this isn’t just a house, it is a HOME. The pillow says so.

But first I must head to the kitchen to retrieve my brand new pillow, scented with this fragrant SOAK, and what do you think I see?

This.

And there it is. My Brown Sheep Lamb’s Pride Wool knitted pillow ( I bought the yarn at the Carriage House in Kingsport.  If you haven't visited, you'd love it. Here's the link... The Carriage House. The pattern I used is on Ravelry, by Mary Lee.) 

It's soaking, all right. In A-1 sauce. Ah. So he was listening. 

I’m not about to admit what I said. Sorry, use your imagination. Wonder what the sheep would say? After all, it was his backside that gave up the wool that now soaks in sauce meant for a steak.

I have half a mind to call my son downstairs and have a come to Jesus meeting. I said put the dishes in the sink, NOT in my knitting.

Instead, I grab the pillow out of the A-1 water, rinse it, put in more SOAK, soak it again, rinse it again, roll it in the towel, and pin it down on the drying board.

And there it is. The reason I get out of bed. Right there on the pillow, looking back at me. The word “HOME.”

The reason I breathe in and out.

And I am reminded that pillows, knitting, A1, are all replaceable.

HOME, is not. 

Neither is my son.

And that’s ok. I’m at home with that.

I cannot help but laugh out loud. 

He Skypes me again from his bedroom. He's grinning again, proud of himself.

“Hi Mom,” he says. “I put da dish in da sink.” 

I could fuss, but how confusing would that be? How was he to know that the brown pillow soaking in the soapy water in the sink was a work of art? Could have been an old dish towel for all he knew. 

There’s only one thing left to say. “I saw that. Thanks, honey.”

He looks into the camera, blowing me kisses. 

This 26-year-old funny little man I call my son reminds me every day what HOME is. What it is supposed to be. 

That’s it’s not a museum. It's a place that gets messy.

It's where your heart should be open wide, and your arms wider, waiting for that hug that only your loved ones can give. 

It’s a place where you can and should laugh, and do it often. 

A place where you don't have to take yourself so seriously.

Where the dish might land in the sink if you’re not careful, and where A-1 will land on your pillow. 

Where hugs and sticky kisses abound, and where you are listened to (occasionally), and valued. 

A place where space is shared, where things take up more space than they should, and where there is always room for you.

A place where your opinions matter. Were YOU matter.

Where you can be you.

Where you are in competition with no one because being you is all you need to be. And that's pretty good stuff. 

“You happy, Mom?” He says.

I assure him that I am. (Even if I’m not happy about the pillow.)

Not to worry, there is good news. A-1 makes an interesting soak, which means the pillow is still brown. 

It's also on the couch.

 I look into the Skype camera. There's that face again.

“I love you, Mom,” he says.

I love Ewe too, my son.

Many, many thanks to "Where Hope Grows" for sharing this story from "The Mighty" on their Facebook page. How My Son with Down Syndrome Fixed a Hotel Problem I Couldn't

How My Son with Down Syndrome Fixed a Hotel Problem I couldn't

In our house, we are big fans of Where Hope Grows

If you have not seen this movie, you have missed a blessing. It's available here:

Where Hope Grows

and here: 

Where Hope Grows

Word is, you can also find it on Barnes and Noble, and at Target, Best Buy, and a host of other locations. 

Now. Let's talk about The Mighty on Facebook. This is where you can get your daily cup of inspiration. Stories written by people just like me. People who face everyday challenges.

What do I love about the The Mighty? Well, just about everything. I love that it's a bright spot in an often too dark world. If you are looking for a pick-me-up, here you go. While you are at it, why not share it with your friends, and pick them up too?

An official shout out to The Mighty ...  What you do matters more than you will ever know. Thanks, thanks, thanks, from Life With Charley

We Need a Sign

If you are a supporter of The Down syndrome community and have not heard about Rob Snow, then you are in for a treat!

One of these days I hope Charley and I can meet Rob. His book will tickle your funny bone! Enjoy!

A Word about BIRD

On the hunt to find another bird. This one came from Cracker Barrel...that place that costs money every time I walk in, and I don't mean lunch.

If you read my book, then you know all about "Bird."

If you didn't, then let me enlighten you...BIRD repeats everything Charley says. Twice. So just in case you weren't sure you heard it right the first time, BIRD repeats it. Sometimes this makes Charley happy, like when he and Bird are watching a movie together.

Charley will say, "See dat?"

And BIRD will repeat him. "See dat? See dat?"

Sometimes BIRD makes Charley mad. Like, when Charley is mad at me, and he goes to his room to tell me off. 

Charley says, "Mom mean."

BIRD says, "Mom mean. Mom mean."

Or when Charley lets a cuss word fly. "Dum it!"

BIRD says, "Dum it! Dum it!"

That's when he doesn't want me overhearing. He'll say, "Sut up BIRD!"

And Bird will say, "Sut up BIRD! Sut up BIRD!"

I guess you could say that besides his DVD player and his tape recorder, BIRD is Charley's favorite toy. So much so that it has cost me, and cost me...batteries, and more batteries, not to mention that BIRD cost us $20.

Well, today tragedy struck. Brad and I are having our coffee, and here comes Charley. He's crying. "Mom, BIRD broke."

Oh no.

He holds BIRD out so we can see. Sure enough, his head was dismantled and it's wires were sticking out. BIRD had to go. But not before we promised to see if we could get him another BIRD.

I know this is wrong, but I am sitting here praying that we can find him another BIRD.

See, BIRD is not just a talking toucan...it's Charley's best friend. So when he said, "BIRD broke," he was saying "My best friend broke."

So yes, it's Sunday...a day of prayer and meditation. This is the Lord's day. It's also a trip to Cracker Barrel. 

Can I ask you to say a little prayer that BIRD, or at least his twin will be there? Waiting for a beautiful, sweet young man named Charley to give him a good home?

And as Charley would say, "Kanks."

Announcing: The Parent's Guide to Down Syndrome - Blog Hop!

Looking for the perfect gift for a family member or friend? Looking for a resource for yourself, or someone you love? Know someone expecting a baby with Down Syndrome? Look no further. 

Have your heard? It's a blog hop!

Written by my friend, Mardra Sikora, and Jen Jacob, this is the book you want to suggest if you know of a parent of a child with Down Syndrome.

I'm reading this now, and believe me, you won't be disappointed.

I'll be reviewing this book in the near future,  but until then, you can hop on over to the Blog hop and take advantage of some great giveaways.

Here's the link: Parent's Guide to Down Syndrome Blog Hop

 Giveaways: This prize includes: An “I love someone Down syndrome” tote, an advocate coffee mug, a great variety of books including, of course, The Parent’s Guide to Down Syndrome, plus fun t-shirt, stickers, and more! A value of over $150!

Lots of great give-aways!

Fabulous information!

What an opportunity!

And, while you are at it, won't you please share this information with your friends? Someone, somewhere can benefit from the information in this book. And you, can be the person who shares it.

Again, here's the link: Parent's Guide to Down Syndrome Blob Hop

So how do you or your friends purchase a copy of this treasure? It's all there on the blog hop, but just in case, you can find it here: 

Mardra Sikora, Author's page

and here: 

Amazon Link to Parent's Guide to Down Syndrome

and here: 


Barnes and Noble link to Parent's Guide to Down Syndrome

                           

From all of us at Life with Charley, congratulations to Mardra Sikora and Jen Jacob, for producing this fantastic resource!

Gwanny

There is an old song, titled "Till There Was You."

It's one of those songs that stays in your head. You find yourself humming it in the shower, smiling a little at the thought of someone special. Someone who changed your life.

But what if that someone is gone? What if you don't know how to explain it to your precious child, that the person they loved so much is gone? And where did that person go?

I was faced with this a couple of weeks ago after Mom, Charley's "Granny" passed away. Theirs was a special relationship. When Mom was here, they Skyped every day, and did their share of laughing at each other.  He would tell her of some infraction I'd committed, like making him clean his room. She would tell him he better get busy and he'd laugh out loud.

There was no limit to how much Mom was amused by Charley. She laughed at him on a regular basis, and he loved it. They both had big personalities...and yes, the two deserved each other.

Charley and his Grammy. Or, Gwanny, as he called her.

Charley visited his Granny at the nursing home a week before she died. He sat in her favorite chair, and withdrew into himself, watching her. He didn't have to say a thing...his face said it all. The fear of losing this important person in his life was unthinkable. It's still unthinkable.

So he buried his head until he finally wore himself out, and fell asleep. 

Mom told Charley she loved him, and he kissed her. 

The next time he would see his Granny, it would be at the funeral home, where I made a HUGE mistake.

Us parents of people with Down syndrome. Or should I just say, me. I'm so afraid of scaring him. I want to shield him from life - and death.

There was no viewing, no closure. Just an urn.

How do you tell someone with an extra Chromosome that the person he loves is in an urn? I wasn't prepared to explain cremation. I'm barely prepared to think about it, much less put it in words my chromosomal son can understand. 

He looked for her. 

Of course he did.

"Where my Gwanny?"

"She's gone to heaven, honey," I said.

"Where is she?"

"She's with the Lord."

"I want to see her."

He wasn't the only one. She would have known what to say. Me, on the other hand? Not so much.

After the funeral we headed out to the gravesite where we released a single dove. 

"Where Gwanny?" he said again.

"See that dove?" I said. "That's Grammy. She's flying up to heaven to be with Bobby (Dad)."

"No, not." 

He looked at me like I was an idiot. Or, at least, a liar. Grammy hadn't turned into a bird. Just who did I think I was talking to?

There wasn't much I could say.

So we didn't talk about it. We did what all of us McCaulley's do - we withdraw, and think it will go away. And it did.

Till yesterday, that is.

We were sitting in the den, and he was eating oatmeal pies.

Out of nowhere, he started to cry.

"I miss Gwanny," he said.

I've known this was coming. He has delayed reactions.

"Granny loved you very much, Charley," I said.

"I love her," he said.

"I know you do, honey."

"Pwease, call Gwanny."

"I can't sweetie, Granny passed away."

He cried some more. I kissed him. Held him.

"You'll just have to Skype with me, instead," I said.

And we did.

He went to his room, and called my cellphone.

And called it,

and called it,

and called it...

I suppose it takes what it takes.

Now he's calling me. And calling me. And Skyping me. And Skyping me. And...

It's driving me crazy. And yet, it isn't.

Mom would have like that.

Thanks, Mom.

RIP, Gwanny

The year of You

How do you know when you've made a difference? Some people have no idea how much of an impact they have made in someone else's life.

This will be a work in progress, because when there's a Charley in the house, anything can and does happen...meaning, I get into the middle of writing and get pulled away, like right now... be back in a sec...

Back now... had to run to the front door. I heard it open and out he went.

This is what it's doing outside, and Charley just headed to the mailbox. Does he have on his shoes? I don't know.

Has he got on a jacket? I don't know.

Will he track snow through the house? This much I know.

If you know anything about people with Down syndrome, then you know what I know, and yes, I'm generalizing here...they are relentless. When they get something in their heads, good luck getting it out.

Charley is waiting for something in the mail, which means he asks about it every 5 minutes.

Until it comes, that is how it will be. Even when I say, "Stop asking."

But back to the subject at hand.

The year of you.

All of you, who made a difference in the life of Charley.

Those of you who befriended him...

 

This year will be about you.

 

Beginning with Mom.

 

You can find her in the book. In fact, it's a love story, 25 years in the making. If you read my previous post, then you know. If not, I invite you to back peddle a little and catch up so you know what the rest of us know.

 

Mom and Charley Skype nearly every day. They are separated only by the miles, not their hearts. Charley is crazy about his Grammy.

 

"I love you, Granny!"

 

 

Yesterday, Brad, Charley and I made the journey to Louisville. Mom is in the nursing home. The family called. Mom's not doing so well.

 

This time Mom wouldn't be able to Skype with his Grammy, so he would just have to go see her in person...

 

More on that in my next post.

 

Thanks for reading,

 

Love from Sherry, Brad, and Charley