Thursday, December 18, 2014

God Things


For some reason, this post will not maintain a consistent font size throughout. That's okay though, as long as you have x-ray vision toward the end of the post. Though tiny, I mean it just as much as the rest of the post - maybe even more. God things come in good packages. Don't adjust your screen - that wasn't a typo. I meant to say God things. Chromosomes are God things.

Sometimes I look into the eyes of my precocious, funny, sweet-natured, son and wonder how the world got so lucky.  How did I get so lucky? God must have loved us all so much to have handed out those God things known as extra chromosomes. True, they aren't for everyone. Only a select few are to know the wonder. The forever innocence. The dance of Down syndrome. 

"But Sherry, you don't know the heartache of waiting 9 months for the perfect child only to have your hopes and dreams crushed by a An extra chromosome called Down Syndrome," you might say.

Thar's true. Those of you who know me already know my story, how Charley came to live with us. 
Just because I didn't wait for 9 months for the perfect baby doesn't mean I didn't want one. The thing is, in my opinion, I got one. 

When I read about that nut case in Denmark who thought it would benefit the world if those who have been blessed with an extra chromosome were eliminated from the human race, I wept. Then I went directly to Amazon and purchased Mardra Sikora's essay, "Arguing Eugenics." 

Want to know more about this heated issue? Mardra explains it in this well-written essay that is grounded in research and personal experience, Mardra Sikora's "Arguing Eugenics" extends beyond the subject of genetic testing (for the purpose creating a society free from the burden of Down syndrome) and into the heart of a world in danger of eliminating much more than an extra chromosome. As a writer and mother of a young adult with Down syndrome myself, I applaud Sikora's ability to lay out the facts while making the reader think with their hearts through the logic of her son Marcus.

"Arguing Eugenics"(You can find it on Amazon), takes a subject often written about in medical and technical terms, and fine tunes the lens to so those unfamiliar with Down syndrome can see clearly how whole communities would suffer the consequences of eliminating often the most compassionate among us. If I were to sum it up, I would wager to say that a world without Down syndrome is a world in danger of reducing itself to breathing in and out. While Sikora does not glamorize naïveté regarding special needs individuals, be it children with cancer or those who are born with spinal bifida, rather, she is a realist who sees the value in every human life, while charging the rest of us to do the same. What gives anyone the right to decide who has value and who does not? What gives anyone the right to decide that another human being is a burden? I agree with Sikora one-hundred percent, no one has the right to set that criteria. Not Denmark, not anyone.

I found Sikora's essay to be an invaluable piece of research delivered with wisdom. Mostly, however, I found it to be a fair synopsis of the lives faced everyday by special needs families. There is no perfect person. Aiming for a perfect world filled with only perfect people (which means a world without that extra chromosome) is no world I want to live in. I cannot imagine a world without the unconditional love of individuals with Down syndrome. Apparently, neither can Sikora.

There is a society, however that does not agree. If Denmark is knocking on that door, I say don't open it. Be very afraid. When one knocks others do too. Before we know it, Down syndrome will cease to exist, and so will life as we know it for our loved ones who are game changers.

The choice is ours. Want a perfect world? Step right up. Get your one-way ticket to Denmark. Personally, I'd rather count my God things. My chromosomes. Want a world of perfect unconditional love and acceptance? Then send in the Down. Rock on, Marcus. Be that agent of change that Sikora writes about. Be that God thing. And listen up folks, don't even think of sweeping this one under the rug. Sikora is in the house.


We adopted Charley twenty-four years ago at Christmas time. Believe me, there is nothing you could wrap and stick under the tree that could come close to the gift God game me that day. It was the perfect God-thing gift. Did we know what to expect? What to do? How do do it? No. 

But here's one thing I do know. When I count my blessings, I count God-things. That includes chromosomes.

Merry Christmas to me.


                                             



Sherry Palmer is the author of "Life With Charley: A Memoir of Down Syndrome Adoption" (available at Amazon)





Friday, December 12, 2014

In the Advent if a Hootenanny


Rerunning this post from Christmas of 2012 in response to the Facebook question of what was my favorite John Knox Camp moment...it's something that couldn't be wrapped in a box, amd one of my favorite CharleyMoments ever...enjoy!


     Sometimes it must be hard to be Charley. Wanting to fit in. Sitting on the fence of different and same. If he stays on the side of different, the way is cleared for him to be a twenty-two year old boy in a man’s body, refusing to take a shower. If he stays on the side of sameness, wanting to be like everyone else, then what we have is a man in a man’s body, expected to take the shower like a man.

         What we forget is that his Down syndrome is the gateway to rising to the next level. The person who sat in the back seat asking, “Where goin’ Daddy?” is the same person who went with us to the Camp and Conference center for an Advent dinner Friday evening. He didn't want to go. Not for one moment did he want to put on a suit coat, and hang out with us old fogies. Typical.

            From the moment we arrived, he tried his best to mingle. Those of us who live with Down syndrome know only too well how the tangled tongue gets in the way of casual conversation, so he stood with chatting people, trying to act like them, until he couldn't stand it. “I got me wawet,” he blurted. But try as they might, they had no idea what he was saying, and quizzed him until he finally pulled out his wallet only to show them a picture of Harry, from Harry and the Henderson’s.

            So much for mixing. He plopped onto the couch and slumped into the cushions. I walked over to see if he was okay. “Dis bo-wing,” he said.  And why wouldn’t he be bored? The people at the party ddidn'tspeak CharleyEase, which made him odd man out. Meanwhile, I felt a lump in my throat and visited with other partygoers, while watching him out of the corner of my eye. Poor guy. Poor him. Poor man who wants to fit in.

            “He’s doing well,” someone said. “You aren’t kidding,” I said, because right about then in walked a blonde girl (we’ll call her Girl #1), and she was what Charley would call, “Hot.” And just like that, he had a date. Well, he had a dance. The music duo played their guitar and fiddle. Hootenanny, anyone?

            He thanked Girl #1 for the dance, and in my watchful silence I thanked her too, for saving an evening that had the potential to crush my son under the weight of the knowledge that he was and always will be Downs and that there’s not a thing he can do bout that.

Still, Girl #1 put a smile on his lips, and just as we thought that was that, in walked Girl #2, a brunette, who accepted his invitation to dance.

The next time I looked, he was dining at Girl #2’s table, following her to the buffet, helping himself to an iced tea he had no intention of drinking, and glaring at me like I’d better stop watching him or else. I tried not to look. I did. But what kind of mother would I be if I didn't give him a dirty look when he used his sleeve as a napkin?

            Meanwhile, Girl #2 spent the rest of the evening with him, and Charley was no longer odd man, he was simply a man.
Because different or same, when you have DS it doesn't matter which side of the fence you’re on, as long as the girl’s on your side.

Sherry McCaulley Palmer is the author of Life With Charley: A Memoir of Down Syndrome Adoption available on Amazon and Barnes and Noble. 





Tuesday, December 9, 2014

Season's Ringings



This is one of my favorite pictures of Charley. It's not the prettiest, but it is one that makes his Mama proud.

I posted this story in 2012 and well, I like it, so I'm posting it again. I like it because not only is it a picture of he and his Dad, it captures Charley stepping out of himself and doing something for somebody else. It also connects him to tne Kiwanis Club of Norwood as they ring the bells for the Salvation Army here in Knoxville. You must understand, this Kiwanis Club has all but adopted Charley and he's quite proud of that. Not only have they walked on his behalf in the Buddy Walk for the Down Syndrome Association of East Tennessee, they have also made him an honorary Kiwanian. And a very special honor it is.

So, here is the re-run of ringing the bells in 2012.


I call this one, "Season's Ringings..."


T’was the day of Black Friday and all through the town, the ringers were ringing, that holiday sound…

We see them every year, the bell ringers, the freezing few who stand outside the stores, reminding us shoppers that there are those in our communities who need our help.

When Charley was younger he’d try to talk the ringers out of their bells. “I me one,” he’d say, and Brad would give him a dollar to put in the bucket and then we’d be off on our way to celebrate the season.

He’s twenty-two now, and he still wants the bell. Every year he says, “I have it?” as he puts his dollar in the bucket.

So. Brad decided this year would be different. This year, Charley would get the bell. At least for a little while.
           
“Where goin’ Dad?”

“We’re ringing the bells,” Brad said.

“Why?”

“Because there are people whose needs will go unmet if we don’t. People are hungry, cold, and lonely. Bell ringing provides food and shelter. Unfortunately, there’s not much we can do about the loneliness.”

“Lonely?”

“Yeah, Charley, there are lots of people who have no one to share their lives and that makes them lonely. We have to reach out to them.”

“Okay, Dad,” Charley said, as he put on his red apron and picked up a bell.

Ring, ring. Ring-a-ding dingy. The two men in my life set out to keep people from being cold and hungry.

Now, if I recall from years past, the ringers stand still, and their arms go up and down, ringing. But at no time do I remember the ringer dancing and singing, but where tradition ends, Charley begins, and new traditions are born.

Dancing, ringing, singing, and informing everyone on their way into the store, “Need money here,” pointing to the bucket, doing the happy dance. That’s the Charleyway. 

Into the bucket went a dollar.

“Kanku,” Charley said. “Oh sir, money pwease.”  Plunk, another dollar.

One poor woman was heading into the store.

“Hello, Maam, you got money?”

“I’ve already given several times,” she said.

“Again!” he said. “Money fo da po, over here.”

Into her purse went her hand, and yep, out came a dollar.

Shopper after shopper, the teenage girls got a handshake or a hug (no one’s lonely on Charley’s corner). Even the kids gave him money. “Call me,” he’d say as they slapped him a high-five. Unless they didn’t give. Then he’d clear his throat and say, “Uh-hem. S’cuuuuse me, you got money?”

Brad told Charley that soliciting was one thing, hounding was another. “You are NOT to embarrass people into giving,” he said.

“I no bawassacud, Daddy. I winging da bell, dey got dollars.”

“But you’re not supposed to chase people down the sidewalk, Son…and you are NOT to hit them up twice.” The thing is, Charley would collect a dollar on their way into the store, and then talk them out of another on their way out.  One man admitted to stopping at the ATM because he didn’t want to come face to face with Charley. Not unless the happy dance followed.

Maybe it’s his Down syndrome innocence that opens the hearts around him. I don’t know. But I do know this; sometimes it takes a special needs person to remind you that if you are going to give, give with your whole body.

If you are going to ring, make sure the bell is heard.

And if you venture out this season, do it with a dollar in your pocket.

You never know where Charley might be lurking. I mean ringing.

                                                      *  *  *

Sherry McCaulley Palmer is the author of Life With Charley: A Memoir of Down Syndrome Adoption available on Amazon and Barnes and Noble. 


Tuesday, November 25, 2014

A Loss for Words

Waiting for the ladies

Having worked in the nursing home industry for nearly 20 years, I am no stranger to elderly ladies. I find them to be an incredible source of fun. Charley has not always shared my sentiments. And with good reason. When he was little we went to a new church. Not knowing anyone was in itself a challenge, but there happened to be a lady (I'm guessing around 90 years old). She was a very sweet lady, and was excited about meeting  Charley. Poor lady. Who could have known?

Charley was headed up the aisle, and there she came, from the other direction in her wheelchair. The two came face to face. That was okay. He started to say hi, but she reached out to shake hands with him.

All of a sudden, his eyes widened, and he screamed "Bwood!" At that, he bolted and ran from the sanctuary.

The lady looked at me. "I have no idea what just happened," she said.

But I did. She had long bony fingers and extra long fingernails painted with bright red nail polish.

"He thinks your fingernail Polish is blood," I said. "I'm so sorry."

At that, she burst out laughing. “Imagine that,” she said. “I’m bleeding and didn’t even know it.”

I hate to admit this, but as the Pastor’s wife if there was ever a time I had good reason to lose my sense of humor, this was it. The very thought that he would even think of offending a little old lady with his honesty. Turned out, I was more mortified than she was.


After that, Charley was a bit leery of elderly people. In fact, he wouldn't have much to do with them. The good news is, that was a long time ago. Now when the older ladies at church speak to him he tends to speak back, thank you, Jesus.

That's why I was a little concerned yesterday. We were to pick up an older lady and her daughter (who happens to have special needs), and give them a ride to church. I secretly hoped he wouldn’t be rude and hurt their feelings. All it would take would be some inappropriate comment. He better not, that’s all I could say

On the downside, he pitched a fit. Why? It had nothing to do with that lady or her daughter, rather it interfered with his plans to get to church and flirt with Tiffanie. How dare me take a detour.  I gave him my best scowl and drove right past the church. “You’ll just have to wait. It won’t kill you.”

“Yes I are,” he said.

“No it won’t.”

“Wash you attitude, Mommy.”

“You watch YOUR attitude, son."

That’s what arguing sounds like in our family. Then, when fussing doesn't work, we employ the silent treatment. So, we drove to the ladies house in silence. Stealing glances at each other, quickly turning our heads if the other spotted us looking, smirking, hanging on every silent glare.

On the upside, they didn’t have to witness this little exchange. Also on the upside, it was short-lived. When we pulled up at the lady’s house, he got out of the car and went to the door to get them.  Joann came out first, and got in the car. Her mother wasn’t so forthcoming.

In fact, we sat there a while and waited. And, waited. I didn’t mind. After all, sometimes people need a few extra minutes, but I could see him shuffling from foot to foot on the sidewalk. “Impatient buzzard,” I mumbled under my breath. “If he says one rude word to that lady, why, I’m gonna give  him a piece of my mind. I'm gonna give him a good reaming out. I'm gonna...”

And then, oh me of little faith, I found myself at a loss for words. Not only did he pull an attitude switch on me, he ran back to the car and opened the car door, peered in at Joann, and said, “You Mom comin’.”

Back he trotted, half-way up the sidewalk. Shuffling some more, then running back to the car again.“You  Mom comin’, I pwomise.”

Joann nodded at him.

Back to the sidewalk again. More shuffling.

“You Mom be here wight away.”

I couldn’t help it, he was so sweet I cried right there. He turned to me. “No cwyeen, Mommy. Dwy up.” Of course, this made me laugh.

And then, there she was, out the house and down the sidewalk, headed to the car.

And there he was, opening the car door, making sure she got in okay. So mannerly. So manly. This man, who fussed about long bony painted fingers so many years ago. Today, his fingers wrapped around the door handle as he opened and shut it for the lady. Then he slid into the front seat and winked at me, like, “I got this.”

He sure did.

No words needed.

Saturday, November 15, 2014

Charley NFocus


Charley and Pam Brooks - No wonder he's smiling!
If you asked me what Charley's biggest wish is, I would have to say he wishes to be a part of. In a word, he wants to be connected. To be in an arena where everyone sees him as he is; a regular person. Not a man with Down syndrome, but a man. On his terms, yes. But, accepted just the way he is. If he could articulate it, I believe that's what he would say.

On Thursday, November 13th, in Louisville, Kentucky, he got that chance. Thanks to the gracious invitation of Pam Brooks (My former school chum) that was extended to my family, we were guests at her table along with other representatives from NFocus Magazine for a night of spectacular food and entertainment at the March of Dimes Signature Chef fundraiser.

All right, helicopter mom that I am, I admit to momentary visions of how he might (or might not) fit in. How would he handle the crowd? (They were expecting at least 600 attendees). What would he eat? (Bye bye hamburgers. French Fries be gone - Hello gourmet feast). What if he wanted a glass of wine? (He is of age, after all). What if he got so excited that he danced a little jig in the midst of all those business suits and cocktail dresses? (He tends to do that when he's happy). Who would he sit with? (Besides his hovering parents). Would he be lonely? Who would he talk to? Charley has been known to rise to the occasion before. I was hoping this would be one of those times.

And was it ever. Even with all the action offering plenty of distraction, I couldn’t help but focus in on that grin of his. Sampling the cuisine. Watching the live auction, doing a little dance with one of Pam's associates after the dinner. Lonely? Not in this crowd. One by one, people stopped by to speak to him. Pam kept him informed of what was going on and what was coming next.

There are words for that night. NElectric. NSupercharged. NDelicious. NFascinating. NBenevolent. NCluded.

One might think Charley had a wonderful time. He did, but it was so much more than that. Yes, he enjoyed the food and the auction. He had fun meeting Pam and her fabulous NFocus associates, and her husband Joe. He was thrilled with the Godzilla DVD Pam brought him and the cookie Nancy gave him. All that.

But later when his head hit the pillow, he was pensive. I know the look; I've seen it before. It's a look that overrides any words. I could see it in his eyes. They were filled with what Charley calls his "happy." That place where you don't have to adjust your lens because the picture is perfect. That place where people see you as you. That place where you can just be yourself. I suspect the NFocus associates were just being themselves too. They may have no idea what they did for my son, but Brad and I sure do. And Charley does too.

I hope NFocus raised more funds for the March of Dimes than they ever dreamed possible. I hope that somehow they know what a difference they make in the lives of others. They sure made a difference for my Charley. And there's only one word for that. NPriceless.

Wednesday, November 5, 2014

"My" Book

Okay, I didn't see this one coming.

Oh, how I underestimate that extra chromosome of his.
And while I’m at it, what gives me the right to assume he doesn't know what’s going on?

The fact is, he’s very aware. Maybe even more than I. It’s been a much anticipated event in our house, waiting for the book.

Here’s what happened…

I left for work yesterday morning and didn't arrive home until around 8:15 pm. In the meantime, the mail truck came, the box was opened, and the book unearthed. I arrived home to find that Brad had placed the book on the table under the light (thought he’d surprise me). Except for one thing; my phone was ringing and ringing. Every few minutes. It was Charley, telling me a box had arrived, and could he have it please?

When I got home the first thing he said to me was, “I want dat book.”

I walked over, picked it up, held it up and said, “Wow!” 
It’s the first time I’d seen it, and what a thrill.

“I want dat book,” he said again.

“Tell you what, honey, I’ll order you a book for yourself,” I said.

“I want dat one,” he said.

And that’s how the evening went; about every five minutes he let me know that was his book.

“It’s my book,” I said.

But was it? Whose book was it? Mine? His? Seems only fitting he should have the first book in the family, after all, it is a book about him.

I held the book up. “What does this say, Son?”

“My name.”

“Yes, that’s your name. It says Charley.”

He tried to take it out of my hand.

“It’s my book,” I said. I wrote it. I should have a copy of it.

He tugged at the book. “Mine.”

Finally, my mother, who was listening to this exchange on the other end of the phone heard him and said, “Buy him a book. I’ll pay for it.” Well duh. Why didn't I think of that?

So I placed the order on Amazon and said, “It’ll be here in about five days days.”

Now. You must understand that in the Down syndrome mind five days never comes. We can reason that it takes time for the mail to get here, but Charley? Not so much.

“I dat one,” he pointed to the book. 

Oh what the heck. I signed a message inside the front cover and handed it to him. He hugged it to his chest. And with that, he had a book and I didn't.

I thought that was the end of that. That’s what I get for thinking.

A short while later, I was lying on the bed, playing with my iPad, when who should appear at the door.

“Wead me my Charley story,” he said.

Huh?

“Wead it Mom.”

He pulled his iphone out of this pocket, placed it on the bed, turned on the recorder, opened the book and pointed to a page.

“See? Wead dis.”

I looked into those eyes of his and melted. Right there, all over the page. What I saw was much more than excitement. It was more of a knowing contentment that he mattered. He's always mattered, don't get me wrong, but this was different. This was validation.

He sat and listened as I read one of the stories about him. 
He laughed, and nodded his head, in total agreement. Many people can't laugh at themselves, but it's one of Charley's greatest gifts.

Who would have known he'd be this engaged? Who could have guessed he would understand on such a level? We’d talked about it. But, I had no idea.

When I was finished reading, he thanked me, then took his iPhone to the couch, plugged it in, and fell asleep listening to his “Charley stories.”

He’s so smart. He knows he can’t actually read the words on the page (some individuals with Down syndrome can read on that level, but Charley can't at this point), He can, however, listen.

 And just like that? Life with Charley: A Memoir of Down Syndrome Adoption morphed into an audio book. How about that? Even the publisher doesn't know. Some authors wait years for that privilege. But in my case? There’s a Charley in the house.

Life is good. He’s got his book.

And I'll have mine. It’ll be here in about five days.


***

Note: Life With Charley: A Memoir of Down Syndrome Adoption is available at: Amazon.com and http://www.barnesandnoble.com/w/life-with-charley-sherry-palmer/1120669779?ean=9781937365707

Saturday, October 18, 2014

IT'S IN THE SYSTEM



Charley using his library card
This post is dedicated to my friend Laura.

My idea of borrowing from the library:

·        Look at the books as they come across the desk. Read the jacket covers. Decide if I really want to read it (did I mention I work at the library?)

·        Occasionally check out a music CD to listen to during lunch.

·        Everything must be left at the library, lest it get lost in the black hole of the house. I cannot be trusted to bring them back.

Charley’s idea of borrowing from the library:

·        Inspect every DVD in the book drop (did I mention that he volunteers at the library, picking up books in the book drop on Mondays and Saturdays?)

·        Hold up every DVD and tell me whether he has it at home or not

·        Stand in the work room and wait for Shirley (that’s my coworker) to give him a Chug-a-lug chocolate milk as his reward for picking up the books.

·        Pick out his DVDs (he’s only allowed two because he hasn’t quite grasped the concept of borrowing yet)

·        Hide the DVDs under the couch when he gets home so he has a prayer of finding them again.

 
My idea of returning DVDs to the library:

·        Retrieve the book from my desk and check it in.
 
Charley’s idea of returning DVDs to the library:

·        Spend the better part of two days trying to convince me he doesn’t have the DVDs, and that he never checked them out

·        Put the empty Lion King DVD case in my backpack.  Keep the movie, return the worthless case (like I’m not going to notice)

·        Put the Pocahontas DVD case (with DVD inside) on the dining room table as if I can’t count.

Me: “You borrowed 2 DVDs, not one.

Him: “No, one.”

Me: No, 2.

Him: “Uh uh.”

Me: “Stop stalling.”

Him:  Glare. Stare. Fidget.

Me:  “Well then, unless you turn in ALL of the DVDs you borrowed, you can’t borrow any more.

Him:  Nose dive under couch, followed by looking at me with his hands in the air. “Abwadabwa.”

Me:  “Don't Abracadabra Me. I know it’s there.”

Him:  “Gone.”

Me:  “Guess you don’t want to keep that library card.” (Did I mention that Charley has a thing about cards? He collects them.)

Him: Nose dive number 2. 

Here’s the thing. He’s got stacks and stacks and stacks of DVDs stacked up around his TV. All within reach. It’s his system.

 He knows exactly where the Incredible Hulk is. Batman, Superman, he knows where they are. Spiderman . Men in Black. X-Men. Just say the word. But Lion King has disappeared. And where? You guessed it. The black hole.

I can’t get too mad at him. And why? Because he is just like me.

               And for a split second, I thought about my friend Laura. She visited one day shortly after I was injured, and we were working on our knitting projects. Because I had mobility issues, she was helping me look for a knitting needle. Otherwise, I’d have looked but pretended to be doing something else so she wouldn’t notice, but this particular time I outed myself.
               I knew I had a size 4 needle somewhere. But where? So we looked in the basket beside my knitting chair. Not there. We looked in the knitting needle box. Are you kidding me? Do I ever put anything back?
             We looked under the chair, behind the chair, and in the crevices. And then, Laura, who is more organized than the law allows looked at me with that blank look she gives me.
“It’s lost in the system,” I said.
She busted out laughing.
And laughing.
“The system?”
“Yes, the system.”
She laughed some more.
“I know where we could try,” I said. “Go out and look on the floor of the car behind the driver’s seat.”
Another blank, wide-eyed stare. She might have even mumbled something under her breath, I can’t remember.
She could look at me all she wanted to, but I know my system, and sure enough, there it was, the size 4 needle I needed.
She held it up. “On the floor of the car?”
I don’t remember either, if I tried to come up with an explanation.  What is, is what is, whatever what is will be, will be whatever what is…regardless.
I could have used Laura’s help this morning when Lion King went MIA.
I thought about fussing. I thought about cramming a donut in my mouth (Didn’t have any in the house, too bad). Instead, I said, “I’m telling Laura on you.”
And what do you know? Lion King came out of hiding and went right back into the case, into the backpack, and back to the Library.
On the way to the library, I had a little discussion about borrowing with Charley.
“You and I have to get organized, Son. What we need is a system.”
“A system?”
“Yep.”
“I got me system.”
“I know. I’ve seen the couch.”
“You got you system?” he said.
“Have you seen my knitting needles?”
“Nope.”
“My point exactly.”
He just grinned and said, “You big twoublt. I tellin’ Lauwa.”

 

Monday, September 1, 2014

When It Ain't Over



When you have a young man with Down syndrome in the family, you can think something's over all you want to. But it's only over till the next time.

You might think that one of the worst things about vacation is having to come home. And I'd be inclined to agree with you, but I don't. And why? Because there's a Charley in the house.

Week before last Brad, Charley, and I set out on our big adventure at the Wilderness in the Smokies, where we would stay at the Wyndham Resort (compliments of some wonderful folks in Brad's church).

I have to admit that I had no idea we lived just a stone's throw from such an awesome place. Once we were there though, I looked at Brad and said, "We're never leaving." We hadn't had a vacation since...wait a minute...had we ever had a vacation? I'm talking about the kind where you sleep as late as you want, eat whatever you want, and do whatever you want? Yeah...that kind.

It was a week of total luxury.

But you know what they say about all good things, and it ended way too soon.

Before leaving, Charley went to the front desk and asked if he could keep the room key. So the nice man behind the desk decoded it and let Charley have it. And that was the end if that.

Oh yeah?

On our way home from church Sunday, Charley said, "Me and Jordan go twip."

"You and Jordan?"

"Yep."

"Where are you going?"

He pulled the room key out of his pocket.

"I got dis," he said.

Then he held up the map.

Uh oh.

"Where's Jordan going to stay?"

"My woom."

Uh oh.

"Does Jordan know about it?"

He looked at me, like, what-does-she-need-to-know-for?

Enough bantering. Time to drop the bomb.

"Son, you can't just go on a trip with a girl."

"But I got da key."

"You may have the key, but you don't have the girl. And...you don't have a wedding ring."

He got quiet, flipping the key back and forth in his hand.

"A wing?"

"Yes, a ring. You can't take a girl on a trip until you are married."

More silence.

"Have you asked Jordan's fiancé if you can take her on a trip?"

He glared at me.

"Maybe you'd better invite him to go too."

That ended the conversation. Until...last night.

Brad and I were in the living room when who should appear in the doorway carrying two large tote bags.


"What's in the bags?" I said.

"My movies."

"Where are you going?" Brad said.

"I go my twip."

Brad and I looked at each other.

Oh no.

Not this again...

...and again...

In a word...It ain't over when it's over. 

Wednesday, August 13, 2014

Channel Cat




This may look like an ordinary cat. I assure you, it isn't.

This is a channel-cat.

This is a tell-Charley-I-said-so cat.

Yep...Gizmo's the name...Charley's the game.

You see, there are those times when Charley pushes me to my limit. And, yes, when I push him to his limit.

This means we enter a no-talking zone. I'm not speaking to him, and he's not speaking to me. Brad is at work, so there is no buffer. No one to pawn each other off on.

That's where Gizmo comes in.

We each tell him what we want the other to hear. It goes like this...

Gizmo, tell Charley to take his shower.

Gizmo, tell Mom I'm busy here. I'm watchin' my TV.

Gizmo, tell Charley he can watch TV after his shower.

Gizmo, tell Mom I said no.

Gizmo, tell Charley to get in the shower or else I'm taking his clicker. And...tell him to use soap!

And Gizmo goes back and forth, between the two of us, channeling the message. That's not so unusual though, seeing show Gizmo's always a bit wired.

Even so, Poor Gizmo. He's a ping pong ball with whiskers. Boing. Boing. Until he collapses on the floor as if to say, "Enough, already."

You'd think he'd have learned the art of hiding behind the couch by now. But he just keeps coming back for more.

Fortunately, Charley and I haven't been in the no-speak zone for a while. But today was one of those days. And Gizmo offered himself up as the channel cat.

Some days this channeling thing works better than others.

This afternoon Charley came out of his room. I had the TV on. He said, "Mom, what channel you on?"

I said, "I'm on the Gizmo network."

Guess Charley thought I was getting ready to tell Gizmo to tell him to do something I wanted him to do, because he leaned over and said, "Gizmo, tell Mom not now."


Friday, August 8, 2014

Big Dreamers



This is the face of a super sweet young lady. Charley knows it, too. Every Sunday he says, "Tiffanie comin' church!"

I tell him that sometimes Tiffanie will be there and sometimes not. She has a job that doesn't always let us borrow her on Sunday mornings.

That doesn't stop him from running to the car, anticipating, hoping, talking about her on the way there, then bolting from the car to find her once we land in the parking lot.

I do my best to prepare him, just in case she's working.
"Don't get your hopes up, Son. She might not be here."

He says, "Yes eyare. I told her." Meaning, Tiffanie is to be at church. She is NOT to be at work. Her real job is to sit with me.

And why? Because when Tiffanie is there, he feels like a somebody.

When Tiffanie is there, he is not odd man out. Someone is there for him. Someone enjoys him. Someone puts him on equal footing.

We all need that, don't we? To be around those who make us feel like somebody. Those who never makes us feel less.

Some people such as Tiffanie (and Charley's other friend, Jordan), know how to reach across the boundaries and into the world of Down syndrome. In doing so, crossing that line pulls Charley into the parallel universe of "normal." A world that says, I'm just like you.

Most people Tiffanie's age wouldn't give Charley a second thought. Most people would go on their way, worrying about what's next for them. Most might say to themselves...Who cares if the Charley's of this world have something to look forward to? Not my problem. Dream on, big dreamer, I'm in college now. I've arrived. 

But here's the thing. Tiffanie doesn't see Charley as a problem. And she includes him in her list of important things to do. She views him as friend. Charley knows it. And to him, it's everything.

How is it that some people care more about the Charley's of this world than they do about their own agenda? I wish I could clone Tiffanie (and Jordan), and put them everywhere. How wonderful that would be for the special needs people in our communities. How less isolated. How less lonely. How less different.

Study this face. This is a beautiful rare young woman. This is the face of one who sees past developmental challenges and into the heart. That's what makes the heart beat, you know. It's not what you do, how much you have, how physically attractive you are, or how much money you make that makes Charley gush. It's how you make him feel.

She is off to college in a couple of weeks, full of hopes and dreams for the future. Agendas, studies, classes, making new friends. Life is fixing to change for Tiffanie.

Now look at the face sitting beside her. This is the face of a dreamer. He may not be able to process the future, but that doesn't mean he doesn't have hopes. And dreams. Big dreams.

Today is Sunday, and this morning he's dreaming they'll come face to face.

Of course, a trip to the Chinese buffet after church with this smiling face across the table wouldn't hurt his feelings either.

Ah...such is the stuff dreams are made of.