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.

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.

"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