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

Twinese King

 Ming and King of the Twinese

There should be some reward for going to the Doctor's office.

First reward: No Thomas Center. 

In CharleyVerbiage, this stands for Sertoma Center. Not that he doesn't like the Sertoma Center, it's just that he likes the idea of not liking it. After all, what fun is it if you get to get out of something you like?

Reward number two: Van ride.

Usually Brad has the van. But when we take a road trip to the Dr. office which is located in Vonore, it takes us a little over an hour, so we take the better wheels. My car is fine, but it doesn't have the bells and whistles. For example, the doors don't slide open and shut by pushing a button. The trunk is a trunk, not a hatch, that opens and closes when you push a button. And let's face it, buttons rule.

Reward number three: CD King.

The first half hour of the trip is spent with Amy Grant. And me. Singing at the top of my lungs. No, I can't sing like her. No, I don't care. No, I don't feel sorry for anyone who puts their hands over their ears while I'm crooning. Unfortunately, there comes a time when even Amy Grant takes a back seat to High School Musical. 

And since I'm driving that means someone else is in charge of the CD player, and according to Sir Charles of Palmer, that makes him King. High School Musical it is. Then Lion King (we'll keep that one), Tarzan (yep, that too), Cher (Believe), and of course, Annie (The original Soundtrack), and our all time favorite, Grease. He sings the Danny part. I sing the Sandy part.

"Mom, you sing-a-ling," he says.

I think he means ding-a-ling.

Once we've been through each and every favorite song on these CDs, we start all over again, minus Amy Grant, which I've packed back in it's jewel case and tucked back into my purse to keep sticky fingers from giving it a new home in the black hole of his bedroom, never to be seen from again.

Reward number three: Breakfast

On the run, of course. Because what fun is a road trip without coffee and hash brown crumbs all over your new jeans?

Reward number four: Lunch

After the better part of an hour arguing that No, we are NOT eating at that Chinese Restaurant he just can't get enough of. The conversation goes something like this:

Him: I hungry, Mom.

Me: You Just ate.

Him: I starving here.

Me: Where would you like to go? (Big mistake) 

Him: Twinese

Me: We are NOT going to that Chinese restaurant and you know it. The food is loaded with carbs.

Him: Yes I are.

Me: Let's go get a salad.

Him: Twinese.

Me: No way.

Him: Yes way.

Long pause.

Me: Who died and left you King?

Him: Twinese King.  That's me.

And so it goes. All the way from Vonore, through Maryville, the outskirts of Knoxville, down Merchants Rd., onto Broadway, through Fountain City, and into Halls. Salads everywhere. Panera to the left, Friday afternoon, no Sertoma, no Work, and here I am, stuck in the van with this dude.

In his defense though, there's a reason he likes this restaurant. First, he can eat as many plates of chinese "spaghetti" as he wants. Second, the owner, "Ming," calls Charley by name. "Cha-lee." They have become friends. And I must say, it is fun watching Ming and Charley banter back and forth. Charley will be eating, and Ming comes along and says something to him in Chinese. Then Charley tries to repeat it. "Chakalaka laka aka aha!" While some may think Charley is poking fun at the Chinese culture, I assure you, every time he attempts to speak Chinese it's a term of endearment. 

And why not? People with Down syndrome are the epitomy of grace. Charley is a grace-filled man who believes in acceptance. No matter who, no matter what. 

Ming gets this. He accepts Charley too. It's a wonderful thing to watch when two people from different walks of life open their hearts with no expectations. 

Still, there are these things called Sesame Chicken, Sweet and Sour Chicken, General Tsaos chicken, Soy sauce, and those cute little sugary donuts. Yum, Yum. And of course, Ming, who places himself beside Charley's already overloaded plate to say,  "Mo skettie coming, Cha-lee."

So little time, so much Twinese!

But that is then. And this is today. I'm behind the wheel, which means when it comes to restaurant selection, Mom rules.

I tell him NO. For the last time, NO. We are NOT doing Chinese.

He reaches into my purse, takes out the CD case, pops Amy Grant into the CD player, and turns up the volume.

"Sing, Mom."

And just like that, it's Good bye Lion King, hello Sing-a-ling. 

And, Ming. 

If I dare say, that's using the old Ramen Noodle.

Ming lights candles on Charley's birthday cake for his 25th birthday on Sept. 29th

Getting ready to blow out the candles

Happy 50th Birthday, Chris Burke!

Dear Chris,

I would like to add to Mardra Sikora’s brilliant Open Letter of Gratitude and Well Wishes to Actor Chris Burke regarding your birthday. From my heart, I wish to add the following…

From Life With Charley: A Memoir of Down Syndrome Adoption:

“We had been married for six years, during which headlines included such historical events as the Space Shuttle Challenger Disaster, the release of Nelson Mandela after twenty-seven years in captivity, and the invasion of Kuwait by Iraqi troops, setting off the Persian Gulf War. 

Life Goes On was on primetime television, starring Chris Burke as Charles Thatcher, a teenager with Down syndrome. And somewhere in Texas was a Desert Storm baby in a foster home. He was soon to be ours. We would name him “Charles” in honor of “Corky,” Chris Burke’s character.”

Then

And so it was. Twenty-five years ago a two month old baby became the center of our world.

And in the midst of it all, there you were. Charley was too little to watch you, but we sure did. He had no idea that there was a teenager named Chris Burke, who was changing the perception of people with Down syndrome. 

Week after week we tuned in to see what “Corky” would do next. We laughed, and sometimes we cried. We watched as your television family paved the way for acceptance, showing us what family is all about.

I remember thinking what a brave person you were, memorizing all those lines, and what an achievement that was. We have no way of knowing how many times you had to redo the screen takes, but we assumed you had to redo your share, just like the other cast members, in their attempts to get it right. At times it seemed as if it was difficult for you to get the words out. And yet, you never gave up. Perseverance. 

For parents of children with Down syndrome, you did more than just step in front of a camera each week. You gave us hope. Made us see the possibilities. Encouraged us to dream. 

Chris, there is a reason we named Charley after you. We wanted to thank you for all you have done for people like our Charley, living with Down syndrome. For being the pioneer  for others who now enjoy a countless successes because of you. For letting the world know that an extra chromosome only adds to who you are, and that quality of life is a choice. For opening the door for those who might not have had a chance, and educating the world that Down syndrome is not something to pity, but to celebrate.

Because of you, Chris, the “Corky’s” of this world enjoy a freedom of self and all the joy that comes with being happy with who you are.

On August 26th, you will celebrate your 50th birthday. We want you to know, Chris, that you have a world full of friends who will be celebrating with you.

Celebrating the 50 years you have spent opening the world to our kids. And Chris, we want you to know that when we look at our Charley, we see a bit of you. 

Thank you Chris, and happy birthday!

With great regard and love,

Sherry Palmer

 Chris, meet Charley, your namesake!

Now

*  *  *

Sherry Palmer is the author of: Life With Charley: A Memoir of Down Syndrome Adoption

Follow Charley Palmer on Facebook at: Life With Charley - And Down Syndrome 

and also Charley’s blog at: Life With Charley 

The Mighty

So pleased that The Mighty chose to share my story...Here's the 

link to Life With Charley: A Memoir of Down Syndrome Adoption

and to The Mighty. Please visit and share their page! 

The Story Follows...

Angels in Disguise

In my book, Life With Charley: A Memoir of Down Syndrome, I have a chapter where I talk about angels. In the chapter, titled "Pwomp and Circumstance," we are shopping for a suit for Charley to wear to the prom. Brad and I had little money to spend, so we found ourselves at Goodwill looking around. Out of nowhere, a man approaches and starts holding up clothing items for Charley to try. At the end of this post, I will include a portion of the chapter...

I've been thinking about Angels lately, and how they touch us. Angels kind of come out of nowhere, to tap us on the shoulder and remind us that life is precious. 

I've always thought of people with Down syndrome to special angels. They touch us in ways other people cannot. 

These are some of the fantastic folks from Angels in Disguise. 

Just to show you what kind of people they are...

Charley and I contacted them and let them know we were in Louisville. My mother was in the hospital, and we were in need of some serious cheering up. Before we knew it, we were having breakfast together, and Charley had a slew of new friends. 

Later, when Charley put his head on the pillow in the hotel room, he said, "Mom, I like my more fwents."

I said, "How could you not?" 

He wasn't alone. I like them too. Charley knows who likes him and who doesn't. He knows who tolerates him and who wants to be his friend. 

We found a restaurant full of friends that day.

Today we are celebrating our new friends, by posting some photos and adding their Angels in Disguise link to our sidebar. Please give them a visit, won't you? This is a fabulous group of people who celebrate the gift of Down syndrome. 

Thanks Angels in Disguise, for making us feel so welcome...you made Charley very happy! And well, you know the drill...when Mama's happy, everybody's happy!

As promised, here is an excerpt from Life with Charley. 

Charley’s Angel 

You know how some things keep coming back to you long after they’ve happened? That’s what happened to me, and I’ve played it over and over in my mind. I thought I was hearing things when Jordan said she’d been the one to ask Charley to the prom. “But Jordan, you can go with anyone,” I’d said to her. “I don’t want to go with anyone,” she’d said. 

Oh, me of little faith. How could I have doubted him? What gives me the right to assume he can’t get a date just because he has DS? Why wouldn’t someone be thrilled to be with him? He’s the most fun person I know. Apparently, Jordan thought so too. 

It’s been nearly six months since that day. Since Jordan asked him to her junior prom. Since she became his reason to breathe. And now, here we are, just three weeks from the big day. But first we have to make it through spring break, and I can’t think of a better way than to take him shopping for a tuxedo. Problem is, we can’t afford one. There’s a Goodwill store down the road, and I’ve seen some suits there, so off we go. As his luck would have it, there are no tuxes. As my luck would have it, Charley doesn’t care if it’s a tux or not. 

Brad’s at work this morning, unable to join us for this outing, but that’s okay. He’s elected to take Charley shoe shopping later in the week. Meanwhile, Charley and I are standing at the coat rack in the back of the store. “I don’t know, Son, you’ll just have to try them all.” 

He tries on three or four, but nothing works, when out of nowhere there’s a man standing next to us. He’s a tall man, well over six feet I’m sure, and he’s dressed in khakis and a polo shirt. I have no idea where he came from, but there he is, picking items off the rack, though barely looking at them. I notice he’s watching Charley. 

“I go pwomp,” Charley says to the man, like he’s known him for years. “Oh?” “Yeah. Me, Jordan.”

I tell the man Charley’s looking for a coat to wear to the prom.

The man takes a blazer off the rack and hands it to me. “Have him try this one,” he says. 

Charley puts it on but the sleeves come down past his hands. The man hands us another. Then another. They are all too long. Until the last one. It turns out to be Charley’s size but, oops, there’s a skirt with it. 

“Oh for pity’s sake, it’s a girl’s suit,” I say to Charley. 

“I like it,” he says, and sure enough it’s a perfect fit. 

The man says, “Just don’t tell anyone and they’ll never know.”

The next thing I know the man is helping us look for a shirt and tie, and Charley is all set with a “tussado” for the prom. 

“I like him,” Charley says. “Tell the man thank you.” Charley says, “Can I keep him?” 

I look at Charley for a split second. “He’s not a puppy.” The two of us laugh, but when I turn my head back so see the man’s reaction, he’s gone. 

“Where’d he go?” I ask Charley. Charley shrugs his shoulders. “I no know. Wheh is he?”

“Son, tell me the truth. There was a man here, just a second ago. Right?”

***

This is where I’ll stop for now. If you want to know what happens you’ll need to read the book. You can find it here:

Life With Charley

***Thanks for visiting our Life With Charley blog. Please, come back often! 

A Little Pumped Up

I’ve been trying to give Charley more responsibility lately.

After all, he is knocking on the door of 25 years.

I suppose I’ve kept him on a short leash. But then, if you read “Life with Charley,” you know why. 

You know all those times he’s run off, worried me sick, taken off on the neighbor’s three wheeler, and who knows what else? Yeah, those times.

Those are the times when I feel justified being a looney mom. I can’t help it. Keeping him safe is my job. So yes, he’s been pretty much in line of sight his whole life, that is, unless someone else is trusted with the job, say, like spending the afternoon at a friend’s house.

The good news, is that he’s growing up. That means he’s trusted with more responsibility.

Like running out to the car to get something we've forgotten without us watching his every move. Oh, he may forget momentarily that he’s supposed to return, but that’s only when a basketball is present and the neighborhood kids are shooting hoops. What’s a guy supposed to do? come back to the house immediately, or strut his stuff…show off his great moves to the neighbors? Most of the time he comes back.

Other indications that he’s getting older. 

• Helping Dad clean the kitty litter box and cat feeders.
• Getting the mail.
• Cleaning out the car.
• Helping to set the table.
• Setting the garbage cans out for Waste Management and then bringing them back to the house at the end of the day. 

And…his all time favorite; helping Dad pump the gas.

DaddyBrad usually pays. Charley pumps.

Yesterday I picked him up at a friend’s house after a birthday party. I admit I was in a panic because I was low on gas and got lost on my way to her house.

Charley’s good with directions, so he was able to help navigate us back to the main highway, where, thank you God, there was a Shell station.

I pulled up to the pump, turned the car off, and started to open the door. 

Charley said, “I helpin’ you, Mom.”

I said, “Okay, but I’ll have to pay first.”

“Okay, Sherry Honey,” he said, flashing that grin at me.

That made me laugh. I guess he’s heard his Dad say that.

“You think you can do it, Man?” I asked.

“Me?”

Then I did something I’ve never done before. I handed him ten dollars.

“Here ya go, Bud. Give this to the lady behind the counter and tell her I’m on pump #3,” I said.

“Me?”

“Do you see any other Bud around here?”

At that he took the money and went into the store, waving the ten dollar bill in his hand. The lady behind the counter gave me a wave, and out he came, heading straight to the pump.

I watched as the gas gauge moved. But not much. Geez, I know times are tough, but you’d think $10.00 would go further than that. 

My thoughts were interrupted when he got in the car and handed me seven dollars.

“What’s that?” I said.

“You money.”

“You gave the ten dollars to the lady?”

“Yeah. I told her fwee.”

“As in, three dollars worth?”

“Yeah.”

But I meant pump #3…

Couldn’t help laughing, but not so he could see.

I considered whether we could get home on three dollars worth of gas. But then, there was something else to consider. This was his first independent visit into a gas station, paying the lady, pumping the gas.

No one to tell him how to do it.

No one to tell him he wasn’t doing it right.

No one treating him like he wasn’t 25.

“I got it awe?” he said, his face beaming with pride, his chest a little more pumped up.

“You sure did,” I said. “You did a great job.”

I looked at the $7.00 in my hand.

I looked at the gas gauge.

I sure didn’t get my $10 worth.

But what I got? Priceless.

***

Sherry Palmer is the author of "Life with Charley: A Memoir of Down syndrome Adoption." You can find it at: http://www.amazon.com/Life-Charley-Sherry-Palmer/dp/1937365700/ref=sr_1_1?ie=UTF8&qid=1436741962&sr=8-1&keywords=life+with+charley

Thanks for reading my blog! Please come back often...

Stranger Danger

Have you ever known someone so sweet that they have no fear?

That’s Charley.

Everybody’s friend

And, as far as he’s concerned, everybody is his friend, too.

Here’s how things work at my house…

Charley is the neighborhood greeter. He stands out on the front step and waves to everyone. "Hey fwent!" 

Sometimes they wave back. Sometimes they ignore him properly.

He watches everyone.

“Look Mom, dat guy over dere.” Meaning, that guy is mowing lawn.

“Dat guy got da mail.” And so should he.

“Dat guy work da house.” Meaning, that guy has power tools. They make lots of noise. That makes him cool. Maybe he’d like to come to our house and tell us all about it.

And so it was.

I’m busy doing laundry, and sit down to take a break. I’m bending over, rummaging in my knitting bag for my latest project, and better hurry with it, or Mom’s birthday will be here before I’m finished.

“See? Dat my Mom,” he says.

I look up. There’s a man with long curly hair standing in the living room.

Oh Lord.

The man introduces himself as “Ron,” and squats down to pet the cat.

We chat for a moment, but inside I’m freaking out.

A man in the living room.

A man I’ve never seen before.

The man tells me he is working on the house across the street, building a play room for the new neighbors.

He seems nice enough, but he’s in my living room and I’ve never seen him before.

“See?” Charley says to me after the man leaves.

“Charley, you know better than to invite some stranger into the house like that.”

Or does he?

I remember telling him over and over not to open the door to strangers if they knock.

But did I ever tell him not to invite someone in?

How many times has he been in the living room and I’ve brought a friend home. Someone he didn’t know? True, I didn’t flag them in from off the street, but still, he didn’t know them. And what did I do? I introduced them. "Say hi, Charley."

Charley has a dilemma. He sees what I do. Then I tell him not to do it.

He’s 24. Should he be able to invite a friend in?

He has no concept of my-stranger-is-ok, but-yours-is-not.

As Charley gets older, I admit I let my guard down more than I used to.

I let him go outside by himself more. He empties the garbage. Most of the time he comes back. When he doesn’t, we go fetch him.

Sometimes he takes a detour, such as to the house across the street to invite “Ron” to the house.

It’s scary to see a stranger in your house.

Now, you must understand, I’m not afraid when Charley’s around. At least, I try not to be.

He’s strong and even though he is smaller than that guy, I have no doubt he could beat him up and leave him begging for mercy if provoked. All those years of carrying the TV from his room to the living room and back again every 15 minutes because he couldn't decide where he wanted to watch it didn't leave my son without muscles. 

Not that I want him inviting the neighborhood into the house, but if he decides they are all to come calling, then so be it.

The thing that gives me pause is this…Charley has no fear. No filter. No what-if?

What if that guy isn't a good guy?

What if Mom doesn't want to entertain right now?

What if I get in trouble for bringing ol’ Ron into the house unannounced? 

It's not a good situation, this open house, come-on-in. This Ya'll-com-back-now-ya-hear? No, it's downright dangerous. I've spent countless times explaining how he could get hurt. How I could get hurt. It's not that he doesn't care, it's that it doesn't register. 

I'll say, "Charley, inviting someone to the house that you don't know is dangerous."

He looks at me and grins, like, Dat guy? Can't you see how nice dat guy is? And he says, "Come on..."

It makes no sense to him. Such is the communication gap. The schism of reasoning that sets Charley apart from other thinkers. He wants to be regarded as a man, and most of the time he is. But it is times like these when the innocence of that 21st chromosome gets in the way. 

That being said, stranger danger and all, I have to admit that even though he sometimes scares me to death, I try to remind myself to look for the good. There has to be something good about this, and there is. He sets an example with his neighborliness. His unconditional acceptance of his fellow man.

 I admire him. 

I often wonder what it must be like to be Charley. To live your life as if everyone has your best interest at heart.

What if we all lived our lives like that?

What if we all treated strangers as if they were our new best friend? 

What if we brought them fried chicken on the first night in their new house? Brad did that the night they moved in.

What if we invited people in?

Most of us keep the world out.

We keep ourselves closed.

What if we were a little more neighborly? What if we approached the other guy like Charley does...why can't we be fwents?

What if we walked across the lawn and said, “Hi” ?

If we did that, the stranger in our house wouldn't be so strange after all.

And just to clear this up, no, I don’t particularly want a strange guy in my living room.

Charley and I will have a little chat about that.

Right after I walk across the lawn and meet the new neighbors.

*  *  *

Sherry Palmer is the author of Life With Charley: A Memoir of Down Syndrome Adoption, available on Amazon.com

Disability and the Special Prom

The following article, "Disability and the Special Prom,"  was posted today by my friend, Stephanie Holland, of "The Road We've Shared." Here's the link:

http://roadwevesharedgzp.weebly.com/the-roadmap-blog/disability-and-the-special-prom

If you know of someone who has a loved one with Down syndrome, please, won't you take a moment to share?

Thanks Stephanie, I couldn't have said it better. Your brilliance and experience with your son reaches across the internet into so many hearts.

Note: Charley will be attending one of these Special Proms on February 21st.

As a mother of a young man with DS, I watch every day, how he wishes he could be a part of the world where dances are a rite of passage. But for people like Charley, the opportunities to socialize with people like him are sadly, limited. When he attends one of these proms, it's like his world opens up. Somehow the social schism of differentness narrows just enough to put him in an arena where he is able to be just like everyone else just by being himself. At the Special Prom he's not special needs. He's just Charley.

There's freedom in that. Freedom in being who you are.

For all who spend their time and money on providing my son with the time of his life, THANK YOU.

Charley, getting ready to dance his feet off!