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."

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

A Christmas Stocking for Charley

Charley, the day we brought him home

Hand knitted by Mom

December 14, 1990, Brad and I and headed to Texas. We came back as a family. Two short weeks later we headed to Louisville, KY to introduce the family to our new life.

Who would have thought that a tiny baby boy would change the lives of so many?  

There’s a mystery to Down syndrome. There’s no textbook that can tell you how to do it. It’s a learning curve, and those of us who sign up (or are blessed through the miracle of childbirth) quickly find out it’s a gift that holds surprises for even the most seasoned parent -- one we continue to unwrap every day.

Now, twenty-five years later, I’d like to share that gift with you. 

The following is an excerpt from Life with Charley: A Memoir of Down Syndrome Adoption "A Christmas Stocking for Charley,” is the first chapter of our lives as an adoptive family. My publisher, Zharmae Publishing Press, has made it possible to share the first two chapters of my book with you.

Just scroll down and find “A Christmas Stocking for Charley.” 

Here’s the link: First Readz First

Its become tradition that I post this story every year, in honor of Charley, and Mom. If you’ve read it, then thank you. If you haven’t, then thanks for taking the time. Please pass it on and spread the CharleyLove!

Merry Christmas, and blessings, from Life with Charley!

Charley and his Grammy

*  *  *

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

Please visit Charley on his Facebook page at: Life with Charley - and Down Syndrome

Celebrating National Adoption Month

Here at Life With Charley we have lots to celebrate during National Adoption Month.
#lifewithcharleyanddownsyndrome

Here are just a few reasons...

* * *

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

You are invited to read the first two chapters free, at: Zharmae Publishing Press

Thanks for stopping by our little corner of the world...Please, share with your friends. Thanks!

*  *  *

@1pageturner: @isdonn #NationalAdoptionMonth #AngelsInDisguise @AshleyNMe1 #downsyndromeadoption

#AngelsInDisguise   #NationalAdoptionMonth  #InternationalDownsyndromecoalition  #Downsyndromeparents #worlddownsyndromeday

Please visit us on Facebook!

Please, if you haven't already, visit Charley on Facebook:
Here's the link: Life With Charley - And Down Syndome

Thanks! See you in the ChromoZone!

#WorldDownSyndromeDay #Adoption #WDSD #SpecialNeedsAdoption #SpecialNeedsParenting

He Hopes You Dance

It may have looked like a Captain D’s to you, but what did it look like to Charley?

I never saw this coming…

We, Charley and me, had Mom and Charley date night. That means Brad was busy, so Charley and I were on our own. We bantered about where to eat and settled on fish. Ten minutes later we found ourselves in Captain D’s. 

“Hello, purty,” he said to the girl behind the counter.

She was nice to him, but didn’t encourage the attention. Said she’d bring our food to the table, so we made our way to the dining area and got our drinks, sauces, lemon, flatware. The essentials.

I don’t know about your Captain D’s, but the one here in Knoxville down the street from us plays great radio. Always something to bebop to.

So we sat there and waited. And bebopped. And waited. And there she came, carrying our meals.

We ate a bit, and bebopped. Yes, while eating.

The next thing I know is, I was squirting lemon on my broccoli when Charley looks up and says, “Watch my food, Mom.”

I glanced up. “Where are you going?” I’m thinking the restroom. That’s what I get for thinking.

He checked with me one last time. “Watch my food. Ok?”

“Okay.”

Up he stood, and headed over to “Purty” girl.  “Dance with me?” he asked.

“I’m not a good dancer,” she said.

He held his hand out. “Come on, Purty.”

She shook her head. “Nope. Sorry.”

He turned to another worker. “You dance with me?”

“I can’t,” she said. “I’m working.”

He slapped his hands to the sides of his legs and let out a big sigh, like, what does a guy have to do to get a dance around here?

Believe me, as his Mom, I wanted to intervene. I have a tendency to want to squash that spontaneous part of him that might be considered inappropriate. Instead, I allowed him to be himself.

The worker looked at me. “It may look like a Captain D’s to you, but it looks like a dance floor to him,” I said.

About that time the manager came out from behind the counter. 

“I have this dance?” he said.

I was just sure she was going to embarrass him. Instead, she said, with no hesitation, “Sure!”

And with that, they twirled around the restaurant.

Like I said, it may look like a Captain D’s to you, but what I saw was Captain DS. That stands for Captain Down Syndrome.

Now before you think I’m making fun of him, or being flippant about his Down syndrome. I assure you, it’s quite the contrary.

Thanks to the manager, I had the privilege of seeing a young man who looked a little taller on his way out of the restaurant than when he entered. A man who quick-stepped his way to the car. A young man who slid into the car seat,  turned to me, and said, “See?” Like, see Mom? If you just believe in yourself, if you just hang in there, good things can and do happen. 

He’s right. If you know anything about people with Down syndrome, then you know they don’t give up. They find a way. They live with a zest like every floor is a dance floor. And as far as I’m concerned, it’s a great example for all of us.

What a fantastic reminder of the wonder of that extra chromosome, to witness a dance in Captain D’s during Down syndrome Awareness Month.

When I think of the things I’ve learned from this supposedly challenged son of mine, I’m humbled. 

Dance then, you who are glued to your seats. You who are locked away in the confines of your busy-ness. When you least expect it, someone, somewhere, might ask you to dance. My hope for you is that you take the hand of the one reaching out, and that you will hear the music. With your whole heart. 

And, yes, with your feet.

Parents of Kids With Down Syndrome Share What They Wish You Knew

Nice Surprise this Morning to find out Charley is included in this article from the Huffington Post:
Parents-of-kids-with-down-syndrome-what-they-wish-you-knew

If the pictures of these individuals don't melt your heart, then don't blame me!

It's a great day to spread some Down Syndrome Awareness. Brad and I are so proud of our Charley...

Once again, here's the link:

Parents-of-kids-with-down-syndrome-what-they-wish-you-knew

Something Awesome...Angels in Disguise

Day 20 of Down Syndrome Awareness Month (Something Awesome). #IDSC #Downsyndromeawareness 

Perhaps you've heard about Angels in Disguise...They are the ones who create Down syndrome Awareness by doing so many good things. One of those good things is this great poster they created of Charley.

You can learn more about this fantastic organization and see more of their creations by clicking on this link: Angels In Disguise. You won't believe the precious photos. Believe me, their enthusiasm is contagious...

I can't think of a better way to celebrate (something awesome) than to celebrate Angels in Disguise today.

Thanks Angels in Disguise!

Life With Charley Giveaway

Shout out to Pam Brooks and NFocus ... I love you my friends!

So much to be grateful for today. When I look into Charley's eyes, I know I am more blessed than I deserve. 

In celebration of Down Syndrome Awareness Month, and to honor Pam Brooks and our friends at NFocus Louisville, we are pleased to announce this giveaway.

If you haven't become acquainted yet with NFocus Louisville yet, why not check out this wonderful organization of givers who work tirelessly to make life better for others? Brad, Charley​, and I are proud to call them our friends. You will be too. 

Entry-Form

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

Life With Charley - Celebrates one year Birthday!

Please help us celebrate the one year birthday of Life With Charley: A Memoir of Down Syndrome Adoption! 

Read all about it on today's guest post, right here!  Blog Z

IDSC Down Syndrome Awareness Photo Challenge - Day 9 (Best Friend)

Day 9 of the @theidsc ‪#‎idsc2015‬ photo challenge (best friend) 

‪#‎downsyndromeawareness‬ ‪#‎photchallenge‬ #idsc2015 ‪#‎dsawareness‬‪#‎downsyndromelove‬ ‪#‎tagsforlike‬

Charley and Chris have been best friends since they attended Gibbs High School.

#IDSC Photo Challenge Day 8

Day 8 of the @theidsc ‪#‎idsc2015‬ photo challenge (a favorite activity)

Charley is playing basketball at "Hoops for Hope" with the University of Tennessee Basketball Team and the Lady Vols. This is an activity he thoroughly enjoys once a year, sponsored by Down Syndrome Awareness Group of East Tennessee (DSAG).

‪#‎downsyndromeawareness‬ ‪#‎photchallenge‬ #idsc2015 ‪#‎dsawareness‬‪#‎downsyndromelove‬ ‪#‎tagsforlikes‬

IDSC Challenge Day 7

Life With Charley IDSC Photo Challenge Day 7 (yellow and blue selfie) ‪#‎IDSC2015‬ ‪#‎DSAwareness‬ @theidsc (this picture was featured in the Times Square Buddy Walk billboard in NYC in 2012)

Happy Birthday Charley, 25 Years Old!

Down Syndrome Awareness Month Photo Challenge #6

Down Syndrome Awareness Month Photo Challenge #5

Down Syndrome Awareness Month Photo Challenge #4

Down Syndrome Awareness Month Photo Challenge #3

IDSC Down Syndrome Awareness Month Photo Challenge # 2