Showing posts with label Down Syndrome Awareness. Show all posts
Showing posts with label Down Syndrome Awareness. Show all posts

Thursday, August 11, 2016



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

How My Son with Down Syndrome Fixed a Hotel Problem I couldn't
In our house, we are big fans of Where Hope Grows

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

and here: 

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

Now. Let's talk about The Mighty on Facebook. This is where you can get your daily cup of inspiration. Stories written by people just like me. People who face everyday challenges.
What do I love about the The Mighty? Well, just about everything. I love that it's a bright spot in an often too dark world. If you are looking for a pick-me-up, here you go. While you are at it, why not share it with your friends, and pick them up too?

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










Wednesday, March 2, 2016

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









Tuesday, December 22, 2015

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

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


Monday, November 16, 2015

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...











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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!


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

#AngelsInDisguise   #NationalAdoptionMonth  #InternationalDownsyndromecoalition  #Downsyndromeparents #worlddownsyndromeday

Friday, November 13, 2015

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

Friday, October 9, 2015

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) 

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).

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)