Wednesday, March 2, 2016

Announcing: The Parent's Guide to Down Syndrome - Blog Hop!

Looking for the perfect gift for a family member or friend? Looking for a resource for yourself, or someone you love? Know someone expecting a baby with Down Syndrome? Look no further. 

Have your heard? It's a blog hop!

Written by my friend, Mardra Sikora, and Jen Jacob, this is the book you want to suggest if you know of a parent of a child with Down Syndrome.

I'm reading this now, and believe me, you won't be disappointed.

I'll be reviewing this book in the near future,  but until then, you can hop on over to the Blog hop and take advantage of some great giveaways.

Here's the link: Parent's Guide to Down Syndrome Blog Hop

 Giveaways: This prize includes: An “I love someone Down syndrome” tote, an advocate coffee mug, a great variety of books including, of course, The Parent’s Guide to Down Syndrome, plus fun t-shirt, stickers, and more! A value of over $150!

Lots of great give-aways!

Fabulous information!

What an opportunity!

And, while you are at it, won't you please share this information with your friends? Someone, somewhere can benefit from the information in this book. And you, can be the person who shares it.

Again, here's the link: Parent's Guide to Down Syndrome Blob Hop

So how do you or your friends purchase a copy of this treasure? It's all there on the blog hop, but just in case, you can find it here: 

Mardra Sikora, Author's page

and here: 

Amazon Link to Parent's Guide to Down Syndrome

and here: 

Barnes and Noble link to Parent's Guide to Down Syndrome


From all of us at Life with Charley, congratulations to Mardra Sikora and Jen Jacob, for producing this fantastic resource!


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