Sunday, April 23, 2017

HOME




How many times have I said, “Put your dishes in the sink!” I confess I have used a high-pitched whine, as if turning up the volume will deliver the desired results.

And do they land in the sink? Well, no. Not always. Okay, not ever. Well, hardly ever.

Each time I remind my son, he says, “Ok Mom," in a dismissive tone, that can only mean, "I heard you the first time. And the second, and the third, and I've lost count."

“I’m not kidding, Charles Benjamin. What do I look like, the maid?”

He thinks this is funny. I know this because he’s Skyping me from his bedroom, and he’s falling over on his bed laughing.



Time to lay down the law.

So I look into the camera. “I'm so sorry.”

He gets this serious look on his face, like, “Huh?”

"Yeah, sorry about lunch, honey."

He waits for an explanation.

"Have you heard the news? The cook just quit." 

This gets his attention. See the face? The carefree grin is gone.


“New rule,” I say. “If you don't put your dishes in the sink, you don't eat. This means that the spoons collecting under your bed must find their way to the soapy water. Your plates must grow legs and run down the stairs, where they are to dive into the sink.”

Then he laughs again, and says, “Oh.”

So here he comes downstairs. “Mom, I show you tometing (something).”

I go to the kitchen, and he points out that he has poured the entire bottle of A1 Sauce on his plate, then covered it with frozen French Fries. He is preparing to stick it in the microwave (because who cares if the cook quit? He'll cook it himself, thank you very much).

And since I’m always getting after him for the amount of A1 he uses (wastes), he thinks if he puts the French Fries on top I won’t see how much sauce he has on the plate. Nice try.

Into the microwave goes the plate. His arms go around my neck. There are hugs. Kisses. Tickles. More hugs.

And up the stairs, he goes. To veg out with his movies and eat his fries. 

In the meantime, I’ve done the dishes, sprayed 401, wiped down the counters where I will condition the pillow I've just finished knitting. First, up: submerge in water for a short while in the sink. I like this new SOAK. It has a floral fragrance. Won’t it smell nice on the couch?


Next, I will place the knitted piece in a bath towel and roll it up to absorb the water, and will then place it on the drying blocks and pin it down, all while keeping close eye on this bad boy right here, who likes to jump in the middle of my knitting, do a little dance, and shred whatever’s there.



Don’t let him fool you with that innocent face. He knows he’s bad because he cries before he gets in trouble, which is every time he gets ahold of my yarn. He just walks all over the house, crying into the wind.

Charley is good to sound the alarm. “Mom, Gizmo got your yarn…”

And I come running to pull it out of his teeth.

But today, I’ll keep close eye on this yarn monger, to make sure he doesn’t see the knitted pillow drying on the dining room table.

At least, that’s the plan.

This pillow has been a challenge to make, but I think it’ll make a nice addition to the house. It has the word “HOME” knitted into the fabric. Just think, everyone who visits will know this isn’t just a house, it is a HOME. The pillow says so.

But first I must head to the kitchen to retrieve my brand new pillow, scented with this fragrant SOAK, and what do you think I see?

This.


And there it is. My Brown Sheep Lamb’s Pride Wool knitted pillowI bought the yarn at the Carriage House in Kingsport.  If you haven't visited, you'd love it. Here's the link... The Carriage House. The pattern I used is on Ravelry, by Mary Lee.) 

It's soaking, all right. In A-1 sauce. Ah. So he was listening. 

I’m not about to admit what I said. Sorry, use your imagination. Wonder what the sheep would say? After all, it was his backside that gave up the wool that now soaks in sauce meant for a steak.

I have half a mind to call my son downstairs and have a come to Jesus meeting. I said put the dishes in the sink, NOT in my knitting.

Instead, I grab the pillow out of the A-1 water, rinse it, put in more SOAK, soak it again, rinse it again, roll it in the towel, and pin it down on the drying board.




And there it is. The reason I get out of bed. Right there on the pillow, looking back at me. The word “HOME.”

The reason I breathe in and out.

And I am reminded that pillows, knitting, A1, are all replaceable.

HOME, is not. 

Neither is my son.

And that’s ok. I’m at home with that.

I cannot help but laugh out loud. 

He Skypes me again from his bedroom. He's grinning again, proud of himself.

“Hi Mom,” he says. “I put da dish in da sink.” 

I could fuss, but how confusing would that be? How was he to know that the brown pillow soaking in the soapy water in the sink was a work of art? Could have been an old dish towel for all he knew. 

There’s only one thing left to say. “I saw that. Thanks, honey.”

He looks into the camera, blowing me kisses. 


This 26-year-old funny little man I call my son reminds me every day what HOME is. What it is supposed to be. 

That’s it’s not a museum. It's a place that gets messy.

It's where your heart should be open wide, and your arms wider, waiting for that hug that only your loved ones can give. 

It’s a place where you can and should laugh, and do it often. 

A place where you don't have to take yourself so seriously.

Where the dish might land in the sink if you’re not careful, and where A-1 will land on your pillow. 

Where hugs and sticky kisses abound, and where you are listened to (occasionally), and valued. 

A place where space is shared, where things take up more space than they should, and where there is always room for you.

A place where your opinions matter. Were YOU matter.

Where you can be you.

Where you are in competition with no one because being you is all you need to be. And that's pretty good stuff. 

“You happy, Mom?” He says.

I assure him that I am. (Even if I’m not happy about the pillow.)

Not to worry, there is good news. A-1 makes an interesting soak, which means the pillow is still brown. 

It's also on the couch.


 I look into the Skype camera. There's that face again.

“I love you, Mom,” he says.

I love Ewe too, my son.






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










Sunday, July 24, 2016

We Need a Sign



If you are a supporter of The Down syndrome community and have not heard about Rob Snow, then you are in for a treat!

One of these days I hope Charley and I can meet Rob. His book will tickle your funny bone! Enjoy!


Wednesday, April 6, 2016

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."

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!

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









Thursday, February 11, 2016

The year of You



How do you know when you've made a difference? Some people have no idea how much of an impact they have made in someone else's life.

This will be a work in progress, because when there's a Charley in the house, anything can and does happen...meaning, I get into the middle of writing and get pulled away, like right now... be back in a sec...


Back now... had to run to the front door. I heard it open and out he went.

This is what it's doing outside, and Charley just headed to the mailbox. Does he have on his shoes? I don't know.

Has he got on a jacket? I don't know.

Will he track snow through the house? This much I know.

If you know anything about people with Down syndrome, then you know what I know, and yes, I'm generalizing here...they are relentless. When they get something in their heads, good luck getting it out.

Charley is waiting for something in the mail, which means he asks about it every 5 minutes.

Until it comes, that is how it will be. Even when I say, "Stop asking."

But back to the subject at hand.

The year of you.

All of you, who made a difference in the life of Charley.

Those of you who befriended him...
 
This year will be about you.
 
Beginning with Mom.
 
You can find her in the book. In fact, it's a love story, 25 years in the making. If you read my previous post, then you know. If not, I invite you to back peddle a little and catch up so you know what the rest of us know.
 
Mom and Charley Skype nearly every day. They are separated only by the miles, not their hearts. Charley is crazy about his Grammy.
 
"I love you, Granny!"

 
 
Yesterday, Brad, Charley and I made the journey to Louisville. Mom is in the nursing home. The family called. Mom's not doing so well.
 
This time Mom wouldn't be able to Skype with his Grammy, so he would just have to go see her in person...
 
More on that in my next post.
 
Thanks for reading,
 
Love from Sherry, Brad, and Charley
 
 

 
 
 
 
 
















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

Have You Read "The Case for Conserving Disability"? It's worth your time. (See my post for the link)



I watched a program on Hitler the other night. The countless lives that were ruined by a fanatical maniac with no regard for the humanism of others is so disturbing — the way one person's into,era vie for the "different" influenced so many to the point that those in his regime abandoned their ability to think for themselves — brainwashing so many — creating killing robots on a mission to eradicate the “different."

On the same evening, I read a brilliant post. The Case for Conserving Disability, by Mark Leach. In the post, he sites a piece written by Rosemarie Garland-Thomson.  

I couldn't help but think about how different my life would have been if it hadn't been blessed with something "different." How the association with "differentness" Down syndrome has hopefully made me a better person, and how it has made me question (frequently), what disabled really is. And finally, how I've often wondered who gets to decide what disability means. Does it mean physically? Mentally? Emotionally? Spiritually? 

The author of this post makes an excellent case for disability. Anyone who loves a person with a disability knows how it demands all of you (meaning,the care-giver). No one says it is easy. But this post raises some good points. Here are a few things that jumped out at me...

1.  "It is well-established that the non-disabled have a much harsher view of a life with disability than those actually living with the disability."

Isn't that the truth? I have yet to meet a cynical or sarcastic person with Down syndrome. That is not to say they don't get mad. To the contrary, Charley and I are FIGHTING this morning. Even so, I know from experience, that our disagreement will be short-lived. He is, by nature, a fighter, but even more so, he is a forgiver. His love is stronger than any fight or disagreement we can create. Here’s another newsflash: In this time of political bickering, you’d never find him slinging mud at anyone. I know few certain Presidential candidates who could learn a few things from my supposedly “disabled” son. 

2. In her article, Garland-Thomson makes this point; “I began to understand since my daughter’s birth: we are all disabled in one way or another, and will “evolve into disability. Our bodies need care; we need assistance to live; we are fragile, limited and pliable in the face of life itself. Disability is thus inherent in our being. What we call disability is perhaps the essential characteristic of being human.”

I’m glad she brought that up. Isn’t this the gift of the disabled? to show us how disabled we all are? That in some way, we are all broken? 

3.  This point is demonstrated by Garland-Thomson’s reference to a wonderful on-line piece written by Chris Gabbard about his profoundly disabled son August (who recently passed away). “Gabbard observes that many ‘well-meaning people would like to put an end to August’s suffering, but they do not stop to consider whether he actually is suffering.” Gabbard admits caring for his son likely limited his professional career, but it expanded his understanding and experience of the world. “Ultimately, August’s gift to Gabbard … is what any human relationship provides to any of us: the ‘opportunity to profoundly love another human being.'”

Again, I’m glad she states what many of us parents of Special Needs children (adult or child), are already thinking. 

What power these human beings have. The ability to show us what love really is. The power to call us out of ourselves. Out of our population of one, where we are prisoners of our own egos. It’s a mighty lonely place, when it’s just me and my ego. Not a whole lot going on there but me. And more me. Living with Charley has taught me that life is not about me. It’s meant to have purpose, outside of the me-oriented.

Truly, living with a person who is considered “disabled” is our ticket out of the depths of ourselves.  Some of us are thrown into it, some are called to it by choice. Either way, it’s an opportunity. To even entertain the notion that society would be better off without these tender souls is unthinkable.

Brad (my husband) and I have been painfully aware of the extra demands of having a child with Down syndrome. There are those who have judged us. The things we do, the things we don't do. The ways we don't always get it right. Not by everyone, you understand. We don't feel this big conspiracy. It's simply a case of expectations and whether or not we have been able to live up to those expectations. So has it held Brad back? Yes. Has he been criticized? YES. Are we sorry we adopted a child with a disability? ABSOLUTELY NOT. Would we have it any other way? NO.

Yes, there is a “Case for Conserving Disability.” If Mark Leach’s article didn’t convince you, and I’m certain that it does, perhaps you might want to read Essay: Arguing Eugenics, by Mardra Sikora. 

Grounded in research and personal experience, Mardra Sikora's "Arguing Eugenics" extends beyond the subject of genetic testing (for the purpose creating a society free from the burden of Down syndrome) and into the heart of a world in danger of eliminating much more than an extra chromosome. As a writer and mother of a young adult with Down syndrome myself, I applaud Sikora's ability to lay out the facts while making the reader think with their hearts through the logic of her son Marcus.

"Arguing Eugenics" takes a subject often written about in medical and technical terms, and fine tunes the lens to so those unfamiliar with Down syndrome can see clearly how whole communities would suffer the consequences of eliminating often the most compassionate among us. If I were to sum it up, I would wager to say that a world without Down syndrome is a world in danger of reducing itself to breathing in and out. While Sikora does not glamorize naïveté regarding special needs individuals, be it children with cancer or those who are born with spinal bifida, rather, she is a realist who sees the value in every human life, while charging the rest of us to do the same. What gives anyone the right to decide who has value and who does not? What gives anyone the right to decide that another human being is a burden? I agree with Sikora one-hundred percent, no one has the right to set that criteria. 

Our lives began the moment Charley came into our home. I shudder to think of a life without Charley in it.

Can you imagine a life without this?

Or this?

Or this?

It's been a good life. A worthwhile journey. As my husband says, "I made the decision to love a special needs child." 

And so did I.

If that makes us less, then so be it. Truth is, disability is a gift. As the article says, we are all destined to disability. It's the circle of life. One day we will all need care. But we all have ability to change someone's life, just by being in it. 

Charley has Down syndrome. He is not broken. And neither are we. In more ways than I could possibly say, we have been healed by that 21st Chromosome known as Down syndrome.

Perhaps we should be less concerned with what is "different," and more concerned with our calling.

As for me, I have two working knees. They don't always work as if they were still 25, but I hope I use them every day to thank God for the “disability" I’ve been blessed with. 

And I hope that you do too.

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Please visit Charley on Facebook at: Life With Charley - And Down Syndrome

Thanks for stopping by!