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.

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! 

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

Saturday, October 24, 2015

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?”


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.

Wednesday, October 21, 2015

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:

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:


Tuesday, October 20, 2015

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!

Monday, October 19, 2015

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.