Wednesday, January 14, 2015

Countdown to Gatlinburg (a Special Olympics Post)




I wrote this last year after Charley left for Special Olympics. He's heading to Gatlinburg again this year, thanks to the support and outreach of Gina Legg and Gibbs High School. These folks who give of themselves to make sure Charley has the Special Olympics experience have no idea how much it means to him. I hope over the next couple of weeks to change that. 

So I begin this series of Special Olympics posts by looking back. It is with this in mind, that we look forward. 

Here goes... 


A Little Extra Oomph...

It’s Monday night, and I’m struggling with writing. All writers will tell you they sometimes stare at the blank page for what seems like forever, and that’s what I’m doing. Or, at least that’s what I was doing, until I received a text about ten minutes ago. 

     Charley’s an easy subject for the most part. With his shenanigans, his laugh, and what we call his bullheaded chromosome, he’s anything but blank. But when he’s gone my oomph goes with him.

     You see, Sunday he boarded a bus and headed to the winter games of the Special Olympics in Gatlinburg. But back to the text – oh how I needed it, because there, on my cell phone was a picture of him, standing on the ski slopes with his teacher, Miss Gerry.
      
     He’s temporarily ditched the grey muscle-man shirt he lives in and is sporting a red hooded sweatshirt like the rest of the team.
      
     He’s wearing brand new jeans that bend in all the right places when he unleashes his dance moves that make him look cool on the dance floor. He’s put on aftershave to give him some oomph, even though he didn’t shave before he left. But most of all, he’s wearing a grin and a twinkle in his eye.

     He’s staying in a hotel room and partying the night away. He’s probably meeting a girl but will most likely forget to get her phone number and will arrive home expecting that we will magically know how to call the girl he now refers to as his “Purty.”
      
     It’s all because of Special Olympics, created by Eunice Kennedy Shriver in her back yard in the late 1950’s and early 1960’s so that her sister Rosemary would have a place to play. I wonder if she knew that somewhere in Gatlinburg nearly 63 years later, a man with intellectual challenges would be having the time of his life because someone saw past disabilities into the core of abilities.

     Someone envisioned a better way of life for people like my Charley. Someone looked around, counted her blessings, and showered others with opportunities. Because of Eunice Kennedy Shriver, he is running, lacing up a pair of ice skates, and hanging onto the handlebars of the walker-like support device that steadies him so he won’t land on his backside. But so what if he does? He’ll think of himself as a winner because he had the courage to put one foot in front of the other, and try.
     
     Fascinating, how a traditional team practices until they are ready for the big game. Only a select few get to run out onto the field to the roar of a thundering crowd. Over and over, they practice their moves; fine tuning their technique that will make them legends in their arenas.

     Special Olympics practices too. They practice patience, support, respect, encouragement. Somewhere in Gatlinburg, there are teachers and coaches who have taken time out of their personal lives to make the Special Olympics a reality for someone else. While their own families are at home, these individuals provide hands-on assistance to the participants, so that life can have a little more meaning. No one makes them do this; they do it out of love for their students, so they can be included. So they can have their moment. Their thundering crowd. Their arena. A little extra oomph.

     If you know of a teacher or coach who has given so much of themselves for these special athletes, take a moment won’t you, to thank them on behalf of all Special Olympians everywhere.

Tell them Charley sent you.

                                                                          *  *  *
Sherry Palmer is the author of, "Life With Charley: A Memoir of Down Syndrome Adoption" available at: 

Sunday, January 4, 2015

Preacher's Son Apprehended. A-rest to Follow



N


                                                       Busted!

Knoxville, TN. 

In the wee hours of Saturday, Precinct 8612 in Jefferson County received a frantic phone call reporting a break-in at the home of the Reverend Brad Palmer. 

Roving reporter Matilda Farnsworth was on the scene of the crime, where the Preacher's wife stated that just after 3:00 a.m. she heard the sound of her son's bedroom door opening, followed by a flash of light. Moments later she found the refrigerator door ajar, and that's when she knew there'd been a break-in.

In an exclusive interview, Mrs. Palmer said she noticed her 24-year old son moving in a suspicious manner through the hallway, then disappearing into his room. She asked if anything was wrong to which he replied, "I got dis..."

When questioned as to whether anything was missing, she stated "Only the milk."

According to Farnsworth, the Reverend's son has been known to raid the refrigerator at all hours of the night. "I'm not one to cry over spilt milk, but I just can't help it," she told Farnsworth. "When Charley says he's got dis, he means he's got milk," stated the Mrs., adding, "Not only has he made off with our milk, he killed our breakfast. The kid is a cereal murderer."

Numerous warnings were issued, including yelling, "Stop Thief!" However, attempts to keep her son out of the fridge in the middle of the night were unsuccessful.

Further details are unavailable at this time, but the Preacher's wife did disclose that future plans for imposing a kitchen curfew along with a refrigerator lockdown are underway, and that her husband slept through the entire occurrence. 

No charges were filed but the 8612 Precinct Insomnia Police have offered her an all expense paid trip to Sleepy Town. The Preacher's wife stated that she looks forward to an a-rest just as soon as she returns from the Loony Bin.

                                                              * * *


Sherry McCaulley Palmer is the author of Life With Charley: A Memoir of Down Syndrome Adoption, available at: 


The following is a review from Amazon:

Three Cheers for Charley! October 15, 2014
By Sandi Hutcheson (Author, Looks Great Naked)

"There are times when we just have to hold our breath and jump in," Sherry Palmer writes of the decision she and her husband, Brad, made in 1990 to adopt a baby with Down Syndrome. Life With Charley: A Memoir of Down Syndrome recounts their joyful journey, and it is a beautiful story. Palmer is a gifted storyteller whose honesty and candor and all-out love for her son will earn her readers' deepest respect. You'll laugh, you'll cringe, you'll wonder how she does it, and you'll hope for the pleasure of someday meeting Charley and his parents in person."

                                                                           *  *  *

To visit Sandi's Amazon page, please follow this link: http://www.amazon.com/Looks-Great-Naked-Sandi-Hutcheson-ebook/dp/B00AW4DDUS

Tuesday, December 30, 2014

Pappy Knee Year





Staying home from work today. I hate that. I'm a strange duck. I like working. But since I'm grounded, it seems like a good day to write a blog. My knee (the good one) is giving me some problems. Went to the emergency room yesterday, with Charley in tow. On the way to the hospital we talk about how it's a new year, and how it's going to be better than last year.

We're all going to behave this year. We're going to eat right, we're going to get skinny, and...and...

We get to the hospital and Charley goes inside to bring me a wheelchair. While Brad parks the car, Charley wheels me to the registration desk where a pretty, sweet young lady sits. 

Registration lady: Have you been here before?

Me:  Yes. (Of course I have, I've practically lived here since my accident).

Charley: Um... Ma'am, dis my Mom.

She nods and smiles at him.

Registration lady: What seems to be the problem?

Me: My right knee hurts so bad. I can barely walk on it. I felt something pop the other day and it's been hurting ever since.

Charley: Ma'am, my Mom hurt. You helpin' her.

Registration lady: When did it start?

Me: Last Tuesday. I went to the quick care center in Kentucky while I was there for Christmas.

Charley: You awe Purty. He raises his eyebrows up and down like Groucho Marks. 

Registration lady: Thank you. (Another smile)

She places an identification band on my wrist, and directs us to the waiting area.

Charley waves goodbye and says, "Call me!"

Physician Assistant appears: What seems to be the problem?

Me: My right knee hurts so bad. I can barely walk on it. I felt something pop the other day and it's been hurting ever since.

Charley: Um Sir, dis my Mom.

Physician Assistant: When did it start?

Me: Last Tuesday. I went to the quick care center in Kentucky while I was there for Christmas.

Charley: Sir, my Mom hurt. You helpin' her.

Physician Assistant: I need to get some information from you. 

What existing health problems so you have?

What are your current medications and doses?

Are you allergic to any drugs?

Do you smoke?

No.

Drink Alcohol? 

No.

Partake of street drugs?

No.

Have a history of mental illness?

Not yet.

Charley: Um, Sir, My Mom knee hurt. 

Physician Assistant: Let's get you to the examination room so I can take a look.

About this time Brad shows up. He and Charley wait for me to come back.

Physician Assistant looks at my knee. Asks more questions. Leaves to write a prescription. Anti-inflammatory - that's about the best he can do for now. Tells me to make an appointment with the Doctor and wraps my knee with an ace bandage. Writes on the triage sheet that it was easy to determine the nature of the injury. Um...not from where I'm sitting. 

Nurse number 1 enters. 

What happened, Mrs. Palmer?

My right knee is hurting. I can barely walk on it. I felt something pop the other day and it's been hurting ever since.

She takes my blood pressure. Pulse. Listens to my breathing. 

What existing health problems so you have?

What are your current medications and doses?

Are you allergic to any drugs?

Do you smoke?

No.

Drink Alcohol? 

No.

Partake of street drugs?

No.

Have a history of mental illness?

Well, Not yet.

Hands me some prescriptions and follow-up orders. Tells me I can go.

Nurse number two appears with a wheelchair to escort me to back to the area where Charley 
Brad are waiting.

But first, takes my blood pressure. Listens to my heart. Takes my pulse.

Moments later, we're in the waiting area. There stands Charley with a cup of coffee he found in the lobby. "Here Mom, dis help in' you. Dis you fell butter."

He says to the nurse, "Call me!" Like, sure, that's gonna happen. 

Brad goes to get the car and arrives moments later. Charley turns to wave goodbye for a second time to the registration lady.

She gives him a little wave. Happy New Year! 

He waves back. Pappy knee year!

Charley: "Dwink you coffee, Mom."

I look into the cup. No Splenda. No cream. Just plain old black coffee. Not the way I like it. Not by a long shot. Still, I tip the cup and take a sip. I look into those concerned blue eyes of his, and wouldn't you know it? I've been to the hospital, been seen by a physician's assistant and two well-meaning nurses, and that cup of Joe is just what the Doctor ordered.

                                                        ***


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

















Thursday, December 18, 2014

God Things




For some reason, this post will not maintain a consistent font size throughout. That's okay though, as long as you have x-ray vision toward the end of the post. Though tiny, I mean it just as much as the rest of the post - maybe even more. God things come in good packages. Don't adjust your screen - that wasn't a typo. I meant to say God things. Chromosomes are God things.

Sometimes I look into the eyes of my precocious, funny, sweet-natured, son and wonder how the world got so lucky.  How did I get so lucky? God must have loved us all so much to have handed out those God things known as extra chromosomes. True, they aren't for everyone. Only a select few are to know the wonder. The forever innocence. The dance of Down syndrome. 

"But Sherry, you don't know the heartache of waiting 9 months for the perfect child only to have your hopes and dreams crushed by a An extra chromosome called Down Syndrome," you might say.

That's true. Those of you who know me already know my story, how Charley came to live with us. 
Just because I didn't wait for 9 months for the perfect baby doesn't mean I didn't want one. The thing is, in my opinion, I got one. 

When I read about that nut case in Denmark who thought it would benefit the world if those who have been blessed with an extra chromosome were eliminated from the human race, I wept. Then I went directly to Amazon and purchased Mardra Sikora's essay, "Arguing Eugenics." 

Want to know more about this heated issue? Mardra explains it in this well-written essay that is 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"(You can find it on Amazon), 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. Not Denmark, not anyone.

I found Sikora's essay to be an invaluable piece of research delivered with wisdom. Mostly, however, I found it to be a fair synopsis of the lives faced everyday by special needs families. There is no perfect person. Aiming for a perfect world filled with only perfect people (which means a world without that extra chromosome) is no world I want to live in. I cannot imagine a world without the unconditional love of individuals with Down syndrome. Apparently, neither can Sikora.

There is a society, however that does not agree. If Denmark is knocking on that door, I say don't open it. Be very afraid. When one knocks others do too. Before we know it, Down syndrome will cease to exist, and so will life as we know it for our loved ones who are game changers.

The choice is ours. Want a perfect world? Step right up. Get your one-way ticket to Denmark. Personally, I'd rather count my God things. My chromosomes. Want a world of perfect unconditional love and acceptance? Then send in the Down. Rock on, Marcus. Be that agent of change that Sikora writes about. Be that God thing. And listen up folks, don't even think of sweeping this one under the rug. Sikora is in the house.


We adopted Charley twenty-four years ago at Christmas time. Believe me, there is nothing you could wrap and stick under the tree that could come close to the gift God game me that day. It was the perfect God-thing gift. Did we know what to expect? What to do? How do do it? No. 


But here's one thing I do know. When I count my blessings, I count God-things. That includes chromosomes.


Merry Christmas to me.


                                             



Sherry Palmer is the author of "Life With Charley: A Memoir of Down Syndrome Adoption" (available at Amazon)





Friday, December 12, 2014

In the Advent if a Hootenanny




Rerunning this post from Christmas of 2012 in response to the Facebook question of what was my favorite John Knox Camp moment...it's something that couldn't be wrapped in a box, amd one of my favorite CharleyMoments ever...enjoy!


     Sometimes it must be hard to be Charley. Wanting to fit in. Sitting on the fence of different and same. If he stays on the side of different, the way is cleared for him to be a twenty-two year old boy in a man’s body, refusing to take a shower. If he stays on the side of sameness, wanting to be like everyone else, then what we have is a man in a man’s body, expected to take the shower like a man.

         What we forget is that his Down syndrome is the gateway to rising to the next level. The person who sat in the back seat asking, “Where goin’ Daddy?” is the same person who went with us to the Camp and Conference center for an Advent dinner Friday evening. He didn't want to go. Not for one moment did he want to put on a suit coat, and hang out with us old fogies. Typical.

            From the moment we arrived, he tried his best to mingle. Those of us who live with Down syndrome know only too well how the tangled tongue gets in the way of casual conversation, so he stood with chatting people, trying to act like them, until he couldn't stand it. “I got me wawet,” he blurted. But try as they might, they had no idea what he was saying, and quizzed him until he finally pulled out his wallet only to show them a picture of Harry, from Harry and the Henderson’s.

            So much for mixing. He plopped onto the couch and slumped into the cushions. I walked over to see if he was okay. “Dis bo-wing,” he said.  And why wouldn’t he be bored? The people at the party ddidn'tspeak CharleyEase, which made him odd man out. Meanwhile, I felt a lump in my throat and visited with other partygoers, while watching him out of the corner of my eye. Poor guy. Poor him. Poor man who wants to fit in.

            “He’s doing well,” someone said. “You aren’t kidding,” I said, because right about then in walked a blonde girl (we’ll call her Girl #1), and she was what Charley would call, “Hot.” And just like that, he had a date. Well, he had a dance. The music duo played their guitar and fiddle. Hootenanny, anyone?

            He thanked Girl #1 for the dance, and in my watchful silence I thanked her too, for saving an evening that had the potential to crush my son under the weight of the knowledge that he was and always will be Downs and that there’s not a thing he can do bout that.

Still, Girl #1 put a smile on his lips, and just as we thought that was that, in walked Girl #2, a brunette, who accepted his invitation to dance.

The next time I looked, he was dining at Girl #2’s table, following her to the buffet, helping himself to an iced tea he had no intention of drinking, and glaring at me like I’d better stop watching him or else. I tried not to look. I did. But what kind of mother would I be if I didn't give him a dirty look when he used his sleeve as a napkin?

            Meanwhile, Girl #2 spent the rest of the evening with him, and Charley was no longer odd man, he was simply a man.
Because different or same, when you have DS it doesn't matter which side of the fence you’re on, as long as the girl’s on your side.

Sherry McCaulley Palmer is the author of Life With Charley: A Memoir of Down Syndrome Adoption available on Amazon and Barnes and Noble. 





Tuesday, December 9, 2014

Season's Ringings





This is one of my favorite pictures of Charley. It's not the prettiest, but it is one that makes his Mama proud.

I posted this story in 2012 and well, I like it, so I'm posting it again. I like it because not only is it a picture of he and his Dad, it captures Charley stepping out of himself and doing something for somebody else. It also connects him to tne Kiwanis Club of Norwood as they ring the bells for the Salvation Army here in Knoxville. You must understand, this Kiwanis Club has all but adopted Charley and he's quite proud of that. Not only have they walked on his behalf in the Buddy Walk for the Down Syndrome Association of East Tennessee, they have also made him an honorary Kiwanian. And a very special honor it is.

So, here is the re-run of ringing the bells in 2012.


I call this one, "Season's Ringings..."


T’was the day of Black Friday and all through the town, the ringers were ringing, that holiday sound…

We see them every year, the bell ringers, the freezing few who stand outside the stores, reminding us shoppers that there are those in our communities who need our help.

When Charley was younger he’d try to talk the ringers out of their bells. “I me one,” he’d say, and Brad would give him a dollar to put in the bucket and then we’d be off on our way to celebrate the season.

He’s twenty-two now, and he still wants the bell. Every year he says, “I have it?” as he puts his dollar in the bucket.

So. Brad decided this year would be different. This year, Charley would get the bell. At least for a little while.
           
“Where goin’ Dad?”

“We’re ringing the bells,” Brad said.

“Why?”

“Because there are people whose needs will go unmet if we don’t. People are hungry, cold, and lonely. Bell ringing provides food and shelter. Unfortunately, there’s not much we can do about the loneliness.”

“Lonely?”

“Yeah, Charley, there are lots of people who have no one to share their lives and that makes them lonely. We have to reach out to them.”

“Okay, Dad,” Charley said, as he put on his red apron and picked up a bell.

Ring, ring. Ring-a-ding dingy. The two men in my life set out to keep people from being cold and hungry.

Now, if I recall from years past, the ringers stand still, and their arms go up and down, ringing. But at no time do I remember the ringer dancing and singing, but where tradition ends, Charley begins, and new traditions are born.

Dancing, ringing, singing, and informing everyone on their way into the store, “Need money here,” pointing to the bucket, doing the happy dance. That’s the Charleyway. 

Into the bucket went a dollar.

“Kanku,” Charley said. “Oh sir, money pwease.”  Plunk, another dollar.

One poor woman was heading into the store.

“Hello, Maam, you got money?”

“I’ve already given several times,” she said.

“Again!” he said. “Money fo da po, over here.”

Into her purse went her hand, and yep, out came a dollar.

Shopper after shopper, the teenage girls got a handshake or a hug (no one’s lonely on Charley’s corner). Even the kids gave him money. “Call me,” he’d say as they slapped him a high-five. Unless they didn’t give. Then he’d clear his throat and say, “Uh-hem. S’cuuuuse me, you got money?”

Brad told Charley that soliciting was one thing, hounding was another. “You are NOT to embarrass people into giving,” he said.

“I no bawassacud, Daddy. I winging da bell, dey got dollars.”

“But you’re not supposed to chase people down the sidewalk, Son…and you are NOT to hit them up twice.” The thing is, Charley would collect a dollar on their way into the store, and then talk them out of another on their way out.  One man admitted to stopping at the ATM because he didn’t want to come face to face with Charley. Not unless the happy dance followed.

Maybe it’s his Down syndrome innocence that opens the hearts around him. I don’t know. But I do know this; sometimes it takes a special needs person to remind you that if you are going to give, give with your whole body.

If you are going to ring, make sure the bell is heard.

And if you venture out this season, do it with a dollar in your pocket.

You never know where Charley might be lurking. I mean ringing.

                                                      *  *  *

Sherry McCaulley Palmer is the author of Life With Charley: A Memoir of Down Syndrome Adoption available on Amazon and Barnes and Noble. 


Tuesday, November 25, 2014

A Loss for Words



Waiting for the ladies

Having worked in the nursing home industry for nearly 20 years, I am no stranger to elderly ladies. I find them to be an incredible source of fun. Charley has not always shared my sentiments. And with good reason. When he was little we went to a new church. Not knowing anyone was in itself a challenge, but there happened to be a lady (I'm guessing around 90 years old). She was a very sweet lady, and was excited about meeting  Charley. Poor lady. Who could have known?

Charley was headed up the aisle, and there she came, from the other direction in her wheelchair. The two came face to face. That was okay. He started to say hi, but she reached out to shake hands with him.

All of a sudden, his eyes widened, and he screamed "Bwood!" At that, he bolted and ran from the sanctuary.

The lady looked at me. "I have no idea what just happened," she said.

But I did. She had long bony fingers and extra long fingernails painted with bright red nail polish.

"He thinks your fingernail Polish is blood," I said. "I'm so sorry."

At that, she burst out laughing. “Imagine that,” she said. “I’m bleeding and didn’t even know it.”

I hate to admit this, but as the Pastor’s wife if there was ever a time I had good reason to lose my sense of humor, this was it. The very thought that he would even think of offending a little old lady with his honesty. Turned out, I was more mortified than she was.


After that, Charley was a bit leery of elderly people. In fact, he wouldn't have much to do with them. The good news is, that was a long time ago. Now when the older ladies at church speak to him he tends to speak back, thank you, Jesus.

That's why I was a little concerned yesterday. We were to pick up an older lady and her daughter (who happens to have special needs), and give them a ride to church. I secretly hoped he wouldn’t be rude and hurt their feelings. All it would take would be some inappropriate comment. He better not, that’s all I could say

On the downside, he pitched a fit. Why? It had nothing to do with that lady or her daughter, rather it interfered with his plans to get to church and flirt with Tiffanie. How dare me take a detour.  I gave him my best scowl and drove right past the church. “You’ll just have to wait. It won’t kill you.”

“Yes I are,” he said.

“No it won’t.”

“Wash you attitude, Mommy.”

“You watch YOUR attitude, son."

That’s what arguing sounds like in our family. Then, when fussing doesn't work, we employ the silent treatment. So, we drove to the ladies house in silence. Stealing glances at each other, quickly turning our heads if the other spotted us looking, smirking, hanging on every silent glare.

On the upside, they didn’t have to witness this little exchange. Also on the upside, it was short-lived. When we pulled up at the lady’s house, he got out of the car and went to the door to get them.  Joann came out first, and got in the car. Her mother wasn’t so forthcoming.

In fact, we sat there a while and waited. And, waited. I didn’t mind. After all, sometimes people need a few extra minutes, but I could see him shuffling from foot to foot on the sidewalk. “Impatient buzzard,” I mumbled under my breath. “If he says one rude word to that lady, why, I’m gonna give  him a piece of my mind. I'm gonna give him a good reaming out. I'm gonna...”

And then, oh me of little faith, I found myself at a loss for words. Not only did he pull an attitude switch on me, he ran back to the car and opened the car door, peered in at Joann, and said, “You Mom comin’.”

Back he trotted, half-way up the sidewalk. Shuffling some more, then running back to the car again.“You  Mom comin’, I pwomise.”

Joann nodded at him.

Back to the sidewalk again. More shuffling.

“You Mom be here wight away.”

I couldn’t help it, he was so sweet I cried right there. He turned to me. “No cwyeen, Mommy. Dwy up.” Of course, this made me laugh.

And then, there she was, out the house and down the sidewalk, headed to the car.

And there he was, opening the car door, making sure she got in okay. So mannerly. So manly. This man, who fussed about long bony painted fingers so many years ago. Today, his fingers wrapped around the door handle as he opened and shut it for the lady. Then he slid into the front seat and winked at me, like, “I got this.”

He sure did.

No words needed.

Saturday, November 15, 2014

Charley NFocus




Charley and Pam Brooks - No wonder he's smiling!
If you asked me what Charley's biggest wish is, I would have to say he wishes to be a part of. In a word, he wants to be connected. To be in an arena where everyone sees him as he is; a regular person. Not a man with Down syndrome, but a man. On his terms, yes. But, accepted just the way he is. If he could articulate it, I believe that's what he would say.

On Thursday, November 13th, in Louisville, Kentucky, he got that chance. Thanks to the gracious invitation of Pam Brooks (My former school chum) that was extended to my family, we were guests at her table along with other representatives from NFocus Magazine for a night of spectacular food and entertainment at the March of Dimes Signature Chef fundraiser.

All right, helicopter mom that I am, I admit to momentary visions of how he might (or might not) fit in. How would he handle the crowd? (They were expecting at least 600 attendees). What would he eat? (Bye bye hamburgers. French Fries be gone - Hello gourmet feast). What if he wanted a glass of wine? (He is of age, after all). What if he got so excited that he danced a little jig in the midst of all those business suits and cocktail dresses? (He tends to do that when he's happy). Who would he sit with? (Besides his hovering parents). Would he be lonely? Who would he talk to? Charley has been known to rise to the occasion before. I was hoping this would be one of those times.

And was it ever. Even with all the action offering plenty of distraction, I couldn’t help but focus in on that grin of his. Sampling the cuisine. Watching the live auction, doing a little dance with one of Pam's associates after the dinner. Lonely? Not in this crowd. One by one, people stopped by to speak to him. Pam kept him informed of what was going on and what was coming next.

There are words for that night. NElectric. NSupercharged. NDelicious. NFascinating. NBenevolent. NCluded.

One might think Charley had a wonderful time. He did, but it was so much more than that. Yes, he enjoyed the food and the auction. He had fun meeting Pam and her fabulous NFocus associates, and her husband Joe. He was thrilled with the Godzilla DVD Pam brought him and the cookie Nancy gave him. All that.

But later when his head hit the pillow, he was pensive. I know the look; I've seen it before. It's a look that overrides any words. I could see it in his eyes. They were filled with what Charley calls his "happy." That place where you don't have to adjust your lens because the picture is perfect. That place where people see you as you. That place where you can just be yourself. I suspect the NFocus associates were just being themselves too. They may have no idea what they did for my son, but Brad and I sure do. And Charley does too.

I hope NFocus raised more funds for the March of Dimes than they ever dreamed possible. I hope that somehow they know what a difference they make in the lives of others. They sure made a difference for my Charley. And there's only one word for that. NPriceless.

Wednesday, November 5, 2014

"My" Book



Okay, I didn't see this one coming.

Oh, how I underestimate that extra chromosome of his.
And while I’m at it, what gives me the right to assume he doesn't know what’s going on?

The fact is, he’s very aware. Maybe even more than I. It’s been a much anticipated event in our house, waiting for the book.

Here’s what happened…

I left for work yesterday morning and didn't arrive home until around 8:15 pm. In the meantime, the mail truck came, the box was opened, and the book unearthed. I arrived home to find that Brad had placed the book on the table under the light (thought he’d surprise me). Except for one thing; my phone was ringing and ringing. Every few minutes. It was Charley, telling me a box had arrived, and could he have it please?

When I got home the first thing he said to me was, “I want dat book.”

I walked over, picked it up, held it up and said, “Wow!” 
It’s the first time I’d seen it, and what a thrill.

“I want dat book,” he said again.

“Tell you what, honey, I’ll order you a book for yourself,” I said.

“I want dat one,” he said.

And that’s how the evening went; about every five minutes he let me know that was his book.

“It’s my book,” I said.

But was it? Whose book was it? Mine? His? Seems only fitting he should have the first book in the family, after all, it is a book about him.

I held the book up. “What does this say, Son?”

“My name.”

“Yes, that’s your name. It says Charley.”

He tried to take it out of my hand.

“It’s my book,” I said. I wrote it. I should have a copy of it.

He tugged at the book. “Mine.”

Finally, my mother, who was listening to this exchange on the other end of the phone heard him and said, “Buy him a book. I’ll pay for it.” Well duh. Why didn't I think of that?

So I placed the order on Amazon and said, “It’ll be here in about five days days.”

Now. You must understand that in the Down syndrome mind five days never comes. We can reason that it takes time for the mail to get here, but Charley? Not so much.

“I dat one,” he pointed to the book. 

Oh what the heck. I signed a message inside the front cover and handed it to him. He hugged it to his chest. And with that, he had a book and I didn't.

I thought that was the end of that. That’s what I get for thinking.

A short while later, I was lying on the bed, playing with my iPad, when who should appear at the door.

“Wead me my Charley story,” he said.

Huh?

“Wead it Mom.”

He pulled his iphone out of this pocket, placed it on the bed, turned on the recorder, opened the book and pointed to a page.

“See? Wead dis.”

I looked into those eyes of his and melted. Right there, all over the page. What I saw was much more than excitement. It was more of a knowing contentment that he mattered. He's always mattered, don't get me wrong, but this was different. This was validation.

He sat and listened as I read one of the stories about him. 
He laughed, and nodded his head, in total agreement. Many people can't laugh at themselves, but it's one of Charley's greatest gifts.

Who would have known he'd be this engaged? Who could have guessed he would understand on such a level? We’d talked about it. But, I had no idea.

When I was finished reading, he thanked me, then took his iPhone to the couch, plugged it in, and fell asleep listening to his “Charley stories.”

He’s so smart. He knows he can’t actually read the words on the page (some individuals with Down syndrome can read on that level, but Charley can't at this point), He can, however, listen.

 And just like that? Life with Charley: A Memoir of Down Syndrome Adoption morphed into an audio book. How about that? Even the publisher doesn't know. Some authors wait years for that privilege. But in my case? There’s a Charley in the house.

Life is good. He’s got his book.

And I'll have mine. It’ll be here in about five days.


***

Note: Life With Charley: A Memoir of Down Syndrome Adoption is available at: Amazon.com and http://www.barnesandnoble.com/w/life-with-charley-sherry-palmer/1120669779?ean=9781937365707