Sherry McCaulley Palmer's Blog
October 29, 2020
April 8, 2020
Faceless
Last night after dinner, Brad tried on his mask. I’d made it out of charcoal grey cotton yarn, and attached a coffee filter with safety pins. Not the best solution, I know, but as a home crafter, this was the material I had on hand.
Charley leaned in to get a better look. “Daaaad, what dat?”
“I’ve got one for me too,” I said, holding up my pink one. “What color do you want, Son?”
Charley kind of chuckled.
“Why?”
“Why dat mask?”
“Because it’s ninja week.” I said. Everyone is wearing a mask these days, at least for now. You see, there’s this horrible virus, and we have to wear face masks to protect ourselves and others.”
“Mo-ommmmm, come on.”
I asked if he wanted to try it on.
Nope.
I placed the yarn on the table and encouraged him to pick a color.
“I fine, Mom,” he said.
“Are you sure? I’ve got black - it’s your favorite.”
“Mo-om.”
I explained to him that he could not leave the house without a mask.
Brad pointed to his mask, role modeling, encouraging Charley to do the same.
“Look Charley, it’s Sermon Man,” I said, attempting to lighten the tone, using his own words…Sermon Man has been a long-time nickname used by our son on Sundays.
He glared at me. “You said mask is bad.”
He was right.
The last time he had a mask was when we lived in West Virginia. Charley was eleven then and thought having a mask and a hat turned him into The Mask of Zorro, which wouldn’t have been so bad if he hadn’t jumped out the second floor window thinking he'd land on Tornado, Zorro’s trusty horse.
Luckily, the railing on the deck below broke his fall, and he didn’t break his body. I made a big deal out of putting the mask, the cape, and hat - all into the garbage. “Say goodbye to this,” I said, “Masks are bad. You will never wear a mask again. Not on my watch.”
So what was I doing sitting here, crochet hook in hand, asking what color he wanted his mask to be?
“Listen,” I said, “I know this changes things, but we are trying to comply with Government guidelines. We can make an exception, to the no-mask rule, especially if it keeps us all safe.”
Charley squinted his eyes. “I kick em,” said.
“You most certainly will not,” I said, thinking he was taking about Governor Andy Brashear. Charley watches him sometimes when we tune in at 5:00 for the Governor’s daily update.
I kick em,” he said again, then he went upstairs to his room.
A little while later he placed his nightly call to me on FaceTime. I could see him, lying on his bed, watching Batman.
“See?” he said, “I got dis.” He pointed the camera at the tv screen where he had his DVD player hooked up. Sure enough, right there on the screen, Batman and Robin in full swing, mask and all.
POW
BAM
WHOP
“Dat mask,” he said, “Dat da weal mask.”
So you think my crocheted mask is fake?
He said, yeah, and explained in his way that a real mask would give you the power. Not like that imposter yarn stuff. Well, he didn’t say it in so many words, but I knew what he meant. I mean, let’s get real here. How could yarn give you the power?
The power.
I thought about that, and even slept on it. In my twilight, I couldn’t help but smile.
Charley has always hero-worshipped his superheroes. Spider Man, Superman, Teenage Mutant Ninja Turtles, Power Rangers.
Superheroes wear masks. It’s a given. Even the Lone Ranger wore a mask and thought no-one knew it was him.
The hero swoops in, kicks the problem in the rear, and just like that, the problem is solved.
How I wish this were the case.
How I wish we could just put on our masks and swoop in.
Kick the problem in the hind end.
Bake bread for our church members.
Take soup to the sick.
Fix our favorite dish for the church potluck.
Have Easter dinner with our families. Hide decorated eggs for the kids. Eat chocolate bunnies.
Gather at our local restaurants and banter with the community.
In Charley’s world, Superheroes wear masks.
But not other people.
Not adults.
When it comes down to it, unless it's on the face of a Superhero, Charley has always hated masks.
And why not?
A mask hides the face. Hides the wearer. Hides the true self.
Charley finds wearing a mask absurd.
So absurd, in fact, that when I put my mask on, he said, "How rude!"
And so it is.
How rude it is, that something as faceless as a virus changes everything. How rude that fear propels even the best of us to resort to the internet as our main source of contact. To have online meetings where everyone talks over everyone, and no one hears anyone.
I’m no different than he is. I don’t like change. You know, the kind that demands we alter our routine, alter ourselves. Even our appearance. To stop being who we are, even if temporarily. It makes us feel powerless.
I don’t know about you, but I like being who I am. I like going to the store, talking to people, asking for help, providing help, being a wife, a sister, a Mom, a friend. Heck, I even like that not everyone likes me. It’s ok with me because I might not like them either. I just want to be me.
I learned all that from Charley. He sees no need to alter anything about himself. He’s just fine the way he is, thank you very much, so you goons who want to cover him with a mask can just for-get-it.
How I wish I could take him to Walmart and let him ride around in the electric shopping cart.
Say hi to everyone, and show his shopping haul to anyone who does and does not want to listen.
Let him pick out Superhero movies in the five dollar bin. Fight with him over not being able to afford the new releases. No, we will have to wait till the price comes down.
He knows that scene. But this one? This scene makes no sense to him.
People with Down Syndrome have this uncanny way of looking at the world.
There’s no faking anything and getting away with it. They always find you out.
So why? If I threw Mask of Zorro into the garbage, then how come I’m requiring him to become a ninja?
I’m struggling. The right words elude me.
“I’m doing this to give us the power,” I say.
“Who’s bad?” he wants to know.
“You mean who’s butt are we kicking?”
He nods his head.
“The virus.”
“What’s dat?”
“It’s what’s making people sick.”
“I fine,” he said. “Mom, I not sick.”
“I know you’re fine, and thank God for that. But other people are, and if we are not careful, we could get sick too.…”
“I watch my movie now,” he say.
“I crochet your mask now,” I say.
The screen goes blank.
Try explaining all this to a person who happens to have the 23rd chromosome, I double dare you. It’s abstract. Charley doesn’t do abstract. While the rest of us have all these gray areas, these things called a virus that we can’t see, and yet we can, there are these things that require us to explain until they make sense. People like my Charley are as grounded as it gets.
There is simply no way he can understand why his friend Ryan can’t come visit. Why he can’t see his friends at church. Why his friend Evelyn can’t bring him a cheeseburger and fries. Why Julie or Allison can’t come get him and take him for a joy ride.
When I was a teenager my folks would ground me when I didn’t follow the rules. And honey? When my mouth was rude, I got that extra added bonus of mouth sterilization, known as soap. Mom showed no mercy, I can tell you that.
Now that I’m an adult, I follow the rules, as much as I can, and how about that - I’m grounded again. And so are you. And so is Charley. The big guy, grinning at me through the computer screen. “See Mom? Now that’s a mask.”
Heaven forbid I should make him wear one of my stuck-at-home creations. Nothing sissyfied for him.
It hurts.
He thinks we are just being mean.
He wants to know why.
And so do I.
Why?
Why is this faceless mutant causing us to become paranoid that someone may have touched our stuff?
This faceless, killer, this thing that doesn’t even have a face.
And yet, it does.Even though we cannot see it, we see it.
We see it in the tape on the floor that marks the 6 foot safety zones.
We see it in the shopping carts filled with items no one would ever dream of stockpiling.
We see it in the tears of health workers. Business owners closing their doors. Friends, and family members who have lost their jobs, their loved ones.
Fear.
And yet, isn’t it ironic, that this faceless monster has done what no one has been able to do (at least not in my lifetime). It has kept us distant, and yet closer than ever. For the first time, we are all on equal footing.
You are no better than me. I am no better than you. None of us has any power over this invisible out of control cruelty.
This cruelty that demands we isolate from loved ones. Demands that we shut others out. Keep your distance or else.
And what does that mean, anyway? Does it mean we will treat each other better when the danger lifts? We certainly have plenty of time to think about it. How will I act? How will you act?
When we get the all clear, does it mean we will run to each others arms, and never let go? Does it mean that neighbors who never gave us a nod before will all of a sudden chat over the back fence?
And what does it mean for Charley?
Why wasn’t he allowed to wear a mask before, but now all of a sudden, out of nowhere, I’m demanding that he wear one. What do you know- Mask of Zorro isn’t in the garbage after all.
Why?
“Because I I want you to be safe.”
“From who?” he asks.
“From the virus.”
“Where?” he’s looking out the window, like there’s some intruder fixing to burst through the door.
“I no see it,” he says.
“I hope you never see it, Son.”
But still, he wants to know. Demands to know, “Where is it?”
“It’s an illness, Charley, it’s not a person.”
“Mom, I fine.”
Guess I’d best put this in language he can understand.
“The mask will give you the power,” I tell him. “Power to kick the virus in the butt. I’m making this mask for you because I love you, and that gives me the power, which means you will wear it.”
“Or what?” he says.
“Or I will kick your butt,” I say. He makes some remark under his breath and stomps up the stairs.
He’s had just about enough of this.
And so have I.
Charley leaned in to get a better look. “Daaaad, what dat?”
“I’ve got one for me too,” I said, holding up my pink one. “What color do you want, Son?”
Charley kind of chuckled.
“Why?”
“Why dat mask?”
“Because it’s ninja week.” I said. Everyone is wearing a mask these days, at least for now. You see, there’s this horrible virus, and we have to wear face masks to protect ourselves and others.”
“Mo-ommmmm, come on.”
I asked if he wanted to try it on.
Nope.
I placed the yarn on the table and encouraged him to pick a color.
“I fine, Mom,” he said.
“Are you sure? I’ve got black - it’s your favorite.”
“Mo-om.”
I explained to him that he could not leave the house without a mask.
Brad pointed to his mask, role modeling, encouraging Charley to do the same.
“Look Charley, it’s Sermon Man,” I said, attempting to lighten the tone, using his own words…Sermon Man has been a long-time nickname used by our son on Sundays.
He glared at me. “You said mask is bad.”
He was right.
The last time he had a mask was when we lived in West Virginia. Charley was eleven then and thought having a mask and a hat turned him into The Mask of Zorro, which wouldn’t have been so bad if he hadn’t jumped out the second floor window thinking he'd land on Tornado, Zorro’s trusty horse.
Luckily, the railing on the deck below broke his fall, and he didn’t break his body. I made a big deal out of putting the mask, the cape, and hat - all into the garbage. “Say goodbye to this,” I said, “Masks are bad. You will never wear a mask again. Not on my watch.”
So what was I doing sitting here, crochet hook in hand, asking what color he wanted his mask to be?
“Listen,” I said, “I know this changes things, but we are trying to comply with Government guidelines. We can make an exception, to the no-mask rule, especially if it keeps us all safe.”
Charley squinted his eyes. “I kick em,” said.
“You most certainly will not,” I said, thinking he was taking about Governor Andy Brashear. Charley watches him sometimes when we tune in at 5:00 for the Governor’s daily update.
I kick em,” he said again, then he went upstairs to his room.
A little while later he placed his nightly call to me on FaceTime. I could see him, lying on his bed, watching Batman.
“See?” he said, “I got dis.” He pointed the camera at the tv screen where he had his DVD player hooked up. Sure enough, right there on the screen, Batman and Robin in full swing, mask and all.
POW
BAM
WHOP
“Dat mask,” he said, “Dat da weal mask.”
So you think my crocheted mask is fake?
He said, yeah, and explained in his way that a real mask would give you the power. Not like that imposter yarn stuff. Well, he didn’t say it in so many words, but I knew what he meant. I mean, let’s get real here. How could yarn give you the power?
The power.
I thought about that, and even slept on it. In my twilight, I couldn’t help but smile.
Charley has always hero-worshipped his superheroes. Spider Man, Superman, Teenage Mutant Ninja Turtles, Power Rangers.
Superheroes wear masks. It’s a given. Even the Lone Ranger wore a mask and thought no-one knew it was him.
The hero swoops in, kicks the problem in the rear, and just like that, the problem is solved.
How I wish this were the case.
How I wish we could just put on our masks and swoop in.
Kick the problem in the hind end.
Bake bread for our church members.
Take soup to the sick.
Fix our favorite dish for the church potluck.
Have Easter dinner with our families. Hide decorated eggs for the kids. Eat chocolate bunnies.
Gather at our local restaurants and banter with the community.
In Charley’s world, Superheroes wear masks.
But not other people.
Not adults.
When it comes down to it, unless it's on the face of a Superhero, Charley has always hated masks.
And why not?
A mask hides the face. Hides the wearer. Hides the true self.
Charley finds wearing a mask absurd.
So absurd, in fact, that when I put my mask on, he said, "How rude!"
And so it is.
How rude it is, that something as faceless as a virus changes everything. How rude that fear propels even the best of us to resort to the internet as our main source of contact. To have online meetings where everyone talks over everyone, and no one hears anyone.
I’m no different than he is. I don’t like change. You know, the kind that demands we alter our routine, alter ourselves. Even our appearance. To stop being who we are, even if temporarily. It makes us feel powerless.
I don’t know about you, but I like being who I am. I like going to the store, talking to people, asking for help, providing help, being a wife, a sister, a Mom, a friend. Heck, I even like that not everyone likes me. It’s ok with me because I might not like them either. I just want to be me.
I learned all that from Charley. He sees no need to alter anything about himself. He’s just fine the way he is, thank you very much, so you goons who want to cover him with a mask can just for-get-it.
How I wish I could take him to Walmart and let him ride around in the electric shopping cart.
Say hi to everyone, and show his shopping haul to anyone who does and does not want to listen.
Let him pick out Superhero movies in the five dollar bin. Fight with him over not being able to afford the new releases. No, we will have to wait till the price comes down.
He knows that scene. But this one? This scene makes no sense to him.
People with Down Syndrome have this uncanny way of looking at the world.
There’s no faking anything and getting away with it. They always find you out.
So why? If I threw Mask of Zorro into the garbage, then how come I’m requiring him to become a ninja?
I’m struggling. The right words elude me.
“I’m doing this to give us the power,” I say.
“Who’s bad?” he wants to know.
“You mean who’s butt are we kicking?”
He nods his head.
“The virus.”
“What’s dat?”
“It’s what’s making people sick.”
“I fine,” he said. “Mom, I not sick.”
“I know you’re fine, and thank God for that. But other people are, and if we are not careful, we could get sick too.…”
“I watch my movie now,” he say.
“I crochet your mask now,” I say.
The screen goes blank.
Try explaining all this to a person who happens to have the 23rd chromosome, I double dare you. It’s abstract. Charley doesn’t do abstract. While the rest of us have all these gray areas, these things called a virus that we can’t see, and yet we can, there are these things that require us to explain until they make sense. People like my Charley are as grounded as it gets.
There is simply no way he can understand why his friend Ryan can’t come visit. Why he can’t see his friends at church. Why his friend Evelyn can’t bring him a cheeseburger and fries. Why Julie or Allison can’t come get him and take him for a joy ride.
When I was a teenager my folks would ground me when I didn’t follow the rules. And honey? When my mouth was rude, I got that extra added bonus of mouth sterilization, known as soap. Mom showed no mercy, I can tell you that.
Now that I’m an adult, I follow the rules, as much as I can, and how about that - I’m grounded again. And so are you. And so is Charley. The big guy, grinning at me through the computer screen. “See Mom? Now that’s a mask.”
Heaven forbid I should make him wear one of my stuck-at-home creations. Nothing sissyfied for him.
It hurts.
He thinks we are just being mean.
He wants to know why.
And so do I.
Why?
Why is this faceless mutant causing us to become paranoid that someone may have touched our stuff?
This faceless, killer, this thing that doesn’t even have a face.
And yet, it does.Even though we cannot see it, we see it.
We see it in the tape on the floor that marks the 6 foot safety zones.
We see it in the shopping carts filled with items no one would ever dream of stockpiling.
We see it in the tears of health workers. Business owners closing their doors. Friends, and family members who have lost their jobs, their loved ones.
Fear.
And yet, isn’t it ironic, that this faceless monster has done what no one has been able to do (at least not in my lifetime). It has kept us distant, and yet closer than ever. For the first time, we are all on equal footing.
You are no better than me. I am no better than you. None of us has any power over this invisible out of control cruelty.
This cruelty that demands we isolate from loved ones. Demands that we shut others out. Keep your distance or else.
And what does that mean, anyway? Does it mean we will treat each other better when the danger lifts? We certainly have plenty of time to think about it. How will I act? How will you act?
When we get the all clear, does it mean we will run to each others arms, and never let go? Does it mean that neighbors who never gave us a nod before will all of a sudden chat over the back fence?
And what does it mean for Charley?
Why wasn’t he allowed to wear a mask before, but now all of a sudden, out of nowhere, I’m demanding that he wear one. What do you know- Mask of Zorro isn’t in the garbage after all.
Why?
“Because I I want you to be safe.”
“From who?” he asks.
“From the virus.”
“Where?” he’s looking out the window, like there’s some intruder fixing to burst through the door.
“I no see it,” he says.
“I hope you never see it, Son.”
But still, he wants to know. Demands to know, “Where is it?”
“It’s an illness, Charley, it’s not a person.”
“Mom, I fine.”
Guess I’d best put this in language he can understand.
“The mask will give you the power,” I tell him. “Power to kick the virus in the butt. I’m making this mask for you because I love you, and that gives me the power, which means you will wear it.”
“Or what?” he says.
“Or I will kick your butt,” I say. He makes some remark under his breath and stomps up the stairs.
He’s had just about enough of this.
And so have I.
December 11, 2018
A Christmas Stocking for Charley
This post is for our new churches in Kentucky. We can't wait to become a part of your family!
Every year at Christmastime I repost this story. This adventure of Life With Charley began in 1990 when Charley was our Christmas present to ourselves.
I wrote my book "Life with Charley: a memoir of Down syndrome adoption" when Charley was 21. He is 28 now. The book is out of print right now, but I'm working on editing to reprint.
Until then, this is the first chapter...it’ll have to do ya...Thanks for reading! Blessings from us Palmers, warts and all. And remember, we are flawed, but God is not.
A Christmas Stocking for Charley
It was the best thing we ever did.It was the day the two of us became three. The day a blond-haired,ocean-blue-eyed, angel-faced, baby boy with Down syndrome
wiggled his way into our hearts. That’s the day he becamethe rest of our lives.
We had been married for six years, during which headlinesincluded such historical events as the Space Shuttle Challengerdisaster, the release of Nelson Mandela after twenty-seven yearsin captivity, and the invasion of Kuwait by Iraqi troops, setting offthe Persian Gulf War.1Life Goes On was on primetime television,starring Chris Burke as Charles Thatcher, a teenager with Downsyndrome. And somewhere in Texas was a Desert Storm babyin a foster home. He was soon to be ours. We would name him“Charles” in honor of “Corky,” Chris Burke’s character.We couldn’t wait to call our folks. We’ve all been there. Youpump yourself up and blurt out the words, but the party on theother end of the phone isn’t sure they’ve heard you right.“Mom, Dad, we’re adopting a baby. Oh, and by the way, he’sgot Down syndrome.”
Silence.“Mom? You there? Say something.”Was it my imagination, or did Mom hang up on me? Well,maybe that is a bit of an exaggeration. She did, however, handthe phone to Dad.
Ring after ring, Mom’s friends called to deliver the bad news.“These kinds of babies require work,” they said, as though we’dbought the defective model and could still take him back tothe store.“All babies require work,” we said.“You sure about this?”“Yes, we’re sure.” I couldn’t help but chuckle while adding,“Tell Mom I said hi.” Some of these do-gooders chuckled too.“Team Mom” continued to call. Surely we would come to oursenses. Or not.Ring.“Do you have any idea what you are getting into?”And each time we answered, “No. No, no, for the last time,no.” For that matter, does anyone ever know? Does any child comewith an instruction manual? And if so, what would it say? Proceedwith caution? Open at your own risk?What did we know of Down syndrome? Not much.What did we get? More than we ever hoped for.Ring.“There are institutions for children with these types of disabilities,”one caller said.Somewhere between amusement and irritation, Brad and Igrinned at each other. “Thanks, but we’re keeping him.”
We lived in New Orleans. It’s a fun place to visit with the FrenchQuarter restaurants, its Muffulettas, its powdery sugar beignetpillows that melt into your taste buds, and its crawfish raging with fiery spices so lethal that your angry lips throb until dousedwith ice cubes. For the homegrown folk, it’s standard. But forthe occasional visitor not equipped with a cast iron stomach? It’sgood-bye happy tummy, hello Tums.
What is it they say about never, ever, say never? New Orleanswas my never-land. I never wanted to live there, so far away frommy folks. But then, I’m not the boss. I don’t get to say where welive, or for how long. I am, after all, married to a pastor, whichI said I’d never do either. Me? Marry some stuffed shirt of apreacher? Fat chance. No way, no how, no thanks.But I did. I married a cloth-man. Dad was just fine with that.He said, “Okay by me, won’t it be great to have someone in thefamily who can marry and bury us?”
We moved twice before we were destined for the great cityfamous for its Creole cuisine, its Mardi Gras parades, its BourbonStreet, and its drive-through daiquiris. How was I to know thevery place I said I’d never live would become my reason to live?My purpose? My call? How was I to know that this city they callThe Big Easy would manifest itself in a world of big blessings; aworld in the form of motherhood?
It is a twelve-hour drive from the Pelican State to the BluegrassCommonwealth of Kentucky, where our folks live. The onepromise Brad made when we married in 1985 was that if I wouldfollow him wherever his pastorate called, he would take mehome for Christmas. And he did every year. Whether it involveda twenty-hour drive from Oklahoma or the twelve-hour drivefrom Louisiana, we would be there for Christmas dinner with thefamily. This year would be no different. We would make it home,only we wouldn’t be driving. This year we would fly. And this timethere would be three of us. Not two.
I grew up in Louisville, home of what is known as the mostfamous two minutes in sports, in the same house where lovedones still gather for holidays, known to us as “8612.” It may looklarge from the outside, but the two-story red brick Dutch colonialis dwarfed by the combination of my mother’s Baldwin babygrand piano, my grandmother’s antique couch, and the monstrosityof a computer desk that shrinks the den—making it claustrophobicat best. But that doesn’t stop us from rubbing shouldersat the dinner table, squeezing into the matchbox quarters as Bradbows his head to give the blessing, and then swapping stories andlaughing until our cheeks hurt.
One of the highlights is gathering around the room and handingout the Christmas stockings, each of which has been handknitby Mom, complete with a fuzzy angora Santa beard and thename knit into the Kelly green, white, and rich red heirloom. It’sa unique gift, which she makes to welcome newcomers to thefamily, such as spouses and grandchildren. In our house, a newstocking is an initiation into the family. It says, “You are now oneof us.”It was only natural that I would long to see a stocking forCharley. He’d come into our lives just eleven days earlier at thetender age of two months.
I was thirty-six then. I’d struggled for years with endometriosis,eventually undergoing ovarian cyst surgery, which left mewith half an ovary. The doctor said I could still have children, butI wasn’t so sure. Uncontrollable bleeding was becoming a way oflife, so much so that the subject of children took a back seat to mymonthly visits to the emergency room. Not that we didn’t want afamily, but we weren’t in any rush. If it was supposed to happen,it would.The kind of job I had didn’t help either. I was working as aconsultant for a nursing home company, traveling to several different states and spending at least three nights each week awayfrom home when one day, out of nowhere, Brad said, “You needa baby.”“Is that so?” I said.“Just think about it, okay?”
Surely he was joking. Or was he? The anticipation in his eyespleaded otherwise. My God, I thought, he’s serious.To make matters worse, I was a minister’s wife. And thatmeant certain things. Babies. Toddlers. Casseroles. Sundayschool. Diapers. At least, I thought those were the expectations.By then we’d served three churches as a clergy couple. Onein Oklahoma, and two in Louisiana. First stop—Oklahoma, anda small white church three hours from Oklahoma City in themiddle of what I called “wilderness central,” twenty hours awayfrom loved ones. My first church as a pastor’s wife, and what didI know of that? Nothing. How could I? I’d tried on religions likemy sister tries on shoes.
As an infant, I was presented for baptism in the CatholicChurch, but grew up Episcopalian. Later, I returned to theCatholic Church while in college at Eastern Kentucky Universityso I could play my guitar during mass and withdrew when thepriest hurt my feelings one Ash Wednesday by denying me communion at the altar. The next day I walked into the Baptist StudentUnion, where I turned my life over to Jesus and was baptized forthe second time in my life, only this time it was a conscious decision.Over the next two years, I drove my family crazy trying toevangelize them every chance I got as if they didn’t already have achurch of their own. “Are you born again yet, sister?” I’d say. “Godwants you to give your life to Him, little brother!” I still believeit. God does want us.
I don’t remember how it came about, but during my sophomoreyear, I found myself spending time with a crowd that spokein tongues. I never did, though. Not that I dispute things like thatcan happen, but it wasn’t for me.On Thursday nights, I stood outside the local bar with mynewfound holy friends shaking my Bible at people passing by.“Jesus is the way!”“He’s your one-way ticket to heaven!” I still believe that too.
By the time I met Brad, I attended a small Christian churchin Lyndon, Kentucky. It was an active church with a young adultsingles group and I sang in the choir. Once again, I was baptized.Secretly, though, I was beginning to wonder how many times Ineeded to be dunked to prove my faith.Then Brad walked into my life. I was drawn to him instantly.With his quick wit and a booming laugh that drives my mothercrazy, Brad was anything but a stuffed shirt and unlike any ministerI’d known. And yet, he was everything a minister should be.As our pastor friend J. Pat Kennedy says, “Brad has a minister’sheart.” There’s little you could tell him that would shock him, andthere’s nothing you could tell him that would make him judgeyou. He is a God-man—but doesn’t beat you over the head withit. When I attend church I want to be challenged by the message,but I also want to hear that God loves me. I don’t want tobe yelled at from the pulpit. Or scolded. Or threatened. I knew inmy gut that Brad was the guy for me the first time I heard himpreach. Whether or not I was clergy spouse material remained tobe seen.
Maybe it was my imagination but didn’t all ministers’ wiveswear polyester jumpers and have a baby propped on one hip?At least, that was my perception. Well, not me, buster. “I don’thave time for a baby,” I said. My time was spoken for. I wasMrs. Church, Mrs. Potluck Casserole, Mrs. Preacher’s Wife,Mrs. Nursing Home Do-gooder, Mrs. Working Woman, Mrs.Busy-Busy-Much-Too-Busy.
“I don’t do kids,” I told him. There’s a word for people like me:coward. Thing is, kids scare me. Had I neglected to mention thatwhen the church moms asked me to teach Sunday school, and Isaid, “No, it isn’t my thing,” that it wasn’t my thing? I knew nothing about kids. And for good reason.
My babysitting days ended with a pot of boiling milk. I wassixteen, standing at the stove making hot chocolate for the threekids I was supposed to be watching, stirring the milk as it came toa rapid boil. And who was watching them? Don’t ask me, becausewhen I lifted the pan to pour the milk into a cup, one of the kidsran under my arm. There went the boiling milk, all over littlePammy’s head. From then on, I begged Mom and Dad for a loanwhen I had to, but never set foot in babysitting territory again.
I should have told the church moms that, but didn’t know how.What would I say? If you allow me to supervise your kids, we’ll see who can make it to the emergency room first? So, no. I had no intention of doing wee worship, or whatever they called it. To teachSunday school would be perfect-pastor’s-wife suicide, so I saidno. No. No. No, thank you, no. But church people have a way ofwearing you down, and I should have stuck with the word “no”instead of allowing them to beg until I caved and said, “I’d love to.”
The poor mothers. How were they to know I was telling a bigfat lie? I’ve never figured out how to contain a room full of squirming toddlers when one is threatening to eat glue, another is calling me “fatso,” and another is having diarrhea, all at the same time.
I did my time, though. For six months, I did the cliché. grinand-bear-it. No, I take that back. I grinned, and the tiny totsbared it (well, every time one of them escaped and ran aroundthe church without their Huggies). And what did this get me? Acommittee of young mothers (in the Presbyterian Church thereis a committee for everything) who felt the need to suggest (andnot so nicely) that if I intended to teach Sunday school (morelike toddler patrol), it might be a good idea if I would stop runningaround the room like a beheaded bird.
If I had to pinpoint when my preacher’s wife paranoia began,this was it. I don’t care if people talk about me behind my back.But when they say it to my face? That’s when it hurts my feelings.And say it they did. “You might look like your the one incharge.” Which brings me to my next point. Who said I wantedto be in charge?
I thought about this. Perhaps it’s my approach. Perhaps I shouldact a smidge more authoritative, so I plastered my face with thehappiest smile I could plaster, opened the door to the Sundayschool room, and announced, “Okay, kids (ankle biters), let’s trysomething new this morning. You will shut your little yippeeyaps, and you will mind me so I don’t look like an incompetentwingless wonder in front of your parents. Anyone attempting toleave this room will be caught. And we are all going to have fun.Do you understand me? Fun.”
A half an hour later the little half-pints were running throughthe sanctuary while I took little Susie to the bathroom, again.Before I knew it, the other mothers were assisting me in theSunday school class. From then on I was honest about my Sundayschool teaching disabilities, and when I said no, I meant it.My people-pleasing-at-church days were over, at least untilthe next time. For the time being, what they had was a made-from-scratch, non-cookie-cutter minister’s wife. Whatever weirdailment I had that made me desire kids was rattled out of me onSunday mornings. A miracle cure, that’s what it was. But just sothe parishioners would think I was anything resembling normal,I’d say, “I love kids.” If only I knew what to do with them.I never even knew I wanted a child. Or did I? Maybe I justdidn’t notice.
Brad, however, did. He noticed every time I walked out of theroom when a baby commercial came on TV, and by the gracefulway I declined invitations to baby showers. He noticed the way Isprinted past the baby clothes in stores, and how I barely held mynieces. He noticed when my lifelong soul sister, Barb, called todeliver the news that she was pregnant. “That’s great,” I said. “I’mso happy for you.” I swallowed the lump in my throat.“Barb’s going to be a great mom,” I said to Brad.“She sure will,” he said. “What about you?”“Don’t be ridiculous. I have all the babies I can handle.”“But you stopped teaching Sunday school two years ago.”“Drop it, Brad,” I said. And he did. Well, until I brought it upagain.“You’d think a person is only half a person unless she’s got ababy,” I told him once, after seeing a commercial for baby wipes.He cleared his throat and said, “Yeah, what about that.”
The next day, without my knowledge, he contacted an adoptionagency.
That fall we attended a Thanksgiving dinner with other familieswho had adopted special needs children. As I sat there wonderingwhat in the world I was doing at such an event, I lookedaround the room. It was packed with kids crawling, rolling, andrunning around all over the place. Mothers everywhere. Dads.Kids with squinty eyes. Downy fluff. Ambrosia with feet.The director of the agency had a ten-month-old. For somereason, I reached out and took her out of her mother’s arms, andthe strangest thing happened. It felt like a bolt of lightning wentright through me because the instant I touched her I rememberthinking, “This is what I am supposed to do.”
Imagine that. Me, a mom-to-be. Who knew? The Holy Spirit, that’s who. How do I know this? Because from that moment, everything fell into place.
One morning about a month later Brad and I found ourselvessitting across the desk from a social worker who explained thatif we planned on adopting a “normal” baby, it could take months,maybe even years.“Well, that’s it,” I said and picked up my purse. “No babies.Thanks for your time. Come on, Brad, let’s go.”I got about as far as the end of the couch in her office whenshe said, “Would you consider a baby with special needs?”Brad and I answered at the same time, “Yes.” We looked ateach other, surprised. Had we forgotten to talk about this?“What type of special needs would you be willing to take?”she asked.Again, we answered at the same time, “Down syndrome,” andthen our mouths dropped.
Two Tickets to Texas…
Another month passed. I was in a staff meeting when the speakerphonebuzzed, and then, the secretary’s voice. “There’s an emergencyphone call for Sherry.”
I braced myself, picked up the receiver, and gave a shaky,“He-ll-o.”Brad was on the other end. “Hi, Mom.”“Excuse me?”“I said, hi, Mom.”“Knock it off, Brad, I’m in a meeting.”“Congratulations,” he said. “You’re going to be a mother.”What the…“The adoption agency called and said there’s a baby availablein Texas. The only thing is, we have to tell them we want himtoday because if no one claims him the state is scheduled to takecustody of him tomorrow.”What was I supposed to say? “We’ll talk about this later overdinner?” I was at my company’s corporate office in Shreveport,and Brad was six hours away in New Orleans on the other endof the phone.“Sherry, are you there?”The faces of my coworkers and my bosses blurred into a seaof raised eyebrows, all waiting to know what the emergency was.“I don’t know, it seems so sudden,” I said, barely able to breathe.“What do you say, honey? This is our big chance.”“What do we know about him?” I asked.“Not much,” he said. “He’s two months old and has Downsyndrome. The agency says he’s been in a foster home since hewas born. His birth mother is a college student and has had noprenatal care. That’s about all I know.”
Thump, thump. My heart hammered the walls of my chest.I tried to swallow, but couldn’t.My face was wet. Was I crying? And in a business meeting?Everyone in the working world knows you don’t cry at work.Even if you are celebrating what should be a private momentbetween you and your husband.
What would it do to my career? I was all about work—suitsand low pumps, pantyhose designed to cut off the circulation tomy fat little thighs, briefcases, making it to the plane on time,jet-setting off to the next work assignment, and knocking myselfout to impress the boss. I’d come a long way from activity directorto corporate consultant. I had arrived, and I wasn’t about to giveit up now. I wasn’t the diaper bag, sterilized-bottle-toting type.Was I?
I sat plastered to the chair, everything around me suspended.The color must have deserted my face because someone sat acup of water in front of me and then I heard myself say, “Listenhere, you. I don’t make decisions that fast. You call that socialworker back right this minute and tell her we’ll take him.”I tipped the cup and sipped the water.My boss looked at me for a moment and then said, “Sherry,what’s wrong?”“Brace yourselves,” I said. “I’m sort of pregnant.”The room exploded. People were on their feet hugging me andasking, “So when are you due?”“As soon as we can fly to Texas and pick him up.”
And just like that, our destination became our destiny: ourbags got packed, and operation adoption was set in motion. Wewere about to meet the rest of our lives. The tiny human beingwho would permanently shape every thought, every decision, andevery minute of every day. Forevermore, we would look at theworld through a pair of crescent-moon-shaped eyes—the eyes ofDown syndrome.
We had chosen it. But why? Why would we want an infantwith DS? There’s a genetic test called amniocentesis to help parents avoid such things. Perhaps we were asking the wrong question.
Maybe the question wasn’t why, but why not? He was justa baby, not a birth defect. True, he was a baby with Down syndrome, but that wasn’t the issue. The fact was, we adopted because we wanted to be parents. Nothing more. No hidden agendas, no cause c.l.bre.
Where the problem presented was when others learned of hisDS. In those days he wasn’t considered “normal,” whatever normalis. Which begs the question: should any child be regardedas abnormal? Less perfect? Is that what it means to have Downsyndrome? And while we’re at it, what is normal? Does normalmean being a carbon copy of everyone else? And does being aclone mean you are worth more? More worthy of love?
Did we know that other kids would be afraid of him? Whisperabout him? Hide behind their mothers when he was around?Maybe not. Did we know that other mothers would cling to theirchildren, afraid it might be contagious? Probably not. Did weknow that we would put ourselves between him and ogling eyesto shield him from the gawking? Definitely not.
Since Brad and I both worked with people with Down syndromewhen we were younger, we thought we knew all we neededto know, which amounted to knowing a whole lot of nothing.We flew to Texas two weeks before Christmas. It was blindfaith that drove our rental car to the social worker’s office wherewe would meet our future. As Brad and I sat there clinging toeach other, we were filled with questions: Was he healthy? Whatwould he look like? What the heck were we doing?“What if I fail?” I said to Brad.“You’ll be a great mom.” Then Brad asked, “What if I fail?”“You’ll be an awesome dad,” I said, and just then the dooropened. In walked the social worker, holding a bundle.“Get ready for more love than you ever thought possible,” shesaid and handed him to me.I looked into the baby’s eyes, and I heard a voice say, “You’llhave to move out, you know.”What? I looked at Brad, but his lips weren’t moving. Great,now I’m hearing voices.
“You. Yes, you. Move out.”Move out of where?“Yourself. Get out of yourself so we can move in.”Who?“Me and the baby,” the voice said. “There’s no room for us—you are too full of you.”I looked at the baby. He blinked his eyes.
I blinked back.“Why me, Lord?”“Why not you?” He said.“You’re going to have to help me.”“I thought you’d never ask.”
Again, my heart beat. Thump. Thump.The baby studied me. Who was I? What was I? Why was Iholding him?Brad stuck out his finger so the baby could wrap his tiny handaround it. “He’s got quite a grip.”I cried and cried, and finally said, “Hi.”Later that same day, armed with a full diaper bag and babyformula, we flew back to New Orleans to begin our life as a newfamily. I eventually stopped crying and started smiling.I had a baby.Me. The girl who botched babysitting.I was a mother.Me. The girl who said she’d never be one of those polyesterpastors’ wives—part parishioner, part nursery attendant. The onewho was done with Sunday school forever and ever, amen.Me. A mom.
I was overjoyed. I was ecstatic. I was…gagging.“How could you?” I said as I sat in the middle of the floor ofthe ladies room at the airport. The restroom was crowded, butonly three people existed at that moment. Me and him. And thelady bending over me. “What an adorable baby,” she said, and atthat, I burst into tears. “Thank you, I think.”“Well, honey, what’s wrong?” she said.I didn’t dare let her catch my eye. “He’s stinky,” I said.“So?”“So, I’ve never changed a diaper before.”She stood back bewildered. “Are you his mother?”“Well, technically, yes.”“What do you mean, technically?” By now more than one personstood over me.
“I just got him today,” I said.“Today?”“About an hour ago,” I said and told her about our adoption.And God bless her, that woman sat down right next to me (inher dress, high heels, and all) and took me step by step throughhow to change a diaper. I could have just kissed her because I nolonger needed to kill myself. I begged her to please come homewith me for the next fifteen years, but unfortunately, she alreadyhad her own life.After I thanked her and she left, I looked at Charley and said,“You, my friend, are forbidden to ever mess your britches again.”That was the first time he smiled at me, and now that I thinkabout it, he seemed to flash a big silly grin every time I changedhis diapers from then on.
Three Tickets to Louisville…
The following week we took Charley home to meet his new family.From the initial home study in September to taking him homein December, we’d barely had time to process it ourselves, muchless expect anyone else to. How could they? It’s not as if they’dhad the traditional nine months to get excited about a new baby,and yet here we were, bringing him home for Christmas. We hadno idea how it would go. It’s not like our news was received without reserve. But, since things happen in God’s time (not mine), I would just have to trust that the same family who loves me wouldlove me enough to love him.
Brad and I knew we were asking a lot of our families. Weasked that they accept the fact that they would now have to saythings like, “My grandson has Down syndrome,” “My nephewhas DS,” and “My cousin has Down syndrome.”
Besides Brad and me, Joanna (Brad’s sister) was the only otherperson in our families to have associated with DS. And to myknowledge, no one had ever mentioned the word adoption, letalone special needs. And yet, despite my Mom’s phone callingcampaign trying to talk us out of it, we stood in line at the airport,flying higher than we thought possible, hoping that thingswould click. Praying that Mom would take one look at Charley and fall in love, like an overjoyed grandma. “Here, let me have him,” I heard her say in my self-talk. And in my mind, I pictured her setting the baby down on a freshly laundered towel to change a diaper and blowing raspberry kisses onto the bottoms of his vanillatootsie roll toes as the rest of the family looked on.
But when I opened my eyes, the questions were still there:Will they accept him? Will they love him? Was I asking toomuch? Praying enough? I would soon know the answer.8612 is a backdoor house. No one comes to the front doorunless you are delivering a package or are selling something.Family, friends, neighbors—we all enter through the kitchen, andwhen we do, we find everyone. It’s where you find the iced tea, theblue cheese ball, the munchies. Not that the space is big enough.It’s standing room only, along with the chaos of hugs and kissesas you move from person to person, yakking, helping yourself tothe snacks, yakking some more.
This Christmas visit was no different, except along with thehugs and kisses, there was one tiny tyke, looking up from his carrier from face to face. And the faces? Oh, boy, did they study him.“He’s a big boy,” Dad said.Marcy (my sister) reached out and played with his hand. “Hi,Charley.”Mom leaned in for a closer look. “Hi there.”Brad and I beamed. “Isn’t he perfect?”Marcy and Mom directed me upstairs to what would be ourroom while we were there. In the room was a crib with stuffedanimals. I swallowed hard. They did want him. I wondered whatbrought them to this moment. Was it their love for me? The resignation that there was a new family member, like it or not? Mayas well get on board? I drank in the details. Look at the work thatwent into all this. “Thanks,” I said, and they hugged me.
I headed back down the stairs and into the living room wherethe decorations sparkled with everything Christmas. SouthernLiving, that’s what it was. Collectible carolers in their CharlesDickens outfits warmed the china cabinet with garland and berries(Marcy is quite the decorator) and the table had our traditionalapple tree centerpiece (Mom makes one every year). Thehallway smiled with tinsel and lights, and there, sitting on thetop of the piano was the handmade porcelain nativity set thatMom bought when she was first married. But even with all thetrimmings, as lovely as they were, the display I wanted to seemore than anything was the mantel lined with the dog tags thatbelonged to our beloved boxer Max (they’ve hung there since hedied), and the stockings, hand-knit by Mom.
I felt a pit in my gut. I knew Mom hadn’t had time to makeone on such short notice, but still, I hoped. Please, God, let therebe a stocking for my baby. I braced myself and turned toward themantel. My heart sank. There they were—the stockings, hangingside by side, except for one.
Swallowing hard, I walked into the kitchen, dropped into achair, and wondered how I would make it through the Christmasholidays knowing Charley had no stocking. Why wasn’t it there?Was he that different? Was it because he was adopted? Because hehad DS? Couldn’t they at least have bought him a stocking untilMom could knit one? Tears streamed down my cheeks. Bradwalked in, took one look at my face, and read my mind. “I thinkyou’d better look again,” he said. “It’s there, hanging behindApril’s stocking.”
I rushed back to the living room. And then I saw it—a beautifulhand-knit stocking inscribed with the name “C-H-A-R-LE-Y.” Knit by the same Mom who answered with the silent treatmentwhen I called to deliver the news of our special delivery.Knit by the same Mom whose friends phoned to caution usabout adopting a child like this.
A child like this.
Different? Yes.
Perfect? Absolutely.
Would she ever know how this moment would live forever aspart of me?
There was room in our family.
There was room in their hearts.There was a Christmas stocking for Charley.
Charley, 28 years old
Every year at Christmastime I repost this story. This adventure of Life With Charley began in 1990 when Charley was our Christmas present to ourselves.
I wrote my book "Life with Charley: a memoir of Down syndrome adoption" when Charley was 21. He is 28 now. The book is out of print right now, but I'm working on editing to reprint.
Until then, this is the first chapter...it’ll have to do ya...Thanks for reading! Blessings from us Palmers, warts and all. And remember, we are flawed, but God is not.
A Christmas Stocking for Charley
It was the best thing we ever did.It was the day the two of us became three. The day a blond-haired,ocean-blue-eyed, angel-faced, baby boy with Down syndrome
wiggled his way into our hearts. That’s the day he becamethe rest of our lives.We had been married for six years, during which headlinesincluded such historical events as the Space Shuttle Challengerdisaster, the release of Nelson Mandela after twenty-seven yearsin captivity, and the invasion of Kuwait by Iraqi troops, setting offthe Persian Gulf War.1Life Goes On was on primetime television,starring Chris Burke as Charles Thatcher, a teenager with Downsyndrome. And somewhere in Texas was a Desert Storm babyin a foster home. He was soon to be ours. We would name him“Charles” in honor of “Corky,” Chris Burke’s character.We couldn’t wait to call our folks. We’ve all been there. Youpump yourself up and blurt out the words, but the party on theother end of the phone isn’t sure they’ve heard you right.“Mom, Dad, we’re adopting a baby. Oh, and by the way, he’sgot Down syndrome.”
Silence.“Mom? You there? Say something.”Was it my imagination, or did Mom hang up on me? Well,maybe that is a bit of an exaggeration. She did, however, handthe phone to Dad.
Ring after ring, Mom’s friends called to deliver the bad news.“These kinds of babies require work,” they said, as though we’dbought the defective model and could still take him back tothe store.“All babies require work,” we said.“You sure about this?”“Yes, we’re sure.” I couldn’t help but chuckle while adding,“Tell Mom I said hi.” Some of these do-gooders chuckled too.“Team Mom” continued to call. Surely we would come to oursenses. Or not.Ring.“Do you have any idea what you are getting into?”And each time we answered, “No. No, no, for the last time,no.” For that matter, does anyone ever know? Does any child comewith an instruction manual? And if so, what would it say? Proceedwith caution? Open at your own risk?What did we know of Down syndrome? Not much.What did we get? More than we ever hoped for.Ring.“There are institutions for children with these types of disabilities,”one caller said.Somewhere between amusement and irritation, Brad and Igrinned at each other. “Thanks, but we’re keeping him.”
We lived in New Orleans. It’s a fun place to visit with the FrenchQuarter restaurants, its Muffulettas, its powdery sugar beignetpillows that melt into your taste buds, and its crawfish raging with fiery spices so lethal that your angry lips throb until dousedwith ice cubes. For the homegrown folk, it’s standard. But forthe occasional visitor not equipped with a cast iron stomach? It’sgood-bye happy tummy, hello Tums.
What is it they say about never, ever, say never? New Orleanswas my never-land. I never wanted to live there, so far away frommy folks. But then, I’m not the boss. I don’t get to say where welive, or for how long. I am, after all, married to a pastor, whichI said I’d never do either. Me? Marry some stuffed shirt of apreacher? Fat chance. No way, no how, no thanks.But I did. I married a cloth-man. Dad was just fine with that.He said, “Okay by me, won’t it be great to have someone in thefamily who can marry and bury us?”
We moved twice before we were destined for the great cityfamous for its Creole cuisine, its Mardi Gras parades, its BourbonStreet, and its drive-through daiquiris. How was I to know thevery place I said I’d never live would become my reason to live?My purpose? My call? How was I to know that this city they callThe Big Easy would manifest itself in a world of big blessings; aworld in the form of motherhood?
It is a twelve-hour drive from the Pelican State to the BluegrassCommonwealth of Kentucky, where our folks live. The onepromise Brad made when we married in 1985 was that if I wouldfollow him wherever his pastorate called, he would take mehome for Christmas. And he did every year. Whether it involveda twenty-hour drive from Oklahoma or the twelve-hour drivefrom Louisiana, we would be there for Christmas dinner with thefamily. This year would be no different. We would make it home,only we wouldn’t be driving. This year we would fly. And this timethere would be three of us. Not two.
I grew up in Louisville, home of what is known as the mostfamous two minutes in sports, in the same house where lovedones still gather for holidays, known to us as “8612.” It may looklarge from the outside, but the two-story red brick Dutch colonialis dwarfed by the combination of my mother’s Baldwin babygrand piano, my grandmother’s antique couch, and the monstrosityof a computer desk that shrinks the den—making it claustrophobicat best. But that doesn’t stop us from rubbing shouldersat the dinner table, squeezing into the matchbox quarters as Bradbows his head to give the blessing, and then swapping stories andlaughing until our cheeks hurt.
One of the highlights is gathering around the room and handingout the Christmas stockings, each of which has been handknitby Mom, complete with a fuzzy angora Santa beard and thename knit into the Kelly green, white, and rich red heirloom. It’sa unique gift, which she makes to welcome newcomers to thefamily, such as spouses and grandchildren. In our house, a newstocking is an initiation into the family. It says, “You are now oneof us.”It was only natural that I would long to see a stocking forCharley. He’d come into our lives just eleven days earlier at thetender age of two months.
I was thirty-six then. I’d struggled for years with endometriosis,eventually undergoing ovarian cyst surgery, which left mewith half an ovary. The doctor said I could still have children, butI wasn’t so sure. Uncontrollable bleeding was becoming a way oflife, so much so that the subject of children took a back seat to mymonthly visits to the emergency room. Not that we didn’t want afamily, but we weren’t in any rush. If it was supposed to happen,it would.The kind of job I had didn’t help either. I was working as aconsultant for a nursing home company, traveling to several different states and spending at least three nights each week awayfrom home when one day, out of nowhere, Brad said, “You needa baby.”“Is that so?” I said.“Just think about it, okay?”
Surely he was joking. Or was he? The anticipation in his eyespleaded otherwise. My God, I thought, he’s serious.To make matters worse, I was a minister’s wife. And thatmeant certain things. Babies. Toddlers. Casseroles. Sundayschool. Diapers. At least, I thought those were the expectations.By then we’d served three churches as a clergy couple. Onein Oklahoma, and two in Louisiana. First stop—Oklahoma, anda small white church three hours from Oklahoma City in themiddle of what I called “wilderness central,” twenty hours awayfrom loved ones. My first church as a pastor’s wife, and what didI know of that? Nothing. How could I? I’d tried on religions likemy sister tries on shoes.
As an infant, I was presented for baptism in the CatholicChurch, but grew up Episcopalian. Later, I returned to theCatholic Church while in college at Eastern Kentucky Universityso I could play my guitar during mass and withdrew when thepriest hurt my feelings one Ash Wednesday by denying me communion at the altar. The next day I walked into the Baptist StudentUnion, where I turned my life over to Jesus and was baptized forthe second time in my life, only this time it was a conscious decision.Over the next two years, I drove my family crazy trying toevangelize them every chance I got as if they didn’t already have achurch of their own. “Are you born again yet, sister?” I’d say. “Godwants you to give your life to Him, little brother!” I still believeit. God does want us.
I don’t remember how it came about, but during my sophomoreyear, I found myself spending time with a crowd that spokein tongues. I never did, though. Not that I dispute things like thatcan happen, but it wasn’t for me.On Thursday nights, I stood outside the local bar with mynewfound holy friends shaking my Bible at people passing by.“Jesus is the way!”“He’s your one-way ticket to heaven!” I still believe that too.
By the time I met Brad, I attended a small Christian churchin Lyndon, Kentucky. It was an active church with a young adultsingles group and I sang in the choir. Once again, I was baptized.Secretly, though, I was beginning to wonder how many times Ineeded to be dunked to prove my faith.Then Brad walked into my life. I was drawn to him instantly.With his quick wit and a booming laugh that drives my mothercrazy, Brad was anything but a stuffed shirt and unlike any ministerI’d known. And yet, he was everything a minister should be.As our pastor friend J. Pat Kennedy says, “Brad has a minister’sheart.” There’s little you could tell him that would shock him, andthere’s nothing you could tell him that would make him judgeyou. He is a God-man—but doesn’t beat you over the head withit. When I attend church I want to be challenged by the message,but I also want to hear that God loves me. I don’t want tobe yelled at from the pulpit. Or scolded. Or threatened. I knew inmy gut that Brad was the guy for me the first time I heard himpreach. Whether or not I was clergy spouse material remained tobe seen.
Maybe it was my imagination but didn’t all ministers’ wiveswear polyester jumpers and have a baby propped on one hip?At least, that was my perception. Well, not me, buster. “I don’thave time for a baby,” I said. My time was spoken for. I wasMrs. Church, Mrs. Potluck Casserole, Mrs. Preacher’s Wife,Mrs. Nursing Home Do-gooder, Mrs. Working Woman, Mrs.Busy-Busy-Much-Too-Busy.
“I don’t do kids,” I told him. There’s a word for people like me:coward. Thing is, kids scare me. Had I neglected to mention thatwhen the church moms asked me to teach Sunday school, and Isaid, “No, it isn’t my thing,” that it wasn’t my thing? I knew nothing about kids. And for good reason.
My babysitting days ended with a pot of boiling milk. I wassixteen, standing at the stove making hot chocolate for the threekids I was supposed to be watching, stirring the milk as it came toa rapid boil. And who was watching them? Don’t ask me, becausewhen I lifted the pan to pour the milk into a cup, one of the kidsran under my arm. There went the boiling milk, all over littlePammy’s head. From then on, I begged Mom and Dad for a loanwhen I had to, but never set foot in babysitting territory again.
I should have told the church moms that, but didn’t know how.What would I say? If you allow me to supervise your kids, we’ll see who can make it to the emergency room first? So, no. I had no intention of doing wee worship, or whatever they called it. To teachSunday school would be perfect-pastor’s-wife suicide, so I saidno. No. No. No, thank you, no. But church people have a way ofwearing you down, and I should have stuck with the word “no”instead of allowing them to beg until I caved and said, “I’d love to.”
The poor mothers. How were they to know I was telling a bigfat lie? I’ve never figured out how to contain a room full of squirming toddlers when one is threatening to eat glue, another is calling me “fatso,” and another is having diarrhea, all at the same time.
I did my time, though. For six months, I did the cliché. grinand-bear-it. No, I take that back. I grinned, and the tiny totsbared it (well, every time one of them escaped and ran aroundthe church without their Huggies). And what did this get me? Acommittee of young mothers (in the Presbyterian Church thereis a committee for everything) who felt the need to suggest (andnot so nicely) that if I intended to teach Sunday school (morelike toddler patrol), it might be a good idea if I would stop runningaround the room like a beheaded bird.
If I had to pinpoint when my preacher’s wife paranoia began,this was it. I don’t care if people talk about me behind my back.But when they say it to my face? That’s when it hurts my feelings.And say it they did. “You might look like your the one incharge.” Which brings me to my next point. Who said I wantedto be in charge?
I thought about this. Perhaps it’s my approach. Perhaps I shouldact a smidge more authoritative, so I plastered my face with thehappiest smile I could plaster, opened the door to the Sundayschool room, and announced, “Okay, kids (ankle biters), let’s trysomething new this morning. You will shut your little yippeeyaps, and you will mind me so I don’t look like an incompetentwingless wonder in front of your parents. Anyone attempting toleave this room will be caught. And we are all going to have fun.Do you understand me? Fun.”
A half an hour later the little half-pints were running throughthe sanctuary while I took little Susie to the bathroom, again.Before I knew it, the other mothers were assisting me in theSunday school class. From then on I was honest about my Sundayschool teaching disabilities, and when I said no, I meant it.My people-pleasing-at-church days were over, at least untilthe next time. For the time being, what they had was a made-from-scratch, non-cookie-cutter minister’s wife. Whatever weirdailment I had that made me desire kids was rattled out of me onSunday mornings. A miracle cure, that’s what it was. But just sothe parishioners would think I was anything resembling normal,I’d say, “I love kids.” If only I knew what to do with them.I never even knew I wanted a child. Or did I? Maybe I justdidn’t notice.
Brad, however, did. He noticed every time I walked out of theroom when a baby commercial came on TV, and by the gracefulway I declined invitations to baby showers. He noticed the way Isprinted past the baby clothes in stores, and how I barely held mynieces. He noticed when my lifelong soul sister, Barb, called todeliver the news that she was pregnant. “That’s great,” I said. “I’mso happy for you.” I swallowed the lump in my throat.“Barb’s going to be a great mom,” I said to Brad.“She sure will,” he said. “What about you?”“Don’t be ridiculous. I have all the babies I can handle.”“But you stopped teaching Sunday school two years ago.”“Drop it, Brad,” I said. And he did. Well, until I brought it upagain.“You’d think a person is only half a person unless she’s got ababy,” I told him once, after seeing a commercial for baby wipes.He cleared his throat and said, “Yeah, what about that.”
The next day, without my knowledge, he contacted an adoptionagency.
That fall we attended a Thanksgiving dinner with other familieswho had adopted special needs children. As I sat there wonderingwhat in the world I was doing at such an event, I lookedaround the room. It was packed with kids crawling, rolling, andrunning around all over the place. Mothers everywhere. Dads.Kids with squinty eyes. Downy fluff. Ambrosia with feet.The director of the agency had a ten-month-old. For somereason, I reached out and took her out of her mother’s arms, andthe strangest thing happened. It felt like a bolt of lightning wentright through me because the instant I touched her I rememberthinking, “This is what I am supposed to do.”
Imagine that. Me, a mom-to-be. Who knew? The Holy Spirit, that’s who. How do I know this? Because from that moment, everything fell into place.
One morning about a month later Brad and I found ourselvessitting across the desk from a social worker who explained thatif we planned on adopting a “normal” baby, it could take months,maybe even years.“Well, that’s it,” I said and picked up my purse. “No babies.Thanks for your time. Come on, Brad, let’s go.”I got about as far as the end of the couch in her office whenshe said, “Would you consider a baby with special needs?”Brad and I answered at the same time, “Yes.” We looked ateach other, surprised. Had we forgotten to talk about this?“What type of special needs would you be willing to take?”she asked.Again, we answered at the same time, “Down syndrome,” andthen our mouths dropped.
Two Tickets to Texas…
Another month passed. I was in a staff meeting when the speakerphonebuzzed, and then, the secretary’s voice. “There’s an emergencyphone call for Sherry.”
I braced myself, picked up the receiver, and gave a shaky,“He-ll-o.”Brad was on the other end. “Hi, Mom.”“Excuse me?”“I said, hi, Mom.”“Knock it off, Brad, I’m in a meeting.”“Congratulations,” he said. “You’re going to be a mother.”What the…“The adoption agency called and said there’s a baby availablein Texas. The only thing is, we have to tell them we want himtoday because if no one claims him the state is scheduled to takecustody of him tomorrow.”What was I supposed to say? “We’ll talk about this later overdinner?” I was at my company’s corporate office in Shreveport,and Brad was six hours away in New Orleans on the other endof the phone.“Sherry, are you there?”The faces of my coworkers and my bosses blurred into a seaof raised eyebrows, all waiting to know what the emergency was.“I don’t know, it seems so sudden,” I said, barely able to breathe.“What do you say, honey? This is our big chance.”“What do we know about him?” I asked.“Not much,” he said. “He’s two months old and has Downsyndrome. The agency says he’s been in a foster home since hewas born. His birth mother is a college student and has had noprenatal care. That’s about all I know.”
Thump, thump. My heart hammered the walls of my chest.I tried to swallow, but couldn’t.My face was wet. Was I crying? And in a business meeting?Everyone in the working world knows you don’t cry at work.Even if you are celebrating what should be a private momentbetween you and your husband.
What would it do to my career? I was all about work—suitsand low pumps, pantyhose designed to cut off the circulation tomy fat little thighs, briefcases, making it to the plane on time,jet-setting off to the next work assignment, and knocking myselfout to impress the boss. I’d come a long way from activity directorto corporate consultant. I had arrived, and I wasn’t about to giveit up now. I wasn’t the diaper bag, sterilized-bottle-toting type.Was I?
I sat plastered to the chair, everything around me suspended.The color must have deserted my face because someone sat acup of water in front of me and then I heard myself say, “Listenhere, you. I don’t make decisions that fast. You call that socialworker back right this minute and tell her we’ll take him.”I tipped the cup and sipped the water.My boss looked at me for a moment and then said, “Sherry,what’s wrong?”“Brace yourselves,” I said. “I’m sort of pregnant.”The room exploded. People were on their feet hugging me andasking, “So when are you due?”“As soon as we can fly to Texas and pick him up.”
And just like that, our destination became our destiny: ourbags got packed, and operation adoption was set in motion. Wewere about to meet the rest of our lives. The tiny human beingwho would permanently shape every thought, every decision, andevery minute of every day. Forevermore, we would look at theworld through a pair of crescent-moon-shaped eyes—the eyes ofDown syndrome.
We had chosen it. But why? Why would we want an infantwith DS? There’s a genetic test called amniocentesis to help parents avoid such things. Perhaps we were asking the wrong question.
Maybe the question wasn’t why, but why not? He was justa baby, not a birth defect. True, he was a baby with Down syndrome, but that wasn’t the issue. The fact was, we adopted because we wanted to be parents. Nothing more. No hidden agendas, no cause c.l.bre.
Where the problem presented was when others learned of hisDS. In those days he wasn’t considered “normal,” whatever normalis. Which begs the question: should any child be regardedas abnormal? Less perfect? Is that what it means to have Downsyndrome? And while we’re at it, what is normal? Does normalmean being a carbon copy of everyone else? And does being aclone mean you are worth more? More worthy of love?
Did we know that other kids would be afraid of him? Whisperabout him? Hide behind their mothers when he was around?Maybe not. Did we know that other mothers would cling to theirchildren, afraid it might be contagious? Probably not. Did weknow that we would put ourselves between him and ogling eyesto shield him from the gawking? Definitely not.
Since Brad and I both worked with people with Down syndromewhen we were younger, we thought we knew all we neededto know, which amounted to knowing a whole lot of nothing.We flew to Texas two weeks before Christmas. It was blindfaith that drove our rental car to the social worker’s office wherewe would meet our future. As Brad and I sat there clinging toeach other, we were filled with questions: Was he healthy? Whatwould he look like? What the heck were we doing?“What if I fail?” I said to Brad.“You’ll be a great mom.” Then Brad asked, “What if I fail?”“You’ll be an awesome dad,” I said, and just then the dooropened. In walked the social worker, holding a bundle.“Get ready for more love than you ever thought possible,” shesaid and handed him to me.I looked into the baby’s eyes, and I heard a voice say, “You’llhave to move out, you know.”What? I looked at Brad, but his lips weren’t moving. Great,now I’m hearing voices.
“You. Yes, you. Move out.”Move out of where?“Yourself. Get out of yourself so we can move in.”Who?“Me and the baby,” the voice said. “There’s no room for us—you are too full of you.”I looked at the baby. He blinked his eyes.
I blinked back.“Why me, Lord?”“Why not you?” He said.“You’re going to have to help me.”“I thought you’d never ask.”
Again, my heart beat. Thump. Thump.The baby studied me. Who was I? What was I? Why was Iholding him?Brad stuck out his finger so the baby could wrap his tiny handaround it. “He’s got quite a grip.”I cried and cried, and finally said, “Hi.”Later that same day, armed with a full diaper bag and babyformula, we flew back to New Orleans to begin our life as a newfamily. I eventually stopped crying and started smiling.I had a baby.Me. The girl who botched babysitting.I was a mother.Me. The girl who said she’d never be one of those polyesterpastors’ wives—part parishioner, part nursery attendant. The onewho was done with Sunday school forever and ever, amen.Me. A mom.
I was overjoyed. I was ecstatic. I was…gagging.“How could you?” I said as I sat in the middle of the floor ofthe ladies room at the airport. The restroom was crowded, butonly three people existed at that moment. Me and him. And thelady bending over me. “What an adorable baby,” she said, and atthat, I burst into tears. “Thank you, I think.”“Well, honey, what’s wrong?” she said.I didn’t dare let her catch my eye. “He’s stinky,” I said.“So?”“So, I’ve never changed a diaper before.”She stood back bewildered. “Are you his mother?”“Well, technically, yes.”“What do you mean, technically?” By now more than one personstood over me.
“I just got him today,” I said.“Today?”“About an hour ago,” I said and told her about our adoption.And God bless her, that woman sat down right next to me (inher dress, high heels, and all) and took me step by step throughhow to change a diaper. I could have just kissed her because I nolonger needed to kill myself. I begged her to please come homewith me for the next fifteen years, but unfortunately, she alreadyhad her own life.After I thanked her and she left, I looked at Charley and said,“You, my friend, are forbidden to ever mess your britches again.”That was the first time he smiled at me, and now that I thinkabout it, he seemed to flash a big silly grin every time I changedhis diapers from then on.
Three Tickets to Louisville…
The following week we took Charley home to meet his new family.From the initial home study in September to taking him homein December, we’d barely had time to process it ourselves, muchless expect anyone else to. How could they? It’s not as if they’dhad the traditional nine months to get excited about a new baby,and yet here we were, bringing him home for Christmas. We hadno idea how it would go. It’s not like our news was received without reserve. But, since things happen in God’s time (not mine), I would just have to trust that the same family who loves me wouldlove me enough to love him.
Brad and I knew we were asking a lot of our families. Weasked that they accept the fact that they would now have to saythings like, “My grandson has Down syndrome,” “My nephewhas DS,” and “My cousin has Down syndrome.”
Besides Brad and me, Joanna (Brad’s sister) was the only otherperson in our families to have associated with DS. And to myknowledge, no one had ever mentioned the word adoption, letalone special needs. And yet, despite my Mom’s phone callingcampaign trying to talk us out of it, we stood in line at the airport,flying higher than we thought possible, hoping that thingswould click. Praying that Mom would take one look at Charley and fall in love, like an overjoyed grandma. “Here, let me have him,” I heard her say in my self-talk. And in my mind, I pictured her setting the baby down on a freshly laundered towel to change a diaper and blowing raspberry kisses onto the bottoms of his vanillatootsie roll toes as the rest of the family looked on.
But when I opened my eyes, the questions were still there:Will they accept him? Will they love him? Was I asking toomuch? Praying enough? I would soon know the answer.8612 is a backdoor house. No one comes to the front doorunless you are delivering a package or are selling something.Family, friends, neighbors—we all enter through the kitchen, andwhen we do, we find everyone. It’s where you find the iced tea, theblue cheese ball, the munchies. Not that the space is big enough.It’s standing room only, along with the chaos of hugs and kissesas you move from person to person, yakking, helping yourself tothe snacks, yakking some more.
This Christmas visit was no different, except along with thehugs and kisses, there was one tiny tyke, looking up from his carrier from face to face. And the faces? Oh, boy, did they study him.“He’s a big boy,” Dad said.Marcy (my sister) reached out and played with his hand. “Hi,Charley.”Mom leaned in for a closer look. “Hi there.”Brad and I beamed. “Isn’t he perfect?”Marcy and Mom directed me upstairs to what would be ourroom while we were there. In the room was a crib with stuffedanimals. I swallowed hard. They did want him. I wondered whatbrought them to this moment. Was it their love for me? The resignation that there was a new family member, like it or not? Mayas well get on board? I drank in the details. Look at the work thatwent into all this. “Thanks,” I said, and they hugged me.
I headed back down the stairs and into the living room wherethe decorations sparkled with everything Christmas. SouthernLiving, that’s what it was. Collectible carolers in their CharlesDickens outfits warmed the china cabinet with garland and berries(Marcy is quite the decorator) and the table had our traditionalapple tree centerpiece (Mom makes one every year). Thehallway smiled with tinsel and lights, and there, sitting on thetop of the piano was the handmade porcelain nativity set thatMom bought when she was first married. But even with all thetrimmings, as lovely as they were, the display I wanted to seemore than anything was the mantel lined with the dog tags thatbelonged to our beloved boxer Max (they’ve hung there since hedied), and the stockings, hand-knit by Mom.
I felt a pit in my gut. I knew Mom hadn’t had time to makeone on such short notice, but still, I hoped. Please, God, let therebe a stocking for my baby. I braced myself and turned toward themantel. My heart sank. There they were—the stockings, hangingside by side, except for one.
Swallowing hard, I walked into the kitchen, dropped into achair, and wondered how I would make it through the Christmasholidays knowing Charley had no stocking. Why wasn’t it there?Was he that different? Was it because he was adopted? Because hehad DS? Couldn’t they at least have bought him a stocking untilMom could knit one? Tears streamed down my cheeks. Bradwalked in, took one look at my face, and read my mind. “I thinkyou’d better look again,” he said. “It’s there, hanging behindApril’s stocking.”
I rushed back to the living room. And then I saw it—a beautifulhand-knit stocking inscribed with the name “C-H-A-R-LE-Y.” Knit by the same Mom who answered with the silent treatmentwhen I called to deliver the news of our special delivery.Knit by the same Mom whose friends phoned to caution usabout adopting a child like this.
A child like this.
Different? Yes.
Perfect? Absolutely.
Would she ever know how this moment would live forever aspart of me?
There was room in our family.
There was room in their hearts.There was a Christmas stocking for Charley.
Charley, 28 years oldJuly 24, 2017
Trevor, The ���Spokes��� Man
For the longest time, Charley has been bugging. Yes, "bugging" us to get him a bike. Like every five minutes.
It started around Christmastime.
"Mom, I want bicycalt," he'd say.
"It's winter. No one rides in the winter," I'd say.
"Oh, I do."
I'd open the blinds. "In the snow?"
"Yup."
"Not happening," I'd say, and he���d stomp up the stairs. I could hear him telling his things in his room, ���Mom said no.���
Then spring came along. Enough time to forget about the bike. Thank you, Lord. Or was it? Every time we passed a bike in a driveway. Every time a bicycler passed us on the road. He'd point. "I me one." (Charley may have speech challenges, but never fails to communicate.) And I do mean, every. single. time.
"Mom, member, I want bicycalt," he said one morning. Thanks a lot, Lord.
"Maybe someday," I said. But probably not. Again, he���d stomp. His toys heard it all. ���Mom said no. Again.���
Did Charley know how much these things cost?Not that we wouldn't spend the money on him, but the last time we bought him a bike his foot got stuck in one of the spokes. He fell off, kicked it, and said, "It no work."
He never got back on.
I reminded him of that. "Charley, we can't just go buy you a bike. Everybody knows you're supposed to get right back on the horse."
He looked around. "What horse?"
"It's a figure of speech, Son. It means when you fall off the bike you have to get right back on. You can't just give up."
He nodded his head. "Pleeeeaaaassseee. I promise."
"We can't just go buy it. We have to save up."
"Woohoo!" His enthusiasm was contagious. So much so that I found myself at Dick's Sporting Goods looking at the bikes.
A sales associate approached me. "May I help you?"
"Yes, I'm looking for a bike."
"Who's it for?" she asked.
"My son."
"These are the girls' bikes," she said.
She was right. I was standing there looking at the girls' bikes. "Think one of these would fit me?" I asked.
"Sure, hop on," she said and held the bike. Steady now. Just hop on the bike. A little jump. There you go.
"Go ahead," she said. "Just a small hoist."
She'd obviously not noticed the size of my rear end. "There's no such thing as a small hoist," I said. She tried not to smile, but I saw the curves of her lips.
"I'm trying to see if I can get a bike to keep up with my son. He just got a three-wheeler."
"Yes Ma'am."
"Honest, I really want to do this."
"Yes Ma'am."
"I'm a little challenged. You see, I shattered my femur a few years back, and..."
"Yes Ma'am."
I had one leg over the seat (well, partially). And one leg still on the ground.
"I'll hold the bike, don't worry," she said.
"Don't let me fall." The bike wobbled.
Any minute now...
She looked at her watch.
"Lunch time?" I asked. Please say yes. Please say yes.
"Um, yes Ma'am." Would you stop calling me Ma'am? What do you think I am, 95? No wonder I can't get my rear end up onto this stupid thing.
Need I tell you I came home without the bike? And worse, I came home without even getting on the bike.
Charley met me at the door.
"Mom, where were you?"
"Nowhere."
"You got my bicycalt yet?"
"Maybe sometime, but not today." Epic F in athletic parenting 101.
Later that week I told my sister about it. "Marcy, I'm thinking about getting a bike. I saw one on the yard sale site."
I studied her face across the FaceTime screen.
"If I promise not to get one will you stop laughing?"
Every day Charley followed me around. "I promise. I promise."
What was he promising? I have no idea. That he wouldn't kick the bike? That he���d keep his foot out of the spokes? That he wouldn't abandon the attempt to learn?
As luck would have it, he stopped asking. Problem solved.
This ranks right up there with; how dumb I can be?
How long has he been my son? How long have I lived with that 21st chromosome? The one that operates like a diehard battery? Going on twenty-seven years now? Silence means one thing; he's concocting some plan to make me cave.
Just when I thought that subject was a done deal, there was a knock on the door. It was the neighbors, asking if Charley wanted to come across the street and play basketball. Thank you Lord. New friends. It'll take his mind off the bike.
"Charley's going to play basketball with Amanda, Shane, and the girls," I told Brad.
A few minutes later I looked out the window and what do you think I saw? My adult son on the little girls' tricycle. And there, right beside him, were the neighbors. Walking down the street with my son as he attempted to peddle a bike meant for a four-year-old. Needless to say, it was a little top heavy.
We have great neighbors!"We gotta get him a bike," I told Brad and posted a picture of him on that tricycle. In my post, I asked if anyone knew where we could get an adult tricycle. A half-hearted attempt at best.
That���s me, the one hiding in the computer. Mother of the year. I'd done my part. At least I tried, didn't I? At least we wouldn't be chasing him around on some bike. I stand accused of being a little overprotective. Ok, not a little. A lot. Point taken.
The next day rolled around. "Mom, you got my bike yet?" His face lit up with anticipation.
He had that same look on his face that he had when he was determined to take his friend Jordan to the prom. I told him it probably wouldn't happen. Still, he insisted. "Oh yes I are," he said. Little did I know that it was Jordan who invited him, not the other way around. The next thing I knew, he was in a tux. The man doesn't give up. EVER.
"No, Charley, I didn't get a bike yet. Let's talk about it later, ok?"
His scrunched grin wilted. "My friend got bicycalt," he said, his voice dropping a few decimals, referring to the neighbors and their pigmy-sized little three-wheeler, like, geez, Mom and Dad, you guys just don't get it.
"Forget about it, Son. Now I have spoken. Drop it. It���s not happening." Lord, he's wearing me out.
That settled it. We needed to get him a bike. But how? How do we do the impossible?
I sat down in my recliner and flipped open my iPad. Time to look at the newsfeed. To see what was what. And what do you think I saw?
A message from our friend Jackie at church, who said her friend Trevor saw my post and wanted to give Charley a bike.
Could this be? Someone, would do this for our son? Someone, he didn't even know? Someone we���d never met?
Now. Before I go any further, I must tell you; it wasn't the only offer. Our friend Tina from Knoxville saw the post too. Two offers of getting a bike for Charley. I nearly fell out of my chair. People are so generous. There's a reason I walk around with a lump in my throat.
Before I knew it, Trevor made a house call. Accompanied by his Mom and Dad, and an adult sized tricycle in the back of a truck.
Our new friends, Trevor, Tim, and Mary GrossCharley had no idea. It was Trevor's surprise. And it was not just any bike, It was his bike. He'd learned to ride a two-wheeler, and told his Mom about Charley.
Without a thought for himself, or seeking recognition. Just a simple gesture. At least, that���s what he thought. But it was so much more than that.
Every day Charley runs downstairs and says, "I go on my bicycalt?" And every day, he peddles his way around the neighborhood. And then again. And again. And just like that, Charley has gone from a man on a little trike to a big tyke on a bike. A big deal on wheels.
Yesterday during my husband's sermon he was talking about Ecclesia, which means "to go out."
"That is what we are called to do as a church," he said. "To go out. Not to keep to ourselves in a building, but to take the church out of the building."
As I sat there listening to him, I thought about Ecclesia and the people I've known over the years who know how to go out. Those who take meals to shut-ins, and communion to those who cannot come to the church. Those who make home repairs for the elderly, and visit the sick in the hospital. There are a lot of ways to practice Ecclesia.
Sometimes it directly benefits the church, and sometimes it's just a gesture. It's church. It's what you do. Any way you look at it, to practice Ecclesia is to do what God asks us to do.
A minister can stand in a pulpit all day long, but taking it to the people? That's Ecclesia.
Something else I thought of yesterday. And oh boy, I couldn't get it out of my mind.
I thought of Trevor. And how he said Jesus had put it on his heart to give his bike to Charley.
How is it that we���ve been a clergy family for as long as I can remember, and yet along comes a young man with an extra chromosome who seems to nail this thing called Ecclesia? This knowing how to go out. This sharing about Jesus in his heart. This ���Spokes���man, who���s gospel message rides its way into our hearts?
I usually write about Charley. But this is Trevor's story. It's about a young man with an extra chromosome. The world refers to it as Down syndrome.
I refer to it as heart. An extra heart, if you will.
It takes heart to reach out to someone you don't know. To see a need and fill it. To take something you value and offer it to someone else. To get pleasure from making others happy. To expect nothing in return. No ulterior motives.
In a world that seems to concern itself with me-isms, boasting, and upping one another, it's good to know there's a Trevor in the house. A Trevor with a heart bigger than the love of self. A heart that's worth writing about.
A heart that reached out and into the heart of another special needs young man.
Trevor, your Ecclesia is showing!
I've always said, "Don't underestimate that extra chromosome. The one that makes Down syndrome such a mystery. It often surprises in ways we least expect."
On second thought, forget about the extra chromosome. Trevor has enough heart for the rest of us.
Charley and TrevorTrevor, The “Spokes” Man
For the longest time, Charley has been bugging. Yes, "bugging" us to get him a bike. Like every five minutes.
It started around Christmastime.
"Mom, I want bicycalt," he'd say.
"It's winter. No one rides in the winter," I'd say.
"Oh, I do."
I'd open the blinds. "In the snow?"
"Yup."
"Not happening," I'd say, and he’d stomp up the stairs. I could hear him telling his things in his room, “Mom said no.”
Then spring came along. Enough time to forget about the bike. Thank you, Lord. Or was it? Every time we passed a bike in a driveway. Every time a bicycler passed us on the road. He'd point. "I me one." And I do mean, every. single. time.
"Mom, member, I want bicycalt," he said one morning. Thanks a lot, Lord.
"Maybe someday," I said. But probably not. Again, he’d stomp. His toys heard it all. “Mom said no. Again.”
Did Charley know how much these things cost?Not that we wouldn't spend the money on him, but the last time we bought him a bike his foot got stuck in one of the spokes. He fell off, kicked it, and said, "It no work."
He never got back on.
I reminded him of that. "Charley, we can't just go buy you a bike. Everybody knows you're supposed to get right back on the horse."
He looked around. "What horse?"
"It's a figure of speech, Son. It means when you fall off the bike you have to get right back on. You can't just give up."
He nodded his head. "Pleeeeaaaassseee. I promise."
"We can't just go buy it. We have to save up."
"Woohoo!" His enthusiasm was contagious. So much so that I found myself at Dick's Sporting Goods looking at the bikes.
A sales associate approached me. "May I help you?"
"Yes, I'm looking for a bike."
"Who's it for?" she asked.
"My son."
"These are the girls' bikes," she said.
She was right. I was standing there looking at the girls' bikes. "Think one of these would fit me?" I asked.
"Sure, hop on," she said and held the bike. Steady now. Just hop on the bike. A little jump. There you go.
"Go ahead," she said. "Just a small hoist."
She'd obviously not noticed the size of my rear end. "There's no such thing as a small hoist," I said. She tried not to smile, but I saw the curves of her lips.
"I'm trying to see if I can get a bike to keep up with my son. He just got a three-wheeler."
"Yes Ma'am."
"Honest, I really want to do this."
"Yes Ma'am."
I had one leg over the seat (well, partially). And one leg still on the ground.
"I'll hold the bike, don't worry," she said.
"Don't let me fall." The bike wobbled.
Any minute now...
She looked at her watch.
"Lunch time?" I asked. Please say yes. Please say yes.
"Um, yes Ma'am." Would you stop calling me Ma'am? No wonder I can't hoist my rear end up onto this stupid thing.
Need I tell you I came home without the bike? And worse, I came home without even getting on the bike.
Charley met me at the door.
"Mom, where were you?"
"Nowhere."
"You got my bicycalt yet?"
"Maybe sometime, but not today." Epic F in athletic parenting 101.
Later that week I told my sister about it. "Marcy, I'm thinking about getting a bike. I saw one for sale on the yard sale site."
I studied her face across the FaceTime screen.
"If I promise not to get one will you stop laughing?"
Every day he followed me around. "I promise. I promise."
What was he promising? I have no idea. That he wouldn't kick the bike? That he’d keep his foot out of the spokes? That he wouldn't abandon the attempt to learn?
As luck would have it, he stopped asking. Problem solved.
This ranks right up there with; how dumb I can be?
How long has he been my son? How long have I lived with that 21st chromosome? The one that operates like a diehard battery? Going on twenty-seven years now? Silence means one thing; he's concocting some plan to break me. Or, at least to get me to cave.
Just when I thought that subject was a done deal, there was a knock on the door. It was the neighbors, asking if Charley wanted to come across the street and play basketball. Thank you Lord, I thought. New friends. It'll take his mind off the bike.
"Charley's going to play basketball with Amanda, Shane, and the girls," I told Brad.
A few minutes later I looked out the window and what do you think I saw? My adult son on the little girls' tricycle. And there, right beside him, were the neighbors. Walking down the street with my son as he attempted to peddle a bike meant for a four-year-old. Needless to say, it was a little top heavy.
We have great neighbors!"We gotta get him a bike," I told Brad and posted a picture of him on that tricycle. In my post, I asked if anyone knew where we could get an adult tricycle. A half-hearted attempt at best.
That’s me, the one hiding in the computer. Mother of the year. I'd done my part. At least I tried, didn't I? At least we wouldn't be chasing him around on some bike. I stand accused of being a little overprotective. Ok, not a little. A lot. Point taken.
The next day rolled around. "Mom, you got my bike yet?" His face lit up with anticipation.
He had that same look on his face that he had when he was determined to take his friend Jordan to the prom. I told him it probably wouldn't happen. Still, he insisted. "Oh yes I are," he said. Little did I know that it was Jordan who invited him, not the other way around. The next thing I knew, he was in a tux. The man doesn't give up. EVER.
"No, Charley, I didn't get a bike yet. Let's talk about it later, ok?"
His scrunched grin wilted. "My friend got bicycalt," he said, his voice dropping a few decimals, referring to the neighbors and their pigmy-sized little three-wheeler, like, geez, Mom and Dad, you guys just don't get it.
"Forget about it, Son. Now I have spoken. Drop it. It’s not happening." MY LORD, he was wearing me out.
That settled it. We needed to get him a bike. But how?
I sat down in my recliner and flipped open my iPad. Time to look at the newsfeed. To see what was what. And what do you think I saw?
A message from our friend Jackie at church, who said her friend Trevor wanted to give Charley a bike.
Could this be? Someone, would do this for our son? Someone he didn't even know? Someone we’d never met?
Now. Before I go any further, I must tell you; it wasn't the only offer. Our friend Tina from Knoxville saw the post too. Two offers of getting a bike for Charley. I nearly fell out of my chair. People are so generous. There's a reason I walk around with a lump in my throat.
Before I knew it, Trevor made a house call. Accompanied by his Mom and Dad, and an adult sized tricycle in the back of a truck.
Our new friends, Trevor, Tim, and Mary GrossCharley had no idea. It was Trevor's surprise. And it was not just any bike, but his bike. He'd learned to ride a two-wheeler, and told his Mom he wanted to give his bike to Charley.
Without a thought for himself, or seeking recognition. Just a simple gesture. At least, that’s what he thought. But it was so much more than that.
Every day Charley runs downstairs and says, "I go on my bicycalt?" And every day, he peddles his way around the neighborhood. And then again. And again. And just like that, Charley has gone from a man on a little trike to a big tyke on a bike. A big deal on wheels.
Yesterday during my husband's sermon he was talking about Ecclesia, which means "to go out."
"That is what we are called to do as a church," he said. "To go out. Not to keep to ourselves in a building, but to take the church out of the building."
As I sat there listening to him, I thought about Ecclesia and the people I've known over the years who know how to go out. Those who take meals to shut-ins, and communion to those who cannot come to the church. Those who make home repairs for the elderly, and visit the sick in the hospital. There are a lot of ways to practice Ecclesia.
Sometimes it directly benefits the church, and sometimes it's just a gesture. It's church. It's what you do. Any way you look at it, to practice Ecclesia is to do what God asks us to do.
Ecclesia is "showing."
A minister can stand in a pulpit all day long, but taking it to the people? That's Ecclesia.
Something else I thought of yesterday. And oh boy, I couldn't get it out of my mind.
I thought of Trevor. And how he said Jesus had put it on his heart to give his bike to Charley.
How is it that we’ve been a clergy family for as long as I can remember, and yet along comes a young man with an extra chromosome who seems to nail this thing called Ecclesia? This knowing how to go out. This sharing about Jesus in his heart. This “spokes”man, who’s gospel message rides its way into our hearts?
I usually write about Charley. But this is Trevor's story. It's about a young man with an extra chromosome. The world refers to it as Down syndrome.
I refer to it as heart. An extra heart, if you will.
It takes heart to reach out to someone you don't know. To see a need and fill it. To take something you value and offer it to someone else. To get pleasure from making others happy. To expect nothing in return. No ulterior motives.
In a world that seems to concern itself with me-isms, boasting, and upping one another, it's good to know there's a Trevor in the house. A Trevor with a heart bigger than the love of self. A heart that's worth writing about.
A heart that made it possible for my Charley to ride right off the page.
Trevor, your Ecclesia is showing!
Forget about the extra chromosome. Trevor has enough heart for the rest of us.
Charley and TrevorApril 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 pillow ( I 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.
August 11, 2016
Many, many thanks to "Where Hope Grows" for sharing this ...
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'tIn 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:Where Hope Grows
and here: Where Hope Grows
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
How My Son with Down Syndrome Fixed a Hotel Problem I couldn'tIn 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:Where Hope Grows
and here: Where Hope Grows
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
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!
One of these days I hope Charley and I can meet Rob. His book will tickle your funny bone! Enjoy!
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."
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!
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!
