Charlie's Wish: A Fair At Christmas Time

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December 2017 Christmas Dreams Story Contest Entry

I spent a fair while about two weeks ago looking through websites to see if there were any fairs taking place in the US around Christmas time.

There were none, the latest I could find all ended around mid-November, so this story and the people and some places in it are pure fiction.

**********

Ahhh... so you're the one that I'm supposed to have on hand to record everything as I tell Charlie's story? Well, thank you, ma'am.

My name is Rebecca Jennifer Derricks. Thank you again for meeting me here.

First, I need to tell you about myself and my family. It may or may not clarify some things about our daily lives.

Well, to be blunt, I wasn't born as the girl you see in front of you, Miss Petterick.

No, I was born as Robert Jameson Derricks, Jr. at University of Texas Southwestern Medical Center at 4:23 AM on September 5, 1994. I was a fairly normal looking male baby, I suppose. I weighed 8 pounds, 7.5 ounces and was 20.5 inches long at the time of my birth.

I knew that I was different when I was four or five years old, I can't recall the exact date, but it was winter time, so I guess I was four. Huh.

It wasn't easy living with the knowledge that I wasn't the same as other boys, including my five younger brothers. To this day, I'm not entirely sure as to how I managed to live from one day to the next. As soon as I finished high school, I left home, heading for college in Austin.

I worked my butt off in every class, earning a master's degree in business administration in just five years.

I took the first step in my transition a few months after I started college. I spoke to a counsellor, then to a psych every two weeks for the entire time I was in school there. About six months after I first started seeing Dr. Sheela Scofield, she put me on blockers and estrogen.

By the time I finished my degree and left Austin to return to the family home, I looked like I do now, 5'10", about 150 pounds, blue eyes, waist length sandy blonde hair that I've been growing since I went to college. I had a strong resolve to stand up to my family no matter what.

I have to say that it went better than I had hoped. My dad wasn't too happy about it, but I wasn't very surprised at that, he was raised by his father to be a man's man. My five brothers look a lot like dad in old family photos, big, tall, rugged men, they fit the tough western image.

I was figuring that my brothers would react like dad, but this is where I got the shock of my life.

You see, Theodore, the brother next to me in age, took some psych classes in his first two years of college that woke him up to reality. He brought that knowledge back to the farm, and apparently spent a lot of time talking to the other four boys, who seemingly all saw the light.

I was wrapped in brief hugs from all five brothers, then darn near crushed by my mom and three sisters when they hugged me. I actually was knocked over at that point. I landed on the hardwood floor of the living room, with my sisters and mom all on top of me, giggling away.

The fun wasn't over quite yet, though. Gramps picked that moment to walk into the house through the back door.

Now Gramps is a whole different kettle of fish. You remember my comment about a man being a man's man? Well, that's Gramps for ya.

Gramps had just turned 25 when the Japanese attacked Pearl Harbor on December 7, 1941, which brought America into World War II. He had been born in the fall of 1916, while World War I was talking place and grew up with the rough conditions of life in war time.

His father went off to the trenches in the summer of 1916, well before the US entered that war, by signing on with a Canadian regiment. He fought in several of the major battles from late 1916 through to the summer of 1918 when he was killed at the Battle of Amiens.

Well, that tells you that Gramps grew up without a father. His mother never remarried, her heart having broken when her husband died. There were plenty of men that were interested in his mother, Gramps has told us many times, but she had no interest in them at all.

Life was rough in the south after World War 1 ended. Rationing was still in place for some time after the war, she managed to get the basics like everyone else, but with just herself, Gramps and his two brothers and one sister, it was hard to get enough to feed them all sometimes.

Tuberculosis took one of Gramps' brothers in 1927, he'd been ill off and on for several years.

A small outbreak of scarlet fever came through our area a year after that, apparently brought to us via Chinese folks arriving in Galveston. Gramps' sister died during that outbreak, leaving just his mother, one brother and Gramps himself to run the 15,000 acre farm.

Those three managed to keep going through sheer hard work, even as large parts of the US became veritable dust bowls.

Then the Japanese hit Pearl Harbor, and like his father, Gramps entered the military in early January of 1942 after settling things at home. His mother and his last remaining brother, Francis, would take care of the farm while he was gone. He agreed and was on his way.

To this day, Gramps doesn't talk much about his experiences on the battlefronts of World War II. He was deployed to a unit that was fighting in the Western Front. We do know that he was at Dieppe in August of 1942, then wandered around much of Western and Northern Europe until May of 1944, when his unit was sent back to the western shores of France in preparation for what would be the Battle of Normandy.

He fought in several of the battles with his unit, many of those being in support of the troops coming onshore and then working their way into France, step by gruelling, deadly step. Once the Normandy offensive had ended, he found himself at the liberation of Paris.

Slowly but surely, the Allied troops pushed east; Gramps' unit was sent to the Lorraine area to assist there after Paris was freed. The push into Germany itself started not too long after that, and Gramps ended up in many of the battles there as the war came to a close.

He had done his job well enough over the last three years or so that he had been made a brevet captain. It gave him a few extra benefits, but his pay and everything else was still tied to his actual rank of first lieutenant. His commander kept him there until after the Nuremberg trials.

He finally arrived home just before Christmas in 1946. He had been in the army for just under five years.

He was astonished to find that his mother had become a gaunt, withered wisp of a woman over the years that he had been gone. He didn't ask her any questions, and she returned the favour, but to see his mother having aged so much so fast made him very, very worried.

He did what he could for her, but it didn't seem to have any effect. She passed away early on April 2, 1947, she was just 52 years old.

Well, Gramps settled down and helped his brother; in the process, he found a lovely woman while on a trip to a veterans' dance in Dallas.

Gramps and the woman who would be Gram to all of us dated for most of that year, then celebrated their marriage on Christmas Eve. Eight months later, my aunt Jessica was born, followed by Robert, Patrick, Elisabeth, Jonathan, Bartholomew, Albert, Patricia and Salomon.

Gramps' brother Francis had been busy while Gramps was in Europe doing his army service. By the time Gramps returned, he already had four kids through his wife Janet, and they added seven more over the next ten years before Janet had a serious health issue come up, specifically gestational hypertension, and was told quite firmly by the doctors involved that any more pregnancies would seriously harm or kill her.

She still wanted more kids, but by that time, she had her eleven and Gramps and his wife Bethany had had seven, with two still to come.

My other grandparents had both been single children, and children of single children, so large families were not something they knew. Not that it mattered much by the time I came around, Grampa and Grams had been gone for almost ten years thanks to a drunk driver.

They had had only three kids, Amber, Belinda and Christine. Amber married two years after she finished college, Belinda never married as she was adamantly lesbian which caused lots of hassles for her, and Christine died at fourteen due to undiagnosed breast cancer.

My dad was Robert, Gramps' oldest son, so technically, I was Robert, Jr., but I hated being identified that way, especially with my issues.

That big family thing continued when the kids from both sides of the family grew up.

Jessica had seven kids, dad and mom had nine of us, three girls and six boys, Pat had ten kids, Elisabeth had eight, Jonathan had ten, Bart had eleven, Al had seven, Patti had nine and Salomon blew the rest of them out of the water, ending up with thirteen kids in his house.

You see, Sal and his wife Angelina had difficulties with their initial efforts to have kids. After three years of nothing working in that effort, the two of them decided to adopt instead, and a few months later, a set of twins came up for adoption. Sal and Angel took James and Jeff home.

Well, something happened then, I guess, as just over three weeks later, Angel started to get sick in the mornings. Over the next ten years, Angel gave birth to eleven children, Paul, Janet, Elaine, William, Steven, Samantha, Richard, Olivia, Phillip, Annette and Jasmine.

Janet and Elaine are mirror image identical twins, with Janet being left handed and Elaine right handed.

Richard and Olivia are also twins, as are Annette and Jasmine, although the last two are unusual in the sense that they were born on the same night to the same mother, but they actually came from two different events that occurred within several hours of each other.

The first had been a lovely afternoon Sal and Angel had enjoyed, the second had occurred later that night when a man slipped rohypnol into a drink Angel had without it being noticed, then dragged her off when Sal had to use the facilities a bit later. Sal hadn't noticed anything because he was rather busy talking to another farm owner about crop issues at the time. Sal came back out to find that his wife had disappeared.

Angel was eventually found, still with the other male. Sal was initially beyond furious with her, thinking she had cheated on him, but when he learned that the guy had dosed her with rohypnol and then hauled her out of the bar, he was ready to kill the man with his bare hands.

Sal didn't do anything because he couldn't get to the bastard, thanks to the police having put the guy in a cell in the station lock-up area.

Jasmine's features show that Sal is her father. Annette looks a bit like Angel, but several inches shorter, making her the shortest in the family.

Amber, the eldest of Grampa Felix's kids, added eight more kids to the horde, five girls and three boys over an eleven year period.

We're a big family, especially from Gramps' side of things, he had nine kids, they went nuts and had 84 kids between the nine of them. Yep, I have lots and lots of cousins, every one of them living within fifty miles or so of the home ranch, which became dad's fifteen years ago.

Add in the cousins from Aunt Amber, and that bumps the total up to 92 kids. Like I said earlier, a veritable horde.

So... Gramps took one look at me, then said, "I wondered when you would sort yourself out. Hello, girl." That threw me for a loop, like OMG!

Remember Gramps has always been a man's man, so him actually accepting me as I am now was a shock that had me crying right away.

Well, the last male in my direct family was Charlie, who turned fourteen just before school ended for the year.

Now it's time to get to the real story, which is what happened to Charlie that summer and how I gave him his Christmas wish.

**********

Ahem. Right, like I said a minute or two ago, Charlie is my youngest brother, he's fourteen years old and rather active, he loves sports.

Everything was fine until early August, when Charlie stumbled and slipped, falling into a low stone wall in the process. He broke his left wrist trying to stop himself from falling, then twisted and broke his right femur in two places. He started screaming at the top of his lungs.

Charlie had been heading to a nearby open area where the boys often played various sports, that day was to be a baseball game. Eleven other boys were with him, eight of them various cousins around his own age or close to it, the other three were friends the cousins had met.

One of them raced back to the farm to tell mom and dad that Charlie was hurt. Another pulled out a cell phone and called for an ambulance.

The ambulance arrived about ten minutes later, just after mom and dad showed up on the scene.

Charlie was still screaming, it took mom hugging him for several minutes before he stopped, then he started whining about the pain. She kept hugging him until the paramedics pulled the stretcher out of the ambulance. She let them pick him up, strap him in and leave.

The paramedics had said that they would be taking him to Texas Health emergency in DeSoto, a suburb of Dallas.

Mom and dad, along with Theo and Peter, two of my other brothers, followed the ambulance into the city, then parked in the visitor area.

At the time, I was helping Francis, Gramps' brother, on his farm, he was rounding up 5,000 cattle for a buyer in New Mexico.

Mom, dad, Theo and Peter sat in the waiting room of the emergency area for nearly six hours, waiting for a report from the doctors.

During that time, after putting a cast on his wrist and leg, they did all kinds of tests on Charlie, blood tests, urine, ECG, EKG, EEG, X-rays, EMG, MRI, CAT, PET, the works. Poor Charlie was pretty much being hauled from one test to another through that whole time period.

When the doctor who first saw Charlie did come out, she wasn't alone. There were five other doctors with her, all wearing serious expressions.

Dr. Bellamy was the first to speak. "We've treated the injuries, they should heal reasonably well in about six weeks or so."

Dr. Frankel took over at that point, "We ran a lot of tests to cover all the bases, as what happened to young Charlie seemed rather odd. By the report we received a few hours ago from one of the witnesses, one Victor Carvalle, he apparently twisted his foot taking a step and fell."

"Victor happens to be one of Charlie's cousins through his Aunt Amber, she married Roberto Carvalle oh, sixteen years ago," mom stated.

Dr. Frankel nodded as another doctor, this one identified as Dr. Williams, spoke up, "Well, we just got the test results back, and we noticed several anomalies. Investigating further, we soon discovered that Charlie has muscular dystrophy, specifically Emery-Dreifuss MD."

Another one, her tag identifying her as Dr. Passafilo, added, "To be even more specific, there is some minor cardiac involvement. As long as he doesn't try to physically do things like pick up heavy items or push or pull stuff, he should be okay. That doesn't mean he can't have fun."

A fifth doctor, Dr. Sandhurst, put in his two cents, "We've also noted strong signs of muscle contractures in Charlie's ankles and wrists."

The last doctor added, "Normally, the contractures progress slowly, but Charlie's are already quite extensive, this is not a new problem."

Theo sat there for a minute with a thoughtful expression, then said, "You know, I've seen Charlie's hands do the claw thing now and then."

Mom nodded, as did Pete. Both said that they had seen him do that occasionally, not realizing it was a sign of the illness just diagnosed here.

Dr. Frankel spoke again, "From what we can see, the MD is progressing fairly fast. We think he'll be in a wheelchair within eighteen months."

Dr. Sandhurst sighed, saying, "That's a conservative estimate. If things keep going as they are, it could be fifteen months or less."

Theo shook his head, muttered something that no one else managed to hear, then asked, "One last Christmas that he can walk, then?"

Dr. Williams nodded, frowning as he replied, "Unless he gets rather lucky and it slows down, yes, this would be his last walking Christmas."

**********

Charlie came home two days later, with a foldable wheelchair that he was supposed to use to get around everywhere. Considering that his bedroom was in the fourth floor loft area of the big farmhouse, he was going to have fun going up and down the stairs all the time.

Charlie was supposed to stay off his feet for the first week. He looked at the stairs and flinched, nineteen steps from the entry hall up to the second floor, fourteen more to get to the main section of the third floor, and then twelve steps leading up into the loft area.

Peter saw him flinch and asked him what was wrong. When Charlie explained it, Peter shrugged, picked him up and carried him up to the loft.

Well, that was about the way of it for the first ten days that Charlie was home. If he needed to go up to the loft or to be brought down from there to do anything, Theo, Pete, John or Will would carry him up or down. None of them would accept anything beyond a simple thank you.

Dr. Bellamy sent Dr. Frankel down to give Charlie a check-up before they would allow him to move around on his own. He was deemed to be fine, and was firmly told to stay off the right leg and to accept help if he needed it to walk up and down stairs here and elsewhere.

Dr. Frankel left, having handed Charlie a pair of crutches for use in the house, and life went on.

It wasn't easy to watch as Charlie wandered around the house on the crutches, then out into the yard, then into the fields. Wherever he went, there was always at least one or two of us watching to make sure he was okay and that we could help him fast if something happened.

It was weird and kid of sad to watch Charlie change. We could all see that he was having difficulty walking from time to time. That slowly progressed to where he was stumbling more and more often, then to the point where arm braces with canes were purchased for him.

He went back to school in September, grade nine actually. He didn't have much trouble with the classes, it was the getting to and from classes that gave him the biggest hassle. Once the news that he had Emery-Dreifuss got around, though, just about everyone wanted to help.

By the end of October, he was using the arm braces and canes almost constantly. It shocked us all as to how fast it was progressing.

The cast on his wrist had been removed on September 28th, the one on his leg stayed on until October 11th. Over the time since the injuries had happened, he had been examined every two weeks in a clinic in the nearest town to us, which was Red Oak.

It was around this time that I overheard Charlie muttering one afternoon. He said, "I want to go to a big fair before I end up in a wheelchair."

The tests had all come back showing that the breaks were healing well, but the contractures were becoming worse as time passed.

There wasn't anything that we could do about that issue, other than to keep an eye on Charlie and help him out if he needed it.

By the time that the end of November rolled around and the whole clan showed up for Thanksgiving, Charlie was showing the strain of trying to cope with a condition that seemed to have a mind of its own and was completely out of his control. He cried a lot, quite a lot.

It was around this time that I came up with the plan to give him a Christmas to remember.

Well, I brought up my idea; actually, the idea came out of that idle comment Charlie had made several weeks before, but then it went off like a proverbial rocket, and within a couple of days, the whole family was in on it. Money poured in from all sides, nearly $4500 US in total.

I sat there at the kitchen table, having just finished counting the money, when Charlie wobbled down the stairs to the ground floor. The money was stuffed into my pants pocket for now, I'd decide where to keep it later. Now it was time for the big meal and the football games.

We continued to plan whenever we could get a moment where Charlie was busy doing something elsewhere on the property.

Thanksgiving went over pretty well, although a lot of family members were worried about how Charlie was coping. There were several who thought that we should all get checked out, largely because they were worried that it might be an issue for other family members.

That was nixed when one of our cousins, a resident working toward his doctor of medicine degree, stated that a condition like muscular dystrophy would be present either as a teen for the Emery-Dreifuss version or as a young adult for some forms of the disease.

Other forms of MD often didn't strike until middle age, so how and when it would occur depended on just which version was operative.

It had been Charlie's bad luck to have Emery-Dreifuss, there was no turning back from it. We, and he, could only go forward from here.

Charlie continued to hobble around the farm and the surrounding area as the season moved from Thanksgiving toward Christmas.

The plan for Charlie's Christmas was finalized, the motel where Charlie and I would stay was prepaid, so that wouldn't be an issue.

The cash that had been collected for the trip eventually topped out at just over $5200 US, a sizeable amount for a simple weekend trip.

Then the weekend just before Christmas arrived. It was time to go, and Charlie still had no idea as to what was happening.

**********

"Hey, Charlie, got everything packed and ready for me? If it is, we can be on the road in a few minutes," I stated as I pointed to the car. To be blunt, this was my baby, a light pink and pale blue 1967 Dodge Charger I'd bought from a mechanic in Austin for just $550 three years ago. He had been planning to give it to one of his kids, but both of them had turned their noses up at it, and I ended up being the new owner. One of the things he had done had been to put a 440 cubic inch 375 horsepower Magnum V8 engine in there instead of the standard option.

The car ran like a dream, it was tuned to perfection. I'd fallen in love with it from the first moment that I had seen it.

"Ummm, Becky, can you grab that duffle bag and put it in the trunk for me, please? That's all I have, and thanks," Charlie replied.

I picked up the bag he had pointed at, placed it in the trunk next to my two bulging suitcases, then closed the trunk just in time to see Charlie struggling to get into the car. By this point, he was using the arm braces and canes all of the time, so getting into a car was a hassle.

I helped him out a bit, then waited as he set his canes down before I shut the door and moved around to the driver's side of the car.

Once the car had warmed up somewhat and I could see that we were both buckled in, we were on the way to fulfill Charlie's wish.

We had been travelling for about an hour when Charlie said he needed a washroom, so I pulled into the lot of a donut shop in Mt. Pleasant. "We'll stop here for a bit, Charlie. You okay to do the washroom stuff on your own?" I asked as he stood unsteadily next to the car.

"I'll be all right, Becky. I don't like this darn disease, but I'm dealing with it as well as I can," Charlie grumbled.

"Well, if you need help, you just call my number, got it?" I asked. He nodded and slowly made his way to the washrooms. I headed into the shop, took a few minutes to use the women's bathroom, then headed to the counter, where I ordered a coffee, a hot chocolate and two muffins.

Charlie came out of the men's toilets about ten minutes later. He was frowning as he slowly made his way to the table and sat down. He pulled his canes, with the attached arm bracers, off and set them across the seat beside him, then took a quick sip of his hot chocolate.

He smiled for a moment, which was very nice to see and something that happened a lot less often since the diagnosis.

We sat there for a while, sipping our drinks and enjoying the fresh blueberry muffins until they were gone, then headed back out to the car.

I looked over about ten minutes after we were moving again and saw that Charlie had fallen asleep, head down into his chest.

I let him be and kept driving, eventually crossing into southern Arkansas, heading east across the southern part of that state.

We stopped a few times for bathroom breaks, once to grab a quick meal at a Popeyes in eastern Arkansas at about 4:45 PM local time.

Charlie was happy, he's always preferred chicken, turkey or fish over beef or pork, which makes him a bit of an oddity in our family. I mean, between the thirteen ranches owned by dad's sisters and brothers and a few cousins, plus the one owned by Amber's husband, our family could lay claim to nearly 875,000 acres of prime farmland in central Texas. The farm where we grew up was the smallest of the whole bunch.

On nearly all of those ranches, we raised large herds of beef cattle, plus some dairy cattle and about a thousand pigs on some of the ranches. Add in turkey and chicken pens on nearly every ranch and we had most of the meat items covered, well, other than fish, that is.

It's funny, but one of my cousins is actually looking at buying a fish farm located down closer to the Gulf. If he does, we'd have them all.

It was just shy of 6 PM when we crossed into Mississippi, continuing in an easterly direction.

The rest of the drive to our destination took a bit over two hours, thanks to his needing a stop in Tutwiler. Strange name for a town, huh?

We finally arrived at the motel, where the clerk checked us in, noting that our stay until Monday at 11 AM had been prepaid.

"Yup, that was done a couple of weeks or so ago, one less hassle for us to worry about while we have fun this weekend," I stated.

The girl chuckled, replying, "Must be nice to have that much cash to be able to do that."

I giggled as I answered her comment, "We aren't rich, that was a gift from several members of our family to Charlie here."

Charlie turned bright red when he heard that, spluttering, "This... weekend... is a gift... gift for me?"

"Yup, Charlie, it is. You remember when you made a comment in the basement one October afternoon about going to a fair?"

I swear, if it were possible, Charlie would have turned even brighter red, he was blushing that strongly. He nodded, not saying anything.

"Well, Charlie, I was about to come down the steps when I heard you say that. It wasn't until Thanksgiving that this was planned, though."

The clerk was becoming rather curious about it all and asked, "Why is it so important that he go to the fair now?"

I sighed as I faced her again and replied, "Because six different doctors said this may be the last Christmas that he can walk on his own."

Now it was her turn to glow like a streetlight, she apologized profusely to Charlie, who just shrugged it off with a soft smile aimed at her.

Well, that was interesting, Charlie actually semi-flirted with her. Huh, she has to be in her early twenties, that's a big difference for a kid.

We headed to our room, then I went back out and moved the car so it was next to the walkway in front of our room.

It took me two trips, but I brought the bags into the room, telling Charlie to just relax, maybe we could get some pizza later.

The room had a pair of twin sized beds in it, plus a plastic looking chair set not too far from each bed being the only seating available.

We spent the evening just chilling in front of the TV, watching a couple of movies, Armageddon, then Pirates of the Caribbean on pay TV. Just after 11 PM, I called the office and asked where we could get some pizza. I swear, the girl giggled before she answered me.

"You're lucky, actually. There's a diner just down the road, they'll make you one and deliver it, they close at midnight. Just give them a call."

She gave me the phone number and I called them, placed an order and returned to watching Pirates.

Not quite thirty minutes later, there was a knock on the door. I opened it, accepted the delivery, paid the guy and closed the door.

We ate a bit over half of the pizza between us, then put the rest into the small fridge in the room for the morning.

It was about 12:15 AM as we changed into night clothes, me in a nightgown, Charlie in a pair of Snoopy pajamas that looked rather cute.

**********

I haven't had that good a sleep in a long time. When I checked my phone, it showed the time was 10:15 AM, half the morning gone already!

Charlie was still sprawled on the other side of the bed, the blanket thrown down toward the other end of the bed, leaving him half uncovered.

I gave him a gentle nudge on his shoulder, and just like that, he was awake. "Morning already, yup. What time is it, Becky?" he enquired.

"Not quite 10:20 AM, time to get a move on, the day won't last forever," I giggled as I ran into the bathroom to take a shower.

I was finished and exiting the bathroom perhaps fifteen minutes later. I quickly dressed in jeans and a flannel shirt over my usual undies.

Charlie pulled a towel from his bag, then placed an outfit similar to my own but for a guy on his bed, then slowly walked into the bathroom. He was in there for about twenty minutes, not too surprising when it's difficult to control the actions of one's body, I suppose.

He finally came out, then stumbled forward a couple of steps before his body decided to do what it should and he wobbled to a stop. He stood there for a minute or two, eyes closed, taking slow, deep breaths to calm himself down, something a physical therapist had suggested.

Yeah, he's been seeing a physical therapist at home twice a week. The therapist, once she knew where we lived, stated that doing the exercises and massages and whatever else on familiar territory might help him more than having him do it in an office, so home was the choice.

It seemed to work, at least to some extent, as Charlie was rather relaxed after each of those sessions. Not hard to figure out why, the therapist, Barb Antrill, was a gorgeous looking girl with Nordic features, long flaxen coloured hair and a nice figure that had Charlie staring a lot.

I can only imagine how it will be for Charlie, he's just having his sexuality awakening now and he'll be in a wheelchair in less than a year.That's not to say that he won't be able to have fun with girls after that, just that it most definitely won't be easy for him when that happens.

Huh. Actually, even though Charlie has griped now and then since the diagnosis, he hasn't made a big fuss over it, he just got on with life.

Charlie eventually settled down enough to take the few steps needed to reach his bed, then dropped down to sit on it for a moment.

I guess the calming exercise worked, as he proceeded to dress himself a few minutes later, then asked if we would eat before we left.

I mentioned that the only thing we had to eat here was about four slices of cold pizza, he said that was fine, so we ate what was left in the box.

We both brushed our teeth, then put on our coats and headed out to the car. A few minutes later, we were driving toward the fairgrounds.

Watching Charlie walk using those canes often made me sigh. It's hard to handle when someone you love is unable to do things anymore.

The drive wasn't too long, a bit over ten minutes, as the motel was in the next town just down the highway.

I parked the car in the front lot, as close as I could get to the main entry to the fairgrounds itself, then locked it once we were both out of it.

One of the family members, maybe dad or perhaps Jackson, the medical doctor to be in the family, had made arrangements with the folks at the fair for us to be able to use a small cart to get around; the cart was similar to ones you see on just about any golf course nowadays.

We had to stand in the line for about ten minutes or so. Poor Charlie, just watching him trembling, trying to stay upright tugged at my heart.

Our turn finally came, I paid the entry fee, then asked the girl if she could call a manager. The manager showed up several minutes later with the girl continuing to process people entering the fairgrounds; I mentioned the cart issue, and he led me and Charlie over it to it with a smile.

"I hope you two have fun today. We like to help folks out when we can, so just bring the cart back to the entrance when you leave today."

"Thank you, sir, we both appreciate it very much," I replied. Charlie added his thanks, then settled himself on one of the seats and we were off.

**********

We spent the first half hour or so just roaming around the fairgrounds to see what was available, then stopped and discussed the choices. Charlie was looking over at the Spinner rather intently, occasionally over at a ride called a Gravitron, then the ferris wheel and pirate boat ride.

"I can see the Spinner interests you, but I don't think it would be a good idea to do that right now, we just finished eating about an hour ago."

Charlie giggled at me, saying, "Acting like an old biddy already, Becky? You're only nine years older than I am, not ninety!"

"I prefer to keep my food in my stomach, thank you very much. How about the ferris wheel to start off. Hey, there's a pirate boat ride, too!"

"Okay, Gramma grumps, let's go!" Charlie laughed as he slid off the seat, then started moving toward the line for the ferris wheel.

It only took me a brief moment to catch up to him, then we joined the line and slowly moved to the ticket guy.

About ten minutes after we joined the line, we reached him and I asked about being able to go around multiple times. "Charlie here hasn't been on any fairgrounds rides since he was six, so things were a lot more limited for him due to his age. Can we ride it a few times?"

The ticket guy shrugged, "Ride it as much as you like. As long as you pay for the tickets, you can do what you want. Have fun."

That sounds good, so I paid him enough to get tickets for four or five rides, then led Charlie toward the first open bench on the ride. I had to help him out when we sat down because of the canes, but as we were on a seat by ourselves, we didn't slow things down much if at all.

Once everyone had been secured, the ride began to move and we slowly rose into the air. This was a fairly big wheel, about eighty feet from top to bottom, so once we had gone up as high as we could, we were able to look out across the entire fairgrounds for a moment.

Then the wheel descended again, eventually reaching ground level before starting upward on another circle.

Each time we reached the top of the ride, Charlie could be seen looking all around, grinning and laughing at everything that he could see.

I was quite happy to see him enjoying himself. Charlie, like any other kid, should be able to have fun doing all kinds of things.

Gods, it's hard to stay positive at times, knowing the way things will be for Charlie. I have to try, though, he needs good times to remember.

I spent most of the time on that first ride just watching Charlie and his reactions to being at a fair. The kid was positively excited!

The ride descended one last time and stopped. Everyone had to get off, so we made our way around and entered the line again. When we were next to the ticket guy, I showed him the tickets I still had, he grabbed a few of them and waved us toward the ride.

Well, we did the ferris wheel four times. That expression of joy kept reappearing each time Charlie could look out over the fairgrounds.

After the fourth ride, I suggested a break, then pointed to two carts, one selling pop, the other selling cotton candy in a variety of colours.

Charlie nodded, pointed carefully to a bench, told me what he wanted, then slowly walked to the bench and sat down to wait for me.

He wanted Pepsi®. Me, I prefer Coca Cola®, so I got the drinks, then carried them to the bench and set them down, showing Charlie which one was his. I turned and wandered over to the cotton candy booth, ordered a simple blue one for me and a combined pink and blue for Charlie. Yeah, Charlie likes pink a bit, enough that he will smile if one of the family buys him a pink long sleeve shirt now and then.

Even scarier, he likes Hello Kitty. Yeah, you heard me right, he's a boy and he likes Hello Kitty! Is he saveable? I have no idea. All that I know is that Charlie has half of one drawer in his dresser stacked to the brim with Hello Kitty t-shirts in just about every colour imaginable.

I brought the cotton candy over, handing him the pink and blue one, then sat down at the other end of the bench with the drinks between us.

It was a bit nippy, I guess. Well, nippy for Mississippi in the winter time, it was about 40°F that morning. I'm just glad it wasn't freezing.

We sat there for a while, enjoying our little snack, then I carried the remainder of Charlie's drink as we headed for the Spinner.

Yeah, he made it pretty clear he wanted to go on that ride next. This whole weekend is about his having fun, so I gave in to him gracefully.

We stood off to the side of the line for the ride while we finished our drinks. That didn't take long, just a few minutes, there wasn't much left.

We entered the line, with me grimacing as we reached the guy. I paid for tickets for the two of us, then helped Charlie get secured. Once he was all set, I dropped into a seat in the same set as his, then secured myself, muttering vague prayers under my breath the whole time.

Then the darn thing started moving, each set of four seats whirling off in its own little group, spinning round and round like a damn top.

I swear that I spent half of the ride glaring at Charlie and the other half moaning and holding on to my poor abused stomach.

Huh. All that I had eaten in the last hour or so was the cotton candy, yet my stomach was rolling and tossing hither and thither.

To say that I was thankful when the ride stopped would be like saying that the sun rises in the east, it was that obvious.

I took a quick glance over to Charlie as one of the ride people helped to release him and guide him from the ride area.

The darn kid was grinning, heck, he was openly giggling, pointing at me holding my stomach. Hmmmph! Brat!

Ah, well, he may be a bit of a brat sometimes, but he'll always be my baby brother and that counts more than anything else, ya know?

I shook a finger at him, making a show of being upset, but as soon as he was standing next to me, I wrapped him up in a tight hug.

We stayed like that for a bit, then he giggled and let go before heading over to the cart. He pointed to the pirate boat ride with a grin.

"That should be easy enough for Mollycoddle Madam to handle, I think," he spluttered between giggles as we started moving that way.

I shook my head, then turned it to the side to hide a smile from him as we continued moving toward the pirate boat ride.

As we came close, it looked like pretty much every pirate ride I'd been on since I was ten, and that has to be over a dozen, I think.

We stopped out of the way of the line-up, then I watched as Charlie slid to the ground and moved toward the line.

I followed close behind him, just in case he might need any help. He seemed to be doing well today, maybe it was that he was having fun?

We eventually reached the booth, I paid for the tickets, then we followed the people ahead of us to the guy handing people onto the ride. There was a bit of a gap, maybe eight or nine inches, between the end of the walkway and the closest part of the deck of the ship.

The guy, a big, strapping youth easily standing over 6' tall, noticed Charlie and his canes, nodded and casually lifted Charlie over the gap.

Charlie laughed, thanked him, then headed to a seat. I stepped over the gap, nodding my thanks, then followed Charlie and sat down.

Now, pirate boat rides generally just do a straight back and forth on their little tracks, that would be easy enough for me to handle, I guess.

Then the boat wobbled just after we started moving forward again and I swear my stomach lurched. Was this abuse Becky day or something?

After that mysterious wobble happened the first time, I watched the ride operator pretty closely. As far as I could tell, there was only the one lever used for movement, which would make the boat go forward or backward, so where in the heck had that wobble come from?

I figured it must be the water in the basin underneath the boat causing it, but looking over the side, I didn't see anything happening there.

I guess I got used to it as the ride continued because, by the time it stopped, I was barely noticing the wobbles when they happened.

Like we had done with the ferris wheel, Charlie wanted to ride the boat again, so we headed around to the line-up and paid for more tickets. There was a bit of a hairy moment when Charlie was stepping off from the boat, he nearly slipped, but stayed upright and carefully crossed the gap. We followed the people in the ride line to the side of the boat again, the same guy noticed Charlie was back for another round.

"Hey, kid, you enjoyed the ride enough that you're here for another round?" he grinned as he took the tickets, then lifted Charlie over the gap.

Charlie laughed again, then headed toward a set of seats near the back of the boat. This could get interesting.

We had been in the middle the first time and hadn't been more than lightly splashed by the boats's movements thanks to the wider beam at that point in the boat. Now we were in the back of the boat, where there was only enough room for a single narrow bench in the last few rows.

I shrugged, we were both wearing heavy jeans. If we got wet enough for it to bother us, there were buildings here where we could get warm.

We settled back into the seat just in time, as the ride started moving. The wobbles didn't bother me at all this time.

It was nice to sit there and watch Charlie as he giggled when the changes of directions at the times we were at the lowest point in the back caused water to splash up the sides of the boat and sometimes over the sides. It wasn't too bad, well, not until the very last one.

For some reason, the boat dipped lower that time, resulting in a much bigger splash and we both ended up with soaked laps and legs.

This time, I helped Charlie across the gap just by holding his hand in one of mine as he stepped over it.

We reached the cart fairly quickly and were soon moving, which caused both of us to shiver a bit as the movement created a slight breeze.

"Hey, Charlie, we should be inside for a while so our pants can dry out after that ride. There's a big barn with animals down that way. There's horses in there, cows, goats, a llama or two by what I saw on a sign earlier, probably other animals, too, and it will be nice and warm."

Charlie nodded as his teeth were chattering a bit. Hmmm... so getting wet affects him faster, that's something to pass on to the family.

**********

It took us several minutes to reach the big barn. As we got close, a big male dressed as a cowboy opened one of the doors and waved us in.

He tipped his hat to us as we passed by him. We both thanked him, then I drove into the building, sighing at the heat from all the animals.

The aisles were quite wide in here, so we stayed on the cart and wandered around the barn for the next hour or so.

Not only were there llamas, but someone had brought a tapir to the fair, as well as a capybara and we saw a Galapagos tortoise in a big pond.

That's interesting. Either someone has been down to South America, or they have contacts who can bring animals to events like this.

With all of the animals in there, there wasn't much need to have the building heat turned on, but it may have been on too low for us to notice.

We relaxed in a corner of the barn on a pile of hay bales after seeing the animals, as we needed to charge the cart for a while.

There was a small booth in the barn that sold various drinks, so I bought a round again, Pepsi® for him, Coca Cola® for me as usual.

It was kind of nice to be able to just sit there on those bales and relax. We didn't need to talk, although we did now and then.

At one point, I pulled the charger out so I could take Charlie to the washrooms at the other end of the barn. I used one myself.

We returned, I set the charger up again and we resumed our relaxation time. Yep, relaxation is right, Charlie fell asleep leaning on the wall.

I moved his pop so it wouldn't be spilled, then spent the next hour, I guess, just watching him as the cart continued to charge.

**********

Charlie eventually woke up, startled I think by a bull snorting somewhere nearby in the wide expanse of the barn.

"You ready to go back out there, Charlie?" I enquired.

His response was a quick nod. We were both dry again thanks to the barn, I suppose the fact that it wasn't freezing made it less of an issue.

There are times I think that boy is just pure evil. We had barely exited from the barn before he pointed to the Gravitron ride and laughed.

I sighed, shrugged my shoulders and steered the cart down the nearest laneway leading in that direction.

We soon arrived near the ride, I parked and the two of us climbed down from the cart, then walked to the end of the line.

Like the other rides, we had to get tickets, then hand them over for the ride itself. We followed the line-up as the ride came to a stop and the guy running it had everyone get off from the other side. We soon made our way on, I helped Charlie get in and settled, then I did the same.

In the Gravitron, the 'seats' are against the inside wall, about four dozen all told. When it spins, the ride produces a fairly strong centrifugal effect that literally presses you into the seat, more and more firmly the faster that it goes. That effect reverses as it slows down again.

I found out from someone exiting ahead of us, after it ended, that the centrifugal force at max speed was equal to triple the force of gravity.

I have to admit that I was feeling rather rough after the ride myself, so I just nodded and looked around to see if I could find Charlie.

One of the older folks that had been on the ride was helping Charlie to step down, then the guy that helped him just smiled and walked away.

I sighed in relief as I sat on the seat on the cart, this one wasn't moving, nor was it trying to squash me into a wall.

Charlie once again was grinning, a giggle escaping from him as he slowly pulled himself up in the other seat at the front of the cart.

"That was fun, Becky! I wouldn't mind doing it again," he said, then looked over and noticed that I seemed to be a bit queasy. "You okay?"

"I will be if I don't have to go on any more rides like that, Charlie. It's a good thing I haven't eaten since that cotton candy, hmmm?"

"You mean you don't want to go on the roller coaster over there?" He pointed across the fairgrounds to the aforementioned ride.

"Not right now, maybe when my stomach is back in my belly, not stuck in my throat. Hmmm... haunted house/hill should be an easy one."

"I suppose so, Becky, the only haunted place ride I remember being on was the kiddie one back when I was six."

"It will probably be similar, but this one will require you to be 4'10" tall. That's the absolute minimum height for a rider on 'adult' rides," I said.

"Not a problem here, Becky, I haven't been that short since I was nine. I'm 5'7" tall now, with our family history, I might reach six feet."

"All right, then," I smiled at him as I steered the cart toward a spot close to the line-up for the haunted hill.

Charlie seemed to be doing okay, he slid down from the cart's seat with only a momentary bit of awkwardness as his feet hit the ground. He had the canes braced just a second or two later as he took a moment to breathe in deeply a few times, then he wobbled toward the line-up.

It didn't take long for the ride to return, people were exiting from a point a bit further back, so there wouldn't be any interference with the ones who would board the ride. I've noticed that a lot of rides seem to be set up that way, I guess it helps to move people along faster.

We were soon taking our spots on a seat about halfway to the back of the ride, a bar was dropped in front of us to keep us safe. Granted, rides like this don't often go very fast, but accidents have been known to happen, and I felt better that the bar was there as we started moving.

Hmmm... interesting layout, the front portion of the ride is the frame of a house that the train moves through before it goes into the hillside and into the tunnel that winds its way through the hill, then loops back around to stop at the front facing the house in the distance.

We were looking around as we entered the house, then the first 'ghost' screams occurred and I saw a couple girls in front of us scrunch back into their seats as far as possible. I giggled, yeah, the screams were surprising, but I actually found it hilarious to watch how others reacted.

The screams, moans and appearances of ghosts continued as we moved beyond the 'house' toward the opening of the tunnel.

The sounds and appearances stopped for a moment as we neared the tunnel, but resumed again once we were fully inside the 'hill'.

Hmmm... oh, my, that looks just like a ghoul from how many classic horror films. I squealed briefly, but clearly heard Charlie in full scream.

I guess Charlie wasn't expecting that, I giggled for a moment as another ghoul and a zombie popped up on Charlie's side of the car.

Charlie was screaming from what looked like sheer enjoyment, which seemed likely, as he was smiling now and then as he screamed.

Well, it was nice to see him enjoying himself, he'd become fairly depressed as time passed and he started have mobility issues. He was seeing a doctor for that, too, a nice psychologist by the name of Penny Farthing. I wonder if she knew there was once a coin named that?

From what I could see, he had settled into the initially weekly visits with Penny fairly well. All that I could get out of Charlie afterward was that she was a very nice person and that she was helping him to find various ways to mentally cope with the disease and its complications.

Charlie has always been a strong boy, seeing him being forced to move around by using the canes might have made him appear to be weak, but those of us that knew him well could see the determination to keep fighting as long as he could take even a single step under his own power.

We saw skeletons, zombies, ghosts, ghouls, a werewolf or three, several witches, and a demon or devil as the ride roamed under the hill.

I suppose it only lasted for a few minutes, then we were back out in the weak winter sunlight, turning to approach the starting point.

I smiled as I helped Charlie to step off from the ride, then we entered the line-up again for the sheer heck of it.

On the second run through the house and the hill, I was screaming just as enthusiastically as Charlie had been on the first one.

We made our way over to the cart after leaving the ride, then I shrugged and pointed to the roller coaster. "Let's go on that now, hmmm?"

Charlie was quite happy to hear me suggest that and we soon were winding our way along the lanes toward the biggest ride here. I'm not sure, but if this is the one I think it is, it's a bit over six thousand feet in total length, with plenty of loops, corkscrews and ups and downs.

We watched as the coaster went up to the last big drop, then plummeted downward with many of the riders screaming like banshees. The coaster reached the bottom, turned first one way, then another, went up a small rise and then stopped in front of the line-up.

Like some of the other rides, folks leaving it were going off at another spot to make it easier for people getting onto the ride. It took a couple of minutes for the ride to fill up, Charlie and I ended up squeezed into a narrow seat near the front of the second car of the coaster.

The guy running the ride did a quick final check, then we were moving, heading for a turn and the first climb, a fairly modest one of about fifty feet. Of course, many of the people on the ride drew in a deep breath as the coaster reached the top, then the screaming started.

At the bottom, we went right into a tight triple loop, then down a straightaway and into a long corkscrew before the first big hill came in sight.

It was eerily silent as we climbed that man-made hill, then everyone drew in a deep breath again and we were dropping almost straight down toward a short straightaway and another corkscrew. The hundred and twenty foot drop had everyone screaming even louder than earlier.

The whole drop lasted just a couple of seconds or so, then we were rocketing into the corkscrew, the screaming continuing unabated.

There was a turn that we took at fairly high speed which led to a smaller double loop, then the last big hill loomed in front of us. This one was almost as big as the other one, and the actions of the riders were almost a perfect repeat as we approached the final plummet.

The indrawn breaths and the constant screams as we dropped down to the final part of the ride were just short of being painful.

To be honest, I will admit that I was screaming as much as anyone else as we hit each drop, just like Charlie sitting next to me.

The grin on his face as we rode up over that little rise near the end, then came to a stop was priceless. I briefly hugged him as the guys running the ride opened the doors and released the bars so we could all get off the ride. We followed the people ahead of us in an orderly fashion.

I looked at my small watch as we reached the cart, which showed the time was just after five PM. Time flies when you're having fun, yeah?

**********

It was time for us to have a bit of a break. Neither of us had eaten anything since the cotton candy several hours earlier.

We got on the cart and I headed for one of the food areas. We saw booths selling hot dogs, hamburgers, mini steaks, tacos, you name it.The one that drew our interest, though, was the one that was selling quesadillas, enchiladas and hot tamales. I parked by a bench near the booth, then suggested that Charlie settle down on the bench and I would bring the food over. Charlie told me what he wanted, it sounded good to me.

There was only one person ahead of me as I approached the booth, and he was soon walking away with several tasty looking items.

I ordered red pozole for both of us, then found out they only had chicken for it, they had run out of pork an hour ago and were waiting for someone to bring them more. I said that was fine, then ordered chicken quesadillas with red salsa and chopped onion in them. The last food item that we both wanted was tamales with a bit of chicken and chilies in them. I also ordered a Pepsi® for him and a Coca Cola® for myself.

I was actually surprised to find out that the booth supplied trays if people wanted one, and the goodies were soon ready.

I carefully carried the tray over to the bench, sat down and set the tray in between myself and Charlie. "Dig in, kid and enjoy."

We both did that, slowly but methodically working our way through the pozole, quesadillas and tamales. I knew how a growing boy eats, having been one myself, so I had made sure to get enough of each item to make a fairly solid meal. Charlie ate more than I did.

That's not too surprising, I suppose, but I wasn't all that far behind him, even with my taking smaller bites and chewing my food more.

We relaxed on the bench after we had finished eating, although I did return the tray to the booth with a smile and a polite "Thank you."

The day had warmed up a bit, but was beginning to cool again now that the sun had dipped down below the horizon.

Lights were on all over the fairgrounds as the dusk deepened into full night, but there was still fun to be had here. Oh, yeah!

**********

After we had relaxed for a while, we hopped onto the cart again and headed for the carousel. I can still hear Charlie's giggle as he pointed to it and said that it should be a gentle enough ride for me, even though we had finished eating recently. I just shrugged and laughed with him.

The carousel was nice, the gentle up and down motions were no problem for my sensitive stomach. Hah! I just realized, it's kind of funny that I have no problem eating really spicy foods, but put me on some of the rides here after eating and my poor stomach would be in agony.

I watched Charlie who was on the pastel pink unicorn in front of my pale golden one, he was holding his canes in one hand, the pole with the other and giggling. I got a look around the ride as we continued, and saw a rather pretty girl a couple of mounts ahead of him.

Yup, you got it, Charlie wasn't watching the ride at all, he was eyeballing that pretty girl for all that he was worth. I think she knew it, too, as she kept glancing back at him with a rather sweet smile as the ride continued its leisurely circle for the next few minutes.

I noticed that there wasn't much of a line-up for the carousel, so I asked Charlie if he wanted to ride it again, no surprise, he said yes.

Interestingly, the girl that he had been looking at also decided to ride again, this time sitting on the mount directly ahead of Charlie's.

We circled round and round for the next few minutes as Charlie and the girl held a conversation in low tones. I guess she had asked him about the canes and his response was a bit of a shock to her, as she briefly looked horrified, then broke into tears while staring at Charlie.

The ride stopped and we all climbed off, at which point I learned that the girl was named Shawna and lived in the next county. She was clinging to Charlie as we stood beside the electric cart, shedding more tears on his shoulder as he awkwardly patted hers several times.

She asked if there was anything that could be done to slow the progress of the disease, we both shook her heads and she cried again.

When she finally managed to stop crying, I handed her some tissues from my jacket pocket, shrugging at their slightly wrinkled state. She took them and wiped her eyes, then pulled a compact from a miniature backpack, cleaned up the 'raccoon' look and applied fresh make-up.

Shawna was a few months older than Charlie, just a month or so short of her fifteenth birthday, the make-up made her look slightly older.

I let the two kids talk for a while, then heard someone calling Shawna's name. A woman was approaching, calling to Shawna again.

"That's your mom, I gather, Shawna?" I asked. At her nod, I continued, "I guess you need to say good-bye, thank you for being nice to him."

Shawna nodded, exchanged one more quick hug, then turned to face her mother who was now just a few feet away.

"Mom, this is Becky and Charlie, Charlie here has Emery-Dreifuss MD, he'll be in a wheelchair in less than a year," Shawna stated.

Her mom turned rather pale, then said, "We know what that can be like, one of Shawna's cousins was diagnosed with it last year."

Shawna added, "Yeah, Betty went into a bad spiral of depression when she was diagnosed, we had a hard time pulling her out of it."

Shawna's mom nodded, saying, "It wasn't easy, that girl can be oh, so stubborn. Doctors say about six months till she is in a wheelchair."

Charlie sighed, then spoke, "I've only been dealing with this for about four months, well, since it was actually diagnosed. According to the doctors that were all there when I was told about it, the preliminary signs had been present for at least a year before that, maybe longer."

Charlie leaned against the cart for a moment, quite clearly thinking, then pulled a shabby little notebook from the back pocket of his jeans, a pencil from the inside pocket of his jacket and quickly but semi-legibly wrote down his email address and handed it to Shawna's mom.

"Give that to Betty, tell her that she's welcome to contact me at any time. Tell her that I know what she is going through," Charlie stated.

Shawna's mom nodded as she accepted the small piece of paper. "I'll do that. Time to go, Shawna. You two have a good evening."

Charlie and I watched as the woman and the young teenager walked away.

**********

I sighed, just like that, the fun had gone out of the day, perhaps only for a moment, but seeing the signs of tears in Charlie's eyes was oh, so hard to take. Yet he had been a gentleman toward Shawna for the most part and was willingly offering himself as emotional support for Betty.

I held Charlie close to me as he let his tears fall and they dampened the front of my denim jacket. He's my brother and I love him dearly.

I guess we were standing there holding each other for a few minutes. People passed by now and then, but we were left alone.

He finally straightened up and pulled himself up onto the seat of the cart. "Okay, kiddo, what do you want to do now?" I asked him.

"I just want to relax and be comfortable," he replied. "Can we go back to the motel, watch some movies, maybe order burgers later?"

"If that is what you want to do, it's fine with me, Charlie. I guess we need to take this cart back to the front entrance before we leave."

I climbed up on the cart and we were soon moving along the laneways toward the main entrance, which we reached a few minutes later. I parked the cart as close as I could to the spot it had been in earlier today, then headed over to the entry booth and asked for the manager.

A different girl was working there, she contacted him and he showed up pretty fast. He was coming from a set of RVs nearby.

"Hi, I'm returning the cart for the day," I informed him as I pointed at the cart, "We're heading back to the motel. We'll be here tomorrow."

The manager nodded and smiled, "Glad we could help you folks out. Just let us know you need the cart when you arrive here tomorrow."

"Thanks a lot," I said as I led Charlie through the exit lane, then over to the car.

**********

Fifteen minutes later, we were back in the motel room, relaxing in the chairs in front of the TV. Well, to be honest, those chairs aren't very comfortable, but you use what's available and after we had placed a pillow on each chair, they were a little easier on our poor abused bottoms.

We flipped through the various offerings available, didn't find anything of interest, so I looked at the pay-per-view channels. We had better luck there, as we soon found listings showing The Hobbit: An Unexpected Journey, Men In Black 3 and Ice Age: Continental Drift one after the other on one of the channels. The two of us laughed and grinned at each other, then settled into our chairs as The Hobbit started playing.

We soon found ourselves avidly following Bilbo and the others on their journey to the Lonely Mountain, where the dwarves were going to reclaim their home from the dread dragon Smaug and the great battle that took place over the Lake, ending in the death of the dragon.

I'm not too sure how we managed to last through that movie, I know I was squirming all over my chair as it ended. The moment that the credits came on the screen, I was out of the chair like a shot, running into the bathroom, then sighing in relief as my overfull bladder emptied.

I guess Charlie was in just as bad of a shape, for I found him standing by the bathroom door, moaning for me to let him in there.

He went past me pretty fast for not having his canes in hand. I clearly heard his sigh of relief a moment later and lost myself in giggling.

We were back in our seats a few minutes later, with the next movie due to start in just over five minutes.

I've always found Men In Black to be funny, especially Will Smith, I still remember watching him on Fresh Prince of Bel Air years ago.

Charlie and I watched as Will's character once again managed to save the day, this time against an alien that was trying to assassinate K.

When that movie ended, I called the diner, asking for a burger and fries for each of us, along with Charlie's Pepsi® and my Coca-Cola®.

Ice Age had been going for about ten minutes when the knock came on the door.

I opened it, smiled at the teenage girl who handed me the bag with the food, then paid her, received the change and gave her a tip.

She thanked me and walked back to her six or seven year old Ford Focus, then drove away, back to the diner, I suppose.

I went in and opened the bag, checked the burgers and passed Charlie's over, then set the two fries containers on a hand towel on the TV.

We watched the movie as we ate our burgers and fries, taking sips now and then from our respective drinks.

Ice Age: Continental Drift ended about ten minutes after we had finished eating. We each still had some of our pop left at that point.

After we had both made a quick run to the washroom, we changed into our nightwear and climbed into our beds. It was 1:12 AM.

**********

I could hear soft snores coming from the other bed as I eventually drifted off to sleep. The trip so far was a success, Charlie had been having fun on the various rides and just wandering around the fairgrounds, or when we had relaxed with the cotton candy and the Mexican food.

The only downside that had occurred was discovering that Shawna's cousin was going through the same issues as Charlie.

I know it hit him pretty hard, but he did a very good thing by offering to be a support for that girl Betty. He's a great kid, even when he's a brat.

I woke up once during the night, but was soon asleep again. I don't recall if I dreamed or not. If I did, I clearly don't remember them.

My bladder hauled me out of bed at 9:20 AM. I'd slept reasonably well, so the roughly eight hours should be sufficient to get through the day.

I took a quick shower like I had done yesterday and dressed in a similar outfit, then decided to let Charlie sleep as long as he could.

I sat in one of the chairs in front of the TV, sipping at the lukewarm remainders of my Coca-Cola® from the night before.

I found myself watching Charlie as he slept. At some point during the night, like the night before, he had thrown off most of the blanket. That damn MD was there to be seen as his left hand went into that distinctive claw that the contractures cause twice before he awoke.

I couldn't see whether his right hand had been doing the same thing as it had been tucked in close to his side.

I did see the muscles in his lower left leg as they contracted at one point a few minutes before he woke up; he moaned and was asleep again.

I had just glanced at my watch for the umpteenth time, noticing it was now 10:50 AM, when Charlie yawned and opened his eyes.

"I've already had a shower, kiddo. Go have yours, then we'll see if that diner is open for breakfast, okay?" I enquired.

He nodded, looked through his duffle bag, pulled out some jeans, a t-shirt and a flannel shirt like he had worn yesterday, then headed to the bathroom, closing the door behind him. I soon heard the water running and Charlie quietly humming a country tune as he washed himself.

While he was busy doing that, I called the diner and quickly discovered that it being Sunday didn't stop them from opening the doors. A couple of the staff there did like to go to Sunday services, but it was usually slow enough on most Sunday mornings that one girl could handle it.

The shower turned off and a few minutes later, Charlie came out with the towel wrapped around like most boys do it.

He blushed a bit as he passed me to get to his bed, then shrugged, dropped the towel and put his clothes on, slowly and carefully.

Just watching how slowly he had to do that caused my heart to twinge, and I knew damn well it would only get harder for him. Curses!

I smiled at him as he looked at his denim jacket. "The diner is open, so we can head on over if you like?" I asked him.

He nodded, then just as slowly put the jacket on before he reached for his canes. We were out of the room soon after that.

**********

The diner, thankfully, wasn't very far down the road. There was plenty of space to park, so I steered the car into a slot near the entrance.

I held the door open for him because I knew just how hard it can be for him to hold the canes in one hand and open a door at the same time.

We entered the diner, which was much bigger than I was expecting it to be. We settled into a booth not far from the counter.

A young girl, actually, a young woman, approached us, placed glasses of water in front of us, then asked what we wanted for drinks. You already know what I like, yep, I asked for a Coca Cola®, then was surprised to hear Charlie politely request a hot chocolate drink.

She brought the drinks back, along with a pair of menus, then left us to decide on our meals.

A simple breakfast sounded good to me, I picked ham as my meat choice, then learned sausages or bacon came with it. I picked sausages. Charlie must have been pretty hungry when he woke up, as he ordered what I did, then asked for pancakes as well.

Breakfast meals don't take very long to make. I know, I worked part-time for a small restaurant while I was in college. I put in a couple of hours on every weekday back then, then hauled myself out of bed at 6 AM on Saturday mornings to put in a twelve hour shift there.

The girl brought our meals out, carrying my plate in one hand and Charlie's items on a tray being held in her other hand. She set my plate down first, then eased the tray down to the edge of the table before she placed the two plates for Charlie's meal in front of him.

With a quick smile and a brief comment, "Enjoy your meal," she was headed back to the kitchen just as an older male entered the diner.

He must have been a fairly regular customer there as she called out, "Hi, Pete, your usual today?"

The guy, Pete, shrugged out of his jacket, sliding it over the back of a chair by the counter, then lowered himself onto the chair.

"That's right, Pauline," he laughed once he was settled. "Full breakfast and a coffee, as you already know."

Pauline giggled, poked her head into the kitchen, then passed on his order to the cook before she made her way behind the counter. She filled a cup, then carried a few of those little disposable milk or cream containers over to his spot, set it down, then dropped into a chair.

Yeah, I know that bit, a waitress will often use any free moment to take a seat and rest their feet, even if it only lasts for a few minutes.

I took my time as I ate my meal. As for Charlie, he's a boy, how many boys do you know who don't eat like they are in a race to finish? Yep, Charlie was going through his food like a high speed locomotive passing a slow train, leaving me behind in the proverbial dust.

I still had half of a sausage, a quarter of an over hard egg and a slice of bacon left when Charlie sat back, having finished both plates.

I smiled, shook me head, then continued to eat, enjoying a sip of my Coca Cola®.

Charlie was looking at me constantly as if to say, 'Will you finish eating already? There's a fair we need to get to ASAP!'

I swear he was about to grumble about how slow I was eating as I took the last bite of my food, then finished my drink.

I laughed as we put our jackets on. I dropped $20 on the table, telling Pauline to keep the change as I opened the door to leave.

**********

We were a bit further from the fairground than the motel, so it took us a little over fifteen minutes to reach the main lot there.

I parked close to the entrance again, then waited until Charlie was fully out of the car before I hit the remote to lock the doors.

We had to wait a few minutes before I could pay the entry fee, then I had the guy contact the manager.

Once the manager arrived, the same one as we had seen yesterday, we were able to take the cart and start roaming around the fairgrounds.

We had eaten recently, so I quietly informed Charlie that the roller coaster, Gravitron and Spinner could all wait for a couple of hours.

We started off on a different ride today, a water ride that went through a tunnel, up a hill and around another one before it returned to the starting point. This ride had been equipped with plastic or plexiglass sides so the riders wouldn't get wet, they could be removed if desired.

Apparently, several people in our particular 'car' wanted the shields removed, so I guess we will be getting wet again. That's life, I suppose.

Charlie didn't seem worried about it, so I just shrugged and decided to enjoy it. We could always go in one of the heated buildings later.

The ride started at the top of a miniature hill, then rolled along the track around a curve or two before entering the long, snaking tunnel.

The hill containing the tunnel was a fair sized one, allowing the cart to turn this way and that, go up here, down there. I'm pretty sure that we crossed over and under other parts of the track a few times, as the rails were visible in the dim lights of the tunnel.

What I hadn't noticed when we got on the ride was the big drop down the side of the hill just after the ride exited from the tunnel.

I could feel the ride move faster as we went down that slope, then we hit the bottom in a small lake and created a rather large splash.

You guessed it, we both got thoroughly soaked, the fronts of our outfits from the shoulders down were dripping into the boat's bottom. I shrugged and giggled, shaking my head, spraying Charlie with a bit of water. Charlie promptly returned the favour, laughing as he did so.

We exited the little lake soon after, then came to a stop at the starting point. I helped Charlie to get out, then we shuffled over to the cart.

"Well, Charlie, do we go in one of those places to get warm," I pointed at several buildings a few hundred feet away, "or go see the animals?"

If you guessed that Charlie said to go see the animals, you would be right. I steered the cart to the washrooms there first.

"Let's go in the washrooms and get a little dryer, then we can roam around in here and maybe relax on those hay bales like we did yesterday."

Charlie nodded, then slowly and carefully made his way into the bathroom, using a shoulder to push the door open.

I suppose I could have helped him by opening the door for him, but he seemed to be managing well enough on his own, so I left him to it.

I marched into the women's, grabbed a handful of paper towels and wiped my face, neck and as much of my shoulders as I could reach. After dropping those paper towels in the garbage, I grabbed a few more and began patting at the front parts of the jacket and pants.

I exchanged soaked ones for fresh ones and continued to pat at the clothing for nearly ten minutes. It was still wet, but no longer soaking wet.

There didn't seem to be much more I could do in that regard, so I took a few minutes to use the facilities, then walked out to the cart.

I ended up waiting for about ten minutes for Charlie to come out of the men's. He was grinning and said someone had helped him out with the patting down, as Charlie wasn't able to bend as easily as he had done in the past. Those darn muscle contractures again, I suppose.

Charlie informed me that he had thanked the man in question, then pointed to a male around 40 or 45 who was just leaving the washroom.

I politely said hello to him and also offered thanks for his helping Charlie.

"'Tis not a problem, ma'am," was his reply. "I look on it this way: "Verily I say unto you, in as much as ye have done it unto one of the least of these my brethren, ye have done it unto me." Matthew 25 says it so well, I think. How much more so when the one helped is a child?"

"Once again, thank you, sir, and we both hope you have a very good day."

" A good day to you as well, ma'am, and to the boy." With that, the stranger strode out of the barn and out of our sight.

I smiled and tousled Charlie's hair, then we climbed onto the cart and spent the next ninety minutes wandering all around the barn. We had seen a tapir, a capybara, a Galapagos tortoise and llamas yesterday. Today, we passed a few stalls that had other types of animals in them.

One stall had an elephant in it. I suppose the elephant was fairly young, as it stood not much more than shoulder high on me.

Another had a zebra, yet another was a temporary home to a hyena family, and a third revealed a canine of some sort. There was a small placard beside that one's stall door that said this was a dingo from Australia. A fourth stall was home to another Australian animal, a wombat.

We realized at that point that we had seen just about every animal in there, as we had looked at different areas today than we had yesterday. We were nearly dry by then, and my watch was showing that it was just past 2:15 PM. I asked if Charlie was hungry; of course he said yes.

We left the barn and drove around a bit, looking at the various types of food that were available in the many booths around the fairgrounds.

After a bit of discussion, we picked a booth that was selling simple tacos. Pick your meat and other items and they heat it for you.

I wasn't surprised when Charlie asked for chicken on his, that was one of his preferences as I've said once before. I also wasn't too surprised when he added fresh chilies to it, along with a bit of hit sauce. I opted for beef instead of chicken before adding chilies to mine.

What can I say? Down in the deep south, you get raised on a variety of spicy foods and some that aren't. Charlie and I both like spicy food.

The tacos didn't last very long. I wasn't particularly hungry and only had two, Charlie wolfed down four of them before I could finish mine.

I noticed Charlie nodding a bit, so I suggested we go back in the barn and rest on those hay bales for a while.

We made our way back into the slightly warmer barn, then over to the hay bales. I watched as Charlie climbed up and leaned against the wall. He hadn't been there for more than a few minutes when he fell asleep. I kept an eye on him and the other on the cart as he slept.

There was a guy who kept walking by us. He had a badge of some sort on his shirt, so I figured he was a worker here somewhere. It turned out he was one of the caretakers for the animals in here and he just wanted to be sure that we were okay. He left once I said we were fine.

Charlie woke up a bit over an hour later. I helped him as he made his way down from the bales, then we went back out to the rides.

We spent an hour or so on the Ferris wheel again, then Charlie decided we should go on that darned roller coaster.

I figured my stomach wasn't in any jeopardy as I hadn't eaten for about two hours, so I agreed and we soon joined the line-up.

The coaster came in a couple of minutes later, dispensed the most recent riders and we were allowed to make our way onto the ride. I guess our luck was a bit different today, we ended up in the second last seat in the front car. Charlie got his canes out of the way just in time, as the girl who was guiding people onto the coaster dropped the bar in front of us and soon informed the operator we were ready to go.

I won't give a play by play this time, let's just say that both Charlie and I were screaming as much as anyone else on the ride.

When we came to a stop, that beautiful grin was on Charlie's face again. I love when he smiles or laughs, he doesn't do it often nowadays.

We followed the other people as they left the ride, then hopped on the cart to go over to the Spinner. Torture time or what? Oh, well, I'll live.

I was even happier that I hadn't eaten for a while as we reached the Spinner. We didn't have to wait long once we had our tickets, the ride wasn't getting a lot of people just now. The operator waited a few extra minutes, then waved to everyone to grab a seat.

He's my brother. Even though he drives me up the proverbial wall at times, I would never harm a single hair on his head. Not one hair.

By the time that ride finished, I felt like someone had put me into one of those tops you spin on a floor. I needed a seat that wasn't moving. I barely managed to haul myself up onto the driver's seat of the cart, then suddenly thought of Charlie and looked toward the ride.

Charlie was just being helped down by the ride operator. Yeah, you guessed it, Charlie was grinning and giggling at my plight.

By the time that Charlie climbed into the other seat, I had recovered enough to put the cart into motion, then asked what was next.

Charlie pointed to the Tilt-a-Whirl, a ride I've only tried once or twice. I survived the Spinner and the Gravitron, I could handle that one.

There was a bit of a line-up when we stopped near the ride. I purchased some tickets and we joined the line just as the last ride ended.

We were soon seated in one of the small cars, next to a young girl about Charlie's age. Well, well, it turned out to be Shawna. She apparently cadged a ride here from a girlfriend who owned a car, then had spent the day having fun while spending her parents' hard earned cash.

Oh gods, please, please remind me to never, ever, EVER get on a Tilt-a-Whirl again. I tossed what was left of my small lunch over the side of the ride just seconds after we narrowly missed another car. I think Shawna did, too, but I was too busy with my own upset stomach to notice.

The ride did eventually stop, and I staggered off, then looked back just in time to see Shawna help Charlie. Maybe I was wrong.

The three of us reached the cart shortly after that. Charlie was grinning madly again, he's a sadistic little bugger at times.

Okay, I no longer have any food in me that could be regurgitated, so perhaps I'm safe from it happening again today.

Why am I not surprised? Charlie wants to do the Spinner. Oh, dear, I think I will be okay, either that or I've gone right 'round the bend.

I had Shawna go up and get the tickets for the Spinner, as I wanted to relax for as long as possible before getting on that one.

Well, it had to finish its little cycle at some point. I followed Shawna and Charlie onto the ride, then made the sign of the cross.

I wasn't speaking out loud, but I was definitely saying a little prayer, asking whoever was up there to keep me safe.

A moment later, the ride started moving, then the darn seats started spinning and I began to wonder if I had anything left to toss up.

I'll say this, it wasn't fun, but I made it through the whole ride without any further problems. I was the first person to exit the ride, well, that was because I was out of my seat and moving at a dead run to reach the little gate, then out toward the cart where I stumbled to a halt.

Shawna and Charlie joined me there a short while later. I was leaning over the cart, taking regular deep breaths, then letting them go.

It took a few minutes before I began to settle down, then I climbed onto the cart, turned and thanked Shawna for helping Charlie.

Like the guy in the barn earlier, she said it was no problem; at least she didn't throw a Bible quote at us like he had done.

I handed Shawna about $50, saying that she could use it to take Charlie on rides for a while, I just wanted to relax by the cart.

She nodded and the two wandered off, Charlie wobbling a bit on the canes as they headed over toward the Gravitron.

I spotted a booth selling drinks and went over to buy myself a freshly brewed coffee, which I carried back to the cart.

I spent the next half hour or so sipping at the coffee, then just idly looking around. A brief look at my watch showed it was just after 5:30 PM, and the sky had darkened significantly. The sun was dropping below the horizon and night would be falling soon. I finished the coffee, looked around again, then walked to the nearest bin and dropped the cup in it before I returned to the cart and stood by it, waiting for them to return.

I was still standing by the cart, leaning against it, actually, when Shawna and Charlie finally returned just after 6:15 PM.

Shawna said something about having to go home to babysit a young cousin, said goodbye to both of us and headed toward the exits.

I asked Charlie if he wanted to do anything else, he said one last go on the carousel, then we could return to the motel for the night.

A carousel was a nice, easy ride, so I agreed to it and we climbed onto the cart, then drove around until I spotted the carousel ride.

I soon had tickets for us and we joined the line-up, a large part of which seemed to be young teenaged girls, thirteen or fourteen at most.

Of course, put a boy Charlie's age near girls and he's going to look them over rather thoroughly. Yep, he was eyeballing two of them. Both of the girls he was looking at were a short distance ahead of us and looked like they could be sisters, perhaps they were.

The ride stopped, people headed out through the little back exit and the new riders climbed onto their mount of choice. The two girls that Charlie seemed to be interested in were just far enough ahead of us that they were the last people to get onto the carousel.

We stood there for a few more minutes, I could see Charlie eyeballing those girls every time they came round this way.

Eventually, it stopped again and the riders exited like the previous ones, those two girls were soon gone, not having noticed Charlie at all.

Charlie looked a little bit upset that he hadn't been noticed, but he shrugged it off quickly enough as we each claimed a mount. Charlie's was a sky blue one this time, whereas mine was cream white. The unicorns were soon going up and down as the ride went round and round.

There was a girl, perhaps not as pretty as the two a short while ago, on the mount just ahead of Charlie. He was watching her intently.

I wasn't really paying much attention to him at that point, just sitting there on the mount and sighing in relief that I was still in one piece.

The ride came to a stop and we followed the other people as they returned to the outer area of the ride.

The girl he was watching was gone. Charlie shrugged and shuffled toward the cart, it was becoming clear that he was nearly exhausted.

We climbed onto the cart and headed for the main entrance. That ride took about ten minutes, as we crossed most of the fairgrounds.

I parked the cart as close as possible to where I had gotten it when we arrived here, then waved at the manager and pointed at the cart. He came over and asked if we had had a good day. I replied that we had, that we were heading home tomorrow and then thanked him for the cart.

We arrived back at the motel just before 7 PM. Both of us were ready to just relax for a few hours. We would be leaving around 8 AM in the morning, to ensure that we would return home in time for the early evening Christmas day meal. Mom and dad were hosting this year.

**********

After a quick skim through the regular channels and finding absolutely nothing interesting to watch, we looked at the pay-per-view channels again and eventually found two movies that looked good, The Avengers followed by The Amazing Spider-Man. Superhero night, I guess.

We made ourselves comfortable and relaxed. Both movies were good, I've always liked Spider-Man, so I enjoyed that one a bit more.

While we were waiting after The Avengers had finished, I called the diner and ordered two half-chicken dinners. As usual, Charlie just had to have his Pepsi® and I stuck my tongue out at him as I made sure to get my Coca Cola®. We always argue over those two brands.

The order arrived about twenty minutes after Spider-Man started. I thanked the guy, paid for it plus a tip and took the food inside.

I passed Charlie his chicken dinner, then set his drink on top of the TV. I also put my drink on top of the TV, but at the other end.

Damn, those people do some fine cooking. Pizza Friday night, burgers and fries last night, breakfast today, now these lovely chicken dinners.

We both tucked into the food. It didn't take very long before the chicken bones had been stripped bare and the last of the fries had been eaten.

It was just after 1 AM when the second movie ended. We quickly changed and were in bed, we needed to be up by 8 AM.

**********

It seems as if I had barely closed my eyes and the darn alarm on my little watch was beeping. It took me a minute or two to turn it off.

Like the last two mornings, I had a quick shower. Once I was done, dried off and dressed, I woke up Charlie and sent him in to shower.

He came back out about twenty minutes later, grumbling at being awake so early. He slowly dressed himself, then packed everything.

I had been busy packing my own bags, shuffling things around a bit, putting dirty items in one suitcase, still clean ones in the other.

It was not quite 8:45 AM when I handed the keys in at the motel office, thanked them and told Charlie we'd go to the diner first.

Hey, it doesn't hurt to start the day off with a decent breakfast, ya know? Perhaps Charlie wouldn't be so grumpy with some food in him.

We enjoyed a repeat of yesterday's breakfast, including the older guy, Pete, that we had seen.

With a nice breakfast in our bellies, me having enjoyed a hot coffee and Charlie a hot chocolate, we were on the road, going home.

We made pit stops as needed, bought a pop here and there to keep us going and stopped in El Dorado, Arkansas for lunch at a burger place.

We used the drive thru at the restaurant, then were on our away again a few minutes later with our orders.

There was sign pointing to a "Mosby Park", we headed that way and found the park itself. There wasn't much of anything going on there at that point, although some Christmas decorations were scattered on the ground. There was a bench by the road next to the park, it would do.

We parked the car by the side of the road. It was Christmas Day, so I wasn't sure if they would force people to use pay slots or not; I decided to keep an eye on the side of the road while we ate. The burger wasn't the greatest. Charlie didn't seem to mind, he ate two of them.

We sat there munching on our fries and slowly emptying our drinks, then a police car went by, saw the car, slowed then, then kept going. Maybe they were being nice, I'll never know, but I guess they figured the car belonged to me, I was there, and they let us be.

When the last fry was consumed, we took the remainder of our drinks with us, dumped the food scraps into the nearest bin, then left.

I drove up the road a bit, then spotted a place with a public washroom that was actually open, I saw someone coming out. I nudged Charlie, who was dozing a bit after the meal, and we both took the opportunity to use the washroom before returning to the car.

The rest of the trip home took a bit less than four hours, we pulled into the front of the house at 5:52 PM, just in time for the meal.

Well, it seemed we were a bit early, the meal wouldn't be ready until about 6:15, so I hauled our bags up the stairs to our respective rooms.

Once that was done, I washed my hands, then cajoled Charlie into doing the same and watched as everyone headed to the washrooms.

Mom, Aunt Amber, Aunt Angelina, Aunt Jasmine and Aunt Elisabeth were setting utensils out, then mom called everyone to attention. "The food is served. Take your time, people, there is enough for everyone; if something runs out, we have more waiting in the ovens."

Charlie and I had been close to the front, so we managed to get our plates filled fairly quickly and headed into the big living room. I sat down on one of the four large couches, then I held Charlie's plate as he sat down. He took it back and we relaxed, eating and chatting quietly.

From time to time, someone would come in and ask Charlie about the weekend. Every single time, his response was "I had a lot of fun."

**********

I had spent maybe $1200 of the $5200+ that had been collected. What was left would be placed in a trust account for Charlie. He would get that either when he married or when he celebrated his 25th birthday. Family members could add to it at any time if they wished to do so.

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Comments

sniff, sniff ... I'm NOT crying!

well, maybe a little - which is Jaci's (and the writer of this story's) fault ...

DogSig.png

A Sweet Story

joannebarbarella's picture

I kept waiting for a miracle for Charlie, but it was not to be, at least not in that fashion. The miracle was in his enjoyment of the fair.

Family

is everything...

Re: Most people try to do the right things

I don't know much about how well the stem cell treatments work. It does sound interesting and may prove useful for MD as well as MS.

The major difference here is that Charlie has Emery-Dreifuss muscular dystrophy, an entirely different medical condition, description here:

"Emery-Dreifuss muscular dystrophy (EDMD) is a rare, often slowly progressive genetic disorder affecting the muscles of the arms, legs, face, neck, spine and heart. The disorder consists of the clinical triad of weakness and degeneration (atrophy) of certain muscles, joints that are fixed in a flexed or extended position (contractures), and abnormalities affecting the heart (cardiomyopathy). Major symptoms may include muscle wasting and weakness particularly in arms and lower legs (humeroperoneal regions) and contractures of the elbows, Achilles tendons, and upper back muscles. In some cases, additional abnormalities may be present."

Emery-Dreifuss MD usually strikes in the early teen years and results in patients being wheelchair bound within a few years.

A bit more information on Emery-Dreifuss MD here:

"In most cases of Emery-Dreifuss muscular dystrophy resulting from mutations in the LMNA gene, this condition has an autosomal dominant pattern of inheritance. Autosomal dominant inheritance means one copy of the altered gene in each cell is sufficient to cause the disorder. About 65 percent of autosomal dominant Emery-Dreifuss muscular dystrophy cases are caused by new mutations in the LMNA gene and occur in people with no history of the disorder in their family. In the remaining cases, people with this form of the condition inherit the altered LMNA gene from an affected parent.

Rarely, Emery-Dreifuss muscular dystrophy caused by LMNA gene mutations is inherited in an autosomal recessive pattern. Autosomal recessive inheritance means two copies of the gene in each cell are altered. Most often, the parents of an individual with an autosomal recessive disorder are carriers of one copy of the altered gene but do not show signs and symptoms of the disorder."

In Charlie's case, I was working from the autosomal dominant perspective. Charlie has slight cardiac problems now, but those will increase over time as the muscular dystrophy progresses. Charlie has been experiencing contractures for almost two years, possibly longer.

The MD wasn't discovered until after Charlie fell during the summer. Hence the diagnosis that was given by the doctors.

Stem cell research is constantly breaking new ground. Perhaps treatments for MD, MS and other conditions will be found soon. I hope so.