Hanging in the hotel

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Shade enjoys a smoothie. He can’t have solid food until Tuesday. Notice his “Shadenator” shirt, which Julie Creus made him after his very first stroke in San Antonio, in July 2011. It has buttons down one whole side, so we don’t have to put the shirt over his head.

Shade was discharged yesterday around 12:30 p.m. The night before went smoothly for him, mostly sleeping. He was so out of it, he didn’t even feel when they removed the catheter. I wince just thinking about that. Aitza stayed with him and had to sleep on a recliner that didn’t recline all the way. Luckily, she’s the size of a hobbit, so she curled up like a cat and slept just fine. If I had been on it, I would have looked like Buddy the Elf with legs and arms hanging off the ends.

We brought Shade back to the hotel after discharge and he slept in the hotel for a few hours. Then we took him for a ride in the car to get some fresh air and let him hunt a few Pokémon. He’s been unable to feed his addiction for two days and Pokémon just released a new feature called Research, which are like missions to collect certain Pokémon or engage in battles. It was a good hospital release gift for him, but he did criticize the city of Durham for having very little Pokémon activity. Guess he’ll never move here.

Shade didn’t have much pain yesterday, but today his leg is aching, especially when I help him stand up to transfer to his wheelchair. His jaw and lip feel fine, except for the one time I helped him out of bed and banged his face against my shoulder. Dad is a clumsy ox. He’s only taking Tylenol for the pain. He had Oxycontin right after the surgery, but he doesn’t need that level of pain management anymore. (Or addiction. Pokémon is enough.) The doctor also prescribed Doxycycline for his acne. As acne is really just a skin infection, the surgery scars will heal much better if his face clears up. No need to further irritate healing skin.

The Courtyard Marriott hotel where we are now staying is lovely. Compared to the crack-house accommodations at Quality Inn, it’s the Ritz. We’re on the third floor overlooking the fire pit and pool. It’s peaceful and the hallways do not smell like farts and pot smoke.

However, yesterday there was a group of motorcyclists, maybe 100 people, checked into the hotel. They were having a rally during the day, and the parking lot was full of shiny bikes roaring back and forth. Then at night it was time to party … around the fire pit right below our room. They pulled out speakers and blasted music. They were laughing and talking and yelling. Bikes were revving in the parking lot. I kept looking out of the window, kind of wishing I was down there with the party, as they had beers and Jell-O shots and mason jars full of dubious liquids. But I was busy writing some articles, and plus we had to get Shade ready for bed. Doctor’s orders are to brush his teeth, but don’t go up into the lip where he has stitches. Then he has to rinse his mouth multiple times with salt water to keep the area clean and help the healing process. He’s also not yet ready to roll himself to the bathroom, so I help lift and lower him from bed to bathroom, from bathroom to bed.

We finally got Shade prepped for sleep, but the hubbub downstairs irritated him. Aitza put an earplug in his right ear, but she couldn’t on the left side where the incision was made. So he had to suffer the noise with a pillow over his head.

The party petered out by 9 p.m. I assume the revelers moved the scene to some local bars and restaurants. I went down shortly after to have a beer by the fire pit. There were four guys left. One of them—a six-and-a-half foot, 350-pound monster—was passed out in a chair. His buddy was wiping down the front of his soiled shirt with a towel. Then the three semi-sober guys roused this drooling linebacker and managed to lift him out of the chair. They corralled him, one on each side and one behind, as he shuffle-staggered toward the hotel lobby door, and right by where I was sitting. Each shambling step involved a stop and a glaze-eyed wobble. At one point he loomed right over me, and he swayed like a tree hewn by lumberjacks. For a second I envisioned a river of vomit exploding from the putrid reservoir in his guts and dousing me head to toe, then his bulk toppling, dragging his three helpless friends to crash down on me and crush me to death. A horrific, malodorous way to go, but my funeral would be hilarious. However, his boys kept him upright and he shuffled inside … hopefully to bed and not on a motorcycle.

I was supposed to leave on a flight this morning as Mayan is back in Orlando and has school tomorrow. He’s been staying at friends’ houses over the weekend. But last night by the fire, I was thinking that I couldn’t leave Aitza by herself to wrestle Shade back and forth for three days in the hotel, in the car, to the hospital and finally to the airport on Tuesday. I flew up here on a standby flight, which was easily changed through Virgin Holidays, Aitza’s company. So now I’m staying until Tuesday. Mayan will stay with his friend or my brother. He’s been so independent lately and spends so much time hanging with friends that we barely see him in the house anyway. Teenage life.

Happy Easter everyone. Remember to bite the ears off the chocolate bunny first so it can’t hear where you hid its eggs.happy-easter11

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Doctors, Diners and Dumps

The line in front of Shade’s ear is where they will make the incision to insert the harvested nerve. the writing says “normal.” The doctor forgot to but “ab” in front of it.

Travel day today. We flew in from Orlando to Raleigh-Durham, departed at 9:30 a.m. I was on standby, but the flight had 30 empty seats so the attendant sat us all together and gave us the seats right behind business class. More legroom. And we boarded first, so no slow shuffle to the back of the plane.

When we got to Alamo and handed our reservation to the attendant, he traded up our economy car for an SUV for free. Said he thought we would need the extra room for the wheelchair. Great guy.

This is one of the benefits of traveling with Shade. People like to upgrade him. Unfortunately, it didn’t work with the hotel. We’re at what Aitza has dubbed the No-Quality Inn. It’s awful. Carpets from 1962. Sagging popcorn ceiling where a previous leak had swelled the stucco. The hallway smells like stewed mildew. The bathroom door is too narrow to allow a wheelchair, so I have to wrestle Shade through the door every time he has to take a whizz. It is better than a motel we once stayed at in Boone, NC, which overlooked an empty pool full of stuffed trash bags, a rusting grill and a foot of green sludge that seemed to have grown tentacles. Suspicious parking lot deals carried on into the wee hours. I believe they had hourly rates. That was the worst hotel we’ve ever suffered through. This is a hair better. But what it lacks in basic living conditions, it makes up for in descriptive storytelling potential.

We had time before our 2:30 p.m. appointment to stop at Elmo’s Diner – a bit of a hometown institution in Durham. Great biscuits and gravy and super-thick chocolate shakes. Shade scarfed down as much food as he could today because he won’t be eating solid food for a while. Fasting tomorrow, liquid diet for a few days, and then soft, mushy food. Savor that bacon cheeseburger, Shadenator!

At our doctor’s appointment, Dr. Marcus walked us through the procedure. After Shade is knocked out, the doc will make two or three small incisions in Shade’s left calf to harvest about 16 to 18 inches of nerve. (The thought makes my sphincter tighten.) He’ll then make an incision along the front of Shade’s left ear and a bit down the jawline. The nerve will be attached to live nerves in this cheek. Then using a very narrow “feeding tube,” he’ll snake the nerve along his upper lip. An incision will be cut at the inside top of his lip to help feed the nerve along. And then they’ll stitch him all up and let the nerve start taking root. The procedure will take about four to five hours.

In nine months, when the nerve has branched out sufficiently, we’ll return for Shade’s follow up surgery – a muscle graft. Dr. Marcus said he’ll wait until then to do his eye brow lift as he’ll be working on the right side. This time the surgery is all left.

We are currently prepping for bedtime. We have to be at the hospital at 9 a.m. We’ll keep you updated during the day on Shade’s Progress Facebook page, and I’ll give you an entire rundown tomorrow night on the blog.

Smile time’s a comin’

Shade sporting the Tarantino Suitcase, a hitman’s goatee that we had to fill in with Sharpee to connect the stache to the beard. Universal policy. It lasted about a week until Aitza put a stop to it because all his white sleeves were stained gray from where he wiped his face on his sleeves. Doh!

Shade is embarking on a new journey. This is sailing across the uncharted Atlantic to search for a new world. We’ve booked a surgery for him. Nerves harvested and grafted. An electric journey across his face. It’s going to do wonders for his smile.

On Thursday, at 2:30 PM EST, March 29, 2018, we travel from Orlando to Raleigh-Durham for Shade’s appointment with Dr. Jeffrey Robert Marcus, MD of Duke University. He’s one of the top Plastic and Reconstructive Surgeons in the country. They did various scans and tests and determined he was a good candidate for a nerve graft. Of course, I told you all this on the Facebook post for his fundraiser so sorry to be redundant.

So this Friday, he’ll be prepped for surgery. After he’s under, Dr. Marcus will remove a nerve from his calf and graft it from his left cheek to his right. They go in under his lips and insert the nerve.

They’ll also lifting his right eyebrow and lower eyelid. It doesn’t close properly and tends to droop, causing his tears to run out and his eyeball to dry. It’s painful and we have to constantly keep his eye lubed and taped at night. The stitch will pull the corner of his right eye up so it holds the tears and potentially allows him to close his eye.

Then comes the recovery period.

I’ll keep you all informed about Shade’s Progress during this procedure. Here’s to symmetrical smiles and blinking eyes.

Shade’s Employed!

Shade signs the paperwork to become a Universal Employee.

On July 14, 2017, on the 6th anniversary of Shade’s stroke, and just a month plus after graduation, Shade signed the papers to make him an official Universal employee. Orientation starts next week, and then he’s knee deep in Lard Lad donuts. Actually, he’ll be on restaurant row in The Simpsons land … or island … or whatever creative term they use to name the area.

Here’s a Shade fact: When he was kicking on Aitza’s cervix in the hospital, I said to Aitza, “You better hurry and get him out of there because the Simpsons is coming on at 6:00.” Sometimes I’m a jerk. Just sometimes. Well, Aitza complied and squeezed out a feta-covered Gollum fetus that we called Shade, and after he’d been spanked and shaken and given the rough towel treatment, we were back in the recovery room. Aitza was sipping a Guinness. Daddy was gulping it and holding Shade in his arms, and he grabbed the remote and turned on the TV and low and behold, right there on the screen was The Simpsons opening sequence. And Shade’s crystal eyes gazed upon it. And it was good. (Cue angel song!)

He also climbs trees! What can’t he do?

18+ years later, he’s come full circle. He’ll be a greeter in the Simpson restaurants. (Editor friends, I know I started a sentence, let alone a paragraph, with a numeral. Forgive my blogging.) Shade’s got potential to acquire new skills and meet new friends and learn what he’s capable of. Stay tuned …

“Made in the Shade” Game Night

Shade in shades

Join Shade Crampton for “MADE IN THE SHADE” GAME NIGHT

What: Made in the Shade Game Night
When: Monday at 7 p.m. Schedule will be posted on http://shadesprogress.com
Location: Quest Church, 1450 Citrus Oaks Ave, Gotha, FL 34734
Second floor of main church building in the lunchroom.
There’s plenty of parking next to the church.

“Made in the Shade” Game Night is open to anyone tween and up who likes games: high schoolers, middle schoolers, adults, 500-year-old vampires, intelligent alien life forms, bigfoot. As long as you like to play, you can come. Feel free to bring your own games, too. We can play in big groups and in small groups or just one on one.

We also want to encourage folks with disabilities to come play with us. This night is especially for you to meet other like-minded people and have a little fun. If you know someone with a disability that might enjoy this night, bring them along.

What kind of games will we play? Board games, Minute to Win It games, card games, guessing games, mind games, drawing games, strategy games, goofy games, roll playing games, dice games, you name it. Shade wants to play all sorts of games and he wants you to play them with him. (Okay, we won’t be playing video games because we can’t afford to buy 20 Xboxes. Plus, we want to interact like social humans.)

We will put a donation jar out each week. If you feel like donating a little money, we’ll use that to buy different games for future weeks. No pressure though.

Email Vcrampton@gmail.com for more information.
Or check http://shadesprogress.com for schedule.

About Shade Crampton: Shade suffered a stroke in 2001 at the age of 12 and a couple more in 2016 at the age of 17. He uses a wheelchair to get around. He has memory and processing issues and has trouble using his left arm and standing. But he’s a smart, hilarious, down-to-earth teen, who won’t let something as trivial as a debilitating stroke get in the way of his fun. He’s a whiz at backgammon and he knows every single Pokemon on the planet. He wanted to start this game night so other people, with and without disabilities, can socialize and have fun. Come out and join us.

Read more about Shade’s battle and triumphs at http://shadesprogress.com

Hero’s Journey

Shade is home after five weeks in multiple hospitals. After a second stroke, and then a third stroke. After multiple sessions of MRIs and MRAs and angiograms. After weeks of intensive therapy at the best damn therapy hospital I’ve witnessed. (We’ve seen a few, and no disrespect to the other fine establishments, but Brooks was extra superduper special with ice cream.)

Shade had gotten in the rhythm of six sessions of therapy daily with an army of occupational, physical, speach, music, and recreational therapists, and their assistants, interns and volunteers helping him through the tough job of getting his left side to wake back up. Not to mention the fantastic doctors, nurses and techs checking up on him and the meal staff taking his order and delivering his three hot meals to his bedside. Shade became a veritable celebrity patient amongst the staff. On his graduation day, when he gave his speech, it was accompanied by laughter and tears from the gathered crowd. Employees kept popping into the room the last day to say goodbye.

And then he was released. Everyone take a deep breath and sigh. It’s all over.

Except for the part where Shade has to get used to living in his house, which he used to be able to navigate easily by scooting, crawling and, most recently, walking. Except now he can’t use his left arm. Despite the great strides he’s made on that side, it’s not enough to help him get down the stairs, even scooting on his bottom. He can’t raise his arm above his shoulder or support himself on a handrail. He can very slowly close his hand, but he cannot maintain even the slightest grip and opening  his hand is extremely difficult. Thus, no picking up anything, even a sock. Forget tying a shoe. His left leg is a bit better than the arm, though it’s still much weaker than it should be. It tends to drag when we assist him with walking and he often rolls the ankle or step on his other foot. He doesn’t have the strength or balance to stand. We’re planning lots of therapies to work on this, but it’s a road that disappears into fog. We don’t know how it will end.

After the first stroke, and the recent second and third strokes, he never complained or questioned the reasons. But the day after Shade and Mami got back home from Brooks, Shade came to the realization of what he’d lost after putting in so much time and effort to recover. For the first time ever, he turned to Mami and said, “Why did this have to happen again?” He didn’t dwell on it, but the thought is now lingering there.

I wonder the same thing. My big brain tells me that this happened by chance. Random mutations in some tucked away DNA strand in the embryo that became Shade. The small flaw in the architecture that blew it up. Like the exhaust port on the Death Star. (The incompetent space engineer that designed that beauty got fired. Literally.)

The part of my brain that believes in the force and elves and the Greek gods and awesome (Adj. inspiring awe) stories wants to blame some invisible sky man or some virulent spirit or a glitch in the Matrix for the barrage of shitty luck that’s plagued Shade. After all, a story is always better with an antagonist. But blame wouldn’t help the situation at hand.

Shade’s at that point in the hero’s journey where he faces the abyss. He’s overcome great odds only to be thrown down hard, his lowest point, where it would be easiest to give up. Like when Luke got his arm lopped off by his daddy (Noooo! That’s not true. That’s impossible!) and then fell into the shaft and hung on with one arm for dear life on the ass end of Cloud City, questioning everything he ever knew and waiting for the worst. Sure, his arm was gone, but it was the damage to his psyche that threatened to make him quit.

Guess who got Luke out of his predicament. His friends. After sending out some force instant messages (Come get me), he got picked up by Leia and Chewie (and Lando, too), and they got him back to working order (with some robotic assistance.) And then he saved the galaxy … for a while.

That’s what Shade needs now. He needs good friends who are willing to spend time with him, exercise with him, play games, or just chill. We’ve got the therapy lined up and the doctor’s appointments scheduled. If you can help with the friendship part, that would help immensely.

(By the way, thanks Cody for coming over today and hanging out and all his friends that Facetimed him in the hospital.)

This Path

Back in my college days, I read a book by Richard Bach entitled “One,” in which the main character encounters alternate paths of his life, all of which were happening simultaneously. To boil it down, it’s Fate meets Chance: the particular life you are living is one of endless lives that have happened and could happen and yet this particular life couldn’t be any different. A choice, a happenstance, a situation is merely a turn down a path that was already there and could be no different because it’s that path. And yet another quite different path could be chosen — or stumbled into or thrust upon — because that path is there, too. Infinite options all laid out.

Alright, maybe that’s a bunch of hippy shit, but it helps me cope with Shade’s recent stroke Saturday, May 28, his second in five years. Aitza, Shade’s blessed mother, the rock of our family, was called from slumber by Shade’s distressed calls last Saturday. He couldn’t move his left side. She dialed 911 and he was rushed to Florida Hospital.

I recieved the call from the other side of the damned continent, The Gorge in Washington, where I was working the Sasquatch Festival. I was shooting a Chet Faker concert for Yahoo, my first time behind the camera at a live music venue, so I was pretty stoked. As I focused in on the singer, I felt my phone vibrating in my pocket. It stopped, and then went off again. And again. And again. I knew something was wrong before I ever pulled the phone from my pocket.

Many already know the circumstances through Aitza’s Facebook posts. (Those posts were all her, by the way. And I think she’s a damned great writer.) For those unaware, the gamma knife surgery he had back in December caused a blister in the pons (brainstem) which burst. It wasn’t a huge bleed like his first stroke, but it did release blood, which caused swelling in the brain and the paralysis on his left side.

Aitza and I discussed what I should do. Despite his injury, Shade’s life wasn’t in immediate danger. And obviously we were going to need the paycheck from this job to pay the ominous mountain of hospital debt now looming once again on the horizon. So we both decided I should stay. It killed me, but it was the best thing. God bless Facetime. I at least got to see and talk to my boy.

Florida Hospital for Children ran tests and monitored him. The bleed area is contained so now it’s a waiting game. Yesterday he arrived at Brooks Rehabilitation in Jacksonville, which is considered one of the top rehab centers in the country. We’ll update you more on that. (To join Shade’s Facebook page click on the column to the right.)

When I finally made it back to Orlando at 6:00 a.m. Wednesday, I drove straight to the hospital to find Shade and Aitza asleep. It was a weird deja vu moment recounting 2011, my family hunkered down once again in the PICU. But this time, I wasn’t afraid. We’d already battled the beast once and crushed it. This pathetic attempt to strike again will face up to the same strength that destroyed it before.

I only had to spend one day in that hospital to know this. Because Shade was cracking jokes and wooing the nurses and trying his damnedest to move those limbs. And yeah, he cried a few times, because there’s genuine loss, near half his body. But he didn’t drown in sorrow. It was more like a quick rain gust that washed over him before the sun poked out. That boy is the strongest person I know. (Mom’s a close second.)

There’s a path in which our family falls apart. There’s a path in which Shade never had a stroke. There’s a path where Shade died. We’re not on any of those paths. We’re on this one, the one where Shade’s healing, and our family is going to love each other and laugh with each other no matter where the path takes us.

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