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 …

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“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.

Walk this way

Mayan and Aitza are galavanting in Manchester, England. This was Mayan’s birthday present from us in November, and Mayan saved up his Christmas money to spend over there. They are windowshopping and seeing the sites. Then tomorrow they will see a Manchester City game. (Proper football, not the American kind where they hardly use their feet.)

Meanwhile, Shade and I have been abandoned at the house. (I said that just to tick off Aitza.) So we decided to have our own adventure … right down the street. Shade walked the entire length of our street without crutches or walker, while I helped him balance by keeping my hands on his shoulders. That helps steady him so he can focus on his pacing and speed. When we saw something interesting, we stopped to check it out. Here are some of the fun, weird things we experienced.

Emergency cut short

Emergency cut short

A few driveways down was an abandoned Matchbox firetruck. Perhaps it ran out of gas on the way to the fire or got bogged down in the storm that hit us this morning. We believe the driver hitchhiked back to the station because there were tiny footprints leading to the street.

Welcome to the funhouse.

Welcome to the funhouse.

We came to the realization that all cars are funhouse mirrors. The reflections are not slimming. We don’t suggest looking at a reflective car door if you are attempting a New Years resolution diet.

Yuletide detritus

Yuletide detritus

Dry brown Christmas trees have popped up the last couple weeks on the curb. But there are still a few houses in the neighborhood that are decorated with Christmas cheer. (Last year, we kept our decorations up into February.) One house, however, got all the stuff down and then got called away on some emergency. (Perhaps mom looked at her reflection in the car door and now has to be talked down from a ledge.)  So Frosty, Santa, Tigger and Pooh are chilling out in the driveway, along with piles of lights and other assorted festive accoutrements.

Wood you hole this for me?

Wood you hole this for me?

Shade found a piece of wood with the knothole knocked out. Legend says, if you look through the knothole, you can see the invisible street gnomes. This can be disturbing because invisible street gnomes are notorious for not wearing pants. That didn’t stop Shade from staring through it for five minutes.

Shade shows you a trick.

Shade shows you a trick.

There’s no shopping on our street. (Plenty of looting, but no shopping.) But occasionally you can get a street score. Shade found a cool, reflective sticker on the ground to put on his desk. Woo hoo, free stuff!

Not quite an overseas adventure, but it was an interesting promenade, and the longest walk Shade has done in ages. Shade was exhausted afterward. Lately we’ve been trying to get away from those walking assists like crutches and trying to work on proper walking stature like tightening his core, keeping his shoulders back, and moving his arms so that they swing counter to his legs. When he really focuses, he is able to walk by himself for 10 or more steps. Today he did 16 on the sidewalk. If Shade keeps this up, he may just walk to school one morning.

Goodbye Dens Sapientiae

Ice pack after yanking Shade’s teeth

Shade had his wisdom teeth removed today. They yanked those suckers right out of his skull this morning. Now he’s on a soft diet of jello, yogurt and bloody gauze.

The jerk that named your third molars wisdom teeth — Dens sapientiae — was probably around before the birth of Jesus.  It’s like the lamest joke from pre-Christianity’s worst hack comedian. That guy was a total asine sapientiae — wise ass.

Wisdom teeth, like every other vestigial body part (tonsils, appendix, male nipples), are useless and bothersome, and often have to be removed before causing serious damage. My wisdom teeth got pulled out when I was about Shade’s age. Both Shade and I still have our appendix, tonsils, and nipples, which have yet to do serious damage, though they could still go off like unexploded bombs at any time.

The unwise part of wisdom teeth is that they don’t come out until you actually care about what your teeth might look like, i.e. when you’re a self-conscious teen. Then they crowd your front teeth, screw up your smile, and cause all sorts of dental problems until they’re forcibly removed like a bunch of drunk redneck party crashers at your daughter’s Quince Años celebration.

They’re annoying buggers that should have faded out of the gene pool after the first snooty Cro-Magnon turned down the Neanderthal’s mammoth jerky for a decent filet. And yet they keep popping up. Except in Aitza, who was born without them. What the hell, Aitza? You couldn’t pass those genes down to our kids?

Meanwhile, Shade spends his second week in the last month of 2015 in bed with an aching noggin. Here’s hoping that 2016 gives him a break from surgeries.

Recovery update: Tired

Shade’s friend Cody came over yesterday to hang with him for a bit. They did the regular post-brain-surgery boy stuff. You know, noogies, wrestling, roundhouse kicks to the head. Okay, maybe they just sat in his room and talked. He enjoyed it, but it also wiped him out. By six p.m. he had passed out on the couch.

Today he’s been really feeling the effects of the Gamma Knife rabbit punch to the brain stem. He’s been lethargic and very sensitive to light and noise. He spent all day lying in his brother’s room with the curtains drawn. (Mayan’s room is darker.) He’s also been dealing with a nasty throbbing headache. This might be from the swelling in his brain, or it may be from the four clamps that were screwed into his skull to hold the Gamma Knife helmet in place. (Can’t have a wobbly helmet during brain surgery.) The skin around the clamp areas is very sensitive, and he doesn’t like even a soft pillow touching the areas. Aitza’s had to do some creative pillow arranging so he can rest.

We’re going to keep him out of school for a bit until he’s feeling a bit more energetic and clear headed. He was supposed to have midterms but his noggin couldn’t handle that right now. Just like a high-school boy. He’ll do anything to get out of a test.

 

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