Current progress

July 14 marked the 5 year anniversary of Shade’s first stroke and around the 1.5 month mark since his second stroke. (That day was pretty horrific in the news, what with the Bastille Day situation in France, so I didn’t bother posting.)

What’s his progress right now? Well, let me tell you.

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Shade and Kyle on Xbox. The sling keeps his arm up, but he can’t quite use his fingers.

The left hand and arm: Shade’s working on getting that left hand and arm working. I stretch them in the mornings and evenings. His left fingers contract, and thus tend to curl into a claw, so I stretch out the fingers until the contractions stop and he can keep them straight. This doesn’t last too long. It will curl back up. His grip is improving but he still can only hold onto very light things. He has trouble turning his wrist over, let alone open his fingers in that position, (think the waiter’s tray hold). His arm feels like there’s a catch inside. When it’s contracted at a right angle (most of the time) I can only pull it down a few inches before it stops. I then have to force it down. So I work his arm like an old timey water pump, up, down, up, down, until it loosens up. I also massage his shoulders and deltoids, triceps and lats to loosen up the areas. Then we do straight arm raises. I have to fully assist him to do this as he can’t raise his arm much higher than his chest, if that. A few days ago, I tried putting his left arm in a sling so he could try to use it to play video games, but it got very frustrating for him as his left thumb was fairly useless. I’m going to try and alter the controller so he can do most the stuff with the right thumb.

Left leg and foot: Shade can no longer keep his balance because of the weekness in his left leg and foot, so I have to maximum assist him in all ventures from going downstairs to bathroom breaks to getting to the dinner table. Exercise is draining. His leg shakes with fatigue after a little exercise. When he sits on his wheelchair, he has trouble getting the foot on the footrest as his leg won’t contract that much to pull the foot back. His foot turns inward and he lands on the outside of the foot, which means he can easily roll it (and has a number of times) unless we concentrate really hard on placing his foot flat on the floor before taking the next step. The ankle is very stiff. It has lost all flexibility and does not move when I ask Shade to rotate it. Basically it is a stiff lump on the end of his leg. His big toe does do this weird bouncing thing, which he can’t control. I try stretching out the ankle but it’s a tough one. Lots of resistance. I stretch his calves and hammies which tend to loosen a bit. He usually needs a long rest after this.

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Munchies with the CFP bunch.

Socially: Shade’s has had lots of friends and family stopping by, which is great. Thanks to all who have spent time with him. He had a crew from Central Florida Prep, his school, come and hang out today. Believe me, that provides more healing than you could know. Shade copes better when he knows there are people out there willing to spend a little time with him. It helps mom and dad, too.

 

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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.)

It’s complicated

My car is a piece of junk. It’s a 2000 Honda Passport, which means it has a solid engine. The engine will probably be running in the year 3000 because the Japanese know how to make a long-lasting engine. But all the other parts on the car are sloughing off as if it had automotive leprosy. The cooling system, the A/C unit, the radio, the door handles, the windshield wipers, the window tinting, the starter, the driver’s side front wheel — they’re all failing. My car was named Mr. Coffee by our nephew Tikin, because it sounds like it’s percolating a fresh pot. When I open the hood, it looks like the guts of a terminator with irritable bowel syndrome. It’s all so bloody complicated.

And yet, compared to the human brain, it’s as complicated as a block of wood. And all those problems, though massively irritating, are relatively minor compared to even a small brain glitch. A mechanic with even rudimentary knowledge of vehicles could fix everything on my junk wagon in a week. And even if I got overbilled by double the value of parts and labor, it wouldn’t push our shaky financial situation of the bottomless cliff of debt.

Have a little faulty wiring in your thinkbox, however, and you may as well put on your wet suit because the tsunami of financial shit is going to drown you pretty quickly. We’re on a slowly deflating dingy waiting for the first big wave of bills to hit. And today something happened that tells us there will be a second big wave closely behind it.

A few days ago, Shade woke up feeling very lethargic. His therapists mentioned they noticed a change in his personality. He wasn’t the happy-go-lucky jokester he normally was. Very unresponsive. And he couldn’t keep up with the therapies. The doctor canceled his afternoon sessions. Aitza assumed it was maybe depression because it happened the day after I left after visiting a few days. The following day he was back to his old self.

Shade shows off his veins before getting an IV for his MRI tonight

Shade shows off his veins before getting an IV for his MRI tonight

Well, today he did it again. He was disoriented. He couldn’t lift his arm as high as he had previously. He screwed up basic addition problems. He didn’t laugh at jokes. And it took two therapists to help him walk as he couldn’t place his feet properly and kept listing to the left. Brooks Rehab Doctors Prudencio and Spirres consulted with Doctor Trumble back at Florida Hospital and they thought it wise to get more tests on Shade. So they put him in an ambulance to Wolfson Children’s Hospital PICU in downtown Jacksonville. He’s going to have another MRI, MRA, and MRV with an angiogram to see if there’s anything going on in his wiring. Not that they could really do much even if they found something. Aitza will be here with him for a day or two. Hopefully not more, though we don’t really know until we get the results of the new tests. (They just wheeled him out.)

This should make me appreciate the relative simplicity and affordability of my car. But it doesn’t. I hate that POS.

Roller Coaster

Orlando, our “City Beautiful,” can’t seem to get a break from heart-wrenching headlines. First, popstar Christina Grimmie was gunned down by a nutjob at the Plaza. Then another evil bastard murders 49 people at Pulse. And now a two year old child is dragged into Seven Seas Lagoon at Disney by an alligator and is still missing. The emotional pain in our town is at a peak, and it feels as if it may never stop.

Many of us have been there on a personal level, as well. One tragedy hits, you and your family are at your most vulnerable, and then, bam, you get stomped on again and again.

Every roller coaster, no matter how many gut-turning twists and dives it puts you through, eventually stops. Just hang on tightly, scream your lungs out, and then remember to breath and smile at the end.

That’s the cheesiest load of “Chicken Soup” tripe I’ve ever written. Sorry. I want to write something inspirational in the wake of all this death, but it all sounds trite and false. I don’t know if the roller coaster ever stops. Some days I swear the track just ended midway through a plummet and I’m diving headfirst into concrete.

IMG_1200But roller coasters can be thrilling, too. For example, Shade gripped my hand this morning with his left hand. All digits were firing. He engaged all his fingers and his thumb. It wasn’t a strong grip and it took all Shade’s mental effort to make the hand work, but he did it. He’s still got years of therapy ahead of him before he’ll be able to get back to where he was a few weeks ago before the second stroke, but we now know that the connections are there and full recovery is a possibility. Maybe this is the slow down at the end of the rollercoaster. Maybe it’s that little pause at the top of the highest hill before it goes careening willy-nilly into the madness again. Without a map of the track, we’re racing toward blind curves. Guess we can choose to be terrified by that unknown future or we can appreciate the possibilities of that unknown. We’re choosing not to live in fear, despite the terrors that may lurk ahead. Let the next curve come.

 

The Adventures in Therapy

Yesterday I had the day off so I got to spend it with Shade up in Jax as he went through his various therapies. The Brooks staff have a wide range of fun and engaging therapies that they employ for their patients and for dads who get bored easily and need entertaining. 

When I first arrived, Shade was getting his groove on to some music therapy, beating a drum to Bon Jovi and working in some fancy dance steps. 


He then practiced walking with therapist Matt. Matt scooted along on a rolling stool, supporting Shade with his shoulders and guiding Shade’s steps with his hands. Shade nearly burst a gut when Matt pointed to a gym pad and said, “Ok, Shade, jump on the mat.” That nomenclature could be a serious problem if he ever did therapy with a professional wrestler. 

Shade then had a session with the opthalmologist. We explained to the doc how his eyesight is fine but he’s had horrible double vision now for 5 years. His right eye not only is pushed up and to the right, causing a second  image at a diagonal to the left image, but it also is twisted 15 degrees in the socket. Why the original stroke caused this is anyone’s guess. That’s why correcting glasses can’t do any good. Even if you get the two visual images on top of each other, one is twisted 15 degrees. 

They devised a crafty solution: opaque tape on clear glasses that obscures half the lens. So at any one time he’s either looking out the left OR right eye but not both. Yet the opaqueness allows some light through. A simple solution to a complex problem. 5 years at a top neuro-opthalmologist could not come up with that. 

At lunch, Shade was overjoyed when he got upgraded to chewy foods. That meant he got pizza. It took him an hour to eat it, but he didn’t mind. 

After lunch was free recreation. During this time he was allowed to go down to the play room and do what he wanted. We played air hockey for about 45 minutes. Violently smacking discs around is quite therapeutic.

He also tried his hand at pool. His left hand couldn’t hold the cue stick but we adapted. He slotted the stick through the clear tube on his arm harness and was able to shoot a few balls. 

Finally we went outside to the gardens and shot some hoops. He practiced dribbling the ball with his right hand and he kicked it a few times with his left foot. 


This will be the last time I can visit until Jun 13 because of work. I’m bummed that Brooks is so far away but it’s definitely the right choice for Shade. He’ll be there until June 30. I expect huge improvements when I return from my travels next week. 

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.

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