“So I turned myself to face me
But I’ve never caught a glimpse
Of how the others must see the faker
I’m much too fast to take that test” — Changes, David Bowie


Shade at Christmas. The glove helps straighten out his hand so it’s not in a fist all day. 

It’s been seven months since my last post and almost nine months since Shade’s big stroke at the end of last May. Before that, Shade was relearning to walk after five years of recovering from his first stroke and he was doing well. He could do over 100 walking steps by himself. He could get himself anywhere he needed with his hands, whether scooting across the floor or pushing his wheelchair. He could lift himself to the counter and stand to brush his teeth or put dishes away.

Here’s recap of what that stroke in May did to Shade: It stole all he’d accomplished from him.

I’d just like to point out that I said that last line without using the foulest of profanity or cursing every diety that was ever conceived by man, which is how I normally express the situation. So that’s a step in the right direction, right?

Shade still has paralysis on his left side. Not total paralysis. He has limited mobility in his arm, though it’s tough to control. He can’t fully extend it or straighten it over his head without help from someone. Sometimes he will try with all his might to open his hand, but it will stay squeezed in a fist. Other times he want’s to grab something and his hand won’t close. His brain works against his will. He can’t hold anything heavier than an empty water bottle, which has really put a dent in his Shake Weight workouts. He can’t move his wheelchair wheel on the left side. But sometimes he can grip small things. Sometimes he can reach out a little. That means it’s working some. It’s just at 3% of optimum ability.

He gets occupational, physical and speech therapy weekly, though they work more on helping him adapt to his situation instead of trying to overcome the limitations. Our friend Danny, however, comes over weekly and works him hard to expand his abilities. Danny makes it real, as if Shade were training for a sports team. He cuts Shade no slack.  He even smack talks with Shade, which Shade loves. Danny is the ultimate blessing because he foresees progress where others don’t. Everyone else says, “Who knows? Maybe; maybe not.” Truthfully, no one else has the balls to say there may be progress because of the litigious nature of our society. Doctors aren’t going to put themselves at risk for malpractice by giving a patient hope. Because hope is unknown. It’s fleeting. Understandable. If I was a doctor, I’d probably do the same.

The last stroke certainly did him no favors socially. Now he can’t even roll around to socialize amongst the students at his school, Central Florida Prep. He’s reliant on others to get him from place to place. He’s got buddies there that will roll him to and from class, and they all treat Shade kindly and hang with after school until I pick him up. And the teachers are lovely and protective of Shade and bend over backward to help us. Recently Shade even became Vice President of the school’s anime club, which is fantastic for him because it means he’s valued.

But once home, he’s pretty much alone, except for us family. Occasionally on weekends he hangs with his camping buddies, but it’s usually because I’m going to their house, too. He doesn’t have sleepovers like before. Plus, the friends his age are now all driving and going out on dates and having dual enrollment. They’re getting accepted to colleges, and holding down part-time jobs and prepping for their next big move in life. They’re busy. Picking up Shade to go out is maybe a hassle … because of the wheelchair, I’m guessing. Or awkwardness in social situations, perhaps. Or … I don’t know. I’m making assumptions on observations. Could be anything.

Get this. Because of his paralyzed left side, Shade’s one real social outlet that he had left, online video gaming, was stolen from him by that fucking stroke. Curse the gods! (Sorry, I couldn’t hold it anymore. But I’m good now. It’s like a steam whistle. You gotta let it blow occasionally to let off pressure.)

Shade does have one friend who has amazed us. His name is Nick. He lives in our neighborhood and he visits on a regular basis. Not because we ask him. Not because he feels a need to do a good deed. He just shows up to hang with Shade, one on one, because he has fun with Shade. They talk Pokemon and anime and video games. He walks Shade up to Walmart and Game Stop to shop. He has no problem just sitting on the couch with Shade for hours, sometimes not even talking. He even crashes on our couch sometimes after school, which is foolish because Shade will find anything in the cupboard and put it on Nick’s reclining body, so when he wakes up, he’s covered in bananas or Legos or anything handy and uncomfortable. Nick is another great blessing. He doesn’t even know how much we appreciate him because, for one, he doesn’t read this blog, and two, we don’t want to turn it into a weird thing. You know, “Thanks for hanging with our stroke victim. Are you doing it for community service or did your church put you up to this?” No, he’s just a kid that likes Shade for Shade’s sake. But eventually Nick will go off to college. I’m not looking forward to that day, though it will be a great day for Nick.

And I’m not saying others don’t like Shade for Shade’s sake. They do. Others just don’t hang out with him like Nick. Others don’t call Shade out of the blue on a weekday and say, “Let’s chill for an hour.” And for every kid like Shade, there are millions of others in the exact same situation. A disabled life is challenging physically, but it’s not even close to the challenge for that person’s spirit. To suddenly be seen lesser not just in abilities, but in social worth. That’s crushing.

Don’t believe me? How many close disabled friends do you have? I’m guilty. Sure I have disabled friends. I’ve been inspired by those same people. I’ve even written articles about amazing people that I consider friends. But did I really take the effort to develop that relationship? Did I call them out of the blue for coffee or to play a game of backgammon or just to chill on the couch? Did I make the effort to be a true friend for friend’s sake. No. I point the finger at myself, a hypocrite of the highest order. Because when I see my son’s distress and loneliness, I can only think, “How can I expect others to step up to real friendship with my son when I haven’t even done it myself for others?”

Time to make a change.





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.


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.


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.


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. 

Return of the Gamma

elf on the shelf shade

Oodle the Elf sends Shade off at 5 a.m.

Shade had his second Gamma Knife surgery yesterday. For those who didn’t experience the first procedure four years ago, here’s the high-tech definition: A weird space helmet is clamped to his head and then zaps him with hundreds of radiation beams that intersect and cause a miniature Death-Star-type explosion that destroys the naughty area in his brain. Okay, not very scientific. Read the blog from the first procedure for a different (not necessarily better) explanation.

At 5 a.m., Aitza took him to Florida Hospital’s Cancer Institute, where they perform the procedure. By 6 a.m., he was prepped and he was under anesthesia by 7 a.m.

Meanwhile, I was in Atlanta, where I was working the College Football Awards for ESPN. I caught a flight back that morning and went straight to the hospital where I joined Aitza, who was wrapped in a fleece blanket and shivering. Why is it so cold in there? I could set a warm six pack in the hospital hallway, and in 30 minutes it would be chilled enough to drink. (Come to think of it, why am I not taking six packs to the hospital?)

Shade came out of anesthesia at 12:40 p.m. He was groggy and his throat hurt from being intubated, but otherwise he was okay. The procedure was minimally invasive. He had a couple Band-aids over his eyebrows where the Gamma Knife helmet had been clamped to his skull. He had gauze taped over his thigh where the doctors had snaked up a catheter to shoot contrast dye in the affected brain area. That way it shows up clearly in a scan and they can feed that info into the computer for the procedure. They also did an MRI with contrast. Between those two images, they could pinpoint the exact location of the anterior-venous malformation that hadn’t been completely destroyed by the first Gamma Knife procedure exactly four years ago (about 10% of the original AVM).

As I mentioned in the last blog post, the remaining area of the AVM was tiny, and we had discussed whether to go through the procedure as there was a chance that a bit of healthy brain tissue could be affected by the Gamma Knife. Obviously Shade wants to keep as much of that good stuff as possible. But I think we made the right choice to go with the surgery. That problem area was being fed by blood vessels and had started getting bigger. After this surgery, there should be none of the malformation left (crossed fingers, toes, and eyes).

The nurse said not to give him a shower for the day so that the wound areas in his head and leg could heal up a bit, so Shade was a bit crusty as he lay supine on the couch napping. By the late afternoon, he was back to making jokes and acting silly. At bed time, he walked upstairs. He was a bit more wobbly than before surgery. We hope that wears off because he’s been doing well with his walking.

Shade got his shower today. Thank goodness, he was a bit ripe. He’s got a couple pinholes above his eyebrows, but otherwise you’d never know he was in the hospital. There will be a bit of swelling in his brain which hopefully will go away in a couple weeks. We’ll keep you informed on his recovery process.


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