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.)

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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.

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.

 

Dramatic Plot Twist

Inside Fort Matanzas

Inside Fort Matanzas

In a movie, whenever the camera pans across a scene of natural splendor, you can expect something bad to happen. It’s a cinema trope. Make the protagonist comfortable, and then drop a boulder on him. Without conflict, story doesn’t exist. So if a director says, “Let’s capture this stunning snowcapped mountain range glistening in the sun,” you can guarantee an avalanche is coming.

Last week I took Shade camping with the YMCA Indian Guides at Princess Place Preserve in Bunnell, Florida, about 15 minutes from St. Augustine. It’s a 1500-acre parcel of bucolic Florida wilderness. I never liked that word bucolic. It sounds like a respiratory infection. However, I think it fits here as the park is home to historic buildings such as an old livery stable, equestrian trails, a huge salt marsh, massive live oak stands, and Florida’s first in-ground swimming pool, fed by an artesian spring. It’s the epitome of a Southern pastoral setting nestled on the shore of the Matanzas River.

Standing atop Fort Matanzas

Standing atop Fort Matanzas

During the campout, we visited Fort Matanzas National Monument, which guarded St. Augustine’s back door. It’s about 14 miles south on the Matanzas River. The approach is dramatic. We started on the nature path which passed the banks where Spanish soldiers slaughtered a few hundred lost French soldiers who had surrendered. That’s how the fort got its name, which loosely translates to “slaughter.” We took a pontoon ferry across the river toward the looming fortress, giving us a good look from an invader’s standpoint. Guards in traditional Spanish soldier uniforms walk about and explain elements of the three-story stone fort such as the big cannons pointing down river to stop those nasty Brits or Frenchies from sneaking up and causing havoc. Shade climbed up the stairs and ladders to the top, where a large flag flapped to Hurricane Jaoquin’s distant exhales while gray clouds boiled overhead. We got a pretty cool pic of our entire group on the roof.

Fishing in the Salt Marsh

Fishing in the Salt Marsh

Afterward we went fishing in the salt marshes. The sun was positioned perfectly to reflect in the mirror water the cloud-blotched blue sky. We caught no fish (I don’t think I’ve ever caught one), but the view was magnificent. As we finished fishing, Shade’s buddy Cody noticed hermit crabs on the stones by the bridge. I grabbed twenty hermit crabs to tote back to camp for crab racing. I had big plans for a betting ring. We learned that hermit crabs are extremely shy and horrible at racing and within the hour, I had returned them to the salt marsh. We spent the rest of the night enjoying bonfires and brisket.

A beautiful weekend. From a movie standpoint, you couldn’t get more ominous.

The plot conflict came on the Tuesday afterward when Aitza took Shade to see Dr. Trumble. A few months back they performed an angiogram on Shade and discovered that he still has a small nidus, that little tangle of arteries and veins that caused his bleed four years ago. The Gamma Knife treatment performed on him in December 2011 destroyed most but not all of the arterio-venous malformation.

Here’s the dilemma. With each year, his risk of a bleed increases by 1%. The doc said if you’re 70-years old, no big deal. You may get up to a 10% chance of a re-bleed. You’re nearing the end of your rental agreement anyway, so to speak, and making big renovations wouldn’t be worth the risk. But a 16-year-old boy still has a good 60-70 years, maybe more. So in your later years, your percentage of a re-bleed may be 60-70%. The procedure has an 80-90% chance of destroying the rest of the nidus completely. I hate math.

The procedure has its own risks. The location in the pons (the brain stem, which is a dense nerve bundle) leaves him open to some more damage to surrounding healthy nerves, especially a few cranial nerves. Shade’s already got facial palsy and can’t shut his eye, but we don’t know how much more damage to his face it may cause. His coordination might be more at risk, too. Plus, the brain swells a bit when you shoot it full of radiation. Go figure.

The full effect of any damage is unknown until they do the procedure. Afterward, we’d have to wait three years to see if the procedure was totally successful. This would also be his last shot at destroying it because of the level of radiation Shade’s brain would absorb from this second Gamma Knife procedure.

Of course, damage from a bleed would be much more devastating. If it happened at all. Whatever decision we make, it’s going to affect the plot of this movie. I just wish Shade wasn’t the protagonist and that the dramatic plot twist didn’t involve his poor abused brain.

Fantastic Voyage

Shade prepping for angiogram

Shade prepping for angiogram

I’m old enough to remember The Fantastic Voyage. Not in the theater. (It’s possible I heard the audio track as a simmering fetus in the womb.) I saw it on TV sometime in the early 70s, and I was blown away by what the future held. Sexy secret agent Raquel Welch, with her retinue of doctors and assistants, would shrink to a millimeter and drive her submarine through the bloodstream of a sick man, right up to the brain to remove a blood clot. What a fantastically ridiculous piece of fiction!

So, last week Shade went to the hospital for an angiogram. This is a process in which a retinue of doctors and assistants drive what amounts to a submarine camera through his bloodstream, right up to the brain to check out where his AVM took place. This was a real process! It differed from the sci-fi in that none of the surgery participants looked like Raquel Welch. I’m pretty sure none of them were secret agents, either. Also, thank goodness, there were no saboteurs as in the original, so the procedure went smoothly.

What I want to know is how do they know when to turn left or right? Are they using Google maps? Are there landmarks? Is there a backseat driver saying, “Okay, like in thirty seconds you need to take the exit ramp off the femoral artery and then merge into hemo-traffic at the next … Watch out for that platelet!”

The purpose was to find out what was left of the AVM since the gamma knife surgery back in December 2011. (A gamma knife sounds like it could have been in The Fantastic Voyage.) Preliminary results are mixed. 95% of the AVM was destroyed by the gamma knife. That’s great. But there’s still 5% of the veiny knot that’s being fed blood. The doctor who performed the angiogram didn’t give any definite indication that this was dangerous or not. (Doctors seem to prefer vagaries when making predictions.) But he did say that there might possibly be, maybe, perhaps a slight danger because, well, it’s there.

We won’t know the full word until the results of the procedure are analyzed by the doctors. Then we will have to consult Dr. Trumble to see if he might need another gamma knife procedure. Maybe Dr. Trumble says there’s not enough risk to warrant it. Maybe he says that Shade has already received his full dosage of radiation from the last gamma knife and more would turn him into a raging green beast. (You know, the Hulk effect.) Or maybe they decide to perform this brand new procedure. It involves a sexy secret agent, with her retinue of doctors and assistants, who will shrink to a millimeter and drive her submarine through Shade’s bloodstream to destroy the 5% leftover.

I’m hoping for the third option.

Taking things for granted

Shade’s had a good summer

As of late, I’ve been thinking about how much I take for granted. Or as I’ve read in many a student essay: taking things for granite. What a lovely concept. I have a great family, nice house, meals on the table, but I often mistake them for a granular igneous rock out of which I might just make a kitchen counter. So goeth the English language, a living organism that metamorphoses daily through the goofs of the users.

I take for granted that my son survived a deadly stroke. I take for granted that he’s able to go to school and participate in classes. I want to stop taking everything for granted. I want to write about the greatness that happens daily but has been invisible because I’ve been living in my own microcosm. It’s a selfishness that has become my norm. My life is easier when I refuse to look outside the safety boundaries I’ve created for myself, when I keep my thoughts to myself.

See that. I managed to redirect that last paragraph to me (selfish) when my real focus should be Shade. He started eleventh grade this Monday at Central Florida Prep, two weeks before public school. He was ready. He had been volunteering as a Junior Counselor at St. Paul’s Presbyterian Blast Camp, the summer camp he was going to when he had the stroke. He worked with the young’uns, keeping them in line, helping them with activities, etc. He liked it, but I think he was ready to hang out with kids his own age again.

Of course, with school comes another year of struggling with homework. Yet somehow he manages to clear a bit of space in his injured brain to pack in advanced learning. He’s taking Geometry and U.S. History and Business. I hope his brain allows him to utilize these ideas in his future. He still has problems with long-term memory. The ideas flit around the surface but don’t like to bury deep in his mind.

That’s another thing I take for granted: my brain. It’s a lovely brain, but it could go at any moment. So could yours. Don’t freak out about that. Just appreciate it while you have it.

Shade is in mid-teen mutation as well. He’s sprouting up like the unkempt bougainvillea in my backyard. (I’m a lazy gardener.) He’s dealing with acne, which drives him nuts. It angers me a bit that he has to have acne, as if being angry helps. It’s as if Loki the trickster god thought, Here’s an easy target. Let’s give him one more issue to deal with. Hey, Loki, you deadened half his face already. He can’t shut his right eye. Quit torturing the kid.

He’s still rolling around in a wheelchair, but he goes to therapy every week to practice his walking. If only he could get his balance back. He’s got plenty of strength, but he still topples like a hewn pine when he takes a step. He can stand and crouch. He stands for long periods of time without assistance, but as soon as he takes a step, he falls. Is there another part of the brain that balance shifts to when the foot is put in motion? Must be.

There are new technologies that might help. WeHab uses a Wii Balance Board to help stroke victims regain balance through feedback. KIINCE is a company that developed a rehab machine that helps rebuild neuro-pathways that control balance. And Aitza’s got a friend who had a stroke that is undergoing an experimental stem cell procedure that may help him walk again. We’re looking into some of these. But as of now, he’s going to be in a long-term relationship with his roller.

Anyway, I thought some of you might want an update on Shade’s Progress. Aitza constantly tells me: There are people out there that need to know about him, people that have had strokes or traumatic brain injuries and want to see what others have been through. Shade can still inspire. He’s got that power. I guess that’s part of the “not taking it for granted” thing.

Steps forward

Shade visited his Neuropsychologist Dr. Westerveld today to see if he’s bonkers like daddy. Good news. My kind of crazy skips a generation.

Actually we got the results of his Neuropsychology Assessment Report, which analyzes his progress on behavior, reasoning, comprehension, memory, and processing. In some areas he’s progressing, in others he’s just floating in the pond. But the general outlook is positive.

He can interpret complex language, performs above expectations with visuo-spatial learning, and does okay analyzing visual materials and solving problems nonverbally. He continues to have difficulty with memory and his processing speed–his ability to interpret info rapidly without errors–is at terrapin levels. So his attempts at learning information are like trying to play World of Warcraft on a Commodore 64 using dial up. The info and intent are good, but the game’s going to go reeeeeeeally slow. That’s why his homework takes hours when it should take minutes. The good thing is his fantastic teachers at CFP give him plenty of time to work on homework. Thanks CFP.

Shade continues to gain steps in, well, stepping. He’s been practicing free walking. No crutches, walkers, or jet packs. Only Daddy behind him as his net, and Mami in front to cheer him on. Today he managed 10 steps at least 5 times. His record so far is 15 steps. A year ago he couldn’t do 3. At this rate, he’ll be running a marathon by his 21st birthday.

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