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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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.

I’m walking, yes indeed!

Every day Shade has been doing special foot and leg exercises given to him by our friend Denny, who knows a bit about recovery from brain injuries. Shade complains but does them. They’re not easy for him. Some aren’t easy for me. Picking up pencils from a smooth wooden floor with your toes is a frustrating task. I tried it. I could only get one in the air. Shade also does a series of squats and steps while holding on to the back of a chair. Great for the core. His favorite is kicking a soccer ball back and forth with his brother. Today, all the exercising paid off.  Check out the video. It tells the story better than I ever could. He did this for a good half hour.

Rainy Day

Zipping across Lake Down

Zipping across Lake Down

There’s an old Taoist tale about a farmer talking to his friend about how he got a new horse, to which the friend said, that’s good, to which the farmer said, it kicked my son in the leg, to which the friend said, that’s bad, to which the farmer said, then the army came conscripting boys but they wouldn’t take my son off to war because of his broken leg, to which the friend said, that’s good, and so on, ad infinitum. The basic idea is everything just happens. It’s a great philosophy for taking the power out of bad news and making everything all right.
Shade, Mayan and I were invited out on a boat with friend Todd Howell and his son Braden. To IMG_8239prep, I showed the boys “I’m on a Boat” by Lonely Island. Definitely not appropriate for children. The boat was a family heirloom. Had some years on it, but was well maintained. We headed to Todd’s at 10 a.m. and the rain had already started. We hung out for an hour and it poured harder. We hopped in the van and headed out around 11 a.m.

By the time we pulled up to the boat ramp on Conroy-Windermere IMG_8183Road, the rain was in auto-pour mode. By the emptiness of the parking area, it was apparent many boaters had given up. We checked the sky and there were some questions of whether we should go out. But we said, “Shoot, we’re already here. What’s a little rain? Let’s do it.”

Todd gunned it and we were whipping across the water, needles of
rain piercing our clothes. Shade took off his shirt to let the drops IMG_8224sting him. I gave him glasses to keep it out of his eyes. We had the lake practically to ourselves. At one point, in the middle of Lake Down, Todd stopped the boat and the boys jumped into the water with life jackets on. I think the distance from shore made them nervous because they swim great without them. It was still drizzling, but the air was warm and the lake was like bath water.

We got the boys back in. The rain let up. We headed down the canal that connects Lake Down to IMG_8233Wauseon Bay. It felt a bit like a scene from Apocalypse Now as we puttered under the canopy of cypress, the boys standing on the bow, checking out the weeds flowing underneath. Halfway down on the left was a side canal. Todd steered down here. Back in sixth grade I used to live on this canal. We pulled up to the back of my old house. I showed my boys where I fished for brim. A gar stole my rod off that bank once. Shade and Mayan got to connect a little with my history, just like I did back in England earlier this year with my dad and brother.

IMG_8248Eventually we got out to Lake Butler and pulled up to Bird Island, a bird sanctuary out in the middle. Boaters anchored in the shallows of this cypress stand to chill or barbecue or jam out to Led Zeppelin. We anchored and jumped in. I gave the boys goggles and they swam after bass back and forth under the boat. Shade was in his element. He can hold his breath twice as long as me. The water got smooth. No wind, no wakes. A boat pulled out from between the half submerged trees, towing two lumberjack-looking dudes. They went zipping back and forth across the lake.

By this time, the sun was pushing some light through the gray clouds, just enough to warm the air and cast a glow over the forest. I got a picture with my boys. I’m lucky to have them and I told them so.

IMG_8253That was a perfect day. And it wouldn’t have been if we hadn’t just gone with it. The rain isn’t good or bad. The rain just is. I’m trying to live by this philosophy though I fall short a lot of times. Impatience is my biggest hurdle. But hey, it’s the journey not the destination, right? I think that since Shade’s stroke, our journey has been more adventurous. We’ve had a fantastic journey so far. And as long as I can collect some great times like this along the way, the rain is all right with me.

Bye Bye Mellow

Mellow in shoe

Mellow in my Boot

We lost our sweet little kitty today. Mellow was her name and she was only one year old. Beautiful colors, kind of an electric bluish-gray on white. She was a petting cat. She’d lie in Shade’s lap for ages while he stroked her. She could have been a therapy cat. She was very playful. Mayan used to kick his mini-soccer ball around and she’d play goalie, jumping way up in the air and landing on it. She’d ambush our legs, too. At those times we named her Menace. The lizards didn’t like her much. She’d bring three or four in the house daily and bat them around. We’d find the desiccated carcasses under our grandfather clock, as if it were a lizard mausoleum. So she also earned the name Malice.

I woke up early, around 5 a.m., and Mellow was lying by my side. I stroked her in my half-sleep. She had hair as soft as lamb’s wool and a bushy paintbrush tail. Then I got up. Around 6:30 a.m., we could hear the crashing glass of the recycling truck a couple streets over. Aitza mentioned that we’d forgotten to take out the trash, so I lifted the full bag out of the kitchen and carried it to the roadside. That’s where I found her. Her bounding was cut short by a car tire. Our road has notorious speeders, and I’m constantly warning the kids to watch when they cross the road. But you can’t warn a cat. Even if you could, cats don’t give a damn what you say. At the very least, it looked like it was a quick and painless death. No suffering.

Mellow with the Family

Mellow with the Fam

The kids still weren’t up yet. We chose to hold on until after school to tell them. Death is a hard thing to take with you through the day, especially if you’re a child, especially for Mayan. Ever since Shade’s stroke, Mayan freaks out whenever he has a headache or a cold. “Am I going to die?” he asks. “No, you’re fine,” we say. Shade doesn’t have the same fears. He’s already thumb wrestled with Death and won, though he took a few bruises in the battle. If he had quicker reactions and better memory, he’d make a great anti-terrorist operative because he doesn’t flinch at things that make others go “Eeek!”

When we told the boys, Aitza and I were bawling, too. I think I had a few flashbacks from 2011. Life is so fleeting that one moment you’re stroking your kitten and the next it’s lifeless on the asphalt. Or you’re talking to your children over the phone as they vacation in San Antonio, and the next day one of them is in a coma. Or your mom is working in the yard one day and has colon cancer the next.

Mellow and Shade

Mellow and Shade

It’s nerve wracking because death is always around the corner, but it rarely sends a message that it will be showing up. It pops up and punches you in the gut. I try to be Buddhist about it, meditating on the impermanence of everything, the inevitable entropy of the universe. That’s easier to do when you’re not connected to the dying. Right now I feel as if my soul is being stretched like a rubber band to the point that one little tug more and it will pop. And that’s just for our cat.

But it works the other way, too. You’re walking in from work and you hear a meow in the bushes and there’s a kitten, who becomes part of your home. (That’s how Aitza found her.) Or you’re with your wife watching Armageddon in the theater and the movie’s making her sick and that night she does a pregnancy test and finds out you’re going to be parents. (That was our first glimpse of Shade.) Or your child is born and you put him in your mother’s arms, and that keeps her alive for another nine years until the cancer finally takes her. (Shade gave her the drive to hold on.)

Life and death, they’re inextricably linked. Even the pain of losing someone to death is merely a reflection of the love you felt for that person (or kitten) in life. How sad for the person who has no one for which to mourn or to mourn them when they die. That’s a lot of loneliness.

Mayan and Mellow

Mayan and Mellow

We told the kids in the late afternoon when they got home. Mayan was shredded. Mellow was his cat more than any of ours. He had to retire to his room and cry it out. Conversely Shade said, “No more Mellow? That sucks.” Then he made a joke about Mellow being the color of asphalt. Like I said, death doesn’t get under his skin.

I had already dug a hole in the back yard, put Mellow in a cardboard box, and carved and painted a little marker. We walked out back and lowered kitty into the ground. Our other cat, Cheetah, came up to look. Cheetah hated Mellow. There’s a conspiracy floating around our family that she pushed Mellow into the road. She has been unusually friendly today, as if she’s trying to get on our good side and cover her tracks. The investigation is pending.

The ceremony was short and sweet. I threw a palette over the gravesite so raccoons don’t dig her up. (That would be double traumatic.) We’re inside right now, looking at pictures and videos of her. If you’re not a pet owner, that might sound silly. Just think of her as a little furry person who touched our lives. That’s all any of us can hope to do.

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.

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