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.

Advertisements

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.

Finding Focus

The explosion that erupted in Shade’s skull over three years ago knocked out his focusing ability. Shade has the attention span of a pyromaniac in a candle shop. Ooh, all the pretty lights.

Though his intelligence centers were not damaged by his stroke, short-term memory and focus did not fare so well. The MRI looks like someone tap-danced in those areas with golf spikes.

Thus, Shade’s school work suffers. He lags in class because he’s incapable of trudging up Homework Mountain without a study Sherpa to carry him. For example, he’s way behind in American Government class. Getting him to read the Articles of Confederation is like getting a Chihuahua to, well, read the Articles of Confederation. They’re both preoccupied with yapping at cats. (Shade’s cat fetish has not waned.)

So for every single homework assignment, someone has to sit and read with him, and explain with him, and write a little. Then read again, and

Shade getting study help from big brother, Edwin, and little brother, Mayan.

Shade getting study help from big brother, Edwin, and little brother, Mayan.

explain with him again, and write a little. Often it’s Mami. Sometimes Dad. This week it was big sister, Arianny, who’s in town for a week. It’s exhausting for Shade and for the Study Sherpa. It takes ages.

Shade’s not dumb. He gets the ideas. But then forgets them. And then gets them again. And forgets them again. Partly because he suffers short-term memory loss. Partly because he can’t pay attention long enough to transfer info to his long-term memory.

School demands focus if he’s going to acquire enough knowledge to have a career. A career demands focus if he’s going to keep his job.

How is Shade going to perform brain surgery if he can’t focus on the brainy bits? That’s a career tragedy waiting to happen: “Now, we just need a micro-incision right here in the meninges and … Hey, look at that beepy machine over there. Oops.”

So we’re trying something new. Shade’s neurologist, Dr. Kojic, has prescribed him Vyvanse, a drug often used to treat ADHD. (Back in my day, they didn’t have ADHD. They just called it fidgeting.)

This is a new edition of Shade’s Progress. The Focused Shade edition. Tomorrow morning (Thursday, October 2), Shade will take his first Vyvanse and we’ll see if he can switch from Dog Chasing Squirrel mode to Laser Beam Focus mode. We invite you to join the journey.

Next Newer Entries