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.)


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.

Zombie Taco Cat

Can you hear that howling? No, that’s not Aitza after Shade accidentally steps on her mangled, detached toenail. That’s the sound of Halloween in the air. I can feel my were-cells starting to mutate.

Not quite finished Zombie Taco Cat

In preparation, I’ve started constructing Shade’s costume. In true goofy fashion, Shade decided to be a Zombie Taco Cat. This freak-show abomination, created in my own basement laboratory (yes, I have a Florida basement), is the genetic splicing of a zombified human, your common domestic Felis catus, and a savory, crunchy Mexican entree. I’ve already applied the giant crispy tortilla shell to his spare wheelchair. That took a lot of tortillas. I’m going to wait until the night before Halloween to cook up the 50 lbs. of ground beef to pour on him. Otherwise, he might start to stink.

Talking about Halloween, our Indian Guides program is involved in our Halloween carnival tonight. We have tons of games, bounce houses, silent auction, cake walk, an extremely scary haunted house, and this year, a special storytelling show with Chief Jack-O-Lantern. (Yes, I am Chief Jack-O-Lantern.) My show will have stories, songs, jokes and interactive pieces for the kids. Highlights will include an Interview with a Zombie and The Man Eating Chicken! And remember the song “Great Green Globs of Greasy, Grimy Gopher Guts”? That’ll be in there, too.

I was asked to do a show as an alternative to the haunted house because allegedly we scare the poop out of little kids. Last year, a mom came up to one of the dads, Tony, and screamed at him for psychologically scarring her kid. I’d say that’s a resounding endorsement for our haunted house. This year, we’re doing a haunted circus theme with tons of evil clowns. Everyone loves clowns, right?

If you have kids, come to the Dr. Phillips YMCA tonight from 6:30 p.m. to 9:00 p.m. for a terrifyingly fun time. (Yes, that was a commercial.)

Tried to make me go to rehab

We’re making a few changes in Shade’s rehab. The schedule was a bit overwhelming with school, so we are cutting his therapy down to only Tuesdays for PT and OT. His speech therapy has really become memory practice, and he’s getting plenty of that learning about conquistadors and algebraic equations at school. Once Shade gets nerve graft surgery in his face, we’ll look into speech therapy again. In place of his lost therapies, we will be hitting the YMCA gym more often. He’s pumping iron now (machine weights, not free weights), and I think he enjoys it more. It makes him feel like a teen working on his body, not a tot being forced by a stern matron to do stretches and exercises. The YMCA doesn’t make a person feel like an invalid either. (Although after doing their cardio-fitness workouts, I often do feel like one.) Shade will also restart hippotherapy. (Which, by the way, couldn’t be possible if the conquistadors hadn’t brought over the first horses to Florida in the 1500s. Thanks, Ponce de Leon.)

Camping season is starting up soon, and the boys are excited. I was hoping Shade would be walking by now so he could have a bit more freedom at the camps but we’ll make do. I’d like to get a 4-wheel drive wheelchair for him to crush through the brush, but I don’t think they make all-terrain handicap assistance vehicles. By the way, our Indian Guides tribe is named for the Calusa tribe, who just happened to be the demise of Ponce de Leon. Thankfully, they didn’t kill all the horses.

Keep in mind that Shade’s Super Stride 5K Fun Run is this Saturday, Sept. 15 at 7 a.m. at Blanchard Park. Park at the YMCA in Blanchard Park. By the way, the first 100 people to show up will get T-shirts with Shade’s Super Stride logo. We’ll also have water bottles with the logo on it and other goodies and giveaways. Thanks to all who are helping out and donating to our cause. Don’t forget to wear your cape! There will be a special appearance by the most delicious super hero of all, The Baconator!


Shade’s school progress

A couple weeks into Shade’s eighth grade classes and he seems to be adapting well. Many of his teachers have mentioned his added participation. His history teacher, Mr. Aldrich, says Shade is very involved in class, raising his hand to answer questions posed to the class and answering correctly. He’s taking initiative, which is fantastic. We are seeing a bit of this at home. Sometimes, without prompting, he asks us if he can work on his homework. Unfortunately he has a 15 to 20 minute window of concentration before he gets  frustrated and shuts down. He’ll switch from completely engaged to distracted and confused. Then he starts snapping about unrelated little distractions, like background noise or not having a sharpened pencil. On his history homework this evening, we got through one question and were just starting a second when he began griping and went upstairs in a huff (with me tagging along directly behind so he didn’t misstep and fall downstairs). Thus, his homework is always in the process of being finished. It’s an extremely tedious process to study for anything. That’s when Aitza takes over. She grabs Professor Cheetah the cat and somehow will retell the Spanish colonization of Florida in the 1500s through a feline’s perspective. She’s a much better teacher than I am, and she has the patience of the Dalai Lama. My patience level is closer to Daffy Duck.

At the YMCA, Shade is kicking it up a notch. Ashley and Lindsey, his trainers, have started him on the FitLinxx machines so he can work his muscles and keep track of his progress. I foresee a big jump in his strength as he’ll be focusing on his upper and lower body on different days and upping his weights regularly. Stepping up to an adult-level workout should boost his morale. Next step: Getting his pecs so big he can make them dance.

Keep in mind, Shade’s Super Stride 5K Fun Run is in two Saturdays (Sept. 15). I’ll be practicing for the 5K this weekend by running in the Dirty Foot Adventure Run, one of those muddy, painful obstacle courses made for people with no sense. If I survive, I’ll see you all at the 5K. If I don’t survive, I’ll have Aitza push my coffin down the course. I’ll make sure Aitza dresses my corpse in a unitard and cape so I stick with the Super Hero theme.

School again and Shade’s Super Stride new location

Last night, Shade and Mayan both had pre-school jitters. Aitza had to hang out in their bedroom for ages until they went to sleep. Mayan’s worries are based on no real problem. He couldn’t even put his finger on it. He ended up blaming it on the eventual  FCAT writing test that he would have to take later in the year. Go to bed, Mayan! Shade, on the other hand, was fretting about being accepted and whether he would have any friends. But this morning when Aitza took him, he was getting high fives from a bunch of students so I think he simmered down a bit. I’ll simmer down when I find out he’s actually doing okay. Last year was a gimme for his classes, but this year I think he’s going to have a bit more pressure to perform. The good thing is his memory has improved over summer. But it’s not up to 8th grade level yet. That may take a while.

When I picked up Shade at 2:10 p.m. to take him to therapy, he was worn out. He still gets very fatigued from long thinking sessions. (Must be a family trait. My brain sparks and whizzes when Aitza asks me more than two questions in a row.) He’s taking science, history, art, two math courses and a student assist class in which one of his peers helps him study. Unfortunately the chorus class had to go. It was seventh period and he would have missed it because of therapy.

Aitza took Shade to community choir as a Plan B, but that doesn’t look like it’s going to work either. They meet from 7:00 to 9:00 p.m. on Mondays. He’d be shredded if he stuck to that schedule after a whole day at school and therapy. Plus, they were learning Handel’s Messiah, not a beginner’s choral piece.

New news on Shade’s Super Stride 5K. It’s moving location. It’s still September 15 at 7 a.m. but it is now going to be at Blanchard Park off Dean Rd. between Colonial and University. Matt Libby (who happens to be the husband of Shade’s OT, Kristen), Executive Director of the Blanchard Park YMCA, is helping us with all the necessities including insurance and permitting so it’s a lot easier. The original location in Gotha became a bit of a nightmare, especially after we ran into the bureaucrat from Hades. Blanchard, though a bit farther, is much easier.

We actually had a few people who stepped up to help us including Brian Nesmith, event coordinator for Race Time sports who gave us a lot of great advice. Thanks for the help, Brian.



Medaling in Obliviousness

I’m watching Olympic synchronized swimming with Aitza. It’s freakish. The nose plugs alone make me cringe. They make the athletes look like mutant aquatic bat-humans. Aitza created her own Olympi-vision, which involves watching the sports in fast forward. You get more sports in half the time and you don’t have to listen to the incessant drivel spouted by the announcers. It’s also more exciting because the athletes are twice as fast. Man, can Usain Bolt run in Olympi-vision!

So while we were watching the Russian robots thrash about with perfect underwater double-speed scissor kicks, I made the mistake of asking Aitza for the notes on what to write about for the blog. I have memory issues. I wouldn’t doubt if my brain was dipping its proverbial toe in the Olympic-sized pool of dementia. I do have Alzheimer’s disease as a genetic legacy. My Nan had it. So I write down notes in a notebook, and then promptly forget where the notebook is. This gives Aitza free reign to point out all my memory flaws. “How does someone forget what he’s going to write about? How does someone forget where he put the notebook where he wrote the notes so he would remember what to write about?” Hey lady! If I wanted to be ragged on 24/7, I’d get a wife! Ummmmm.

So now we’re watching the equestrian horse jumping, which reminds me of Shade on his horse. (Who needs a stupid notebook?) Last time Shade was riding his long-faced buddy, Ivan, he became a bit dizzy. Sandy from LifeSkills was with him, giving him support, along with three other assistants, so he wasn’t going to topple. Sandy said that the dizziness comes from Shade’s brain recognizing the movements and making new connections. From what she describes, it’s a good sign for healing. Not so good if he’s show jumping though.

We just watched the Grenadian (doesn’t Grenadine sound better for the nationality?), Karani James, win the Men’s 400, which reminds me of Shade’s other exercise achievements. His YMCA trainers and his rehab physical therapists said that Shade displayed a lot more core strength last week. Perhaps the exercise is paying off.

Still, his strength is sapped by his Kryptonite: lack of naps. He might have a six pack that you could chop wood on (not an Olympic event), but without his nap, the only physical activity he excels in is marathon crankiness. (1,000 meter kayak is on. Oh yeah, that reminds me…) I took Shade to the YMCA today because his rehab was cancelled. I figured I would get him on the erg, which is the hip term for a rowing machine. After all, Shade used to be on the OARS rowing team in Windermere. (Not quite kayak, but close enough.) However, I had been warned by PT Melody to take it easy on the erg machine and to break the exercise down into its various parts. So I explained to Shade that he would first try just doing the legs and then just the arms, until he got his rhythm down. The complaints started to pour out of him like pool water out of an Olympic diver’s nostrils. “I used to row! This is stupid! This isn’t motivating!” and so on. I explained to him how he needed to break it down so he didn’t hurt himself. He started whining like a jaded Twitter addict complaining about NBC tape delays. In total, we were in the YMCA about 15 minutes before I bustled him back into the car. Then after a nap at home, he scooched over to me and said, “I’ve had a nap, I’ve pet my kitty, and now I’m ready to work out.” So we did a half hour of push ups and leg lifts and stretching with no complaints. Obviously, I will not be medaling in Olympic Patience or Awareness, though I think I’ve got a good chance for gold in the Long-Term Forgetfulness and Broad Insensibility.

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