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.

 

Advertisements

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. 

This Path

Back in my college days, I read a book by Richard Bach entitled “One,” in which the main character encounters alternate paths of his life, all of which were happening simultaneously. To boil it down, it’s Fate meets Chance: the particular life you are living is one of endless lives that have happened and could happen and yet this particular life couldn’t be any different. A choice, a happenstance, a situation is merely a turn down a path that was already there and could be no different because it’s that path. And yet another quite different path could be chosen — or stumbled into or thrust upon — because that path is there, too. Infinite options all laid out.

Alright, maybe that’s a bunch of hippy shit, but it helps me cope with Shade’s recent stroke Saturday, May 28, his second in five years. Aitza, Shade’s blessed mother, the rock of our family, was called from slumber by Shade’s distressed calls last Saturday. He couldn’t move his left side. She dialed 911 and he was rushed to Florida Hospital.

I recieved the call from the other side of the damned continent, The Gorge in Washington, where I was working the Sasquatch Festival. I was shooting a Chet Faker concert for Yahoo, my first time behind the camera at a live music venue, so I was pretty stoked. As I focused in on the singer, I felt my phone vibrating in my pocket. It stopped, and then went off again. And again. And again. I knew something was wrong before I ever pulled the phone from my pocket.

Many already know the circumstances through Aitza’s Facebook posts. (Those posts were all her, by the way. And I think she’s a damned great writer.) For those unaware, the gamma knife surgery he had back in December caused a blister in the pons (brainstem) which burst. It wasn’t a huge bleed like his first stroke, but it did release blood, which caused swelling in the brain and the paralysis on his left side.

Aitza and I discussed what I should do. Despite his injury, Shade’s life wasn’t in immediate danger. And obviously we were going to need the paycheck from this job to pay the ominous mountain of hospital debt now looming once again on the horizon. So we both decided I should stay. It killed me, but it was the best thing. God bless Facetime. I at least got to see and talk to my boy.

Florida Hospital for Children ran tests and monitored him. The bleed area is contained so now it’s a waiting game. Yesterday he arrived at Brooks Rehabilitation in Jacksonville, which is considered one of the top rehab centers in the country. We’ll update you more on that. (To join Shade’s Facebook page click on the column to the right.)

When I finally made it back to Orlando at 6:00 a.m. Wednesday, I drove straight to the hospital to find Shade and Aitza asleep. It was a weird deja vu moment recounting 2011, my family hunkered down once again in the PICU. But this time, I wasn’t afraid. We’d already battled the beast once and crushed it. This pathetic attempt to strike again will face up to the same strength that destroyed it before.

I only had to spend one day in that hospital to know this. Because Shade was cracking jokes and wooing the nurses and trying his damnedest to move those limbs. And yeah, he cried a few times, because there’s genuine loss, near half his body. But he didn’t drown in sorrow. It was more like a quick rain gust that washed over him before the sun poked out. That boy is the strongest person I know. (Mom’s a close second.)

There’s a path in which our family falls apart. There’s a path in which Shade never had a stroke. There’s a path where Shade died. We’re not on any of those paths. We’re on this one, the one where Shade’s healing, and our family is going to love each other and laugh with each other no matter where the path takes us.

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.

Goodbye Dens Sapientiae

Ice pack after yanking Shade’s teeth

Shade had his wisdom teeth removed today. They yanked those suckers right out of his skull this morning. Now he’s on a soft diet of jello, yogurt and bloody gauze.

The jerk that named your third molars wisdom teeth — Dens sapientiae — was probably around before the birth of Jesus.  It’s like the lamest joke from pre-Christianity’s worst hack comedian. That guy was a total asine sapientiae — wise ass.

Wisdom teeth, like every other vestigial body part (tonsils, appendix, male nipples), are useless and bothersome, and often have to be removed before causing serious damage. My wisdom teeth got pulled out when I was about Shade’s age. Both Shade and I still have our appendix, tonsils, and nipples, which have yet to do serious damage, though they could still go off like unexploded bombs at any time.

The unwise part of wisdom teeth is that they don’t come out until you actually care about what your teeth might look like, i.e. when you’re a self-conscious teen. Then they crowd your front teeth, screw up your smile, and cause all sorts of dental problems until they’re forcibly removed like a bunch of drunk redneck party crashers at your daughter’s Quince Años celebration.

They’re annoying buggers that should have faded out of the gene pool after the first snooty Cro-Magnon turned down the Neanderthal’s mammoth jerky for a decent filet. And yet they keep popping up. Except in Aitza, who was born without them. What the hell, Aitza? You couldn’t pass those genes down to our kids?

Meanwhile, Shade spends his second week in the last month of 2015 in bed with an aching noggin. Here’s hoping that 2016 gives him a break from surgeries.

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.

 

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.

 

Previous Older Entries Next Newer Entries