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.

Advertisements

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