The latest on Sean — rolling along (but not for long?)

(The caption is a quote from rapper Chamillionaire’s song “Ridin’.”  Rest assured that it’s the first — and likely the last — time I’ll be quoting Chamillionaire on this blog.)

So I’m picking my son Sean up from school a couple of days ago, and I’m talking to his teacher, Mr. Cornelison, as I load his wheelchair into the back of our van.  (This is always a bit of low comedy, as we have a ramp we could use for that purpose — except there’s enough room in the van for the wheelchair OR the ramp, not both.  So I have to lever the chair up by getting the foot pedals up on the lip of the hatch, then using them as the fulcrum to bring up the rest of the chair.  Great for my arms, but it sure does look goony.  And sometimes the pedals slip, and I have to start all over …)

Anyway, Mr. Cornelison is watching my struggles, and he says something that absolutely floors me: “Ya know, ya don’t have to bring the wheelchair if you don’t want to — he doesn’t really need it here.”

If you were to ask me to sum up Sean’s continued recovery from the ravages of Leigh’s disease, in one sentence, I don’t think I could compose one better than that.  “Ya don’t have to bring the wheelchair if you don’t want to — he doesn’t really need it here.”

Remember that two years ago, our Seanster Monster had basically lost the ability to do much more than turn his head a little and breathe.  This is normal for someone in the later stages of Leigh’s disease — the primary symptom of which is the degradation of the motor control centers of the brain.  The next step, from what I’m told, is that the control of the diaphragm goes, which means they can’t breathe anymore.  Nina and I had asked everyone we knew who prayed to pray for his healing … but in October 2009, less than three months removed from his being a happy, healthy kid who was looking forward to starting kindergarten, it was increasingly seeming like God’s answer to our prayers was “no.”

Come October 2011, though, here we are.  He’s breathing just fine.  He’s going to school.  He’s walking — with assistance and a ton of close supervision, but walking nonetheless.  And his teacher is saying that at school, he doesn’t even need the wheelchair now.

Granted, Sean does not go to the average everyday grade school.  Walton Special Center is a public school specifically for kids with major physical or mental disabilities.  At least half the student body is in wheelchairs.  Class time is split between physical and other therapies (they have an indoor pool, which Sean just loves) and more standard “readin’, writin, and ‘rithmetic” education, as much as can be done given the kids’ limitations.  They have physical, occupational, speech/communicative and even feeding therapists right on staff, and more nurses than any other school in the district.  (I give the school district a hard time on many fronts, but the establishment and continuation of Walton Special Center is one they absolutely got right.)

Every weekday morning at 8, I drop Sean off with Mr. Cornelison (who meets us at the front of the school, because that’s how Walton rolls) and he goes back to room 209 for his 8:15 gastric tube feeding and to start the school day.  Over the next five-plus hours, he’ll exercise, work out on the machines they have there, swim (once a week), see the various therapists at various times, work on his letters, numbers and whatnot (he’s enrolled as a first-grader), interact with his classmates as best as he and they can, and even play with some of the teenagers from Kohl Open School, a district-run “gifted” school that’s right next door to Walton, and some of whose students volunteer there.  (We’re looking into enrolling Charlotte, Sean’s high-achieving older sister, at Kohl for next school year.)  It’s a full day, and while he’s usually a little chuffed when I come to pick him up at 1:40 — 1:00 on Mondays, due to a weekly staff meeting — he really seems to be enjoying it.

And at home, we get to see the results of all the work they do with him at Walton.  Sean’s walking is getting smoother by the week; I don’t even need to hold his hand unless the ground is uneven, just hover behind and give him an occasional nudge to keep him moving forward.  He’s exploring his environment more with his hands, and gripping better (though he does still tend to grip four-fingered, not using his thumb). He sits up straighter, and does so more on his own.  And his facial expressions are getting clearer and more pronounced — we need less guesswork to tell when he’s smiling or frowning.  His speaking is still limited to saying “mmmm,” but now he does it with inflections that let us know whether the “mmmm” means “thank you” or “that hurts” or “I don’t like that” or whatever.

What it means, in a nutshell, is that the 7-year-old boy is coming through clearer.  He likes classical music — Bach, Brahms, Handel, Prokofiev’s “Peter and the Wolf” (but not his Piano Concertos — too modern, too dissonant).  He hates baths.  He doesn’t want the wind in his face when he’s in the car.  He prefers Mommy-hugs to Daddy-hugs (too dissonant, I suspect).  He plays passive-aggressive when asked to do something he doesn’t want to.  And he wants to be up and moving around as much as possible — the only problem is the gap between what he’d like to do and what his body will let him do.

Slowly but surely, a piece at a time, we’re getting our “miracle boy” back.  Which in itself is a miracle.

Does this happen without the prayers of people all over the world?  I can’t see how.  As far as I know, he’s the only kid with Leigh’s disease who’s actually started getting better (though if you know of another, fill me in — I’d like to compare notes!).  And so I ask you to continue praying for Sean’s restoration to full health.  In fact, let me give you a few specifics to ask God for:

  • That Sean would continue to gain movement in his jaw and tongue, and that his swallowing reflex will improve.
  • That his ability to speak would be restored.
  • That his balance would keep improving.
  • That we and his teachers would constantly gain wisdom in how best to care for him.

Thank you so much for supporting us for the last two years, and for however many years to come (let’s face it, we’re in uncharted territory here).

And for the moment, we’ll keep bringing his chair to school with him, just for convenience’s sake — it makes it so much easier to haul him and all his stuff.  But a day will come …

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