Saturday, October 09, 2010


This has been one of the more strange weeks I've experienced, which by now is saying something.  Other than sniffles because I'm tired, I'm really quite physically well, which is of course great, but I think it's the only major area of life that hasn't had something just, well... odd, I guess, occur in it this week.

So let's review, shall we?

Legal stuff was once again on the calendar this week.  I'm still not precisely sure what to make of the details, since I don't know what the ultimate implications will be, but I think we're done with court.  Yes.  Barring a sudden cosmic shift, I have no reason to be in family court ever again, for anything.  So that's good.  But...  Yeah.

Someone I know had a check-up this week, peeking in again to see what's new inside there, that sort of thing.  They know that something is going on that they'd prefer not to see, but they're going back again in six months and expecting to see very little change at that time, so that's good.  And things there are relatively benign, which is also good.  But it would be better if there just weren't anything to report, you know?

Q had his vision recheck this week.  His acuity is measuring 20/180 - 20/80, variable as one might expect with a likely diagnosis of Cortical Visual Impairment.  His pupils aren't as responsive as the doc would like, and he noted paleness on Q's optic nerves.  There's not much that's good about that.  I expected the CVI because there was thinning of the visual cortex visible on MRI.  And a thinner cortex does not necessarily by itself mean much in children.  Cortices can thin and thicken during different developmental stages and it seems that children who experience that actually show an increase in overall brain mass and perhaps intelligence later on in life.  But in Q, with a host of other stuff going on, it means something that his visual cortex is thinner.  And it means something that an optic nerve appears pale.  It means atrophy.

I'm having a hard time with this.

This week I've had to say no to someone on a subject that kills me.  I've been on the phone with a couple of people regularly in crisis management mode, on unrelated topics.  School is happening (sometimes even shockingly well - we can discuss Medea later), but without the mood I'd planned for.  Our motto for this school year, Do the hard thing, is feeling just now like the makings of a bad joke.

All of it is a little much, even the pieces taken individually are each a big hairy deal.  But this thing with Q knocked me back.  Throughout his gestation, throughout the five year legal adventure, throughout the gazillion diagnoses and revisions and meds and tests, and throughout the parenting challenge of the four more or less neurotypical kids as an unwillingly single mom, I've been up, down, and in between, but not really just a mess.  Something about this had me bawling the moment all the kids were in bed.

Here's what I think is going on.  While it's true that nothing changes for Q based on this news, I'd sort of begun to think that we were rather past major revelations and now into the hard work of seeing what he'll do with what he's got.  That we were into managing the needs for equipment and household modifications and meds.  Those things are very different from hearing that not only does your kid have all the other stuff, but now we can say that he's got this too!  And it's irreversible!  And explains much about why he seemed to hate yellow!  How can one like a color one can't see?


I'm not raging.  I'm not even mad, which I know many parents are when dealing with these kinds of things, and that's okay too - everyone has the right to his or her own response.  I'm just sad.  Q's got so much to push through and for, physically.  Plus, he doesn't have his dad around, who was so great with the older ones at this age.  There's just so much potential for loss and heartbreak in life without having to reinvent every single thing in order to let the people around you know that you'd like a drink of water, for crying out loud. 

And too, the last time those three Big Things were tied up together, I had just learned that my beloved was headed elsewhere, my whole life as I had known it was blowing up, and my brain had flipped into profound slo-mo.  I'm pretty sure it was stuck in shock for a few months.


So Q is getting glasses with +75 lenses and we're going to see what he can do with that.  And we'll try glasses with tape on the lateral portions of the lenses, to see what range of motion across midline we can get out of those little brown eyes.  And he'll have a VEP, which I suddenly can't tie to the purpose of the test.  To see what his brain is processing or using of what information does come through his eyes, I think.

That he's seeing at all is awesome.  He clearly recognizes - by sight, at a distance - family, therapists, teachers, friends, usual routes we drive to school, therapy, church, Target, the grocery store, library, and etc.  He knows things, age appropriate things, things he's had to struggle for.  He likes to turn pages with his fist when read to.  He knows stories and looks for particular things in the pictures.  He loves the RC cars he plays with at therapy.

He is a happy, magnificent little boy.  He has truly fantastic siblings.  We will be fine.

Things shall improve in the coming week.  I'm reducing certain responsibilities of mine, ramping up others, expecting good news, and thinking about making apple butter with the kids (who've recently held their own spontaneous apple tasting fest, complete with recorded comments and voting on the best variety of seven).  There's other medical stuff to attend to here and that will be taken care of.  And laundry will be done, dishes will be done, and so the quotidien will continue, in all its blessed guises.

To your blessed quotidien:  may it include hard and satisfying work, may it be so rife with gentleness and kindness that you fully feel your worth, and may it present the opportunity to enjoy some really great cheese.



Carolyn said...

Just when you think you're managing all that life has dealt you ... why did the atrophy have to pop up? A little thing, like unto the straw that broke the camel's back.

I send hugs, wish I could send an apple pie or two, and will pray God gives you a few working neurons to keep up with the necessary stuff while the rest of your brain is busy processing things. (It sounds so much better to say that it's processing things in the background than to say it shut down.)

C said...

I much prefer "processing in the background.". :oD

divatobe said...

Your daily courage, humor, and this honest blogging is inspiring....and I don't mean that in some misty Hallmark sort of way. Thank you for writing.