Archive for June 25th, 2012

Those of you who can find the thread in the midst of all my tangents and ramblings may be wondering what is happening with Jonah’s eyes.

Two or three blog posts ago (the eyes have it) I said:

“What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him…all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.”

Luckily, before I needed to ‘play my ace,’ the doctors decided to talk to one another.  For now we’ve all come to the conclusion that the Reticert implant is best left in place for now, even though the thing is nearing the end of its efficacy anyway. 

Plus now there is all this concern about the “activity” in his right eye.  The new drops have mitigated it so far, we’re told.

Next we’ll go back to the pediatric rheumatology doc and find out about another drug she may want to try.  I like her; she’s cool, knowledgeable, and kind with Jonah.

Still, I feel like we’ll never get to the bottom of so many things.  But maybe that’s all right.  It has to be all right.  I don’t have any choice but to learn what I can comprehend and weigh options with Jonah’s dad and all the endless scads of doctors. 

It’s like looking at my boy through the water, all refracted by light and liquid.

Boo likes to be underwater

Jonah likes deep pools best where he can swim to the bottom and ‘merboy’-himself along as if finned. 

At the bottom of all this is Boo.  It’s always been Boo.  Like Mitch Albom, Jonah tells his mama:  We’re not a wave.  We’re part of the ocean. 

But whales live in the ocean, Boo.  Ones that swallow Jonahs who’ve been insubordinate. 

“…(and) you can’t hide; standing under these stars
They know everything… they know where you are.
You’re in your head, you’re all turned around with it
And they’re shining down their light to bring you back again

~ Careful by Guster

So soon we will know more, about both Boo’s eyes, and maybe try harder to get him to wear sunglasses for his light-sensitivity.  And I keep files and notes during doc-conversations so I don’t forget details.  If I cannot parent him I can advocate for him.  And others like him. 

I miss him so much tonight, though.  Usually I don’t let myself think about it, about him not being with me.  But sometimes because of a scent or a sound, all at once I have a punched-in-the-gut feeling, and I miss him like the day we dropped him off.  My God, it’s been almost a year. 

He has made a lot of progress.  He is toilet trained nearly completely and his language and social skills are coming along.  You can ask him a question now and usually he’ll answer it. 

“How is your sandwich, Jonah?”


It used to be more like:

“How is your sandwich, Jonah?”

“How is your sandwich, Jonah?”

And still he parrots, but he can make his needs met and now he will initiate conversation.  He says hello to teachers and the nurses, and his caregivers too.  Now he is so much better at communication.

shoes on please?

He’s independent, too.  His life has routine, and ritual, and he’s surrounded by people who know how to teach kids like him.  I don’t know what I’m on about.

Off I go to breathe and eat.

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