The Never Normal

Tuesday, two people from Jonah’s school drove him up to his glaucoma appointment, and I met them there.  This was his first appointment at a glaucoma doc since they determined he had it.  We knew he had a good chance of getting glaucoma.  In February of 2010 they operated on his left eye, placing a Reticert implant inside (which constantly emits a controlled dosage of a steroid, locally) and they replaced the lens of his eye with a fake one.  Too much pressure in his eye.  Glaucoma was likely, eventually, they said.

In photos you can see his left and right eyes look different.

And so now glaucoma.  At the appointment I was given a brochure called Understanding and Living With Glaucoma.  Its clear, clinical language was interrupted in just one place:  the first sentence (under the heading What is Glaucoma?), which somehow managed to sound both dismal and anthropomorphic:

Glaucoma is an eye disease that gradually steals your vision.

I closed the brochure.  Not now.

During the whole time, Jonah was the bravest little boy ever.  I’m so very proud of him.  The doc was almost an hour late, so we had to entertain him, and the two people who drove him up from school turned out to be incredibly awesome, operating like a well oiled machine.  I don’t mean to say they were in any way cold, either.  E was a short giant of a woman.  She knew her shit.  She was friendly and efficient, and perceived exactly how to handle everyone, from me to the doc to the receptionist.   E put everyone at ease, and kept everything at Def-Con 1.  A compassionate magician of a woman.

She understands the system and works well within it, but she also demands respect and damn well gets it.   I loved her.

With her was J, a muscular young-looking man with a strong-yet-softie look about him.  He and Jonah were like brothers.  (I kept thinking of Rainman:  V-E-R-N.  My main man Vern).  J is definitely Jonah’s main man.  He knew how to re-direct Jonah and did so with a deceptively casual brilliance.  He’d look over at Jonah and say give me the punch and they’d bump fists, Jonah giggling.  J too was friendly and comforting; when I sang with Jonah he said “you got pipes” – and we chatted easily.  He told me he was an amateur boxer, and he was about 10 years older than I’d pegged him for – all the while engaging with Jonah as necessary and wise.  I loved him.

I tell you these people were awesome.  I was so grateful I was nearly in tears.  When other people are in charge of your child, people who are not relatives or even friends, you want to kneel before them as you would royalty, for they have the most important job in the world, to parents like Andy and me.  They care for our little boy.  He will be ten on March 7th,  sharing a birthday with, of all people, Tammy Fay Baker.

Wait!  Wow.  I just searched for “Who was born on March 7th” out of curiosity, and found out Elizabeth Moon shares his birthday!  She wrote one of my favorite books, The Speed of Dark– set slightly in the future, about a man who has high-functioning autism and must decide whether or not to undergo a new procedure to make him normal.  The book is where I got the title for this blog, Normal is a Dryer Setting.  In The Speed of Dark, one character with autism says it during a conversation.  I love that.  Who else was born on March 7th?  Ravel, the composer.  Wanda Sykes, the comedienne.  And even Pam Carter – Wonder Woman’s sister.

But I digress.

Doc was good.  A little cool and clinical, but 99% of doctors are, after all.  (Not you, Jacob.  Or you, Neil. You’re the 1%.  HA!)  Here’s where it gets weird, though.  With both E and J holding Jonah, the doc put numbing drops into Jonah’s eyes (Jonah’s used to eye drops so that wasn’t the big deal you’d think it might be) and then looked through his fancy machine and said “this suture is broken.” He turned to the nurse, asked her for an instrument, and proceeded to (I have no idea how) remove the broken suture from the back of my son’s eye.  Um, okay.  Wow.

Turns out it had been scratching his retina, the suture, and as a result the retina was red and irritated.  “How long do you think it’s been broken?” I asked.  “Months,” he replied coolly.  “At least.”  I looked at the suture he’d set on a tray.  “Could he have been in pain all this time?” I asked.  He paused.  “Yes,” he answered.

But Jonah’s to the point where he can say if something hurts, I was thinking.  After his eye operation, he cried in misery and very clearly stated “eye hurts!”  I don’t understand and I don’t know what to think.

But in a few weeks they’re going to put him under anesthesia so two specialists can take a closer look at his retina.

Then the doctor set me up with the name of a rheumatologist who sees children – something we were told a year ago did not exist in this area…which is why we traveled to Boston Children’s Hospital to get him diagnosed with juvenile arthritis, something all the doctors here suspected he had.  Now, finally, he can be hooked up with a rheumatologist.

There is more but I am tired.  It has been a very exciting day, and I’ll tell you all more about that later.  I have to go watch Tora Tora Tora; my dad said it was the most historically accurate portrayal of the events leading to the attack on Pearl Harbor, and I’m interested in that.

Good night all.  Good night, little Boo.  Sweet dreams.  If there’s any mistakes in this I’ll come back and fix ’em tomorrow.  I don’t have it in me to edit.

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