Matters of the eyes, part aw hell no
Apologies in advance that this post is not injected with the levity usually associated with the words I write here…
Last October I started down a long and winding path with Marlo concerning her eyesight and the treatment of it to improve her quality of life. Before I took her in to see a pediatric ophthalmologist on my healthcare plan she pretty much couldn’t see the basic outline of anything, even with the glasses she was then wearing. I documented the beginning of that journey here and the second leg of it here where the doctor determined that she needed to wear a patch on her left eye for two hours a day to help strengthen her right eye.
We spoke only in pirate jokes for days. You would have punched me multiple times, it got so ridiculous. And I’d have responded with, “Gonna have ya arrrrrrrrrrested!”
At a third examination in March, the head physician at this clinic was delighted at the progress she had made. And here is where I give huge thanks to my babysitter Kelli, she who picks up my kids from school and stays until 5:30 PM so that I can get in a full work day. She is one of my sister wives with the added benefit of not ever having to say, “Oh no, it’s my night tonight and I have a headache. Please, I’m begging you. Go to the main house and take one for the team.”
She and I have worked together to make sure that Marlo wears that patch religiously. Every day she wears that thing. Every single day. The doctor was so pleased with the progress, even, that he ordered a less intense prescription and said that she could cut back the patching to just an hour a day. He then said to come back within two months for a checkup because he was confident that we could quite possibly cease patching altogether at that point.
These are facts. These are the things he told me. Moreover, I sat in that room and witnessed the progress. She was seeing letters during the tests that she had been unable to identify at the previous examinations. I saw the difference with my own eyes.
On Wednesday afternoon I got a call from the school saying that Marlo had been complaining for at least a half hour about an ear ache. This made immediate sense because she had a cold that kept her home from school the previous Friday and lasted through the weekend. The last time she had that kind of cold she developed an ear infection just days after recovering. I dropped everything and spent the entire afternoon at the doctor and pharmacy with a very miserable child who screamed violently for hours.
By mid evening the antibiotics had kicked in, and she was back to normal. Meaning, she was demanding, belligerent, and saying things like, “Aliens are so stupid because they’re flying around in the air all the time when they could be down here building tents.” If you think about that for more than two seconds it starts to make sense. So don’t.
The next morning she said she was feeling much better. She was acting perfectly normal, and since we had that next eye checkup scheduled for just a few hours later I decided to keep her home from school. She was in a great mood, markedly different from the afternoon before, and sang along to the music in the car on the way to the appointment. She and I both walked broad-shouldered into the office, hand in hand, her because her ear didn’t feel like it was on fire, me because I was looking forward to some good news.
They were running late as usual, and while we waited Marlo tinkered with all the equipment they have set up to entertain kids. I remember sitting there thinking that the doctor we were seeing was not the lead physician, and in my head I explained it away as, “He’s so hopeful about her progress that someone else can perform the checkup and be done lickety split.”
Soon the doctor entered the waiting room and called Marlo’s name. When we reached the examination room she knew the drill, hopped right up into that giant mechanized chair and smiled to present him her award-winning dimples. He asked to see her glasses and then took them out of the room presumably to check the prescription, their condition, and to wipe off all the smudges.
I will admit that I had that morning eaten a bite of hummus and without swallowing taken her glasses and licked both lenses. Do not judge me on when or where I get my kicks.
When he returned he asked if she had been wearing her glasses all the time and whether or not she’d continued patching. I assured him that we had stuck to the prescribed regimen in a military-like fashion, and then he asked, “Has there been any change in her health?”
“I don’t know if this matters, but yesterday she was diagnosed with an ear infection,” I answered.
“Oh, okay,” he responded nonchalantly. And then he immediately turned down the lights, raised the chair and began testing her eyes. This involves covering up one eye to assess if she can see letters being broadcast to a mirror across the room. I sat there looking up at the letters in backward form over her head and watched in confusion and shock as she proceeded to misidentify almost every single letter, even the biggest ones. First with her left eye covered, then with her right eye covered, then with both eyes uncovered. With her glasses on she could only identify three of five of the largest letters in the test.
He pulled back, grabbed a tool and then briefly shined a light first into her left eye, and then into her right. After letting out an audible sigh he rolled his chair over to the light to brighten the room and asked, “Has she ever had an MRI done on her head?”
A… a whaaa… an MRI? What? Why? Um, hm…
“An MRI?” I asked. “No, no she hasn’t. Why would she need an MRI?”
“Well, she’s not making any progress at all, and that’s concerning.”
“But at the last appointment the head physician told me she was making remarkable progr—”
“No, not at all,” he interrupted.
“Wait—”
“Her progress this entire time has been like this,” he said as he raised his hand in the air to draw an imaginary horizontal line. Flat and straight. Like someone in a game of charades trying to depict Kansas.
“But at the last appointment you guys ordered a less intense prescription because she’d made prog—”
“Not really,” he interrupted again. “She’s not progressing, and there has to be a reason for it. It’s likely her optic nerves.”
“Wait, what?”
“I’ll talk to the head physician, but she’ll probably need an MRI so that we can get a look at her optic nerves.” The tone of his explanation was like a bored teenager who works at McDonald’s and is super annoyed that someone has asked for extra ketchup.
“Can you—”
“If her optic nerves are smaller than normal optic nerves then that would explain this,” he said.
“Okay…” My mind was spinning, turning circles, closing in on itself. “If that is what you find, then what?”
“Then what?” he asked back to me, confused.
“Yes, then what do we do then?”
“Oh, then there’s nothing we can do.” It fell out of his mouth like a wad of gum that has lost its minty taste.
“It’s inoperable?”
“Yes, totally inoperable. Her eyesight would remain as it is right now, and well…” He stopped to let out not a whole chuckle, just the first note of one. “As it is, right now her eyesight is so bad that she’d never pass a driver’s license test.”
I had so many questions I wanted to ask, things I wanted clarified, charts I wanted to see, but I physically could not get a word out of my mouth. My throat closed. I sat there completely unable to speak, my heart shattering for my baby girl. What can she see? What does her world look like? Would my child seriously grow up and never be able to drive a car?
A huge component of this paralysis was watching her misidentify every letter at every size. She said that a giant F was an O, that an mid-sized A was a Y. How could this happen in less than two months?
He looked at me blankly and said, “I’ll check with the head physician and get back to you… hm… later today, Monday at the latest.”
I finally let out a clipped whisper, “Patching. We should continue patching in the meantime?”
“Oh, no. No, don’t go through the hassle of that. I mean, why do any of that if this is something we can’t fix, you know?”
I barely remember walking out of the examination room. I have glimpses of walking through the waiting room, out the door and across the parking lot. I had Marlo’s hand in mine and rubbed the back of it with my thumb over and over again. I cried silently behind my sunglasses the entire drive home.
When I finally had a moment I texted her father in Brooklyn and explained what had happened. He was understandably upset, wondered why I had not asked certain questions (a. I was in shock, b. I was in shock, and c. I HAVE NOT EVER WORN GLASSES AND SOME QUESTIONS I DO NOT KNOW TO ASK), and demanded that we get answers immediately. So I called and left this message with the receptionist, “My daughter had an appointment earlier with Dr. R, and he said he was going to consult with the head physician before calling me back. But I have a couple of very pressing questions for him about what happened today. Will you have him call me?”
She said she’d write that down and deliver it to him immediately.
An hour went by. Nothing.
I called again and left this message, “Can you please have Dr. R call me about his examination of my daughter today? Her father lives out of state, and I need to give him some answers concerning what happened today during the exam.”
Same thing. Said she’d get it to him immediately. Another hour went by. Nothing.
10 minutes before the clinic closed I called again, at this point frantic and teary.
“Hi, this is the third time I’ve called to speak to Dr. R.,” I began.
“Oh,” she said. “Let me go look and see if he got your messages.”
I sat for over five minutes listening to classical music until she got back on the line.
“Dr. R said that he’s going to speak with the head physician when he gets back from vacation on Tuesday, and then he’ll call you. Okay?” she answered, ready to hang up and be done.
“NO,” I blurted. “You do not understand. My child’s father lives out of state, and I would like to give him some answers about what happened today during her examination. This cannot wait until Tuesday.”
“Oh!” she said as if she suddenly recognized a long lost friend from high school. “Have him call us and we’ll put Dr. R on the phone!”
I pulled my phone away from my face, stared at it as if inspecting a hairy wart and made the conscious decision to set aside my outrage for at least a few minutes with the health of my child taking precedence.
Twenty minutes later her father called to tell me how that conversation played out.
Ahem.
Dr. R probably realized how he had royally fucked up during that examination by jumping from point A to point YOUR CHILD WILL NEVER BE OKAY and downplayed the entire thing. Told her father that we didn’t need to worry. An MRI? Perhaps, but let’s not jump to that right now. Told him that what he thinks is that Marlo has a lot more patching to do! You know, that thing he told me not to bother with. And no, it doesn’t say anywhere on her chart that there is a history of keratoconus in her family EVEN THOUGH MY MENTIONING THAT VERY WORD DURING THE FIRST EXAM WAS WHAT GOT THE HEAD PHYSICIAN INVOLVED IN THE FIRST PLACE.
GODDAMN I COULD WRITE IN CAPITAL LETTERS FOR THE REST OF THIS POST AND NOT EVEN COME CLOSE TO EXPRESSING MY FUCKING OUTRAGE.
Now, behold the restraint with which I am saying this and not doing so in capital letters: I’m going to go ahead and give Dr. R and that clinic the benefit of the doubt that they so clearly do not deserve and say that the reason he would not take my call but would talk to her father is because he knows I would have reached through the phone and poked him directly in the butt.
This is how Mama Bear proceeds:
I called and scheduled an appointment with a top-notch pediatric ophthalmologist who works at Primary Children’s Medical Center up here at the University of Utah. The only reason I didn’t do that last October is because Marlo needed attention immediately and the next appointment with him was six months out.
This appointment is not until September. However, in the meantime I’m having her records faxed to a specialist in MN who is going to try and make heads or tails of it and will consult with him on a plan of action. I’m also speaking with patients and the parents of patients who have had successful relationships with other pediatric ophthalmologists in Utah in case we can find a faster solution.
BUT THEN THERE’S THIS YES MORE CAPITAL LETTERS WHAT? DID YOU ACTUALLY THINK I WAS DONE?
After someone suggested that Marlo’s ear infection could have affected her eyesight, could have potentially blurred her vision, I did some old fashioned reading and digging and more reading. And here’s what I want to know: if an ear infection has even the slightest possibility of affecting one’s vision (TURNS OUT IT CAN), why would that doctor jump to INOPERABLE OPTIC NERVES when he knew she had one? Why? And why in that tone? Why treat me as if YOU JUST CAN’T EVEN because I’d like more ketchup for my goddamn French fries?
And if even one naysayer comes in here and is all, “There are so many desperate places in this world, Heather, that you yourself have visited where kids don’t even have access to eye care and here you are being a drama queen,” my preemptive response is, “If I am not acting like a drama queen on behalf of the health of my child then what the fuck kind of mother am I?”