Insurance won’t cover our out-of-network imaging orders. But, we’ve managed to get in with a new specialist who is in-network, and with a short turnaround time.
Today’s doctor walks in with long hair flowing to the top of her hips. It is wavy, but clearly has had its curls brushed through. She leaves it undetained and it sways with her stilted movements. It’s been enhanced with blotchy streaks of highlights and red dye, a job that looks far below her pay grade, but I remind myself to be open-minded.
She’s thin, her back curving over into a deep arch, caressed by a lace blue top. She walks slowly, feet close together, nearly teetering on her atrophied legs. I think to myself that she must be 100 years old.
But the age doesn’t show through her manner of speech. She’s as gruff as any specialist. “He looks big for 3 months”. Most people say this with an edge of humor, an indulgence in the quaintness of fat babies. It’s flat coming from her.
“Well, he’s almost 4 months old, but yes, he’s a big boy,” I respond. I say it as demurely as possible. When someone is integral to the future healthcare decisions of your child, you feel pressure to be well-behaved. Or maybe that’s the introverted young girl in me coming to light.
She acknowledges that it’s because he is breastfed and prattles on about all the well-fed children she’s operated on.
“So, did you guys just get lost on Google about Horner’s syndrome, or what?” Man, this lady has some bedside manner, I think to myself. Again, I gently prompt her that we were referred by a different neuro ophthalmologist. My husband drops his name into conversation, and she dances with recognition of what I can only assume was a colleague of some kind, at least in passing.
From there, she is kind enough. She uses a form of the dilation medication which can be misted into his eyes, rather than prying his eyelids open like the last doctor did. He only cries for a minute, but otherwise is curious about his new environment.
I’m holding my breath, and I continue to forcibly breath for another 20 minutes.
When she comes in again, she is still lacking something of compassion in her tone. She asks about our vaccination status, something that feels wholly irrelevant to the worries we are carrying, then continues with her impression.
“Yeah, so he has something called physiologic anisocoria, happens in 20% of the population. I myself have it, which I found out while I was a nurse before I went to medical school.” She hands us a slip of paper with a paragraph of information and says we can go.
I’m ready to run out of the room with this answer; she has thoroughly put me off, and I’m ready to figure out paying for the scans out of pocket.
Quietly, my husband asks why the other physician would order scans, and she does not find them to be necessary. Here, her explanation is short, but sweet. She better explains the dilational lag she was looking for, and didn’t find. This matches the information the first doctor gave us, but she explains the other symptoms she’s looking for more thoroughly. She ends with a plea to me: “I wouldn’t put my own child under anesthesia given what I’m seeing here.”
I drop my eyes. I just want to go. We have spent months swirling through the ups and downs of wondering if we’re going to live scared for our boy, or lose our boy. We’ve spent hours talking in circles about if it’s right to sedate him, if we can survive this anxiety, what we would do if we had to pursue treatment. We’ve spent dates in cars, looking at a setting sun, letting our anxiety run through us in spurts of tears, and deep, silent sighs. She doesn’t understand how this has impacted our conversations on gratitude, and joy, fear and presence.
I’m feeling doubt about the conflicting decisions, despite their underlying similarities of explanation. I need time to think, away from her gravelly smoker’s voice, and protruding collar bones. “Well, thank you.” I say and we pound our way down the stairs, wondering if we can now lean into releasing the fear.
To be continued…
Jess and The Fiat 