03/21/2026
It's SATURDAY!!! This week… I’m still processing it.
After waiting 3 months for my sister’s eye appointment, we finally got there, sat for over an hour, and were finally called back.
The assistant asked, “What brings you in?”
I remember thinking… it should already be in the referral.
But all they had was one word: Keratoconus.
I explained, “Yes, she has that—but she also has very low cognitive ability. She was referred here because she needs help with treatment.”
The assistant stepped out to speak with the doctor.
And then he came in.
I could feel it before he even finished the sentence.
“We can’t help her here… I’m sorry.”
He went on to explain that she would need to go to Children’s Hospital of Philadelphia for a procedure called corneal cross-linking, and it would have to be done under general anesthesia.
My heart dropped.
After 3 months of waiting…
After rearranging schedules, showing up, advocating…
We were right back at the beginning.
“We’ll refund your co-pay and cancel today’s appointment… but we can’t help her here.”
And that’s the part people don’t always see about caregiving.
It’s the constant navigating.
The miscommunication.
The emotional hits you take while trying to stay strong for someone else.
My sister’s condition is REAL.... She can't see.... Keratoconus is progressive, and for individuals with Down syndrome, it’s even more common and often more complex to treat.
This isn’t just about an appointment.
It’s about access. Awareness. And systems that need to do better.
So today, I’m giving myself space to feel it… and then I’ll regroup and keep pushing forward. Because that’s what caregivers do.
đź’›
