All About Her

My daughter is having a hard time lately.   She’s blind, but she’s going more blind.  She’s losing the very little vision she has left we’re worried.   She’s lost it, but can it come back?  That part we don’t know about.   We’re doing enough drops to drown her little eyes with different purposes to help keep her eyes as stable as possible.    But can they heal at all from the recent edema?   What is gone for good and what may return?

To say we’re understanding of what she’s going through isn’t a straightforward thing.   As parents, we hate this for her.   It’s heartbreaking for any parent to think of their child going through a medical trauma that goes on and on and has permanent, lasting damage on a child’s life.   But that doesn’t mean we have to parent her as though she’s broken.   That wouldn’t help her, it would handicap.  

I didn’t think much of how we were treating our daughter until I got to know her braillest last year.   As an educator, she has worked with many children in her career.   She made me feel good about how we were treating our daughter—as a capable person.   Sure, we help her when she needed it.   But we try to teach her to be independent and help her to learn, not just do things for her.

But things change when my daughter’s vision—the vision level she knows and has adapted to—suddenly changes for the worse.   She gets lost.   She’s scared.   And she needs more help.   My daughter isn’t a frail little waif wanting to be helped though.   She’s feisty.   And she isn’t an easy one to help.  

Lately, it seems the more vision she loses, the more everything is about her.   She’s not easy to deal with a lot of the time.    My husband and I don’t understand it.   But we have expert help and are going to get some guidance from her therapist.   Thank goodness for Dhruti.   I’ll have to let you know what she says, because things keep getting more and more interesting with my daughter.

The Big Boy Update:  I just found a bookmark my son made over the winter break.   It made me sad reading what he wrote on it but happy in a way too because he’s made so much progress interacting with other children socially.   He wrote, “My New Year’s resolution for 2018 is to ask friends to let me play with them.”

The Tiny Girl Chronicles:  My daughter had a very long ride to and from school last year.   This year so far she is the only student in her van.   Both to and from school.   She can get there and back faster in the van than she could with us because the van (or “taxi”) doesn’t have to wait in the carpool line.   I suspect there will be more students added to her route soon enough.   For now, she’s enjoying riding with Ms. Williams though.