Blind Defiance

We have a problem with my daughter that my husband and I don’t know how to solve.    We need professional help because we’re just too far out of our level of child development and trauma knowledge.    Here’s what’s happening:

My daughter is almost completely blind right now.   This is a relatively new situation and it’s something she, we think, believes we may have caused because every time a procedure is done, some point in the future her vision gets worse.   As adults we’re terrified and depressed for her and powerless to do more than we’re already doing—everything we can.

What’s happened in the past few days is a level of defiance that’s confusing though.   Let me give an example.    What would you do if your five-year-old child stopped using utensils, played with their food, got a greasy mess on their body, clothes and the surrounding area.    What if they didn’t listen about using their fork, not spilling their drink in the airplane and eating like a child, not a baby?

But, what if the only way your child could find the ketchup was to feel around with her hand and hold it in the ketchup until the other hand found and brought over the french fry to dip it?   What if the only way she could find the napkin or drink cup was to fumble about the table space because they couldn’t see anything on it?

The thing is, these scenarios are both correct in that my daughter has been rebelling and acting inappropriate while eating, reverting to more child-like behaviors.    She is also unable to see and needs to use some of those behaviors to find and eat her food.     But where do we draw the line?    And when we draw the line, is it the right thing to do or do we need to support her more in this time of extreme stress while she’s lost even more of her vision?    

This is where we’re at a loss.   Good thing we’re seeing Dhruti tomorrow.    My husband didn’t understand what I was going through the last few days in Detroit until he was at home tonight at the dinner table and saw the fairly extreme behavioral changes I’d been talking about.    I hate to say it, but I was relieved he lost his temper at my daughter, mostly because I’d been feeling like a terrible parent for doing the same thing multiple times on the trip.

So we’re confused, albeit likely less so than my daughter is right now.   She’s resilient, but I want to be supportive in the best way we can be now and not rely on her ability to recover from our misguided parenting today.  

The Big Boy Update:  My son made Robin’s (of Batman and Robin) staff with my husband while his sister and I were away in Detroit.   It’s got a nice grip and has been painted to match the one Robin actually uses.   It was pretty impressive looking but what I didn’t expect was my son to do—with ease—some of Robin’s moves with the staff when I asked him how it worked.

The Tiny Girl Chronicles:   My daughter made a new friend today, Nash, who was on the same flight we were, coming to the area for some specialty surgery.    He and she played with her Paw Patrol characters and when we boarded and discovered we were on the same row, they say across from each other on the aisle seats and played with modeling clay and talked together for the whole flight.    He is apparently her new best friend, she says.