Words of Worry

My husband and daughter are in Detroit.   Tomorrow my daughter will be seen by her retina surgeon. He may or may not take action on her left eye to try and improve her vision.   I’ll have to tell you more about that tomorrow but tonight, I want to talk about how my daughter’s handling her vision situation.

I spoke with her therapist yesterday, asking her for advice on how to prepare my daughter for what might happen and how to handle her potential emotional storm if her vision is changed tomorrow for the worse (temporary) if the lens is removed.

Dhruti gave me some clear guidance on how to present what might happen with my daughter.   She also told us what to do if she wakes up and panics.   She said to let her panic.    Her feelings need to be recognized.   She said let her panic for as long as she needs to panic and to be there for her through it all.   We have some glasses for her and we hope we’ve prepared her for what tomorrow might bring, but since we don’t know what to expect ourselves, it’s hard to prepare.

One thing Dhruti told me was our daughter is beginning to process the permanent loss of her vision.   She understands she’s not going to see like she did before.   She knows her vision is broken and can’t be fixed.    She knows this at a four-year-old’s level of understanding, and I’m simplifying here, but that’s what’s happening.

Last night my husband and I tried to prepare my daughter for what might happen on Monday.   I began by explaining how we had all noticed her vision was getting worse and Dr. Trese was going to look at her eye and see what he could do to help.    Whenever I try to have conversations like this or about anything medically related what I typically get is avoidance by my daughter.   She will just act like you’re not talking to her about that particular topic.   Yesterday though she did something she’s never done before, she asked me, “am I going to die?”

I told her absolutely not, she was going to walk back with the nurse, breathe into the mask and then wake up with dad there in the room with you.    Then she asked another question, “is Dr. Trese going to cut into my eye?”   This is more information, more admittance of understanding than we’ve ever gotten from her before.   I told her if he needed to cut into her eye to make it better, he would and was that all right?   She said yes.

Then, because she was receptive, I asked her if she thought her vision was getting worse.   She always tells you what she thinks you want to hear, but this time she nodded yes.

So she’s worried, and she knows her vision isn’t going to heal completely—something we told her initially when we believed things were only temporary but don’t say now.    I hope tomorrow goes well as far as what can be improved.   She may wake up with decreased vision but without an abnormally shaped and clouded lens.  Tomorrow we’ll know more.

The Big Boy Update:  My son was looking at the iPad this morning and asked me, “what happens if I break open the glass?  Could I hop into the iPad?”

The Tiny Girl Chronicles:  My daughter’s in Detroit.   Four of her friends were around my computer today and wanted to send her text messages.   They would talk and I’d type.   Then, because you don’t need to read to pick emojis, I let them take over the computer.   My daughter called (via my husband) and all took turns talking to her.   It was quite sweet, hearing them say they missed her and loved her.