Tuesday, November 26, 2013

The Three Questions I Wish to have Answered

There are many things I'd like to know about how Evie processes things.  Often, when I need her to be honest about her feelings, she will start telling a totally fictional story-with characters who don't even exist. Today, my assignment for WEGO Health's National Health Blog Post is to write about the three questions that I would like to ask a patient with the syndrome by which our family is affected.  What I'm actually going to do, to put my own spin on things, is share the three questions I would like to ask Evie, but either I'm afraid to or I don't know if she would answer it truthfully.

First, I would like to ask Evie is she would rather see me cry over the things that break my heart, or if she'd rather I put on a brave face and not show her my fear.  I, obviously, balled when she was diagnosed with Wilms Tumor, when my grandma died, and when my dad died.  I know that seeing me cry heightens her anxiety, but I don't know if she'd rather I NOT cry in an attempt to help keep her calm.

When I had to tell Evie that my dad died, I just didn't know what to do.   Evie is a fixer.  She wants to make people happy.  I explained to her that Grandpa Dick had died and was in Heaven with Great-Grandma Ev; that we wouldn't have a chance to see him any more on earth here.  I recall her just saying, "Yes," and I said, "Can I give you a hug?"  Evie's reply was "No."  I said, "That's okay, but I am very sad that Grandpa Dick is gone, so I'm going to be crying quite a bit, and that's okay.  Auntie Jess and Grandma Jackie will be crying too.  It's just because we miss Grandpa Dick."  Then Evie said, "I know, I'll make a picture and that will make you happy." 

I know that seeing me cry makes Evie want to fix things, like she feels responsible for my moods.  I don't want her to feel that way, but I don't know how to communicate that to her, so I try to be as "happy" as possible around her, strong and unafraid.  I just don't know if that's the "right" thing to do. 

Another question I'd like to ask Evie is what she dreams about.  I don't know if she has good dreams, bad dreams; black and white dreams, or color dreams.  Her intense fear of blood draws makes me think that she would have nightmares about them.  Then, there was a time where she got locked out of school after all the kids had run in from recess.  Being that she's legally blind, and a little naive about going places independently, she wasn't sure quite what to do.  Thankfully, a student spotted her out the window and told the teacher, so they found Evie safe, but scared.  I wonder if she has dreams about scary situations like that now.  I don't ask her these kinds of questions, because I don't like to bring up scary topics if she doesn't bring them up, or if it's not necessary.  Her anxiety is such that when we aren't dealing with something that is frightening, I really would rather not bring it up and get her to start stewing over it again.

Praising with Skillet at
Rock the Lakes in Green Bay
The third question I would ask her is what her relationship with God is like.  A couple of years ago at Lifest, Evie accepted Christ into her heart.  It was dusk and Casting Crowns was coming up as the headlining band.  The speaker who preceded the concert had spoken about accepting Jesus as your Savior and had led a prayer of salvation.  When they asked those who had said the prayer and made a commitment to Christ to come forward, up popped Evie out of her lawn chair!  I ran after her because she was shoeless and she would be walking over gravel and surrounded by crowds!  They gave her a brand new Bible.  I'm so thankful to know that she did this, on her own, and that her relationship with God is hers to create and mold.  But I so want a piece of it.  Everyone does.  When you see Evie dancing and singing and praising; it's a little piece of Heaven right here on earth. 

Evie is unique, as are all kids; but with her speech delay, and her anxiety issues, it becomes very difficult to verbalize all of the things that a parent might be able to ask their "typically developing" kid.  I'm sure as the years pass and Evie gets older, we'll have more chats about these topics.  For now, though, I'll be thankful to share in her imaginary world, where she is 32, drives a pink Camry, and works at a coffee shop/church/school. 

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