Wednesday, November 5, 2014

When the Heart Hurts ~ WAGR Wednesday

Photo by Erin Moore Photography
Yes, my daughter is legally blind.  Yes, she is a cancer survivor.  Yes, she has high blood pressure and the possibility of kidney failure down the road.  Yes, she is developmentally delayed. But what do I fear the most?

Her heart being hurt.

I was picked on as a kid, and I know how much it made my heart hurt.  I don't want to see her go through that.  But here she is, a ten year old who still sucks her thumb.  A ten year old who is scared to lock a bathroom stall door for fear of being locked in.  A ten year old who, when the rules of the "game" change, or when someone doesn't WANT to play it her way, will break down into tears and not listen to reason. 

I feared it a "little" when we lived in WI, but that started to wane as we were becoming more and more woven into the fabric of the community.  I saw how the kids loved her, her good parts and her not-so-good.  I saw how they just kind of attributed some of her quirks to "that's Evie."  So, when we decided to follow God's plan to take us 1800 miles away to Nevada, it was the social changes that made my heart hurt the most. 

School work, we can deal with. New doctors, we can work through.  Getting new medicaid coverage, just a matter of time and mountains of paperwork.  But, friends...friends?  How do you establish the same types of friendships that took nearly a decade to create?

Last week, the ugly beast of Evie's anxiety reared it's ugly head.  Her amazing group of girlfriends were at recess with her, and they had planned to play school (just like Evie loves to do), but then some decided that they DIDN'T want to play school.  I guess that didn't go over well, and there were tears from Evie...and, if you've ever seen the tears and reaction to "plans changing" for her, can get pretty dramatic.  The teachers took care of the situation, and that was great.  I didn't really think anything of it, because it didn't seem to bother Evie all that much, so I thought, "no big deal." 

Until Monday...

I'm used to seeing the girls surround Evie and just kind of absorb her into the flock when I drop her off in the morning.  They USUALLY give me a big hug, and start chatting about their weekend, while Evie is, not-so-subtly, trying to get me to leave.  But, on Monday, there was an odd silence when we approached the spot where her class lines up.  The girls were already involved in their own conversations, they looked up at us and smiled, but Evie didn't get sucked into the circle like she usually does. 

I saw the blank look on Evie's face, like there were gears turning, but she didn't quite know what to think. She just stood there, staring at the circle of girls.

"How about if I stay and we can chat?" I asked.

"No." said Evie, not removing her eyes from the circle.

A girlfriend strolled by and said, "Hi, Evie, how was your weekend?"

"Good," Evie replied with a smile.

"I'm going to go get in line," said the friend, excusing herself.

Evie turned around and went to the back of the line of backpacks that held the students' places on the ground.  Still the circle of girls didn't break up, or open, or invite.

Why did this feel so tense to me?

A boy walked up to Evie and started talking with her, so I carried Evie's "big book bag" over to her (it holds her assigned reading which is enlarged so she can read it with her low-vision).  I set it down and gave Evie a kiss.

"I love you, Peanut and I'm excited to see you after school, and then tomorrow is a no school day, and we can spend the whole day together!"  I said, adding the last part as a comfort, more so for me than for her.

On  my way out of the playground, I tried to hold back the tears.  Thankfully, my sunglasses helped mask my blinking eyes.  I started to recall the story of the playground drama from Thursday (we had Friday off of school)...and I realized that the awkwardness and tension may have been coming from that.

Oh worst fear!  They had seen a meltdown and now things were weird.  To use my Minnesota-Girl vernacular, "Crap."

I had a lot of other things on my mind that day too:  The medicaid paperwork was due and I hadn't had a callback yet from my two messages I left with questions on how to fill it out; I still didn't have access to Evie's chart at her new medical specialist's office, so I didn't have a way to get them some necessary documents; and I was trying to figure out how to prove to medicaid that Evie doesn't qualify for SSI when a parent can't sign a child up for SSI on-line, so you have to go to an office and do it in person, and yet I only had a week to get the papers back to the Las Vegas office. 

I became a complete emotional wreck. 

This is when the heart REALLY hurts.  When all the weight of WAGR piles on and you don't know how to fix ONE let alone ALL of the problems. 

Evie's SPED teacher phoned me in response to a distraught e-mail I sent her.  We agreed that this is a difficult situation.  That the kids need to learn not to take this type of thing personally; that it's Evie's inability to cope with change well, and that it's okay to not let her get her way.  I wanted to let the teachers to know that I don't expect kids to play with Evie if she's being difficult; that we can give her a choice to play cooperatively or to have some alone time, but that demanding everyone do everything her way is not an option.  I'm so thankful for her teachers who are so eager to help Evie "fit in" and yet teach her the right way to socialize.

Thankfully, we had yesterday off of school, so I was able to protect my bird the way a momma bird does.  Today when I dropped Evie off, it seemed like things were back to normal for the most part.  Her friends were enthusiastic and welcoming and warm. 

Maybe I had over-reacted.  Maybe I had let me own  past hurts affect how I saw this situation.  Maybe there were a bunch of other reasons why Monday morning felt different.  I'll never know.  But I do know that I wanted to share the heart-ache that we feel as parents of kids who are "different".  That sometimes, the medical fears play second fiddle to the socialization fears. 

That sometimes the heart.


  1. Tammy, I think part of that is being a mom. I've been upset for my children when they were mistreated by a group of kids especially when the social ostracizing came from an individual controlling a group. That said, I feel your pain too about the special needs and wanting so much for them to be accepted and welcomed into the circle. Just as a spec. ed. para I would get irritated when my kiddos were mistreated or left out. It often seemed the culprits doing the cutting, mistreating, changing of play and roles were children who were jealous of the attention the child was getting. Then again, sometimes it was the spec. needs kiddo not wanting to bend. When a spec. needs child perceives and/or actually does have a loss of control or is stressed, they tend to try to grab more control especially when they feel pushed to play something they are unfamiliar with or haven't played before. I remember trying to encourage relationships and the sharing of control while trying to stay on the periphery to help them with autonomy. It was hard at times. I knew it was healthy and wanted the children to go through their drama and learn to work things through on their own but they are young and new at maneuvering through some social things others have mastered. The added social stress sometimes it gets to be too much to work through for them and they shut down. Some days I'd have off or go on break and come back to hear about a meltdown from some control issue incident. Sometimes I was blamed because they said I coddled too much. I didn't. Knowing how my heart hurt even as just the para. I can't imagine the hurt you must feel. Please know Evie, you and your family remain in my prayers. God bless and keep you!



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