Friday, October 21, 2011

Sunday, October 16, 2011

The good stuff.

Life is all about balance, it seems. Finding that perfect balance of good and bad, happy and sad, love and's what we humans strive for. We crave it. And, at the end of the day, I think we all hope and pray that the scale tips a tiny bit to the good side. Last week was hard for me. Although I did my absolute best to put that new diagnosis out of my head and just move forward, I'm still human. In the dark of the night, words haunt you. For the past few days, those words have haunted me.

Today, I took a step back and really thought it through. The words "brain bleed" haunted me. The words "cerebral palsy" haunted me. The word "stroke" still haunts me. "Shunt failure" will ALWAYS haunt me. Still...they are only words. I need to achieve a balance!!

So, tonight was the first time PeeWee's sang for the year. To be 100% honest, I dread the performances. I can remember when Gracie was really little, watching the kids up there singing. I would smile and giggle and daydream about when she was old enough to sing with them. My daydreams didn't include me having to stand next to her and tell her to stand up, stay still, don't jump, etc. That's what I do though, and I do it gladly. It was our choice to have her be in the club. It would have been much easier to just have her sit it out until she could stay still and pay attention. She has an 80% injured brain though, so whether she'll ever really be able to sit still is kind of up in the air!! We wanted her to be with the other kids her age and be a part of the activities of the church. She gets so much out of it, too!!

Last year, she stood up there with the other PeeWee's every performance, and never uttered a word from the songs. It looked like tonight would be the same. The kids got through the first two verses of the song and she never even tried to sing (though she knows every line). Then the third verse started and she got excited and jumped up and down and said, rather loudly- "This is my favorite song!!" Then it happened. She sang. "He invites me to His bakery table. His banner over me is love." Yes she said bakery. It's ok, I'll take it.

I almost made it, but I didn't. I had tears streaming before we got off the platform, and had to go to the ladies room to just sob for a few minutes. You know those wonderful, POWERFUL, cleansing, HAPPY tears? Some more words that haunted me?? "She may never talk again." Well, tonight....she sang.

Balance. Tonight, it's tipping toward the good stuff.

Tuesday, October 11, 2011

The hard stuff

Sometimes life is just plain hard. Today was one of those days. I was trucking along at work, loving my job, but still counting down til I got to get home to my family. As I do everyday. My phone rang and I saw the 585 area code. I recognized the number as Gracie's neurologist, and knew immediately that she was calling about the testing that Grace had done at the beginning of this year. She is honestly one of my favorite people, so I look forward to our monthly phone conversations. She also agrees wholeheartedly with me about trying every non medicine intervention before going to medicine, so it makes it easier to get along with her.

We chitchatted for a few minutes, as always. She wanted to know all about kindergarten and Sunday School. She asked how John and Josiah were. She asked me what color my hair is--- I had mentioned I was coloring my hair the last time we spoke, and she remembered. See why I like her? Then she took a deep breath and I knew it was coming. THE HARD STUFF.

Grace had an IQ test back in the summer. The results were used to help get her into her class at school, so I knew they weren't great. Dr. Hughes said that for a child with Gracie's history and extent of brain damage, they would EXPECT a score of between 10 and 15. Grace scored in the low 70's. Isn't that amazing? It's awesome!! However, average is around 100. SOOO...I had to hear a word that I hate. I had a whole post about it not so long ago. "Grace is considered functionally mentally retarded." I wanted to scream. I wanted to tell her how crazy she was, that those test scores mean nothing. I wanted to tell her that my daughter can hold her own in a conversation with adults, she has a huge vocabulary, and she can remember the words to songs after hearing them once. I wanted to cry...and I did. I walked outside and around the corner, sat down in the grass, and I cried. Then I regained my composure, went back inside and thought about what she had said.

"She should be on the other end of the scale."
"There is no logical or medical reason why Grace functions so well with so little working brain."
"She's doing awesome. Her score went up 23 points in a year."

That word that I hate? It's just a word. It doesn't mean anything. Just like when autism got thrown at us, I have to realize that these diagnoses are just terms used to describe what we already know. What we do with them is what matters. I could throw in the towel and give in it. Or I can look at the bright side...She's smart as can be, but it's almost impossible to test her. She's way above and beyond whats to be expected of her!! She's gained over 20 points in one year!!

So that's where we are today...same girly as always. Mommy is just struggling with the hard stuff.
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