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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