Maxine had her first appointment at Dartmouth Medical Center in Hanover, NH today. We make the drive down frequently for Evelyn. Max saw the geneticist there. She seemed great and has an energy with which I am really comfortable. It was a relief to have a clean slate with a doctor. She didn’t say a peep about nursing. Phew.
Like me, she seems to feel it is possible that Maxine has some sort of overgrowth disorder. She is running a test for Beckwith Weidemann and taking a look at some of Maxine’s little chromosomes.
Maxine was not too happy to be in another hospital. She has obviously connecting the dots when it comes to that. So we are going to do the blood draw next week when we go back down for Evelyn’s sedated hearing test. The fun never stops here.
I couldn’t help but remember a time when both girls screamed in the car. Non stop. Seriously. It was horrible. I often ended up crying as well. They have both turned into peaceful riders. I can’t help but to think that the universe intervened on my behalf knowing that we would be taking these frequent jaunts down to NH.
I will keep you posted as we learn more.
Today was the second day that Evelyn returned my wave from the school bus window. I’ve been waving for nearly two school years.
Isn’t it amazing how one little palm held up to the glass can make my heart soar. How it can leave me standing in the driveway waving frantically and saying, “yes, wave. you’re waving. you’re awesome. you’re waving to mama” etc. Even though she couldn’t hear me. I went on and on.
She left her hand against the window and a little smile touched her lips. I think she knew that her mama was making a spectacle of herself and was amused.
After her bus was out of site and I was walking down the driveway, I realized that I had a huge grin on my face. I love when that happens. Not even realizing that I am smiling. I don’t think that I used to do that before I had my girls. Now it happens all of the time and I love it. How extraordinarily lucky am I to be so happy that I get to walk around smiling without even realizing it?
Have I mentioned lately how much I love my girls? I am grateful for the beautiful simplicity that they have brought to my life. I am grateful that they have boiled happiness down to a little palm pressed against the window of a bus.
I’ve never thought it was okay to say the word “retarded” in a derogatory way. It bothered my long before I was ever holding Evelyn in my arms. But now it carries an extra little kick to my heart. It shocks me to hear/see so many of my friends casually throwing this word around.
I’m making this personal. Evelyn has an intellectual disability. When you use the word “retard” or “retarded” in a derogatory way, you further exclude her. You tell her, you tell me, that she is not accepted. The word has become a description for negativity. A description for something flawed. It is a hateful word. You spread hate. You hurt my Evelyn. You hurt me. You hurt your children. You hurt our beautiful world and all of the beautiful people in it.
I hear people say things like, “you’re being overly sensitive” or “people are too PC” when they are called on the carpet for using this slur. What does that even mean? Too sensitive? Too PC? How can we associate attempts not to offend other human beings with negativity? If you would rather hurt my child than stop using “retard” that is certainly your right. But your attempt to pass it off as some sort of stand is a miserable failure.
Why should our desire to use a word be stronger than our humanity? Is our vocabulary really so limited that we just can’t drop a word from it? A word that hurts and some of the most vulnerable members of our world? A word that deeply hurts me. My family. My beautiful daughter.