The R-Word, It Is Personal

Today is Spread the Word To End the Word Day!  So each year, on this day, I share this post that I wrote in 2010. I think it helps people understand better why this word is so sensitive to me.
The R-Word, It Is Personal
By Diane Grover
February 23, 2010
Rush is saying it. Rahm is saying it. Sarah initially said some can say it, and some cannot. Recently, I heard that Colbert is getting in on the fun too. It is an interesting issue to be talking about. Some people are tired of hearing about it. I am one of those people.  However, my mother’s heart has compelled me to talk about it one more time.
When my daughter was young, I tried to teach people why it hurt me when they used the word improperly. Along the way, I had some people tell me, privately, that I was overly-sensitive to the issue.  Some people debated with me in public. They also told me that I was overly-sensitive. So I decided that perhaps this was something I needed to repress. I came to the conclusion that I was being overly “politically correct.” I had taught my children it was wrong to use it as slang.  I had done my job.  I could not control the rest of the world.  Besides, I told myself, most people don’t mean it when they say it.
I went through a time, where I would try to convince myself, that hearing the words “retard” and “retarded” thrown around did not hurt me.  I did not want to be one of those who assault our freedom of speech. I tried to accept it as just a normal part of our society. I tried to forget about it.
I finally managed to move on, and just be quiet when it was used around me.
That was, until recently, when a national debate started.  It all began when Rahm Emmanuel said “retarded” in a meeting. Friends and family sent me the articles that were written about it. I read every argument in both directions.  I found myself reacting as if I was a mama bear with her little cub being attacked.  The wound was opened again.
Then I was informed that Rush began using it to make a point.  Again, my heart was pounding. I thought to myself, “Not this word. Please not this word. Use another word to make your point, but please not this word.”
Of course the comedians are always quick to jump in on the latest gaffe that is made by a politician.  Many did their part to highlight this word in their routine, saying it over and over again, while the audience laughed.  My emotions were on a roller coaster.
Why? For a silly word?
For some, yes, it is just a word. For me, it is more than that.
When MaryEllen was born they told me they suspected that she had Down syndrome. We knew we could accept this; however, it still was painful to hear this news. Any time your child is hurt, you hurt for them. Hearing the doctor share with us what this could mean to our daughter was jolting.  We needed time to learn about it and like any new parents, we were worried about what this meant for her future.
Eleven days after she was born, her diagnosis was confirmed. I was called by the doctor who gave me the news. Tears streamed down my face, as I soaked up the reality of this situation.
Two days later, I received her diagnosis in the mail:
Cytogenetic analysis of PHA stimulated culture has revealed a FEMALE karyotype with TRISOMY 21 in all GTG banded metaphases analyzed. The result is consistent with the primary form (nonfamilial) of DOWN syndrome. Some of the phenotypic manifestations of this are hypotonia, round flat face, simian crease, epicanthal folds, small ears, mental retardation, flat nape of neck, etc. Genetic counseling is recommended.
There it was, in black and white, my daughter’s diagnosis.
I could see it. I could see the little ears. I could see the simian crease on her little hands. I could see the flat nape of her neck. In fact, I found myself kissing that sweet little neck over and over, to comfort her, or maybe to comfort me. I could see where she could have hypotonia. I could see the slant of the eyes.
What I could not see at this time was the "mental retardation" that they listed. MaryEllen was only 14 days old, and all I wanted to think about was my beautiful baby.  I just wanted to hold her and enjoy her during this time that she was so little.  However, those two ominous words kept popping up in my mind.  They were the words that I had to wrestle with the most.  At night, when everything was quiet, I would cry myself to sleep. My heart hurt. Those words would roll through my mind. “My daughter has mental retardation,” I said to myself through tears. It hurt.

In the quiet moments of my day, I wondered, “What will my daughter be like? Will she be able to understand fully what is happening around her? How “mentally retarded”, or delayed, will she be? Who will she be?” Yes, indeed, those were the words that cut deeply. They could have changed them to “cognitively delayed,” but I still would have to resolve to understand what this meant for my baby girl. Besides, that is not what they put on this paper. They used the words “mental retardation.”
I am a mom who does not give up easily. I battled my fear of these words by learning more about them. The first thing I did was look up the word “retarded.” This brought me new understanding.  Retarded, by definition, meant “slow to learn”. There, now, that is more like it. My baby girl would be slow to learn. That is much better. We all have areas in which we are slow to learn. I continued to educate myself by putting my hands on every book I could.   I was so inspired by parents who went before me. They taught me so much about the beauty and dignity of their children. I would cry as I read through their heartwarming stories.
Every day that passed I was more resolved to believe that my child was not her diagnosis.   MaryEllen would be MaryEllen no matter what anyone told me about what could happen. I was wrestling a giant, and I was winning! My daughter was my inspiration. Each day that she learned something new, she told me, “Mom, this was never about them anyway. This is about you and me!” She worked hard for everything she learned. Each milestone was amazing. We cheered her on when she started to crawl. We patterned her crawling daily, until finally she was crawling on her own. Later, after months of working on walking, she walked! I felt like I was watching the Olympics when her first steps came together, and she toddled into my arms! My heart raced with joy. It was an accomplishment like I had never had before. She was my fifth child, and I never felt like this before. Yes, through this experience, I feel like I know what it is like to climb a mountain. I feel like I know what it is like to win an Olympic medal. I absolutely know what it is like to overcome an obstacle.  A part of me felt that every time she learned a new milestone.  That continues to this day! We never take one milestone for granted.

So how does all of this relate to Rahm, Rush, Colbert, et al? You see, it is personal. I spent many dark nights, crying over the words they are laughing about. They haunted me by day, and put fear into me by night. I had to learn their true meaning, and push forward to accept them. And I did! And so, when they use them so casually, to describe how they feel about people they do not respect, well, truly, it hurts my mama’s heart. It took me a long time to understand what these words would mean to my daughter. Yes, she is slow to learn. But she is more than that. She is a champion. She is a star. She is my daughter. If they want to know why those words hurt me, all they have to do is meet her, and they would understand. She is more than her diagnosis. But reality is, those words are a part of our life. They are sacred. They are ours, whether I want them to be or not. Those words did not win. We did!
We overcame the hurt caused by those words. We came to accept the diagnosis and my daughter became my hero. Please, think of her the next time you almost say those words. And on her behalf, don’t.

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