MaryEllen

It’s Personal
 
Rush is saying it. Rahm is saying it. Sarah says some can say it and some cannot. 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 it. I guess I am one of those people.

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. I also had some people who debated with me in public, why I was overly sensitive. So I decided that perhaps, this was something I needed to put down. I was being overly "politically correct". I taught my children, it was wrong to use it as a slang, so I had done my job and 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, it did not hurt me. I tried to believe that it was another assault on the freedom of speech if people cannot say this. I "tried" to accept it as just a part of our society. I tried to forget about it. I tried everything.

But then it happened. Rahm said it in a meeting. I read all about it. My reaction was that of a mama bear with her little cub being attacked. I found my heart racing when people would email me with news articles about his use of the word. The wound, opened again. Then Rush, using it to make a point. Again, my heart pounding. 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 current gaffe, so fasten your seatbelt, we are going for a ride now. Emotions 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. Alright, I can deal with that. Tears were flowing. My baby had a heart condition. We can do this, but I hurt for my baby.

11 days after she was born, her diagnosis was confirmed. I was called by the doctor, and given the news.Tears streamed down my face, as I soaked up the reality of this situation. 2 days after that, I received her diagnosis in the mail:

CYTOGENECTIC RESULT: 47,xx,+21
"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, cuz it was so cute. I could see where she could have hypotonia. I still can't tell what epicanthal folds are. lol The etc, are the slant of the eyes. Yes, those were there.

But then there were those two other words. Mental retardation. She was only 14 days old, and all I could see was my beautiful baby. But my mind was haunted by her future. And the words mental retardation on this sheet, were the words that I had to wrestle with the most. They were the reality of what we had just entered into.

At night, when everything was quiet, I would cry myself to sleep. My heart hurt. I would forecast the future. Those words would roll through my mind. My daughter has mental retardation. I would cry. It hurt. What would my daughter be like? Would she understand me? How mentally retarded would she be? Who would she be? Those were the words that hurt the most. I wanted to just enjoy my baby, but I could not get them out of my mind. They could have changed them to cognitively delayed, but I still would have to resolve to understand what this meant for my baby girl. And besides, that is not what they put on this paper. They used the words mentally retarded.

I am a mom who does not give up easily. I battled my fears of these words, by learning more about them. The first thing I did was look up retarded. There it was. "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 put my hands on every book I could, to be inspired by parents who went before me. They taught me so much about the beauty and dignity of their child. I would cry as I read through their heartwarming stories. Every day, I was more resolved to believe that my child is not her diagnosis. That MaryEllen would be MaryEllen no matter what they tell me about what could be. I was wrestling a giant, and I was winning! My daughter was my inspiration. Each day she learned something new, she told me, "Mom, this was never about them anyway. This is about me and you!" She worked hard for everything she had. Each and every milestone was a mountain climbed. We would cheer her on when she started to crawl. Then the months of working on walking, and 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, I know what it is like to climb a mountain. I know what it is like to win an Olympic medal. I know what it is like to overcome an obstacle. For a part of me felt that every time she learned a new milestone. And that continues to this day! We never take one milestone for granted!

And 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 by those words! We came to accept the diagnosis! My daughter is my hero! Please, think of her the next time you almost say those words. And on her behalf, don't!

Signed, Diane Grover ~ Mom to sweet MaryEllen

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.