Wednesday, August 3, 2011

Dear Rhombencephalosynapsis:

Dear Rhombencephalosynapsis:

For most of my life I did not know you. I had never heard of you. I can remember the first time I ever heard your name. It was spoken to me with a thick accent from my daughters doctor. For weeks I couldn't even pronounce your name. I did know that anything with a name like that was going to be a force. That is putting it lightly.

I go back and forth between hating you and simply not liking you. I hate that you make my daughters life difficult. I hate that you made her first three years be fill to the brim with doctors, therapists, surgery, tests, OT and PT. I hate that you robbed us of Mommy and Me classes because we were too busy dealing with your impact. I hate that because of you my daughter will never walk like her peers. She will have bald patches in her hair. Her toes and nails and teeth and hair won't form properly. She has a large head and a tiny body. She is going to have to go to high school someday and be made fun of because of YOU. For that I hate you.

The parts that I don't hate, I just dislike, are fewer. I don't like that she can't walk well or run fast but I do love that she is smart as a whip. I don't like that she flaps and twirls and rolls her head but I love that she has a wicked sense of humor. I don't like that simple tasks like feeding herself or pulling up a zipper cause her stress but I love that she is incredibly persistent. But here's the thing. Those things that I love are in spite of you not because of you.

You will NOT have my daughter, I won't let you. I won't let you run off with her and change who she is. I will not let you tear down my family. I will spend every minute of every day making sure that she wins and not YOU. You are insignificant. You are small and worthless. You mean so little to us that we barely speak your name.

If I would wish you away I would... but I can't. So I will agree that I have to live alongside you but know that you need to watch your back because when it comes to you I will never sleep and I will never tire. I will win not YOU.


A Mom of a Sweet Girl with Rhombencephalosynapsis

No comments:

Post a Comment