Out of Her Mind -- Musings on Education and Life

What a difference 8 months make!  My last post was right after Nadia graduated from preschool.  Now, she is in the 2nd half of kindergarten.  She has learned to read.  She loves school.  She says that she wants to be a teacher because her teachers take such good care of her (they make sure she gets her enzymes each time she eats at school).  She has even taken to assigning herself homework when she doesn't have any (Wonder where she gets this from?)  This week, I tried to get her to go to bed with the promise that we would finish her homework in the morning--but she wasn't having it.  She cried to do her homework! Her energy and personality manage to keep me from hyper-focusing on her illness all of the time and staying freaked out (as I was in my last post), though it still happens.  This winter, she has been plagued with a chronic hacking cough.  I am assured that this is the result of recurring sinus infections.  Like clockwork, this begins in earnest at 3 am, and it is

You're Not Sick--You're Nadia We walk so that you may dance a wild young rhythm on ballerina feet. We walk so that you may sing lustily, off-key, about princesses & love so that you can ask, "Do I get to go to Hollywood?" so that you can say, "Tell me no, mom, so I can practice crying." We walk so that your crying will remain just practice. Girl, you demand life like you demand food like you command your daddy to rub your feet like you sass me & say, "I know that" & roll your eyes. We're here to roll our eyes at cystic fibrosis, hands on hip, giving it full sass so that you can continue your strange way of calling people humans, your hourly costume changes-- We walk to spread your attitude--like you told Gavin, "I'm not sick! I'm Nadia!" My daytime Cinderella, we walk for you. B. Faulkner 4-26-2010   Come visit our team web page, Team Nadia Denise , for Great Strides.

Nadia before and after diagnosis: always smiling and STILL GROWING! I am not trying to write a sob story. My goal is to NEVER have to do that. My goal is to rewrite my daughter's story, to give her more time for her exposition, time for the rising action that will allow her to learn more about life and herself in the process, time for experiencing life's conflicts (commonly referred to as milestones and experiences). I want the resolution to be a long time coming; I am not interested in penning her epilogue. My dream is that she'll be around to pen mine. I can not change the fact that my daughter was born with cystic fibrosis. Nor would I have chosen not to have her here living her life, as I could have done had I known after conception that she was sick. In many ways, I am SO thankful that her disease was such a shock to me. Had I known prior to her conception that her father and I were both carriers of the cf gene, I would have felt it unethical to have a