Day Eight – Emily

June 20, 2008 at 11:55 pm (Uncategorized)


 This could have been another Ten Things About Post, but, ten things would  hardly do Emily justice.  That is not to say that is deserving  of  having  more said about her than her sister is, or that there  are only ten things about Isabelle that are worth  saying.  It’s  just that Emiy is…complex.  To me, at least, she  is a puzzle.  Isabelle is like a book I”ve already read, Emily is a novel I could read fifteen times and still be surprised by the ending.

     It’s  not just that  she’s two.  I know that all two  year olds  are  hard to  predict.  Emily,  however, keeps me guessing all the time.  She somehow knows what her sister would have done in a certain situation at age two…then  does the opposite.  She watches  to see how  Isabelle reacts  to  a situation now, the does the opposite.  OR, she wants everything to be “Just like Isabelle.”  You never know.

     She  is  strong willed as all get-out.There should  probably be a different term for  it.  Feisty.  Spunky,  High-Spirited.  None  of  them are really descriptive enough.  WHen she  is mad, that’s  it.  If her mind is made up, don’t try to change it.  and don’t ever expect her to do something just because  you ask her to.  She’ll just say, “No thanks.:

      Before Emily was born, I used  to  worry that  Isabelle’s little sister would always be stuck in her shadow.  How could any child compete with her?  Unfounded worries, completely.   Now, I worry that Isabelle will be the one playing second fiddle to a younger sister who simply will  not be ignored.  When we first moved to our “new” neighborhood, Emily was eight months old.  One night, after dinner we were out for a walk and talking to  some neighbors when another couple with a baby younger than Emily walked  up.  I was holding Emily.  When our neighbor bent over to talk to the baby i n the stroller, Emily arched her back to  get right  in the neighbor’s face.  She gave the biggest, sweetest grin, and when we all laughed, she clapped her hands.  That, is classic Emily.  “Hey, Look at me!  Look at me!  Yaaaaaay!  YOu’re  paying atteintion to me!”

     Cystic Fibrosis certainly doesn’t play a small  role in her life.  I firmly beleive that,  somehow, she was given the personality she’s been blessed  with in  order to live life to the fullest with CF.  SOme of her stubborness  I’m sure, is also the result of the demands that we put on her.  “Emily, you HAVE to do  your vest.”  “Emily, you HAVE to take your enzymes.”  But, there is, and always will  be, so  much more to  Emily than CF.  I don’t  think her high school classmates will know  her simply as, “That girl who’s always sick.”

     There are SO many things I  could write about her.  Like how her speech is just taking off, how smart she is and how observant she has always been.  I could fill pages, because, as I said, she is complex.  And Intense. 

     I love her.  WIth a love so fierce that it hurts me sometimes.  The thought of losing her to  this damn disease sickens me on a daily basis.  Yet, somehow, I don’t worry about her.  She will live her  life with  CF on HER terms, and  she will die from  CF on HER terms.  It’s the  rest of us who will have to cope when  this brighest light burns  out.

When  I was  pregnant with her a  very wise mom told  me that each of her three children challenged her in a different way.  HEr active  son challenged  her phyically.  Her middle daughter challenged her emotionally.  Her oldest challenged  her intellectually.  I loved the  thought of that.  To be challenged by our children.  To see them  as a force  that makes us grow and develop.  That  is the purpose of  parenthood.  And, beyond that, to be impacted so differently by each child, each child completing a different  aspect of  us.

     Emily challenges  me in every way.  If Isabelle is the one who taught me  how to  be a mom, then  Emily is the one who is teaching  me how to  be me.  SHe is pushing me, every day, toward the next step in my life, toward  being a more complete person.  I have  a  responsibility to make sure that  Emily LIVES while she is alive, and that makes  me LIVE too. 



  1. Holly said,

    Hello Tami,
    I love this post so much! Your Emily seems a lot like my Ojaio. I have to ask you, since your clinic also does the toddler pft….how often do they have you doing it? They told us they would like to do it every six months, but that seems like too often if everything is going good. I’m just wondering if that is standard. I think I would feel better with once a year. Thanks for commenting on my blog, and it’s nice to meet you in this blog world. You have a new reader also……Holly.

  2. Beverly said,

    Hi, I came over after reading your post on the forum. Thisis such a great blog….a wonderful way for you to chronicle your summer events with your girls.

    My little granddaughter, Ella, has CF. She has such a great, outgoing personality. I’ve said to many people that I do believe the God gifts these children with extra verve and love for life. I love your thoughts about your daughrer here

  3. Carla said,

    I love this post. I was very much like Emily when I was young. And I cried so hard… I wish my mom would be able to admit how much she would like me to live life to the fullest – instead of worrying about me all the time.

    When Emily grows up, she’s going to know how lucky she was to have a Mom live life to the fullest with her. 🙂


  4. Debbie said,

    What a beautiful post!

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