Wednesday, January 19, 2011

tiny dancer

This week I miss my little Brin.  Since her last doctor appointment she has had more energy, but that kind of energy is usually met with a huge crash at the end.  Some days she does well, and is full of life, and there are some days where instead of articulating what she wants, she screams in rage if you guess wrong.  I find myself playing the guessing game more and more as the days tick down, and the more we play, the more furious she is with me for not knowing what she wants.  It can be something like wanting food, which starts off as, "I'm hungry" I ask what she would like and she screams at me, so I offer her a variety of snack ideas, all things I know she loves, and she screams at every suggestion.  I eventually have to just walk away, and let her calm down enough to tell me what she wants, and in most cases she's worked herself up so much that she feels sick and her appetite dissipates. This seems to be the ebb and flow of most of my day that leaves me scrambling around the house for the correct toy, or the perfect snack.  There are times that it has nothing to do with an object, sometimes Brinley is just miserable because someone looked at her wrong, or Carter was being "mean" trying to resolve this is also a task because she won't tell me exactly what happened, or what was said, again, she screams.

I can only imagine what is must feel like, in her little body, all those chemicals floating around, all of her organs feeling strange with the medication.  I know how I feel when I have a common cold, or a flu bug, you just feel off your game, and strange all over.  So I cannot fathom what she's experiencing, her whole body must feel like an intruder.  The kicker is that we're only 2 months into a 2 and a half year struggle now. 2 and a half years, we haven't even put a dent in it yet, we're still newbies at this.  I miss my little girl.

Monday night she found her ballet bag, everything was still in it from the last class she attended in late October.  She spread out her slippers, tights, wrap sweater, and bun nets all out on the floor in front of her and said, "when I get better, I'm going to dance and dance and dance forever, and nobody will stop me", no one can stop you baby.

1 comment:

  1. My Dear Sister Morgan,

    This entry for many reasons has me missing you, Blake, Carter and of course my beloved Brinley, Brincess Ballerina so much. It's overwhelming. The anger is overwhelming.

    I am not trying to steal your thunder by writing this, but rather express that I feel the pain so deeply for Brin, for you, for Blake, Carter and for your parents. Brinley as you know is the light of my life. I can't explain it to anyone really but she is so special to me. Her Auntie Bear. She is not special because she has cancer, not because she is sick but because she just is.I think about how she and I can whisper to each other sharing secrets. That is my favorite thing. This tiny amazing light that makes my heart happy at the mere thought of her. She is an angel who walks along side us. And I am beyond thankful that I get to be her aunt. The world is a better place because she is here. I can't wait for Mackenzie to know her.

    I feel frustrated that I can't help. I wish I could take it away. But know, I am here. Any time you need me I am here. Always. Forever. And ever. I love you Morgan, I love you Blakey, I love you Carter and I LOVE YOU BRINLEY BALLERINA! And when you are well, we will dance together! I PROMISE!

    With every breath I take, I love you more-
    Auntie Bear