Princess Sophia

Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!

Halloween

Okay, so I'm not sure what the big fuss is about. Mommy has been going on and on about my "first Halloween" and how much fun it was going to be. Ummm, no. We had to go shopping to get my outfit to begin with. I just wanted to hang out on the couch snoozing, but instead, we went from store to store, feeling different materials, checking sizes, looking at cute versus scary. But, I dealt with it because I was told that fun was coming soon. So today was the big day. Mommy had my Minnie Mouse all laid out (for days I've had to see that costume laid out!!), so then it was time to get dressed. Tights, a scratchy dress, and a headband...sound like fun to you? I didn't think so. Took mommy several tries to get it over my head so then I had to listen to what a big head I have! Really mommy?!?! Then the tights, shoes, and headband, gloves, blankets....then Mommy smelled something bad. Okay, so maybe that part was my fault! I forgot to tell mommy that I had to go potty. Soooo, off comes all those clothes, diaper change, and put it all back on ! Jeez Louise! Next, mommy put me in different chairs and kept wanting me to look at her for pictures. I wasn't too happy at this point though so no way was I going to look at her for her silly pictures! Then mommy saw that this silly dress was causing a rash on my face (I mean, it has a glitter collar mommy....a glitter collar, hello?!?). Guess what happened next; yep, all those clothes back off again. Mommy said it was a silly ole dress anyway, which is what i was saying, like the whole time. So mommy came to my way of thinking and put me in a onesie and pants. Aww, comfort! But then mommy smelled something bad again.... Eventually, Aunt Tracy, Mommy, and I made it out of the house and around the neighborhood for trick or treating. It was so cold and then it started sprinkling. I got four pieces of candy after going to four houses so we packed up and headed to the mall. Got even less candy there! One of the stores gave me $5 off my next purchase of hair products....I have no idea what that means, but mommy said it was a silly thing to give kids. Now, we are back home. Mommy changed me, put me in my soft pajamas, fed me, and gave me my medicine so I'm doing pretty good. I guess this Halloween thing is pretty fun after all.

8 comments:

  1. We had a crazy time, Sophia, but I loved every minute with you! You were the cutest one in Lex even if you did have to do an outfit change! Love Aunt Tracy

    ReplyDelete
  2. Loved the story and loved the pics.

    ReplyDelete
  3. Well, your Minnie costume may have been uncomfortable, but it was REALLY cute!

    ReplyDelete
  4. I think that you are beautiful no matter what you're wearing.

    ReplyDelete
  5. So adorable!!! That is the sweetest costume on the sweetest little girl :)

    ReplyDelete
  6. Loved this post! Tell it like it is, Sophia! I like a girl who speaks her mind!!!! The Northrips think you ROCK!

    ReplyDelete
  7. Both outfits were adorable. I definitely agree that the onesie seems much more comfy though!

    ReplyDelete