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!

Church was fun!

I got invited to family day at Chambers Avenue Christian Church. And since I can't drive yet (not that I can't, but that Kentucky won't let me), mommy and daddy got to come with me too. And my big brothers, Jordan and Dyllan...lets just say that they weren't as excited about this invitation as me! So mommy started planning my outfit for church last week and as luck would have it, Aunt Tracy showed up in the nick of time this morning to help me get beautified. Mommy was busy getting beautified herself and daddy was busy trying to get my brother Dyllan out of the shower (for some reason, he was lying in the shower floor like he was taking a bath for about thirty minutes before daddy said "that's enough!!"). Mommy gave my new pretty dress to Aunt Tracy along with my pink tights. Mommy said, "well these tights are size 6-9 months and Sophia wears 12 months....think she will fit?". As if I'm fat or something. I mean okay, so my dietician did say I was picking up weight almost too quickly (keyword: almost!) but I believe healthy is the term to be used here! Aunt Tracy says "no way can Sophia fit in those tights" but do you think mommy was going to let that ruin my outfit?? Nope! Mommy said "too bad cause she's wearing them!". Aunt Tracy didn't even argue about it but I got her back for that: I maaaaay have forced her to change my diaper three times in a row! Haha! But that dress was so itchy and I really just wanted to wear a onesie!
Then off we went to church. Lots of nice people came to say hi to me and they prayed for me. The music was pretty too and I liked dancing with my mommy. And even though I slept through almost the whole service (just like my brother Dyllan), I know that Jesus was there because I could feel Him in my heart. I think mommy and daddy could too because they cried a few times too. Afterwards, when we got home, mommy had a hard time getting that dress off me. I started getting mad and crying a little but then mommy promised I would never have to wear it again....nailed it!! :) LOL

3 comments:

  1. Your dress might have itch alittle but you were geogeous in it. We girls go for looks instead of comfort.

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  2. Sophia Grace, I told mommy you just wanted to wear a onesie but she insisted on that dress! Boy, you sure looked beautiful though. You sure got Aunt Tracy...3 stinky diapers...really???? Daddy said "you want me to do it" and I said no, let me just gather myself first. When the 4th stinky diaper rolled around I told mommy I couldn't do another one. Sorry Soph!!! I'm glad you and mommy came to visit me this afternoon after church. I loved holding and snuggling with you. Looking forward to your sleepover tomorrow night! Love, Aunt Tracy

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  3. Love the picture of Sophia & Daddy! :) Tracy, so glad you are able to keep her overnight...I know this helps J & J out tremendously on sleep--makes them feel human again. :) See you all tomorrow in Lex.

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