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!

Take My Hand

Take my hand sweet girl, and Mommy will walk with you. We will walk through the forest, through the fields and farms, through the meadows of beautiful blue flowers. Take my hand and Mommy will guide you through this world, through the struggles, through the ups and the downs. Mommy will show you where to walk, which steps to avoid, and how to get there safely. Take my hand baby, and Mommy will take you on a journey through Mommy's childhood, how Mommy met Daddy, and how you came to be. Mommy will tell you embarassing stories of silly things that she did as a kid, so you can laugh at her, but secretly amaze that your mom was a kid like you once. Mommy will tell you silly stories about Daddy too, stories that Mommy has heard from your Granny Teresa. Mommy and you can laugh at Daddy together. And when he walks in the room, we will smile at each other and Daddy will ask what we are smiling about. But we won't tell him, because it's our secret to have. Take my hand darling, and Mommy will tell you how Mommy thought Daddy was the cutest thing ever when she first met him. How Daddy tried to pretend he didn't like Mommy too but Mommy knew better. Mommy will tell you how quickly Mommy and Daddy fell in love, and how Daddy proposed to Mommy. Mommy will bring out her wedding pictures and you will see how much Mommy and Daddy have changed! Mommy will remind you that most of the change is a direct result of you! Take my hand princess, and Mommy will show you scrapbooks she made for your brothers. Scrapbooks full of pictures and tokens of their childhood, and of course, all the times they said funny things or got in trouble. Each time you see your brothers, you will know that they were once little bitty like you and not the "cool" kids that they are now. Take my hand sunshine, and Mommy will tell you about the day you were born and all the events leading up to it. How Mommy prayed for you for as long as she can remember, how Mommy was so scared every second that she would lose you, right up until the moment you were placed in her arms. Mommy can still recall how you moved, your smell, your fingers and toes. Your first bath and how scary it was because you were a slippery little thing! How Mommy cried when she wasn't able to breastfeed anymore and had to put you on a bottle. How Mommy would stare at your beautiful face for hours and hours, never bored a single bit, because you were and are the most beautiful thing Mommy had ever seen. Take my hand sweet Sophia Grace, and Mommy will tell about your Mamaw Smith and Aunt Linda that are waiting in heaven for you. They went on ahead to make a most perfect place for your arrival. They are watching over us, even now, and one day, God will decide that you are ready to enter the Kingdom of Heaven, that He needs you more than Mommy does. Mommy hopes and prays that the day for that, is far, far away because Mommy can't imagine you being needed anywhere but right here in her arms. Mommy loves you more than anything in the world, more than life itself. And for now, just take my hand Bug, and Mommy will take this journey with you, right by your side, and Mommy will not leave you for a second, not for a moment, and we will enjoy our time together, and pretend that our time together, will never end, but will last forever and ever.

7 comments:

  1. You, sweet Jamie, are the bravest person I know.

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  2. Crying as I read this you were always strong and brave and Sophia is just like you. She has a wonderful Mommy to see her thru whatever she faces. Love, Mamaw

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  3. And A wonderful Daddy too. Love, Mamaw

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  4. Very touching! Love Aunt Tracy

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  5. I read your blogs and every time I am blown away by your heartfelt words. They make me smile and make me cry. They give me a glimpse of what you are all going through. Just a glimpse because I cannot imagine what your daily lives are really like. But most of all I can actually feel the love jump off the page. Sophia, Mommy, Daddy and big brothers, all of you are so amazing. You all learn every day just how strong you really are. I am so proud to call you family.

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  6. God bless you and your little one! ♥

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  7. Thank you so much Jaime and Jacob, for sharing this journey that you are on with sweet Sophia Grace. As parents, we can see and feel the love you have for her, the selfless dedication you have to her care. We enjoy seeing her sweet pictures. May God keep his arms wrapped closely around your beautiful family.

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