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!

Not her

I'm sad tonight and I don't know why. I mean, of course I know why, but I don't know why it's hit me tonight. Most days I can forget that this will end one day. My day is filled with taking care of Sophia and I don't have time to sit around and think. Sophia has to eat every three hours to stay in ketosis for seizure control, she has to have her diaper changed, I have to count and crush medications and administer them four times per day, physical therapy, vision therapy, speech therapy, hospice visits, calls from her neurologist, weighing meals on gram scale, giving her a bath, preparing her feeding pump, washing syringes, testing blood sugar, testing her ketones...and when this is all over, I'll miss every bit of it. All the hard work and stress, I want it. I won't know what to do with myself without it. What will I talk about, think about? My world will end when hers does. Or at least I hope that it will. I don't know what it will feel like. I dont know how I will say goodbye. I dont see that I could possibly go on. It doesn't seem possible that I can lose her, that I will lose her. I won't be able to hold my baby, rock her to sleep, kiss her little nose, rub her head, hear her breathe, smell her skin, touch her toes, whisper "I love you" in her ear. Let a miracle occur, a cure be found. Let the doctors be wrong, this all be a nightmare. Let God take me, spare her. Let her live forever, let her laugh, love, feel, see, and do. Dont take her. Not Sophia. Not my baby girl. Not my heart. Not my very soul, my being, my life.

4 comments:

  1. Praying for you this morning and want you to know I am here for you, now and always. Tracy

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  2. I am so sorry Jaime. Oh how I wish there was something I could do to make you feel better. I wish there was something I could do to make Sophia not have this awful Disease. My heart breaks for you. I am praying for that cure, that miracle. I love you all!

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  3. She is absolutely adorable. I will keep you and Sophia in my prayeres.

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  4. Praying for you,Sophia and Jacob. Love, Mamaw

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