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!

A Special Mother By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.
This year nearly 100,000 women will become mothers of a special needs
child.
Did you ever wonder how mothers of these children are chosen?
Somehow I visualize God hovering over earth selecting his instruments
forpropagation with great care and deliberation. As He observes, He
instructs. His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to
profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a special
needs child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a special child to a mother who
doesnot know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a
sea of self-pity and despair. Once the shock and resentment wears off, she'll
handle it."
"I watched her today. She has that feeling of self and independence
that is so rare and so necessary in a mother. You see, the child I'm going to
give her has her own world. She has to make her live in her world and that's not
going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect - she has
just enough selfishness."
The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word'". She will not
consider a "step" ordinary. When her child says 'Momma' for the first time, she will be
present at a miracle, and will know it! When she describes a tree or a sunset to
her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see...ignorance, cruelty,
prejudice....and allow her to rise above them. She will never be
alone. I will be at her side every minute of every day of her life, because she is
doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in
mid-air.
God smiles, "A mirror will suffice."

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