Wednesday, September 15, 2010

How must she feel?

The girl who coined the term "Avi Do It," and lived it to the letter.

The girl who was fiercely independent and could do everything.

The girl who made it a point to take full care of herself.

The girl who could zip zippers,

and put on all clothes.

The girl who could put her own diaper on,

while in diapers.

The evolved girl, who could fully go to the bathroom herself,

including washing her hands.

The girl who would wrestle any pair of shoes into submission,

upon her tiny, little feet.

The girl who could button buttons,

like the best of them.

The girl who would sit and analyze,

every single obstacle, until she overcame it.

The girl who would grab her bib out of the drawer and put it on herself,

and then climb up into her tiny chair at the table.

The girl who wasn't afraid of anything,

and grabbed life by the horns.

How must this little girl feel?

The one who is completely dependent.

The one who cannot take care of herself.

The one who cannot zip zippers,

put on a diaper,

go to the bathroom,

wash her hands,

The one who has her clothes,

and shoes,

picked out,

and put on for her.

The one who cannot button buttons,

get ready to eat,

feed herself,

or eat much food by mouth for that matter.

How must she feel?

To go from complete independence,

to total dependence!

The thought is...




  1. I imagine she must be frustrated too but at the same time overwhelmed by the love and care she feels from her mom and dad.

  2. I often wonder similarly about my sweet Jeremiah that is traped in his body that won't work and all, but he has never been able to do those things so I KNOW for your sweetie it is so much worse. Though I am sure she loves having your constant love and care for her and that makes up for alot I am sure

    PRAYING for a MIRACLE for Jeremiah!

  3. Yes, this is an unimaginable thought to have, wondering how she feels. I am sure that her determination and frustration is what is going to keep pushing her forward to accomplish more and more. I am also sure that she is comfortable and happy knowing that the people she cares most about are right there with her every step of the way, cheering for her, talking to her her, working with her and most important,loving her .

  4. i have been at the OTHER END of the spectrum with my parents as they made the change from independent to totally dependent......

    my mom was so gradual that you would hardly notice the changes EXCEPT SHE DID and it frustrated her to no end.....which left me feeling so helpless

    my dad it happened so suddenly, overnight it seems and the shock, surprise & indignation he was left with......again left me feeling so helpless

    i know you feel much the same as i did....and yet the difference between avi & my parents. they were at the end of their journey.....she is only at the beginning.....AND

    she has already proven she is STILL that fiercely independent girl that she has always been......look how far she has come in the last year.....she is surpassing everything the medical field would predict for a person that has suffered and endured all that she has....and she hasn't quit yet!!

    One day she will be able to look back at your journal and read about all that she accomplished, maybe she will fill in the blanks for you and tell you what she was thinking & YOU are her inspiration

    <3 ~j

  5. That independent girl is forever seared in my brain. I can see her feeding Lily a roast beef sandwich so clearly it is like a memory frozen in time. So many little snapshots are forever with me. I think that independent spirit still shines. Seeing her do floors a while ago showed her spirit loud and clear. Such determination your little girl has. Your little girl is truly remarkable. Love ya

  6. I"m positive that it was the little girl you describe that has gotten her to where she is and kept her fighting. She's still strong just in another way, but you are so right how must she feel?

  7. I agree, the thought is indescribable. But I KNOW she is thinking how much she loves you and daddy!!!