Susannah's Story

"There is no chance, no destiny, no fate
that can circumvent or hinder or control
the firm resolve of a determined soul ."

Journal

Wednesday, July 23, 2008 6:30 AM CDT

It has been a very worrisome week for Susannah. Our little lady continues to put all of her tremendous will and stubbornness into her daily fight, but things have been getting tougher. Still, even with significant sedation on board, her sparkling personality shines through. Susannah has occasionally managed to scrap her way into signing requests for Madeline, Mommy, Daddy, driving, Barney and even Big Bird (one has to love her priorities). Despite these efforts, Susannah continues a slow backslide, particularly with regard to her lungs; and her heart is doing everything it can to keep up. But as we continue to allow her every available medical opportunity, Susannah’s little body seems to be telling us she is very tired.

Madeline has been incredible, strong and wise beyond her years. She is an exemplary big sister. Susannah loves her so much, and Madeline returns that love equally and unequivocally. In the face of her fears and anxiety, Madeline decided that Susannah needed an ice cream cake party last night. Several of Susannah’s favorite nurses, now our friends, from downstairs, came in from home at 10 o’clock to join us; Grammy and even one of our favorite docs were with us as well. The nurses brought in ceramic supplies from Paint the Town and we all got creative. Madeline led a group effort in making a garden stepping stone with both sisters’ footsteps imprinted in concrete. We listened to the Beach Boys “Be True to Your School”, one of Susannah’s favorites from Full House, and watched Barney’s “Beach Party” (aka “the hula girls video”). Best of all, we all wore princess crowns to celebrate the occasion of just being together for another day.

While it is not entirely clear what the future holds for our sweet Susannah, in the end it will be perfect. Otherwise, we continue on day by day, hour by hour. While we do this, we go forward, knowing that we have nine precious years of memories to affectionately look back upon. This little girl has touched so many lives, and by extension our lives have been duly enriched. The love that flows effortlessly from others through our princess, to us, continues to do so. Even now, in these most precarious moments, Susannah’s circle of adoration continues to grow, and we are fortunate enough to be part of it. There is so much graciousness in this world, one merely needs to look in front of themselves to appreciate it.


With love,

Klane, Amy, Madeline and Susannah

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Hospital Information:

SETTLED IN SEATTLE!

3421 West Laurelhurst Drive, NE
Seattle, Washington 98105

Links:

E-mail Author: amy.white@alumni.usc.edu

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