As her kidneys were functioning at 50% and her spleen enlarged, Slim and Shuan made the very hard decision (the one they had rightly refused to make for the 3 years she was in and out of the hospital) to sign a Do Not Resuscitate order. Even that night, Slim still told me that he had not given up hope, that perhaps she would be a little better in the morning. He had seen his homeopathic remedies bring back the liver so damaged by hospital formula. . . but it was never this damaged.
When we got the call in the night, both Slim and Shuan's families hurried to the hospital. We all said our good-byes to her and cried and held each other until she passed at around 5AM.
We had time to watch her motionless, sweet face, remembering the days she was so alive:

    * the way her baby face would light up when her daddy entered her hospital room or when we played peek-a-boo between the crib bars.
    * the moment, when that baby, lying in her crib, hit the keyboard Daddy had placed at the end of her bed with her foot and made the connection that she had made that music. . .then, watching her kick out a song.
    * how she had so quickly, once she was permitted out of the restrains of that crib, learned to walk and then run and dance.
    * the night I nearly fell asleep watching her at the hospital, while she danced until midnight to the Temptations.
    * seeing her in that hula skirt the nurses put on her, wiggiing her hips.
    * watching those nurses run straight to her room, after their vacation, because they missed her so. . .or the surprise on a new one's face when she'd connect her own tubes and insert her own drugs, during their therapy.
    * the artwork that filled her walls in the hospital and at home, including the mosaic made with colors of Trix cereal crumbs that her mother so creatively encouraged.
    * the music of her daddy's flute or guitar or finger harp or recorded music and her mother's favorite Bach or sweetly sung chant, always surrounding her.
    * the words of her mother's language spoken in Chinese by that sweet, tiny voice.
    * the grin on her face, as she played her own set of drums or peeked out of her playhouse window to ask for water for her stand-up sink.
    * the sunshine warming her brown skin on her daily trips to the park or to Starbucks for morning coffee with Daddy or riding on the back of Daddy's bike.
    * her demand that everyone in her room, in her last days, draw her a picture, as she laid on her back wielding a paint brush on the paper mommy held up...She made a picture for each of us to keep.

These last few days with her were, as her uncle Jeff wrote:

      "a time to smile,
      a time to reflect,
      a time to be vulnerable,
      a time to accept."

I have been told that no child this ill (no one with tubes into her heart and lungs and belly) had ever been sent home from Phoenix Children's Hospital with parents - but then no one has had parents quite like hers. Their peaceful, compassionate, loving attitude in all they said and did for her never ceased to amaze me and obviously affected the sweet spirit that she was. No other parent could have been so attentive. They gave her a length and quality of life that surprised even her nurses and doctors. And she added so much to the lives of everyone who knew or met her.
As they laid with her, in her last hours, I could hear her answering "yes, yes, yes" to Mama's questions: "Do you know how very much your mommy loves you? Do you know that there is nothing that could ever happen to make me stop loving you? Do you know that I think of you every minute of every day?" Her daddy told me that he told her that he wanted her to be with him, but it was OK to let go if she had to now; it was OK to go toward the sun and the stars and the Big Love.
It was their last, selfless and loving act to let her go.
When the staff came around 7 to take her to the mortuary, mama gently washed her skin and dressed her in the bright and beautiful rainbow tie-dye a friend had made for her. Then they let us touch and kiss on her sweet face and fingers one more time, before lovingly wrapping her in a blanket and carrying her away in their arms.
We all read and re-read the words of a poem Slim's friend, John, brought by, entitled God's Loan, that read in part:

      "I cannot promise she will stay
      Since all from earth return;
      But there are lessons taught down there
      I want this child to learn.
      I've looked the wide world over
      In search of teachers true;
      And from the throngs that crowd life's lanes
      I've selected you.
      Now will you give her all your love
      And not think the labor vain;
      Nor hate me when I come to call
      To take her back again."

We ache so today. But we have been so blessed with her sweet presence.
~ Sherry Golba