January 4, 2011: What now?

This milk jug has been "Ali-fied!"

Heaveno!

Now what do I share about?  Last Wednesday's shift at the hospital gave me practically a week worth of posts!

First off, I have to congratulate one of the members from Team Bella, Laurie Le Moine.  Laurie pledged to raise $1,000 by Bella's birthday, and wrote me to say she's already raised the total amount!  She had a raffle, and raised $895.  The prize was a $100 gift certificate, and the winner donated it back to Bella!  Laurie threw in the extra $5 spot and BOOM!  The best part?  She did it over the holidays!  I would have totally understood the thinking that went something like, "I can't ask people for donations over the holidays..."  Not Laurie!  She went for it anyway!  Awesome job, Laurie!  We really appreciate you taking this on!  EB doesn't take a break for the holidays, and neither did you.  Thank you.

Who's next?  :)

Also, if you live in southern California, our dear friend Kelli Kelly is hosting a Zumba-thon in Huntington Beach on Saturday, February 26 from 4 to 5:30 at the Rodgers Senior Center.  Please click here for more information.  IF we hit 100 participants in advance, I will be there sporting some sort of embarrassing outfit for fun (should I do Napoleon Dynamite?) while getting my groove on!





New topic.

Currently, Ang reads to Ali at night and does prayers before bedtime.  Well, I have taken over a couple nights recently, and something really struck me, as it did tonight when I went to say prayers with Ali.  Ali and I used to say, "Dear God, thank you for making Ali bigger and Bella better.  Amen."  I caught myself beginning this prayer, and then stopped.  I was really sad.  When Bella was born, I was so reluctant to pray for my will (my will being that her EB would go away or at least be simplex-dowling meara or another subtype that kids often grow out of).  People encouraged me to pray for it anyway, so I did.  I frankly feel unworthy to pray for my will or my desires, regardless of how righteous or noble they may be.  This may sound like a shock, but it's true.  I feel like the only thing I can really ask God for is his comfort and to continually show me signals of his will, so that I can best serve it.  Not understand it, mind you, but serve it.  After all, how did I know that in losing Bella, I could be with E and relate to the fact that neither of us were going to get to dance with our girls at their wedding?  How???

I have found myself a little quiet with God recently.  I feel a little stung, because I did reach with everything I had for that miracle.  Now, I'm afraid to reach for anything.  Now, I feel like there is an understanding, and that almost no words need to be said other than "THANK YOU."  Watch this: Thank you for what is, not for what I hope will be.  That feels like manipulation. "Let me thank you in advance so you feel obligated to oblige." HA!  That is TOTALLY what I was up to when I used to say Ali and Bella's prayer, and when I used to say thank you for the healthy baby inside momma's tummy.  What was really behind that was, "See God?  I heard that this was the right way to pray.  Are you paying attention?  I'm doing it right, so you'll answer it, right?  Good.  Make sure you do, because I don't want to look bad or lose faith, either."

I have to laugh at myself... how do you manipulate God???  Doesn't seem like that would work out too well... and it didn't.

I know that it is natural and normal for me to go through different phases and periods of faith, belief, strength, etc. in my relationship with God.  I'm human, and I am the way I am.  The best part?

God is okay with all of it.  However I am works for God!  I have to say this out loud, because God's unconditional love for me is not something I can glimpse or truly grasp.  It's hard to believe offhand that God really is okay with me even when I'm not okay with God.  God is everything, everywhere; God has no need for my servitude, gratitude, adoration, or even 'right' behavior.  God needs nothing from me to love me.  THAT is unconditional love.  Obligation?  Human.  I believe that God takes great joy when I reach out and connect, and takes great sorrow when I pull back.  I try to imagine God as a parent, and as a parent, when my child reaches out in love, my body, mind, and spirit collectively warm in the moment.  Conversely, there are times when my child pulls back from me, and I feel sadness.  Having said that, there are also times when my daughter's 'negative' behavior simply does not thwart or dampen my love or warmth for her in the moment one bit.  I try to imagine that feeling times - I don't know - infinity?  That might glimpse God's love for me, despite me!

Ah, God stuff is Good stuff.

I love you, God.

God night.