November 3, 2002

• I'm so thankful for everybody's comments yesterday.  The blog I did was very healing.  I'm dealing with ACCEPTING Rainee's "new" future. 

  
  

  You know what is coool though?  It is ONLY new to me.  It is not new to God.  He knew from the beginning what her life held.  He is IN charge.  He is the King and Lord of all.  And that will never change.

  
  

  I especially want to thank craktpot for her verses.  They were so good~~and the 3rd time I'd heard them in less then 24 hours.  God was trying to tell me something   I think I'm slowly getting it!

  
  

  For you created my inmost being;
  you knit me together in my mother's womb. 
  I praise you because I am fearfully and wonderfully made; your works are wonderful,
  I know that full well.

  
  

  My frame was not hidden from you
  when I was made in the secret place.
  When I was woven together in the depths of the earth, your eyes saw my unformed body.

  
  

  All the days ordained for me
  were written in your book
  before one of them came to be.
  
  How precious to me are your thoughts, O God!
  How vast is the sum of them!
  Were I to count them,
  they would outnumber the grains of sand.
  When I awake,
  I am still with you.

  
  

  Psalm 139:13-17

  
  

  I'm learning to tell Rainee's story.  This is the first step.  And a step I will have to deal with for the rest of my life.

  
  

  I read the book Chronic Kids Constant Hope.  It is a MUST read for anybody with a child with a chronic condition.  I should say I devoured it.  I read it in less then 24 hours.  It was powerful.

  
  

  It deals with things like...When friends say stupid things, and they will.   Its for moms with kids with asthma, or moms with kids who have much bigger problems.  It was SO good.  If you have a friend with a child who has something "big" wrong with him/her I can't promote this book enough!!!

  
  

  They talk a lot about your childs story, and how you will tell it, and who will WANT to listen, and who will walk off with glazed eyes.  Its the reality, and it is a hard part of my "new" reality.

  
  

  Yesterday I walked into a mom & pop store.  I "know" the man.  I've talked to him periodically over the last few years.  He said so how's your day.  "I said its been a day" (giving him the option to ignore)  He said,  "OH whats wrong" (Does he really want to know????)  I said I have a chronically sick kid who I've learned is always gonna be sick, and we almost had to admit her today."    He said, Oh I'm sorry.   And then he said in a very quiet and kind voice.  At least you learned she's gonna live to be sick."  That brought me up short.  And made me take a moment to be thankful. 

  
  

  And now you know what~~I want to know HIS story!!  I want to know why he knew those words of wisdom, and was able to encourage me so greatly!   Someday I will get the courage to ask him.

  
  

  So today is my first day of having to tell my story to my church family.  My church family is extremely important to me.  The ladies in my SS class are my life-line.  And I'm scared to tell the story.  And I will probably cry.  But it will be healing.  And it will be a "first" that I don't have to do again. 

  
  

  Hug your family!  They are so awesome.

  
  

  Oh and you know what.  I love my big kids.  They may keep walking off with "my" stuff.  And relocating it to some hidey-hole that only they know about.  But they are soooooooo gentle and caring with their baby sister.  And so good about participating in her care.  Shaking toys while she does albuterol, singing to her, holding her, and pushing her around the room in the walker to give their mommy and daddy a few minutes of non-Rainee time.  It is precious

  • 10:41 am
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