Day 25

     Have you ever been so sick that you didn't want anyone to even touch you?  Feel so miserable that you didn't feel like doing anything...no TV, no games, nothing.  That is how Katie is.  She is hurting, frustrated and miserable.  Today was a day of highs and lows.  We started the day with little sleep (again).  I don't mean to go on about the lack of sleep...but we are tired! =)  It isn't like she wakes once or twice a night, rather it is that she only cat naps off and on, and cries most of the night.  The trend has been she will finally go to sleep for a few hours beginning at 4 or 5 a.m.  Anyway, that is how each day begins...but this morning's low was that we had to say goodbye to my sister.  She has been here for the past 10 days and in her words, "it was a crazy week!"  It was crazy and we wouldn't have made it through without her.  Words can not express our gratitude and appreciation for her and all she has done.  Scott's mom and dad and my family have been amazingly supportive! 
     On the high side of things, there were some magical moments today.  Katie was having a fit mid morning, so we took her to feed the horses.  She laughed when the horse ate her carrot.  It has been awhile since she has laughed.  It was so great to hear!  When we got home, I put her in the bathtub and she seemed almost like herself.  Scott came in and told her he was leaving for church and asked if he could have a kiss and Katie shook her head affirmatively.  She leaned over and kissed her dad.  I was so surprised and I asked if I could have a kiss too.  I was also gifted with a sweet kiss.  This brought me to tears, because it has been so long since Katie kissed me (at times she will tolerate my kisses, but never "give" one) (she used to give me kisses freely and often).  It is amazing how those small things, that used to happen daily, are now such sought after and rare treasures.  I truly believed in the beginning of this journey, that I had not taken my family for granted, but I can now say that even though I did appreciate my family, I did not (could not) appreciate them at the depth and level I now appreciate them.
     That reminds me of a scripture passage my dad once "gave" to me.  He read them to me and told me they were for me.  I marked these verses and always remembered they were "mine".  Apparently my dad also marked them in his scriptures and next to the verses he wrote my name.  (I did not know he had marked them in that way in his until after his death and I was looking through his scriptures).  These verses have always had special meaning to me.  Doctrine and Covenants 98:1-3 "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks;
"Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament - the Lord hath sworn and decreed that they shall be granted.
"Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord."  Just like this experience we are going through with our Katie, ALL things can work together for our good.  I know have even a greater appreciation for my family...all of them...and for the simple things in life, like sweet little kisses.
     Now...back to the low side of the day.  Katie's hair was coming out in handfuls today.  So, that "bob" Katie was sporting...well, she no longer is sporting.  Katie now has a buzz cut.  This brought her father to tears (now doubt it reminded him of his sister who went through cancer treatments and passed away in December a few years ago).  My tears came when I heard Katie screaming, I asked Scott what happened, he said he had walked past a mirror and Katie saw herself.  She screamed inconsolably for at least 15 minutes.  Then I began crying.  I asked Katie if it would make her feel better if mommy cut her hair off too.  She shook her head no.  I told her I was sorry...that her hair would grow back...that she was still beautiful...that it made me sad to see her so sad.  I don't think she wanted me to cry anymore, so she stopped crying.  Then she said she was hungry.  (She is craving burritos this week).  Conner said he didn't want Katie's hair to be gone.  I told him none of us wanted her hair to be gone, but that it would grow back someday.  So...a day of highs and lows.
     Today we are glad for the Mormon Tabernacle choir.  Katie enjoyed listening to the spoken word and Christmas devotional tonight.  Soft reverent music has a way of soothing her, that nothing else can.  Thank you for your prayers...please keep praying for our Katie girl!