Right Now

(I started writing this today while Lucy was waiting on RT to begin.  And well, since my mood has not really changed, I figured I would finish it)

At the moment...I feel crappy.  Having a pity party.  I hate being at St. Jude.  I hate having a child with cancer.  I hate that her hair fell out last night.  I hate that I am having to shuffle kids around tonight so that I don't disappoint my oldest daughter by not showing up to her first softball game.

I want to be at home holding Jack, getting ready to pick up Lucy from the best preschool in the world where she should have been playing all day with her friends.  We should be deciding where we want to talk Daddy into taking us for lunch.  Not sitting with a hollow gut because my baby can't eat and I refuse to eat in front of her.  At the moment I could punch a hole in the wall I am so angry.  Lucy nor I signed up for this.  We don't want it, so if someone would please come take this burden away from us it would be greatly appreciated. 

I convinced Erik that I could come here alone today.  And honestly, I should be able to.  But I guess I was wrong again.  Dang!  Will it ever get easier?  I guess in a way I don't want it to.  I want to suffer through the next 5 months and then get on with our lives.  I do not want this hospital to become a part of our lives like it has for so many. 

Yesterday my lifelong, dear friend Sara came with me with and Lucy.  She is such a rock and always has been.  Little did I know she would end up being the perfect one to be with me yesterday as I watched all of my baby girl's hair fall out.  She allowed me to cry and was a great comfort.  I knew it was coming out soon, as she was shedding really badly.  Jack had even managed to pull a huge amount out on Sunday when he got a little too close.  It happened rather horrifically for me and rather peaceful for Lulu. 

When I was called back into the recovery room after her RT, I sat down beside her bed and began stroking her head like I usually do comforting her as she lay still asleep.  In one fell swoop the whole top portion of her hair fell out.  It was like she had been scalped.  My tears began to flow and didn't stop for a while.  So as she slept I ran my fingers through her hair, taking huge amounts with each stroke of my hand.  I figured I was going to have to shave it when we got home anyway so I might as well feel it for as long as I could.  It was agonizing and peaceful all at the same time.  It was as if I was able to lay to rest that chapter in this horror story.

I hate to share this picture because it was taken with my phone and it does not do this beautiful girl justice.  I have misplaced my camera uploading cord and am in a near panic state.  I have to finish this and get to bed, but I will be replacing it ASAP tomorrow.  So for now these grainy pictures will have to do. 

What you are not seeing in this picture is the sparkle of her crystal blue eyes.  She might not have hair, but she could outshine the sun with those eyes.  Oh, those eyes. 

And even since this picture was taken this morning, most of the remaining spots of hair have fallen out.  One more day and there will be nothing left at all.  It's just as well, really.  Having the hair fall out was inevitable.  I know that.  But I think it is another one of those gut check moments when you realize just what your child is dealing with.  For a while there she didn't look sick.  There were no constant reminders, nothing staring you in the face.  Now we have this to remind us everyday. 

I'm constantly reminding myself, just as I did at lunch with Sara on Monday that it could be so much worse.  We sat together in the cafeteria and I literally almost threw up thinking about all the what-could-have-beens.  Even some of the kids we were on the 7th floor will be left to deal with greater problems in the future, some life long handicaps.  Lucy may have a horrible cancer, but she is in the minority of children who have it and don't have many other challenges to overcome.  I have to be reminded of just how fortunate we are sometimes, but being at St. Jude everyday is a pretty good refresher course.  It's hard to not count your blessing as you walk through that place. 

Tomorrow is a big day for Lucy.  She is supposed to get her leg/knee brace.  She is so excited and so are we.  I just know she is going to make huge strides with her walking once she gets it.  She needs the physical support it will provide and the psychological.  She can walk, she just has to be pushed a little harder than she has been so far.  Between getting her brace and only being on TPN for 14 hours a day now she is going to love her new-found freedom.  I think I'm going to like it, too!

I'm praying that with the brace, God will allow that leg to start working properly and Lucy will be able to walk across the stage at her preschool graduation unassisted.  That is the goal we have set.  Just another milestone to reach in her journey to beat this cancer.

God is good.


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