This has to be one of my favorite things about Meaghan's Princess Party.  The kids all had a turn to "kiss" the frog prince.  It was Meaghan's idea to play the game and a very talented and helpful neighbor (love ya D!) volunteered to draw him.  I plan to have him framed to hang in Meaghan's room, as long as I can find space.

I am all over the board tonight, I have no idea where this will take me.  Meaghan still seems mostly like herself.  She is a little more tired and doesn't want to be bothered to do much unless she is the one who wants it.  It could just be her age but every time she's more tired or off a little bit I can't help going to those dark places.

Jason and I had a short but tearful talk about those places today.  We both deal with this terrible disease in our own way.  I talk all the time, haha.  He doesn't so much.  A lot of the things that cross our minds he chooses not to verbalize, I know he feels uncomfortable when I talk about them but today I was unable to keep them to myself.  What is God's plan for Meaghan?  He can't take away her CF, it is in her genes.  He can stop her suffering, but how?  Will He choose to speed up the search for a cure?  That was Jason's idea.  Will He make this year the year we remember as the really hard one and allow Meaghan to go on for many more healthier years?  Or, will He take her, my beautiful angel, to heaven where CF won't hurt her anymore?  That's where I am right now.  Meaghan looks so beautiful and perfect, she's a little bit of heaven here on earth and what if God wants her back before I can stand it?

I have also been carrying this one around for a while.  I was emailing a friend about holiday plans and admitted that planning with my family was a really difficult thing to do.  I said to her, "We're not the best kind of friends to have."  At the time I meant it, it's what I thought was true.  Through the weeks since then I have thought about taking it back.  We ARE the best kind of friends to have.  We keep it real.  Our life is pretty hard most of the time.  But we are trying in all the ways we know how to remember that each day our family spends together is another gift.  I bet knowing our family is hard.  We live a nightmare most parents cannot imagine.  It is easy to see how people would be shy or scared to get to know us.  I tend to keep people at a distance too.  I want to fill Meaghan's days with love and happiness but I am terrified that the cost to her health will be more than she has.  I want all her days to be with me, I ache when she is away at school.  God saw fit to put this beautiful girl into my life.  He trusts me to take the best care of her.  I pray every day that I am living up to His expectations.  The simple joy and peace I find in living these days is equal to the sadness and fear I feel.

I asked Jason while we were talking this afternoon, "Why doesn't it get easier?"  I've thought ever since that first night with Meaghan that, in time, living this life would get easier.  No one told me it would, but I assumed one day I would come to terms with CF and start living better or happier.  I have watched Meaghan grow up to be 5 years old now, and I don't feel better.  I have faith, I have happiness but I have a BIG lump in my throat still.  How weird is it that a disease that is all about breathing, took the breath right out of me and I will never get it back.

That is all for tonight.  Meaghan will be in clinic on Friday morning for a follow up to the IV therapy we just finished.  We scheduled it for now so that we would have the results before Christmas.  I don't know now if that's the kind of news I want to have for the holidays.  Pray with us that we squashed the pseudomonas and have passed the second MAI test.

God Bless!