Oh, what a day

So many things went on today.  I should be careful what I say, the day isn't really over.  Meaghan is sitting with her daddy doing the evening part of her treatments and therapies.

We had a lot of heavy rain today so I decided to drive the kids to the bus stop to keep everyone dry.  Backing up for a second, I started having trouble with the van over the weekend, completely out of the blue.  It's only 3 1/2 years old so I was really upset about it.  So, in an effort to make it easier IF I had real trouble I backed the van into the garage once Jimmy was off to school.  What a good idea.  When Meaghan, Jonathan and I were all loaded up and ready to leave for preschool I put the key in and turned to hear just a clicking noise.  Backing up again.  Jason bought me a new battery and tools to change it to keep with me in the van for such an emergency.  Unfortunately, I was all alone at home and there was no time.  Thank goodness for GREAT neighbors.  I moved one kid seat to her van and made it to preschool by 1pm.

Honestly, I came home, declined an invitation to "hang out" and had myself a good hard cry.  I'm glad I did it but don't feel better for it either.  I was under the impression that something like that would help me feel better.  I wanted to be more productive today.  I wanted to do more than wash last nights dishes.  I have laundry and cleaning and cooking and "chores" I want to start working on with a few hours all to myself now.  I need more than the worry in my head to keep me busy.  I miss people in my life who I can cry with while they push me along through the day to get my house in order.  I'm in a better place than I was 6 months ago or even 4 1/2 years ago but my sadness, frustration, anger, confusion and self pity are really getting in the way.  I know we are blessed and I thank God every day for those blessings.  There are others with and without CF whose lives are more stressful, more challenging than ours.  BUT, big but, I haven't found a place that makes sense to me.  A place that I can feel sad etc... and still appear to the outside world to have it all together and get "stuff" done.

Meaghan, on the other hand, has it all together.  She asked me today about the newest medicine, if it would hurt.  Then she told me that she would really breathe the Tobi so it would work this time.  I assured her that while it is important for her to breathe the Tobi, she was doing an absolutely fabulous job at trying to get better.  That I am so proud of her for being such a big, responsible girl.  She names her medicines, knows when and how they need to be taken, and why she needs them at all.  I told her she didn't have to change a thing, just be happy, let mommy do the rest.  It was a really hard thing for me to say (not to Meaghan) that I would rather Meaghan have a shorter life, filled with happy memories and friendships than a long lonely boring life.  I want it all and it just SUCKS that I feel like we have to choose.

The silver lining, we are truly living our lives now that we are facing our disease head on.  We are focused on spending all the time we can together doing fun things making special memories.  I asked Jason yesterday if we could just stay at the caverns forever.  While Meaghan lived one of her dreams there was never a thought of CF, infections, hospital stays or suffering.  We smiled, laughed and shared worry free.  It was amazing.