Ok.  It's been a few days and here's what's going on.  Meaghan started preschool on Monday.  It was great!  I can't say enough good things about the school and the teachers.  Meaghan is in  a class with only 7 other kids.  This is very exciting for everyone.  So much can be done in a small class and I can hardly help thinking about how many germs we'll avoid by being in such a small group.  Last year I prepared a hand-out for the class so this year I did it again.  The parents were all very understanding and supportive.  I have every reason to believe we are about to have a fantastic year.  After her first day she ran to meet me in the hall and shouted, "That was the best first day of preschool, EVER!"  

Jonathan's first day was Tuesday.  His first full day is Thursday, but so far he is having a great time too.  It's very strange for me to be dropping my baby off at school.  I'm all alone, even if it's only a few hours, a few days a week.

 Next, Meaghan started her tap and ballet class today (Wednesday).  She LOVED it too.  There was another loud outburst from Meaghan after class, all good.  She made fast friends with a few girls and I met a mom who shares our fight.  It isn't her fight, it's a friend and cousin, but she walks and raises funds and awareness for CF.  I am starting to feel like the world isn't such a big place after all.  Now that I am putting us back out there I am making connections and it is an amazing feeling.  There are still many emotional times for me.  My daughter is growing up, lots faster than I can believe.  She is having lots of fun, trying new things and planning for so much more.  I am trying to embrace these moments with her and encourage future planning.  BUT, I'm just not that able to live so free from all the anxiety, sadness and FEAR that comes with our diagnosis.  I find myself asking her to slow down for me, that I have to just get through right now.  What's going on?  I'm trying to perform this CF balancing act on my own again.  I just don't know what to ask for.

I went through some of this today while I talked with the doctors in clinic.  I know she meant to be helpful but she only steered me to the Family Day event being held by Hopkins CF Specialty Clinic.  I know the event well, I co-chair the Family Advisory Board that helps plan the day.  So, I am stuck here still, with nowhere else to turn.  I talk to Jason, but he is hurting too.  I talk to friends and other mothers raising CFers.  I pray.  I thank God for every day I have shared with my family and I ask for MANY more.  I recognize that we are very lucky, very lucky.  I still hate that it is my daughter, my family who has to fight this terrible disease.  I take what I can from Meaghan.  I use her strength, courage and spirit to pull me through.  Everyone has something, but look at my daughter and learn to let it go.  

There isn't a lot of news to share from our visit to clinic today.  Meaghan's height is up but her weight is not.  Her lungs sounded good.  They took a throat culture to check for the pseudomonas infection she just finished a months worth of treatment and therapy for.  Now we wait some more.  The culture results won't be back until next week.  Once Meaghan's doctors have a chance to review all the information they'll make a decision about what's next and how soon.  To top off the day, Meaghan had to get her flu shot.  That was an extreme challenge.  It's crazy, she tells me that throat cultures and bronchoscopies are "easy peasy" and how still she can sit through blood draws but the tiny needle for the flu drove her over the edge.  Once it was all done she got her prize and the best part, she got to tell her brothers now it's time for them to get their shots too.  I might have helped her with that and exaggerated it as an upside.

Thank you.  I hope that reading this is as helpful/useful to you as it has been for me.  I don't know where it will take me but it's just like being a kid, getting there is half the fun.