There are so many things I am learning through this experience.  Unfortunately, I am learning them all the hard way.  People can not be trusted to do the things they say they'll do.  No one is truly listening. Mistakes will be made.  It is my job to protect Meaghan from these things but she's too smart not to know.  If she isn't right there when it's happening she may overhear me talking about them (venting) later.  As if this terrible disease and it's enormous impact on our family wasn't enough, I have to triple check EVERYTHING.  The frustration I feel over our most recent stay in the hospital is piling up.

I don't really want to go into a lot of detail.  I didn't log on tonight to say any of that.  I want to catch you up on how MEAGHAN is doing.  She is an amazing little girl.  She has been strong and brave.  She has a lot of anxiety and fear too.  I hear her ask frequently, "Will it hurt?" and "That isn't going to hurt, right?"  Don't misunderstand, I am not asking why she does it, I get it.  I reassure her at every turn and explain everything.  When we get to something she really doesn't like she will flat out ignore me or change the subject.  It's like she had coaching on this strategy, she's a pro.  We had the talk already about what might happen in clinic tomorrow.  It's hard to say which would be better, remove the PICC line or change the dressing.  Either way, we'll get through it together.  Jason was already planning on going but when Meaghan asked him tonight he pretended it was her idea.  She is so happy that he'll be there, maybe it will go better.

No matter what happens there is one thing that we are spending a lot of time working on now.  Her 5th birthday!  She told me months ago that she wished to be 5 years old.  She didn't know why but she just wanted to plan ahead.  You may know by now that Meaghan loves the color pink and anything that sparkles.  She knows she isn't a real princess but wants to pretend for that day that she is.  Obviously, Jason and I are doing all we can to ensure she gets her wish.  We aren't going crazy, everything within reason, but I hope it's the party of her dreams and that she remembers it as her best birthday ever.  She has given a lot of thought to how the day should go for everyone.  She made a guest list and looked through books and websites for decorating, snacks and entertainment ideas.  She wants everyone to come play games and win prizes.  Jason made a great suggestion and I am working on making it happen.  It's a secret for now, but if I can make it happen, I'll spill early.

Thank you for continuing to check in on all things Meaghan.  Because of the many well wishes, prayers and support offered to our family we are staying strong, together.