Little Things

So...(insert deep breath here)...our NYC doctor finally returned from vacation and we met with him to discuss "the plan". Apparently, our expectations were too low. We were simply hoping for his willingness to work with the Chicago Dr and "get aggressive" if need be, but we did even better than that! He said, "Sophie's blood work looks great and her numbers are improving across the board. 'Chicago' AND I are BOTH comfortable continuing with the current treatment (with a couple minor tweaks)." Phew! Now that IS good news! We feel like we dodged a bullet there. Hopefully, her numbers will continue to improve and the Drs' treatment  differences will continue to be a moot point.  

As for Sophie, she is starting to ask a lot more questions about why she has to give blood, get shots and take so much medicine. I know a frank conversation with her about her disease is imminent. I just feel I have to be ready to put on a brave, can-do face before we have that talk. After all, what help can I be to her if I, her "fearless leader", am gasping for breath from a paper bag?! So....(insert additional deep breath here)... this is my journey. I am working on coming to peace with our "new reality" so that, in turn, she can.  I have to say, today it's looking pretty good.  Sophie is happy at school doing everything a four-year-old should be doing--painting, block-building and snacking on a steady diet of goldfish and graham crackers. She is happy at home with her family playing Candy Land marathons and singing aloud to her favorite songs.  And, she is particularly happy with her new shiny patent leather shoes. Sophie is doing fine.  In fact, it is becoming quite clear that we would all be better off around here if we followed HER lead. Like all children, she knows something that we adults all-too-often forget. It is the little things.