Its interesting - the way people approach the topic of Finley.  When she was first born and we were really in the thick of finding out about everything - people just wanted to tell us they were sorry.  And to be honest, that is about the last thing you want to hear.  While we understand the sentiments are coming from a good place, you don't really want someone to feel sorry for you.  Nor do you want yo hear that people feel sorry for your child.  Admittedly, Mike and I DO feel sorry for Finley - because of what she's been through medically.  And its okay for you to feel sorry for her - but please don't tell us that.  It really is fine to say nothing at all.

I had an interesting conversation with the pharmacist at Walgreens yesterday and I think he could tell based on the instructions on the bottle of Bactrim that I was picking up that my child had some special needs (perhaps the words "administer through g-tube was the give away) but as he tried to give me some pointers about the medication (while he was looking at the bottle) I could tell he was struggling a bit.  He started to say, "She should drink, um, get extra fluids while getting this medicine"  to which I replied, "she takes everything via g-tube" and he started to try to say it a different way and I said, "well, she is on a continuous feed 24 hours a day so I think she will be okay" and he just laughed uncomfortably and said "oh that will be fine then".  But it was what he said next that touched me.  He just said, "Taking it one day at a time huh?" And I smiled and said yeah, but she's doing awesome...." And he continued to ask a few more questions, I could just tell he was trying not to pry too much but at the same time offer support and yet show genuine interest and I left Walgreens feeling happy to have had the opportunity to talk to that complete stranger about Finley and I felt so happy that he asked about her.  I had someone tell me recently that they hope I knew they think about our family and Finley all of the time but that she just wasn't sure if it was something I wanted to talk about.  My response - OF COURSE I want to talk about Finley!  My friends and family know this by now, our nurses at the hospital, etc.  Honestly though - I will talk about Finley to whomever will listen.  And to the above rambling, its NOT because I want anyone to feel sorry for us for her, etc. - its because I want people to know what an inspiration our little girl is. How strong and amazing she is and most of all that she is quite literally the happiest little baby in the world.  Our lives have undoubtedly changed over the last 10 months, but I do believe things happen for a reason and when we started on this journey with Finley, one thing I knew from the beginning was that she was going to make us better people and she was going to touch the lives of every person who knows her.  The magnitude to which she's done that already in these 10 short months is tremendous.  So what I am trying to say here is don't be afraid - don't be afraid to ask about Finley, about CHARGE Syndrome, etc. because we welcome the opportunity to talk about her and to help others who might not know what its like to have a special needs child, or know someone with CHARGE Syndrome, etc.  Our hope is that Finley will inspire others as she has done us.