A Very Special Case.

One of my favorite "Case songs" is  This Is The Stuff by,  Francesca Battistelli . The first time I heard it was at CHP during his 38 day NICU stay. My favorite line is: "In the middle of my little mess I forget how big I'm blessed" and "So break me of impatience Conquer my frustrations I've got a new appreciation It's not the end of the world". Granted, I have more "little messes" than parents of all "typical" children. And maybe some of my "messes" are a little bigger than little BUT they aren't burying my son (something I was told to prepare to do) and they aren't going to kill me (well, at least I hope not! Lol). Being a special mom is hard. It's exhausting. You feel constantly on guard for the next "mess". You're frequently fighting with insurance companies, pharmacies and billing offices. You clean up puke more times than you tie your shoe and JUST as you're about to walk

"I am trying to understand How to walk this weary land Make straight the paths that crookedly lie Oh Lord, before these feet of mine Oh Lord, before these feet of mine" I've been traveling a crooked path and all I see I one step ahead. This land can be weary but blessed. I am overwhelmed with the amount of blessings Case and his story bring, spiritually and monetarily. As I was speaking to his Genetic Councilor today (yeah, we chat on the phone, lol) I started thinking about what a special Case we really have. Noone, not one of his doctors, nurses or therapists have ever met a child just like Case. He's complicated and so far, un-figured out. It's been a long, exhausting journey and its only just beginning. But for every complication Case has received a hundred blessings. He was sent to us to show us how precious life is. He's opened my eyes to a huge, beautiful world of people who have hearts of gold and love that reaches far beyond their 4 walled home

As some of you know our life is about change. In 7 days we are picking our 4 children and life up and moving it an hour away. Dan got a job offer back in October and took it. It took 3 months to find a buyer for our house (we had to sell before we bought) but now we are only 7 days away from a whole lot of change. Good change, sad change and a little bit of scary change. We leave our dear, feels like a grandma nurse that has been with Case for a year. We lose the pediatrician that I've grown to love, trust and call all hours of the day. We leave all four of our sweet, dedicated, hard working therapists and well just a lot of special people. Thank God we don't lose our Children's hospital! As a child, I struggled with change. If I couldn't find my pillow or someone else was sitting at my seat at the table, my whole day/night was thrown out of whack. Well, these past 26 months have been nothing but change and I'm still not used to it!:) I know that change is good.