It’s been a year (3 days short of it) since we had our first doctor’s appointment at Texas Childrens Hospital. It was the appointment that forever changed our view on Jackson’s survival and continued care. It was the first time that we found hope in him surviving. As I read back over the blog post from this very day last year I was so encouraged to see that it was titled, “God you are doing it”. I blogged about how God was carrying us through our difficult pregnancy in a way that I could have never imagined. It was no doubt what I needed to be reminded of tonight.
For here I sit on a couch in Houston thinking to myself, “What in the world is this all coming to?” We moved here this last weekend to continue Jackson’s care and we are giving it everything we have…. Literally! We sold our house and moved here with Chris’ job still in the Austin area. He will work there Monday- Friday and then spend the weekends with us. I know, it sounds crazy, but it’s the only thing we know to do right now. It would be nice if there was some sort of manual for this type of thing. Maybe something like, “If you son was born with a completely backwards heart then do this….”
Over the last few weeks I have questioned if we were making the right decision by separating our family for this time. Believe me, signing up to be a single parent for the week in a new city not knowing anyone is enough to keep me in Austin just fine. On the other hand, I am so afraid of losing my son, that I know I would move around the world at the drop of a hat. The conclusion we have came to is that we have to take things one step at a time. We need to do everything that we can to fight for his life. That means our lifestyle at times will be uncomfortable or crazy. We will take this step and then see what happens next. We continue to wait to see what care and surgeries he will need next.