June 14, 2012- Start Writing Again

Many of times I have sat at my computer in the last few months staring at the screen waiting for words to come. I would type a bit, delete it, and then try again. Every time I would hit this wall where the words just wouldn’t come. As time went on I felt more and guiltier that I hadn’t been writing, which caused even more writer’s block. I had promised myself that I would continue to write throughout Jackson’s life not only as a reminder for us but as a book for him to have when he is ready to read it. I never thought it would be so hard to just write, but it turns out it is!

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.

I wish there was an easier way to do this. After so much thought and prayer we have realized that the only option for us is the option to do what we know to be right. As parents you have to feel like you are doing everything you can. So, here we are. Embarking on another journey, this time somewhat separated from each other, but committed to coming out of this stronger, more in love, and with a deeper compassion for those around us also struggling.

There it is…. the fear of blogging about our reality has come to an end. God has incredible plans for our family and through the ups and downs we will be faithful to tell of his goodness!