Healing Happens by Feeling

Two weeks hospitalized, regression of all skills and one surgery later, we took my man home. Carter's birth should have symbolized the start of a new life, a new beginning. While it was in the literal sense, it was THIS moment that changed our entire trajectory. There will always be moments in your life where you can only define life before and life after. This was ours. It was like taking a new baby home and starting over from scratch. Whatever skills Carter had learned before we entered had disappeared. I was lucky enough to be without a job that I could stay home with him and help him progress.

The bond that I was lacking with Carter, the bond that I craved, was starting to build itself.

In my previous life, I worked as a fundraiser. As I started to think about applying to jobs, I thought I wanted to continue down that path. I have always set high standards and lofty goals for myself, so when it came down to applying for jobs and I was willing to take pay cuts to work my schedule around Carter, it surprised me. I went on a few interviews and got offers from jobs I would have killed for before Carter. I ended up turning a few down because they just wanted more than I could provide at this time in my life. I was really starting to enjoy spending my days with him and it also provided me time with my mother. The few months I spent without a job turned into quite the blessing.

Fall 2017. Carter is bearing weight for a few seconds more, he has complete head control, he is rocking on his hands and knees and rolling, he is starting to notice people and toys, he is communicating with sounds, he knows me. He freaking knows me and even better, I KNOW he knows me. Watching him try so hard to do things that come natural to typical children make me so proud of him. Two months of absolutely no vomit. It was a new life, but a new life that carried the emotions of what life was like prior to the surgery. It created a new form of stress, CTSD. For a long time, I labeled this PTSD, but nothing about my medical child is "Post". It will always be "Continuous". I will always be on guard for any sickness, weird movements, possible seizures. One burp can send me over the edge into an extreme panic attack.

Oct 17, 2017. Carter's WES test is back and it has flagged what could be the cause of all of his issues. Our geneticist calls. His diagnosis is called GRIN1. And it was NOT inherited from either Casey or me. All that is known is that it is very rare and there are little to no studies online or about the disorder. We knew going into this, there was a very large chance that we would get no answer back. I think a lot of people thought it would be excruciating to hear an answer like this, but for me, it was exactly what we needed. All of the guilt that I had held onto for the last 1.5 years, washed away. I now knew for certain that there was nothing I did and nothing I could have done to prevent this. It just happened. I also now know that this could happen to anyone.

At our visit with the geneticist, we learn next to nothing. Yes, GRIN1 is the cause. No, there is no cure and we know nothing about the disorder other than there is nothing affecting his lifespan that they were aware of. We were still doing everything they suggested to help him progress. And we are sent on our way. I alerted all of our therapists and specialists of the diagnosis. No one had ever heard of it. This will come to be a common theme in our lives.

I have searched my whole life for something to be passionate about. I never had a lot of friends and hobbies. There was never anything I was interested in committing to, especially long term. This diagnosis gave me a jumping off point. A place to start. It incited a passion in me I had never felt. I vowed to learn everything I could about this disorder. I might not find a cure, but I might come close. I started with Facebook. I found a community. A community of kids with Carter's exact diagnosis. People who literally understood what our lives were like. I was ready. I made myself ready to put our lives out there and connect with other people.

It was time to start writing a new story.