Beyond the Diagnosis

Our story essentially ended and began back in October 2017. And though we now had a name to assign these issues, a name that helped to extinguish the guilt that I carried wondering what I did to cause this, it did nothing more. We would come to learn that rare is an understatement. Carter, at that time, was one of around 30 children diagnosed in the world. He was also the only person with his specific mutation of GRIN1. One in over 7 billion people. There were no handbooks, no research, nothing to help guide us down this road. It was merely a nametag.

After Carter's nissen surgery, the vomiting ceased and his progress soared. I threw myself into research. I was already a Carter expert, but I was determined to be everything he needed to continue to move forward. Around the same time as the diagnosis, I landed a one in a million job. I am still not sure how I was steered to this job, but I know now that it was not some random act in the universe. A higher power knew that I needed to be there.

Feb 2018 - a moment I thought I would never see. At almost 2 years old, Carter not only got himself into a sitting position, he sat unassisted. The work that this child puts into doing something that comes so easily to others is astounding.

In the midst of these inchstones, I found a Facebook GRIN 1 group and started getting to know some of the many people I now call family. I unloaded my questions on those with older children and as time progressed, I was able to give my answers and experience to those newly diagnosed. Carter's health was stable, doctor appointments lessened and our little family fell into a groove. Some parts became habitual and mundane, something I cherished. Of course we had our crisis moments, but we would come to understand that crisis was something we would never escape.

One crisis that is a continuing barrier in our life is my severe CTSD, continual traumatic stress disorder. I was scarred, heavily, after Carter's birth and through this journey so far. The thought of going back to his first year, any type of regression, vomiting again, sent me into a tailspin. As holistic and natural as I am, I am also a believer in western medicine. To save myself, I started Zoloft. It has not stopped my panic attacks, it has not stopped my worrying or the daily knot in my stomach, BUT it has stopped my thoughts of suicide. I am fully aware that trauma never goes away. I am also aware that people who are not in my shoes will never understand this trauma. My personal trauma is a daily struggle where I have to be purposeful in thinking positively.

It is hard to heal trauma when you are in an environment that feeds your trauma. Being purposeful in choosing to think positively is necessary. I can't pour from an empty cup, right?