Twenty Seventeen

My resolution this year was to wake up, everyday, to a new day. My anxious personality was stuck in worrying about every little thing. The future, the what-ifs, the why's. Life had turned into an ongoing google search. I researched all of Carter's noises, his movements, his symptoms. I showed up to appointments with lists and our pediatrician walked with me through all of my questions and ideas.

I was unbelievably tired, but I had to make a deliberate choice, something I am still doing 2 years later, to take it all day by day. One day at a time.

Slowly, and methodically, we started to build Team Carter. We were blessed that he was not a sick child. While his issues were extraordinarily complex, he was as healthy as he could be. We added a fantastic gastroenterologist who, from day one, let me be me. She listened and we worked together to form a great plan for my guy. Because of the communication barriers that existed between our current neurologist and myself, we parted ways. Unfortunately, the only other pediatric neurologist near us is in the same practice. They don't like to switch patients in the same practice, but here is a hint I learned pretty early on in this journey. Honesty will get you very far.

As I am, what I can only describe as earning my honorary medical degree, Carter is making his own little strides. He has started to use his arms to hit things. Whether deliberately or unintended, we celebrated. We were seeing some smiles here and there, he was bearing weight on his feet for a few seconds and holding his torso up in the sitting position with assistance. We were still suffering with weight gain, as he was continuing to vomit throughout each day. He was diagnosed as failure to thrive and his medical chart indicated malnutrition. Every time I see that word, knowing how hard we tried to help him gain and stop vomiting, it takes my breath away. In spite of that, we pushed forward.

April 2017, Carter turns one. At one year old, he operates with the ability of a 3 month old. It has taken me this entire year to want to be close to him. I think deep down, I was so scared of losing him that I put a wall up between us. He never made any eye contact and still, it was like I didn't exist as "mom", and that did not help the situation. I felt more like his nurse or a caretaker. It is very hard to bond with him. The guilt I felt overwhelmed me. I should feel closer to him. I know I should. But I didn't.

This same month, we decided to take a trip to Houston to see Diane Sheline, an independent consultant for students with cortical visual impairment or CVI. Our ophthalmologist had previously sent us to a neuro-ophthalmologist who also labeled Carter's vision as bizarre, but wouldn't diagnose CVI. Since he was starting to experience extreme strabismus (crossed eyes) and Esotropia (when one eye looks straight and the other crosses), she tested his sight and we ended up with glasses. I have never seen anything as cute in my entire life. The glasses did help the crossing, but we desperately needed someone to take us seriously or at least help us find the right tools to pinpoint where he is on the CVI scale, as well as what activities we need to be doing at home to help him progress.

Diane was that person. We spent the better part of the day at her office in Houston. She gave us very important information to take with us, including the contact information for Dr. Christine Roman-Lantzy, a leader in the field of CVI. We purchased her book, Cortical Vision Impairment: An Approach to assessment and intervention, and it was like she was describing my kid. This appointment was one of the true life-changing moments of our journey. It was, by far, the most important. Think about it. How are you going to help a child progress in Physical Therapy, Occupational Therapy, Feeding Therapy, LIFE, if you don't know what or how the hell they see?

We walked out with a score on the CVI scale and multiple interventions we could start at our house. This was our very first diagnosis. Our very first "This Is It." And we were left with something that could actually help him.

2017 wasn't looking half bad.