Be Patient

For a very long time, I had an alarm set on my phone to go off every morning at 8am. You know what it said? It said "You Love Carter No Matter What." Every morning it went off, I read it fully, and I moved forward with my day. I did this, not because I did not love him. I did this because overcoming depression takes effort. You're not just going to "look at the bright side" or "think positive." That changes nothing. But what you can do, is take purposeful baby steps to train your brain to think differently. Days of getting this one alarm, turned into months and one day, I didn't even realize I had not seen it in a while. And I didn't need it anymore. 

In November 2016, seven months of no one taking me seriously, we had our Chromosome Microarray test results come back. They were negative. I felt like we were running out of options. We moved on to schedule visits with an ophthalmologist and a neurologist, hoping to find something. Anything. 

December 2016, Carter is eight months old. He is still only staring at lights, fans and tracking nothing. I knew he wasn't totally blind, but to an outsider, he was. I had googled and researched and kept digging deep into the internet underworld where I found this handy little chart called "The 10 Characteristics of CVI." Cortical Visual Impairment. He ticked off every single number. Preference for a specific color (Red), light gazing or nonpurposeful gazing, blink reflex is absent to name a few. I KNEW this is what the issue was. Getting a doctor to diagnose it was near impossible. Our first visit to the ophthalmologist was an adventure. She said he was blind, which he obviously was not. I brought up CVI, she said it was too rare and not studied enough. I rolled my eyes. She pulled out all of her tricks and Carter did not give a damn. I gave it a try and pulled out a tiny little red bumblebee, with black and white wings. It crinkled when you touched it. Guess what he looked at? My bumblebee. She said it was bizarre. If there was ever an end goal here, it was to get this diagnosis.

Her confusion led her to want us to have an MRI, which was agreed upon by our first visit to the neurologist. My beautiful eight month old child was going to be put under anesthesia and stuck with more needles. My heart hurt immensely. The day of the MRI, my mother, husband and a close cousin of mine, sat in the waiting room with me. I cried and they supported me. I was the last person Carter saw as he fell asleep and the first person he saw when he woke up. For the rest of the day, we laid together in bed. For hours, I brushed my fingers over his wispy hair. This was not how it was supposed to go. Motherhood, for me, was something no one in my life could relate to. It was lonely. 

It did not take long for the MRI results to come back. They were clear. I cried. You would think that it   would be awesome to have clear and negative results that showed nothing wrong. But it wasn't. There was obviously something wrong. 

Carter's first Christmas came and it was excruciating. It is burned into my brain. Family who hadn't seen him since he was born kept asking me why he wouldn't respond or look at them. His eyes, at this point, were also crossing and everyone was reassuring me that all babies do that. That would come to be a common statement most people would offer to me. Carter cried and screamed the entire time. Neuro-irritability, continuous vomiting and no sleep will do that to a kid. I wanted to crawl under a rock. I put off doctor visits for a few weeks to give myself a break. I had been holding up my full-time job in between all of these appointments and we needed rest. 

January 2017. A new year. We continued treating the symptoms since we couldn't treat an actual diagnosis. We enrolled in Early Steps, a state intervention program for children birth to three. We received in home physical therapy, speech therapy, occupational therapy, play therapy and vision therapy. I can remember a few key moments, we call them inch stones. Carter started holding his head up for longer periods of time. He also started looking at certain items for a few seconds. My nine month old operated more like a 6 week old. A forever newborn. Everyone tells you in the beginning of your child's life to be patient. They grow and learn so fast.

Well, what do you tell a mom whose child does not?