Right before Christmas, Jackson was finally diagnosed. After waiting 2 years for answers, you would think that it would be monumental. It was...kind of. The neurologist told us with his quiet way, "Your son has cerebellar atrophy." And we all just kind of blinked at each other. "The cerebellum controls gross motor, which explains everything." Still blinking. So we went home and hugged our son and said 'cerebellum atrophy' over and over until it rolled off our tongues. I told myself that I would get through the next couple of busy months and we went about our lives.
3 months later... Maggie's birthday is over, Christmas is over. We got through Jackson's 2nd birthday and had a moment to breathe, and it all hit me. My son. My baby...
The journey that we've been on with him hasn't been easy. From the very beginning, I knew that something was wrong. Lots of specialists, lots of tests, and lots of unanswered questions. We pushed hard from the beginning that he be treated AS A PERSON, not as his symptoms, and we've been incredibly blessed to find people that do just that. Fast forward to December.
Jackson was in the middle of developmental therapy and had a cluster seizure. Thankfully, his therapist (love her) recognized what was happening. Previously, we had been getting ready to go the mito route (mitochondrial diseases impact energy storage in the cells, possibly explaining his low muscle tone) and do a muscle biopsy. Instead, we spent 2 days at Wake Med. He had a 30 minute EEG and an MRI. As soon as the neurologist walked into the room, I knew. It's never good when they bring a whole gang of people with them. After the on-call neurologist gave his speech about all of the things that were wrong with my son's brain, I remember turning to the nurse that had been with us for the past 2 days. "Tell me what to ask. Am I asking the right questions?" Cerebellum atrophy. Blah blah blah. Not sure if it's dying or just growing slowly. Blah blah. Seizure disorder, silent seizures, 2-3 a day. On and on he went. I remember sitting in the rocking chair with my baby on my lap and my tears falling in his hair. I remember looking at the spikes on the EEG that were my son's seizures and thinking that I just wanted to go home.
Home. Pediatrician. Neurologist. I held my breath and handed his neurologist the test results I'd been rolling and unrolling for days. "Tell me what this means. Is his brain dying?" So he started to look at his computer, at the test results. "No. NO! Look at my son. You know him. Tell me what this means for MY SON." And bless him, he closed his computer and looked at me. "Based on my knowledge of your son and my clinical observations of his progress over the last 2 years, no, it is not dying. Growing slowly, yes, but not dying." So now we know. We know what we know and God knows the rest. And that is good with me.
