We had a follow up appointment with our son's neurologist recently.
I asked to take a look at his repeat MRI so I could see the cerebellar atrophy myself.
The atrophy is quite rapid and there is about 1/4 of his cerebellum left. He also has some cerebrum atrophy; there’s a black halo near the top of his skull where there should be gray matter but there isn't.
I surprised myself on the drive home. I didn't cry. Those scans change nothing. They don't change the course of action. They don't change who he is.
We walked into that appointment the same way we walked out. I spent the ride home thinking about what he DID do at his appointments.
He screamed throughout the entire check-in while everyone stared at us, but immediately stopped when I started Bubble Guppies on the iPad.
He gave his neurologist one of his most charming smiles...after he wailed throughout her entire examination; he was definitely communicating his dislike to her touch.
He gave the fellow a high five. Twice.
He pushed her hand away when she tried to get his reflexes, showing her just how smart he is.
He tried to roll off the table when she was examining his range of motion, he was showing her how he could move.
To say she was proud of his progress is an understatement. She then said something that I thought of the entire ride home:
He's doing it. He's slowly climbing.
Progress is gradual. His progress isn't always easy to see. He doesn't have one area to strengthen; he needs to strengthen everything.
His progress is measured by minute changes not enormous accomplishments.
He is climbing the tallest mountain on earth.
Every day he is trying to get to the peak. It's hard but it's not impossible. You don't sprint up Mount Everest. You don't climb it overnight. We are slowly climbing to the top.
The scans may show something completely devastating, but every day, every ounce of progress is that much closer to the summit.
I know there are days when it feels like the top is too far and too hard to reach. I know there are days where we stumble and take a few steps back.
There are days where we are simply at a standstill. But we’ll keep climbing because the view at the top is going to be extraordinary.
The mobility device changing people’s lives worldwideFind out more