July 2, 2025 – The Day He Got in the Car by Himself

July 2, 2025 – The Day He Got in the Car by Himself

The morning of the 2nd, I woke up at about 6:20am to get ready to go. He was awake on the other couch and asked me what I was doing. I told him I was getting ready to go since we had to leave soon for his treatment. I said it quickly and nonchalantly, trying to sound casual, almost breezy. I didn’t want to trigger anything.

Is it wrong that I sometimes feel like I have to walk on eggshells around my own son?  Some may think so or might even say yes. But for me, it’s less about fear and more about avoiding unnecessary waves, as this journey has plenty of waves to it—some small, some tidal. I try not to stir up more than we already have to ride through. The last thing I wanted (but then again, when do I ever want this?) was one of his absolute refusal moments to happen—the kind where he starts jumping up and down, shouting that he wants to stay home, calling me rude, and flat-out refusing to get dressed. Moments that end with one of his brothers having to carry him to the backseat of the car and buckle him in and make sure the back door child safety locks are on. But today?

To my utter shock and amazement, this morning he got up, dressed himself in the shirt, shorts & socks that I had set out and even put his shoes on!! A far cry from how he acted just a week ago, when his sister and I had to take him to the doctor. That day, he had to be carried out to the car with just his shorts on—that’s another story for later.  We drove off with his shirt, socks, and shoes on the backseat next to him, and he slowly got dressed along the way. He never did put on his shoes. But you know what? I’m sure he’s not the first person to walk into a doctor’s office in just socks.

I tried to stay calm—just quietly going about the routine. I loaded my backpack that was full of things to busy myself with at the 5 hour infusion treatment – my laptop, a book to read through and a couple of protein bars to name a few.  I filled our water bottles and made my protein coffee. As I was doing these things, I noticed him standing in the kitchen nearby. He spotted his half eaten breaded chicken patty from the night before and picked it up to eat it. I asked if he’d like some more and he nodded “YES”. 

I try not to act shocked when good moments happen. To most, a simple head nod of yes might seem so insignificant and silly to make a note of. But when someone has an inflammed brain and has retreated from 98% of any social interaction with those they once interacted with, that head nod is everything. Still, I have learned not to hang my hat on these moments, as they seem to pass quickly. Instead, I tuck them away- into my notes and into the recesses of my brain, the quiet corners of my mind, where I keep the signs of hope.

He then willingly got in the front seat of the car, buckled up and sat ready to go. My husband looked at me, wondering—just as I was—if it was safe to have him in the front seat since the front doors don’t have child lockson them. I felt we were okay this trip. I hooked my phone up to the Bluetooth, queued up the playlist that he and I share, and we pulled out the driveway—slightly rocking out to music we enjoy.

Another thing we haven’t done in ages.