We left so, so early in the morning.

But… at least Trevor was excited.

Two flights, a lot of Koen-squawks, and some lame Dunkin’ Donuts later, we arrived at DCA and headed to our hotel in Bethesda to be greeted by a storm that knocked out the TV, a closed pool at the hotel, $20/day parking, and an impossible mission to find some decent dinner.

We were so ready for some sleep.

The next day, we slept in, then headed to Baltimore to see the National Aquarium.   Trevor was so excited for this day, which is why this day was so hard.

Now, let me just tell you — parking in big cities like Baltimore?  Pain. In. The. … yeah.  So, we parked a block or two away from the Aquarium, and headed on foot toward the entrance of the Aquarium, excited to meet up with my dear friend Noelle and her little cutie, Charlie.

Hey girls!
Trevor was practically racing ahead of us, he was so excited to find some sharks!   I was glad he could have a day of fun before the boring day at the NIH, but the feeling didn’t last long.   After only a few exhibits, Trevor’s walk slowed.  
Soon, the falls started.  “Hey Mom!! Come see– oof!” — he was down on the ground with the crowd stepping around him.  He stood up with a weak grin, shook it off, and just pretended it didn’t happen.  “Oh wow!! Look over he– oof!”  — he was down again, on the ground, with the crowd stepping around him.  This time, he picked himself up, but there was a self-conscious look of anxiety on his face, not a grin.   With Jason’s arm for support, Trevor pulled himself up (with more difficulty than with the first fall), and continued on his way.  Soon, despite his initial excitement, he grew weary.  He kept sitting down, right in the middle of exhibits, whenever we’d pause to look at something.  His face was tired, his legs were clumsy.  He was ready to sit down.
Ok, so the Aquarium was a bit shorter than I anticipated.  That’s ok.  We sat down, had some lunch, and played in the water at a fountain pool while Trevor rested. 
After lunch, we strolled along the pier, wanting to look at old ships, at a Ripley’s museum, all sorts of fun street shows… but as we moved, Trevor grew more and more miserable.  Every 5 steps was a stumble.  With each fall, he grew increasingly angry, with tears and biting words to either of us if we tried to help him up.  
He. Was. Furious with his body.
As I watched his legs morph more and more into lead weights, we accepted that this was no longer a fun day, but was only dragging out Trevor’s discomfort, so we decided to go ahead and call it a day, head back to the hotel, and maybe find something delicious for dinner.   
 Jason, as he always does, stooped down and tenderly carried our son back to the car, chatting and joking to make Trevor laugh. 
 ( I hope Trevor can look back at pictures like this and be reminded that he is, most certainly, loved.)
If this isn’t the ultimate picture of one bad-ass (and super hot) Dad, I don’t know what is. 

Driving home, Jason and I were quiet.  We both knew what the other was thinking.  What does the future hold for our little guy?

The next day was a day full of driving, doctors, drills, and tests.  Trevor cheerfully did the standard neurological exam, while Dr. Blackstone chatted with us about notable observations, what they might mean, and what tests he’d like to run.  Although they would be running a (very long) full genetic panel on Trevor, Dr. Blackstone also wanted to run an HSP panel to check for all 50 types of HSP in Trevor, and two different types of Dystonia that Trevor had not yet been tested for.

“I have to warn you, “ he cautioned, “this is not a quick process.”













–No problem, doc.  We’ve gotten very good at waiting.

Written by jackie