Smiling on the outside.

Corrigan enjoys watching those odd videos where grown-ups open and review new toys on YouTube. It’s strange to us, as adults, but these videos have millions and millions of views so clearly lots of others are watching too.

Last evening, he was perseverating on a small snippet of a toy review video, which is something he often does. To someone viewing from afar, there appears to be no rhyme or reason as to what leads him to rewind and rewind tiny segments of videos.

I sat down beside him and reminded him “no repeating.” His brain will often snag him up on phrases or sayings and it can be hard to stop the cycle unless you catch it early, so with that in mind I sat down to try and help him break free of whatever held his attention.

“No repeating,” I said, and instead of getting angry at the interruption of his good time, as per usual, he looked me in the eyes and smiled while deftly moving the slider back to the spot he wanted, without even glancing at his iPad.

I looked closer to the few seconds he wanted me to see, and it was simply a man who was moving a large box around quickly to show the viewer the packaging. The person in the video simply spins the box around the way you would and then it kind of slips down the length of his fingers and thuds on the table.

It’s absolutely unremarkable.

“Why is this the part you like?” I ask…not really expecting a clear answer, though verbally he’s improved a lot, finding his words takes time and he often just gives up, or doesn’t try. Especially on a question as vague as “why something?”

He looked at me in the eyes again and slid the slider back again.

“Let’s turn this around and read the description on the back” whoosh, spin, thunk.

I wait patiently, he rewinds once more, looks at me and smiles.

“Corrigan, your brain is so interesting, I’d love to understand better, why do you like this?

To which he simply and happily answered, “Sounds like ambulance doors. Hear it?”

My head swung around to meet Mark’s eyes, what?!?!

I listened again. It did. It does. It’s quiet, it’s not obvious, but within a 7 minute video, his brain identified and latched onto a sound he recognized. The sound of ambulance doors slamming shut.

No child should know that sound, let alone hear it in their every day world on a random Friday evening.

People assume that because Corrigan is so developmentally delayed, and because his behaviors and mannerisms often lead to others dismissing his mutterings, that “at least he doesn’t really understand what’s going on. That’s a blessing right?”

But he does understand. He understands through sounds. And sights. And smells. How dare we assume anything with this child?He processes his world and experiences so differently. Some of you remember a few years back, when he saw a helicopter in a book and started crying. Prior to that moment, he was still showing joy at every copter he saw, despite his many rides to the hospital, and even after that cry and the book, he went back to seeming to be happy about them.

But this last time, moments before we boarded the Medivac to Baltimore, the flight nurse stopped on the landing pad and waited. They’d moved me ahead to get in the front of the chopper, but I raced back to him to see what was wrong and the man said “I think he’s having a little panic about this. I don’t want to put him in the air like this…let’s see if we can settle him down”. His little heart was racing up nearing 180bpm yet he was smiling. His teeth were chattering and his body shaking uncontrollably, despite being wrapped like a burrito in blankets and some thermal thing to keep him warm. So there we stood, in the freezing wind, trying to help a special child deep-breathe himself back to a normal heart rate.

Oblivious? I think not.

And then once he boarded, he smiled and sang songs to himself until he fell asleep.

He knows things. He likely knows all of the things, really. He’s processing it all. He’s amazing in spite of all of his limitations, he’s figuring it all out at a pace that’s all his own but as his Mommy, I want to help. He’s going to be going through something major when the perfect liver comes for him, and I need to know how to help this boy through what’s about to occur. But until then, he’s clearly still working through this stuff on the UCD side of things. The ambulance rides. The Medevac trips. The terrible hallucinations and full-body pain he’s now experiencing with his ammonia elevations.

I think the answer is to keep listening. Keep watching. Keep asking questions until he finds the answers. And show him daily that he’s safe, as best we can.

But it doesn’t feel like enough. He’s smiling and singing but is he really okay? How can we help our brave and uniquely-wired little boy? And how can we possibly prepare him for what’s to come?

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