Wow!!

Sometimes it just sneaks up out of nowhere and is almost like a punch in the gut. Last night it happened while I was laying Reuben down for bed - late, because we had watched a movie as a family (as has become our Saturday night custom), and it was one that we thought he might enjoy, so he stayed up with us. He absolutely did like the movie, excitedly calling out the names of things he's interested in: water, fire, down, candle, sploosh. But his inability to really let us get into his head, to be able to ask questions about what's happening, or talk with us the next day about his favorite parts, or any of that, is just simply not there. As I tucked him into bed, I was overcome by sadness over how trapped my nine year old son is inside the body that he's been given. I will never know him and interact with him the way I can with Owen, or will be able to with Eben.

I shared my thoughts with Matt as we fell asleep a few hours later.

The next few hours were punctuated with a series of tonic/clonic seizures, ending in a dose of valium, leaving Reuben tired and with no appetite for breakfast this morning, but still eager to get ready to bring his Bible and go off to church.

One of Reuben's favorite parts of the main church service is the music. He loves to watch the drummer, and is particularly pleased when our pastor is one of the guitarists. Today, the final song at the beginning was this one, Behold Our God. As we finished the song the instrumentalists cut out and the sanctuary was filled with the rich sounds of our voices alone, in adoration of our King. As the final voices were dying out, Reuben belted out his signature, "Wow!!!!"

Matt's initial response was the same ours always is in situations like this: Hush, Reuben. Though he and I looked at each other right after, recognizing that it wasn't as inappropriate as many of the other times he's loud and screeching...

After the service was over, both Matt and I had a few people approach us, sharing how it had touched them to hear Reuben's exclamation (because, yes, it was loud enough for pretty much everyone in our 200+ congregation to hear!) One man said how it had brought tears to his eyes - that what Reuben had exclaimed had expressed exactly what he had been thinking.

What a juxtaposition: our dear boy is trapped inside the many limitations of his body, impacted in every cell by a rogue 20th chromosome, and yet here he was, the day after I'd been mourning his inability to communicate, able to express out loud what so many of us were thinking, but had too many inhibitions to express. Shame on us, and good for Reuben.

Once again, I'm reminded that oftentimes we are a little too proud for our own good, and that God looks at things through an entirely different lens than we do.  

But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God. ~ 1 Corinthians 1:27-29