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Sunday isn't a day of rest for C: he had four hours of ABA therapy, including a two-hour session with a brand new therapist; later, we went to the park and the big playground, where he ran around disconnected from his oxygen for over an hour. Later, we watched ducks and geese in the big pond, before coming home for dinner, baths, and bed.
He's working so much, trying so hard, but it's paying off. Every day I see a little more of C emerge, and it's amazing.
During tonight's bath, I put the foam letters "C-O-W" on the side of the tub and said, "Cow." A few minutes later, when I was scrubbing his back, C filtered through the whole alphabet floating atop the water, placed "C-O-W" on the side of the tub himself, and exclaimed happily, "Cow!"
He's a quick study.
At dusk tonight my wife pointed up and said, "What a beautiful moon!" It was just a sliver, but it was indeed beautiful. C, seeing it too, summed it up best with his expression.
Reflecting on this now, a few hours later, I'm reminded of the song The Whole of the Moon by the Waterboys. I can't say specifically why, other than the obvious connection to the moon. But perhaps it's because there is another story in the song, a story of one person who can't let go of reality, and someone else who sees only joy.
Guess who is me, and who is C?
I pictured a rainbow You held it in your hand I had flashes but You saw the plan I wandered out in the world for years While you just stayed in your room I saw the crescent You saw the whole of the moon The whole of the moon
You were there in the turnstiles With the wind at your heels You stretched for the stars And you know how it feels To reach too high (too high) Too far (too far) Too soon (too soon) You saw the whole of the moon
I was grounded While you filled the skies I was dumbfounded by truth You cut through lies I saw the rain dirty valley You saw "Brigadoon" I saw the crescent You saw the whole of the moon Yeah
I spoke about wings You just flew I wondered I guessed and I tried You just knew and I sighed And you swooned I saw the crescent You saw the whole of the moon The whole of the moon The whole of the moon
The torch in your pocket And the wind on your heels You climbed on the ladder And you know how it feels To get too high (too high) Too far (too far) Too soon (too soon) You saw the whole of the moon The whole of the moon
Unicorns and cannonballs Palaces and Piers Trumpets, towers, and tenaments Wide oceans full of tears Flags, rags, ferryboats Scimitars and scarves Every precious dream and vision Underneath the stars Yes, you climbed on the ladder With the wind in your sails You came like a comet Blazing your trail Too high (too high) Too far (too far) Too soon (too soon) You saw the whole of the moon
The whole of the moon Yeah, you saw the whole of the moon
I love you, son.
On the advice of our pulmonologist, we've been taking C off oxygen for short periods every day, gradually increasing the duration of these O2-free periods. We're currently up to 60 minutes, after which we measure C's oxygen levels using a portable testing device.
His oxygen levels are holding steady at 98-100% each time we test. For perspective, that's how well an individual with very healthy lungs would do!
Our little jester is full of surprises.
And that, to me, is the real point. Whenever I get down, something happens to remind me how lucky I am, how great C is doing. Sure, he has strikes against him, but he has a resilient spirit.
My good friend Sean often says, "C is going to surprise us all, you watch." I believe he's right.