It’s said that a journey of a thousand miles begins with one step. In this case, one wobbly cautious step. Followed by a thousand miles of crawling between parents’ laps on an airplane, 2 feet at a time. One thousand, fairly smelly, poopy-diaper-filled miles.
I come to this city with an idea of hope, that we find answers, that prayers are answered, that one of the few things I’ve done right in my life is able to stick around and teach me more about myself as I teach him about the world. Is that selfish? Maybe, but no one would say I’m a selfless person. And no one would fault me for being a bit selfish in this case — look at the kid!
I also get bombarded by my sense of cynicism, realism, and negativity. I look at statistics for his disorder, the fact that this is experimental, and even the data so far doesn’t show a cure. I never feel like we’re coming here for nothing, just unsure if we’re delaying the inevitable, scared for him and myself.
But then I see how people react to Armand everywhere we go. On the plane, people around us just watched him, waved, smiled, clapped, and encouraged him, even though they had no idea who he is or what (if anything) is wrong. They just saw what we all have seen for nearly two years – a special little man. Something about him makes me feel like he is going to do something special, in some way.
Which brings me back to my fears: they also say the good die young. I don’t want to lose him, because no matter what special things he’s meant to do, he’s always special to me just because he’s my little Bubble Boy.
On a practical note, we’re staying at the Ronald McDonald House. If you’ve ever tossed your stray change into that little plastic catch-all under the window after ordering your McRib, thank you. This place is amazing, and a God-send for the three of us. Amazing rooms, play areas, video games, cheap pop machines, food, fitness area, gym, and best of all, a free shuttle to / from the airport, and to / from the hospital.
Ari’s first appointment is in the morning, with a geneticist. Time for Lindy and I to take our wobbly step. I just hope I don’t fill my diaper.