I met the Rapp-Louis clan this summer, but not before Emily and I had already become virtual buddies as new hires at the arts college where we teach in Santa Fe. Instantly we clicked. We talked too fast. We cut off other people. We enthused, we raged, we gushed, we scowled, we laughed and we laughed and we laughed. We dreamed of doing a webisode series called the Reddish and the Blackish where we’d, a la SNL’s “Bronx Beat” and “What Up With That,” interview famous writers but instead talk about ourselves the whole time. Emily was the first time I believed in the notion of “fast friends”; Emily was the first time I thought having a sister or girl-twin might not suck.
We went on hikes. Dinner dates. Yoga classes (shadow yoga misadeventures, to be specific). Dinner parties. Department meetings. Readings. Taos outings, Chimayo adventures, Ten Thousand Waves nights.
We both had vegan significant others: Emily’s husband Rick, my fiancé Jason. We both craved meat and sometimes dabbled it in to the horror of the S.O.s.
I’d bring my dog over, Rick would cook (earning the title of my favorite restaurant in Santa Fe), and Emily and I would drink and eat and bitch and laugh.
We talked or emailed pretty much daily.
And then some time in January, me in New York, Emily back in Santa Fe, we suddenly didn’t. And something in me worried for a second.
And then I found out.
Ronan was the first baby I had held for more than ten seconds. The first baby I posed in photos with. I forced Emily to enter him in a GAP baby modeling contest and then I kept urging her to enter him another NM kiddie pageant. I fantasized about his future in the silliest ways. I decided he would go through a white rapper phase and started calling him Lil’ Rone$.
I fell in love with him immediately, which was most unlike me ( I can be a grumpy Cruela: loving hard and fast is not my way and I’ve always preferred dogs to kids.) Amazingly, every day, that love grew and grew and grows and grows. I feel like I know Ronan in a way completely independent of his parents even! At his first birthday party this weekend, Ronan was my dream boy in a beautiful blue checkered shirt and jeans, care of Emily’s ever-tasteful mother. He laughed and beamed in our arms; he drooled on our shoulders like any blissed-out baby; he cried when our cuddles were too clumsy; he even snoozed in the loud chaos of adult revelry. He looked like he was humoring us at points, as we all sang happy birthday and got in line to hold him and made silly faces and crazy sounds. It almost felt like he was doing it for all of us really, enduring the ordeal so we could all leave in smiles and tears and build our Facebook shrines to him. In that fantasy, he’s ahead not behind in development; I could see the eighteen-year-old Lil Rone$ thinking the same thing.
It kills me that he won’t get there, as we’ve all said too many times. But what I’m choosing to focus on is that look of peace on Ronan’s face the whole day, the same look I’ve seen him wear as he gulps down his favorite avocado mush or gazes at one of my dogs. It’s the only good in all this, the possibility of a life without pain, frustration, grumpiness, crabbiness, envy, etc. Ronan might know this world in a way we’ll never know it, and while we of course wish he would get all the bad with the good that means a complete life, there is something strangely merciful in imagining that in this horrific, insane disease there could be some pure state of peace, one far from physical and mental suffering, at least for a while.
But what do I know. When it comes to Ronan, I’m the greatest unreliable narrator in the world. I can’t face any facts; I don’t want the whole story; I can’t take the realism. I want my fantasy of the redheaded hunky teen with Emily’s eyes and Rick’s smile, with their brains and wit, plus a ladykilling charm all his own. (And maybe a fondness for Eminem and graffiti to boot.)
At his birthday party, my dad went to my car outside to cry for a good hour of the party. And finally, thanks to Emily’s dad working some pastor-duty-magic with him, he came back and told Emily he had never fallen in love with anyone as fast as he had with Ronan, which was of course precisely the way I had felt. Long before Ronan was sick I was spending hours in Toyopolis fussing over the perfect puppet and the nicest card for such an ace chap, wanting to arrange photo shoots of him and my dogs (Ronan in cowboy clothes riding atop my male saluki Apollo in front of a painted sunset; Ronan in his Santa suit with Apollo as Rudoph), and daydreaming about that very day, his first birthday. That quality of Ronan’s has nothing to do with Tay-Sachs and everything to do with his family.
Ronan at one is okay right now. For a long time, I’d have to add the line “but poor Rick and Em, I worry about them” to that. But seeing them at Ronan’s party was something else: here were the two strongest, most vibrant people I have ever met, in hearty smiles and soft tears and gutsy laughter and endless explanations, being resolutely mothereffing okay, because while we get to negotiate and ponder and shake our heads and be whiny and inconsolable and weak and goddamning, they don’t. They have to be okay. They can do this because they have to do this and they are doing with more honor and grace and strength than I’ve ever seen in my life. It is gutting and it is inspiring to be around that much beauty; we are all the luckiest people in the world to witness it.