When Emily called to tell me about Ronan, the first thing I did (well, in truth, the first thing was to Google “Tay- Sachs” while still on the phone with Emily, desperate – her desperate voice in my ears – to find a foothold in hard fact, a detached safety in scientific information, my only knowledge of Tay-Sachs gleaned from a melodramatic narrative device in an old episode of CSI, which, Emily will remind me during this visit to Santa Fe, we watched together in our hotel room a few years ago while escaping from panels and schmoozing at AWP) was to clean out my closet. Because I could do that. I couldn’t cure Ronan or eradicate Tay-Sachs or make anything different or better for Emily and Rick and Ronan – and how dare I presume? – but I could do that. Emily and I wear the same size shoe, and I’ve suspected for the past year, since purchasing online from Anthropologie an over-priced pair of adorable pink and flowerly flats I knew in my heart I was now too old for and would never ever wear, that they’d probably wind up on her at some point. So there, in my closet, was something, at least, I could do, something I could offer, trivial as it was. That, and plan an asap trip to Santa Fe.
Because what can you do, really? What can you even say? Since that phone call on January 13th, I’ve often edited myself, weighed and measured my solicitous and understanding words, fumbled for the Right Thing To Say, the appropriate tone. If I ask direct, nitty-gritty questions, is that refreshingly non-nonsense – or too intrusive, too clinically bruising? Can I aim for the release of dark humor? Do I go optimistic, or fatalistic? If I mention my daily petty doings, am I offering respite, the brief illusion of (my own) normality – or being insensitive? People’s posted comments on her blog are so lovely, so moving – but my own emails wind up sounding like mere Chicken Soup For The Tay-Sachs Soul homily; I delete more of them than I send. I read Emily’s blog and find myself feeling, of all shameful things, envy for this dear friend’s stunning intellectual acuity, her prolific literary gifts, her spiritual aesthetic and the breathtaking scale of her sensibility, and then I am (shamefully) grateful for the familiar feeling of such a ridiculously safe emotion in the face of what Emily is feeling and experiencing, the profound, chasmic depths of which I cannot even skirt the edges of. I worry I am over-pouncing on her with my emails and texts and phone calls; I worry I am not doing enough. I am so worried, frightened, pained for her, for all of them. Packing for and en route to Santa Fe (fabulous Anthropologie shoes in my bag, oh my God, my friend Emily’s baby has Tay-Sachs and all I can offer is a damn pair of shoes?), I worry what I will find.
And here is what I find: simply, Emily and Rick and Ronan, a mother and father and their beautiful baby boy. You can see from Emily’s posted photos that Ronan is cherubic, happy and healthy, and the very image of an infant Emily – but there is nothing like that responsive in-person baby grin, the earned or spontaneous giggle, the lovely weight of him in your arms. The smell of his baby scalp after his bath; his chubby clutch on your finger. He loves to touch soft things (good taste in cashmere) and laugh at his clackity wooden hippo toy; he has clearly defined and expressed opinions (applesauce and mashed yams, Yay; an impassioned and anguished No to that pre-bedtime bath). He is, in so many ways, a typical baby, a reassuringly normal infant, and so comfortingly similar to the Ronan I last saw, almost six months ago. I love babies at this age – you can pretend-chomp on those baby fingers to elicit that delighted giggle and still discuss literature with Mom over the baby’s head, and, rubbing his naked tummy during a diaper change, I tell Emily, hoping she will appreciate and understand the sincere respect and love with which I offer the comment, that the deliciousness of this little soft sweet creature is somewhat like having a puppy. (And appreciate and understand, she does.)
But Ronan is not a six-month-old infant; he is off-calendar. His first birthday is next month, and this developmental moment-in-time that he occupies, that he is lodged in for now, is the opposite of comforting – it’s the reminder of how illusory this way of “normal” is.
And yet – this is a house of ordinary doings, of the most normal quotidian love. A clutter of baby toys, books and games; Rick looking up weird non-sequitur stuff online and illuminating us; Emily getting ready to go for an exercise class (I’ll go next time, Em, I promise); the typical routine of naps and feedings and put the baby in his bouncy swing-thing, and what are we all having for dinner? Emily and Rick are, simply, ordinarily, beautiful parents – relaxed, attentive, attuned, both playful and calm – not the Parents of a Sick Child. (And the Emily-and-Rick-way of “ordinary” has always been pretty damn extraordinary, anyway.) Despite Rick’s wickedly wry humor and Emily’s whirling-dervishhness, this is a home of extraordinary peace and delicate – there is no other word – grace. Yes, I am a guest, and perhaps – like the clean sheets and towels laid out for me, the refrigerator filled with my breakfast favorites – the house is in smooth-running hospitality mode. Of course there is the underlying anguish, the churn, the terror – I don’t mean to imply some artificial cheeriness or dazed denial is at play – but I have no doubt Ronan experiences and will only ever feel the unflappableness, the unconditional nurturing, the calming steadfast love and support that Emily and Rick share with those they love, the steadying presence and fierce loyalty they offer. This is the same Emily and Rick as always – and mornings when I creep into the living room at 7 am, to find Rick curled quietly, gently, tenderly with his little boy on the sofa, it is so clear this is the typical morning tenor of their lives. It is a gorgeous snapshot weekend, none of the snow and ice the forecast had warned; Emily and Ronan and I spend the day in picturesque downtown, shopping-yuppie-paradise Santa Fe (yes, shoes, check; yarn, check) and discuss what we always have: the endless loop of writing/books/pedagogy/Dexter and American Idol/politics/faith or lack thereof/the beauty, privilege and responsibility of friendship (we can add, now, our cholesterol counts). We go yakity yak yak so fast there is no possible pause for self-editing. And there is Ronan, of course, in his baby marsupial pouch, the touchpoint for everything now, informing it all. Emily gives me the real, personalized scoop on the disease, the Tay-Sachs 101 I have been needing to learn but am scared to ask about, and this time I listen very very carefully. We cry a little. We roam the local bookstore. We allow for silence. We crave a sweet nosh. Later, Rick makes one of his impossibly glorious vegan feasts. I get to give Ronan his bedtime bottle in a darkened room and listen while Emily sings him to sleep. Then we all sit together and read in the living room, Van Morrison playing, and I feel honored to be part of this family, to be in this home.
Ronan is not special because he has Tay-Sachs – he is special for that kick-ass smile and passion for mashed yams, his pleasure and peace in his mother’s song, his delight in his father’s embrace. He is the Ronan-est Ronan, the most perfect and singular Ronan that ever was or ever will be, in all his Ronan dimensions.
While Emily and I are checking our email (so typical, so normal), I find an update from a friend whose young wife is dangerously ill with cancer. I share the news with Emily – and What do I say to him, I find myself asking her, How do I respond? Just tell him you’re thinking about them, she tells me; What else can you say? She smiles at me; she knows what I’m also, truly, asking her. So, Thinking about you with love and hope, I write, and hit send. And I thank her. And we go back to our emailing, our students’ stories, our books.
So, thinking about you with love and hope, Emily and Rick and Ronan, always. I’ll still fumble for the right words at times, but I will try to follow your example: the steadfast presence, the simple expression of mindfulness, of care. Just be there, be present as best I can; say whatever I can, as best I can, just say it. And I’ll remember it’s the listening more than the saying – I will listen better, listen hard, listen anytime anywhere to whatever, however you wish to be heard. (And yes, there will be future offers of fabulous shoes, I can’t help it….) I am so grateful for your friendship, the warmth of your home, for cuddling your puppy-warm baby boy; I am grateful Santa Fe is a 50-minute plane ride from Phoenix. I’ll be back.