Friday night we got to go to Chrysler Hall to see Finding Neverland. Someone had donated tickets to the Ronald McDonald House, and then they got passed along to us, and so I don’t know who to thank for this opportunity beyond Becky at Ron’s house. The production was impressive, good choreography, good scenery which was usually in motion, it seemed, changing often and on the fly during scenes, with the background a projection that could make clouds slowly drift across the moon, a lot of attention paid to the subtle details like that. My wife loved the hell out of it. I really enjoyed it, too, but my wife, she was transported, all the way to turn-of-the-century London. Or should I say turns-of-the-century. Or turn-of-the-centuries? I’ll stop.

Anyway. During the play she was enthralled with the world of J.M. Barrie’s London, and after, she was overwhelmed by memories of her own time in London and all of the theater productions she had the privilege of experiencing while there. I’ve never been to London, in any century, so I don’t think I could possibly have had the same level of enjoyment as she did, but as the night went on after the show I felt I couldn’t get back to our room fast enough. We missed the first train back by seconds, exactly the same way we missed our original train into town, with me standing at the ticket machine, fighting with it to accept a debit card. The next train wasn’t due for half an hour later, so we had some time. We sat on a bench in a relatively busy nightlife section of the city and people watched and talked, and I tried to settle into the moment and enjoy it but I couldn’t quite get there. I wasn’t that tired, but all I wanted was to get back, get into bed. In retrospect, I believe I was unsettled by jealousy, having watched all these people work hard on a creative endeavor and have it come to fruition, a culmination of their efforts. I was jealous of the sleep they would achieve that night.

Before the show, my wife posted an update on Alex, and as we’re writers an update is not just an update but a stylized piece of artwork, something we put effort into. Then she put her phone on do-not-disturb. By intermission she had like a hundred responses, people thanking her for the update and committing further emotional and spiritual support, and while we know that most of that love is a direct result of Alex being just the best, it also feels good to have positive reactions to something we have made.

There is nothing quite like a standing ovation, nothing that compares to giving an audience what they want, to satisfying the craving inside them they didn’t even know they had.

I don’t know how to tell you this, but—I’m not really myself, right now.

The first week we were here is now a blur, a condensed, jumbled collection of events, a roller coaster I must’ve ridden blindfolded for all I can accurately describe its ups and downs, but at some point in there I decided I would grow a playoff beard. Partly for good luck, partly to help pass the time, a playoff beard is typically grown during the playoffs, often by a hockey player, but some folks in other sports have been known to participate as well, not really in ladies’ softball too often but you get the idea, the idea being you don’t shave until you go home. For the athlete, then, a big ole beard would double as big ole badge, showing the world just how long your team has managed to stay alive.

I didn’t start from scratch, but my beard is now bigger than it has ever been. I’ve tried to keep it under control, kempt, trimmed along the side and up the neck, but every now and then a stray (often white) hair will angle its way out of the fray and into space, and I will see just how truly long this beard is getting. Otherwise it tends to stay curled up beneath my chin, making up in density what it’s not revealing in distance, but still, when I look in the mirror I see a different me.

This is also in part because I’m carrying around more weight than I ever have. Current medication has me stopped up and bloated, I don’t shit but once every three to five days. Our diet here in this hotel-room existence isn’t helping, although I do hit the salad bar at the hospital whenever I can. My stomach area is distended, my love handles waving at passersby. When I went home to collect the dogs a month ago I tried to retool my wardrobe a bit from the all-denim lowers by returning with a pair of corduroys. Only when I got all the way back here did I realize they didn’t fit. Several of my favorite t-shirts now look silly on me, tight like spandex, some that don’t make it all the way down the meridian of my belly to the belt line, leaving a gap which probably doesn’t reveal skin to the above-the-belt casual observer, but I can feel the breeze, the gap, I’m aware, I’m self-conscious, I know.

This has left my already-limited clothing options a little more limited. I have four hats with me, four of my favorites, but my typical rotation is ten or more, so I don’t even have that degree of variety going for me. When I get home, I expect most of these clothes I have with me now are going to go into a bin and put straight into the attic, not because I don’t like them, and not because they don’t fit (I’ll have more opportunity to lose this weight when I get home, I hope), but just because they need a break. Or more accurately, I need a break from them.

I could have grabbed another pair of shoes when I went home, too, but I’m still wearing the same three pairs I acquired here, the same foam-sole, Payless special type. And I always have a sticker on, identifying myself as a member of the group known as PARENT who has business with 4TH FLOOR NICU, with my driver’s license photo and the logo for the hospital, with the slogan REMEMBER HAND HYGIENE along the bottom. Not the catchiest of catch phrases, granted, and it probably won’t result in hand hygiene going down in the annals of history next to the Alamo or anything, but still, very important, given what’s at stake.

The sum of all this is a particular look which I don’t necessarily associate with myself. I have been thinking of it as a uniform, but really it’s more of a costume. My role is NICU DAD (AWAY FROM HOME). There is no understudy. This production is a limited engagement, but has been renewed for an indefinite amount of time, and under the terms of my contract I have no say in how long the run will last. Those sort of decisions are above my pay grade.

I could show up one day in a different costume. No one’s going to stop me. Particularly with the beard, that restriction couldn’t be more self-imposed. But I don’t, and I won’t. I don’t feel like a father yet, is the thing. I have to remind myself of this fact, somehow. My kid is not here to otherwise remind me. I don’t have him in a car seat sleeping in the chair next to me at this Starbucks. More to the point I wouldn’t even be at this Starbucks for this length of time if I did have him. I wouldn’t have the opportunity to space out, spend moments to minutes just gazing out the window in idle thought, waiting for these sentences to collect themselves in my mind and filter through my bloodstream down to my fingers. Even more to the point, he is not here and I can’t just look over at him and reckon myself through his eyes and familiarize myself with his wants and tendencies and provide him with constant supervision and tender care, I can’t pick him up just because and hold him and I can’t look at him and I can’t see him and I can’t look, I can’t see, I can only pull up pictures I’ve taken to remind me, his face being so new and so fluid and pliant that I can’t keep it concrete or intact in the files of my brain, I can’t even close my eyes and see him, he’s not here.

Of course, just wearing the costume isn’t enough. A costume doesn’t mean anything if there’s no audience for it to impress upon, so now I am here, writing this, chasing my audience, begging for attention, approval, applause. Observe my choreography, my elaborate backdrops. Feel the authenticity of my performance as DAD, my emotional swings, my soliloquys, marvel at the intoxicating undulation of my voice. Watch me dance. I dance for you.

7 responses to “Theater”

  1. You are still you. Awesome amazing you. Your writing is a clear reflection of that. Beautiful entrancing and poetic. Captivating. I feel lime im there with you and get caught up in it. This bizzare world is mybnormal (bigger) but my normal amd yet you make me see it in a whole new way. Under the uncomfortable unfamilar costume is the same amazong Aaron. You guys are as much the stars if the show as alex. You have made am amazong strong little guy mot a wwb becais you are strong spirited wonderful human beings. Lots of love


  2. You are still you – but who you are changes from day to day, just as your son changes from day to day, and he changes you, too. Whatever you thought being a dad was going to feel like, rest assured that nobody – NOBODY – heads into parenthood knowing what it’s going to be like, and what they themselves will become. He will make you the best version of you, because now what you do and who you are is not just about you anymore. Whether you feel like it or not, you have arrived. You’re in the club; lifetime membership. And you’ve more than paid your dues. In reading your words I can feel your angst, wishing for the moment that you’ll be toting that baby-laden car seat around. It will come. Your sleepless nights will transform once you become the primary caregiver, and there won’t be a cast of supporting nurses and doctors and all the rest, telling you to get some rest. Your sleepless nights will be for a different reason. That goes on for oh, about 20 years at least. You’ll find a way to develop endurance for this new challenge in your life. Consider that what you gain for all this angst is purpose. It sneaks up on you, but you’ll realize that your life before was lacking this special purpose whose name is Alex. And then you will have trouble understanding how you ever got through a day without that little guy there to make you a better you, the best version of you there could ever be.

    I like the beard. Need a pic…


  3. There is often a quiet beauty in despair. You have already helped your son in more ways than you will ever know. He draws strength from your touch. He senses the love in your heart. From your writing and sharing your story he gains the thoughts and prayers of so many. You are witnessing a miracle. You do not need to transport yourself to London to believe in something fantastical. Your words are raw and deep… you transport all of us to a world where we hope and pray, not only for Alex, but for all of you. You transport us to a world where dreams comes true and miracles occur. You transport us on a trip through your soul. Thank you for sharing. You write beautifully. You have an amazing son and are a wonderful father. Your outfit and beard are added badges, wear them proudly… as the hockey players are doing now… on to Lord Stanley’s Cup or should I say…Lord Alex’s Cup! Here’s to hoisting him high above your head in victory! Love and prayers from PA! #GrowAlexGrow


  4. I’m a writer and I envy you these words (though not the circumstance) and you are so on spot with Your knowing and your language. I’m jealous. You’re getting a book here. Keep on.


  5. Aaron, you and Gretchen are amazing. The way you express your feelings in your writing is amazing. We really get a glimpse of what you are going through. Our prayers are still with you. I can’t wait to read your book someday.


  6. Kudos to your continuing journey, but really, when you look back…. well, one saying comes to my mind from my very (tough) favorite nursing school instructor…she would say “Don’t look how far you have to go, look how far you have come!”Big hugs to you all!


  7. Michele Mitchell Avatar
    Michele Mitchell

    Someday Alex will be able to read your words. And some later day, he will understand them. But even now he can feel the love that lies beneath them.


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