Right Now

“Walt, I’m glad we have the same good taste in music,” I murmur into my three-week-old son’s headful of dark hair. He’s clad in only a diaper, lying on my bare chest as I lay in the surprisingly comfortable hospital recliner. I think back to the hours spent in recliners like this one during my thrice weekly monitoring and testing in the Maternal Fetal Care Center the past three months. At each and every appointment, Walt did not react enough on the nonstress test, meriting further ultrasound testing. Consequently, each week, the specialists observed signs of new defects and disorders, the significance of which changed with each visit.

“Well, it looks like maybe he won’t need surgery in order to swallow, but now I think I can see a heart problem—we’ll refer you to cardiology for further testing. His limbs appear to be growing at a more normal rate, but I think I can see some kinks in his intestine—we’ll refer you to GI. Of course, we can’t know anything for certain until he is born.”

Three weeks since his birth, we now know that he has one rare chromosomal abnormality, three heart defects, severe hypotonia, is not taking food by mouth, and requires supplemental oxygen through a nasal cannula. We’ve yet to find out about his “smooth brain,” and sensory impairments. And the seizures haven’t started either.

I’ve gotten comfortable in these hospital recliners. A light blanket is draped over us, and I’ve got a hand mirror on one armrest, so that I can check on him, since he’s lying with his face turned to the side on my chest. My phone is on the other armrest, playing my hipster Pandora station softly. As usual, fears and uncertainty swirl in my brain about my baby, his health, his future, our family.

The nurses, touting the benefits of skin-to-skin contact, leave us to snuggle in the dimly lit room, coming in every couple of hours to check his vital signs and feed him through the tube through his nose. He lies on my chest and we listen to music together for hours at a time.

Careful not to disturb the tubes and wires that Walt is connected to, I rub his bare back, soft and fuzzy with baby hair, and sing along to the songs, soaking in this beautiful time together. I’m learning to combat the anxiety by striving to be fully present in the calm moments that we have, just the two of us. I lean back, relaxed, closing my eyes, continuing to rub my sweet boy’s back as I sing to him. He sighs softly, contentedly.

Wow

“So, what kind of music does Walt like?”

Walt is not responding to the tones that the audiologists are playing, so they want to try music. After three failed hearing tests, we have been sent to the Central Institute for the Deaf, where the settings are being determined for his brand-new hearing aids.

“Well, he seems to be really into Beck? You know, two turntables and a microphone? I think the unique sounds catch his attention.”

The audiologists clack their keyboards on the other side of the glass window in the small soundproof booth I am crammed into, along with Walt, who is sleepily snuggled in my arms, his stroller, which connects him via tubes and wires to his portable oxygen tank and monitors, my husband, Kyle, and another audiologist. We are all seated on kid-size classroom chairs, baskets of simple toys that are too advanced for my sweet sleepy little one sit unused, but not unnoticed, in corners of the tiny booth. I yearn for the day when Walt will catch up developmentally, be able to sit up on his own and hold and manipulate toys. I am holding on to hope, though eventually, with more time, I will realize that this isn’t meant to be for him, and accept that he is perfect despite his severely delayed development.

The lights are dimmed, which doesn’t help us in our mission to keep Walt awake and reacting to sounds. I shift in my tiny seat and try to prop my sleepy boy into a seated position, resisting the urge to let him cuddle up against my chest. The position change doesn’t seem to affect Walt’s level of alertness; he spends most of his time snoozing, regardless of the positions we put him into. His muscle tone is extremely low, he still requires supplemental oxygen, and is now taking large doses of two seizure medications. Existing is exhausting for my sweet son, and I’m more than happy to oblige him when it comes to snuggles. I’m trying to stop feeling guilty for indulging in so much cuddle time. I realize how important all of his therapy is, and feel that every minute we spend working can only be beneficial. But snuggles allow me to just be his mom; it’s so precious.

Not now, though. I jostle Walt a little and talk to him, resulting in a sweet sleepy slow-motion eye opening, a little smile, and sigh as they slowly close again and he tries to nestle back into me. I chuckle. He’s irresistibly cute.

The audiologist outside the window pushes some buttons and the lyrics “two turntables and a microphone” starts playing over the speakers in all corners of the booth, very quietly. The audiologist slowly increases the volume as we carefully watch Walt for signs that he is hearing. A few slight eyebrow raises, his eyes flicker open a couple of times, tiny squirms.

“Hmmmm. Not much of a response here. Any other ideas?”

“He really likes the song ‘Wow,’” I venture.

A few more clicks on the keyboard and the flute intro of the song comes through the speakers. I stare down at Walt, acceptance of yet another devastating blow battling inside me with a desperate hope for some subtle sign that he is hearing the music. As the volume gets louder, Walt opens his big blue eyes and keeps them open, widening them and raising his eyebrows as he squirms and moves his hands slightly.

“Oh! He’s listening! Do you like this Walt?” exclaims the audiologist.

“Ooooohhhhh.” Walt verbalizes in a happy sigh, his eyes bright and wide open now, his face lit up in his handsome double dimple smile.

I can feel my heart melting into a puddle as tears spring into my eyes. I’m overjoyed and so proud of Walt. For listening and for having such great taste in music.

Beautiful Day

I grin maniacally at the only blond musician in the trailer we’ve just entered. He tosses his long, shaggy hair, smiles back warmly and welcomes us, and I realize that he is not Beck; Beck is not in the trailer yet. We must be in here with the rest of his band right now. I am trembling with nerves and gripping Kyle’s hand in mine as we accept the blond guitar player’s invitation to sit on a white couch in front of the musicians, who are chatting and laughing together as they tune instruments. My other hand is clutching a photograph of Walt dressed up like a DJ for Halloween from last year, his fourth and final Halloween. We’ve been told several times since we arrived that this is a “fly on the wall backstage experience,” and it is unlikely that we will get to talk to Beck.

It has been about eleven months since Walt passed away, and meeting his favorite musician feels like it was meant to be. We’d bought tickets for this concert months in advance, of course, but thanks to my mother-in-law, who spends her retirement methodically entering all sorts of contests on our behalf (winning us everything from Sesame Street Live tickets to a month’s supply of frozen breakfast burritos) we’d won a second set of tickets and backstage passes.

After a few somewhat awkward moments where Kyle and I silently watch the band warm up, Beck enters and quietly greets his bandmates. He looks older in person, more “real” than I’d imagined, which just makes him seem more approachable. He’s wearing baggy black dress pants, a black old-mannish V-neck sweater unbuttoned over a T-shirt, and a black stocking cap over his longish blond hair. I can see a few wrinkles around his eyes.

“Did they take care of you with some good seats out there?”

I glance over at Kyle, flustered. I know I’m not supposed to count on being able to talk to Beck, but how can I not tell him why we are here? He gives me a nervous little nod, squeezes my hand. He’s even more of a rule follower than me.

“Um, well, we had tickets already.” I’m having trouble getting the words out, trying to be concise with the limited time we have with Beck.

“You are our son’s favorite musician. He loved you. He was a really medically complex kid, hearing and vision impaired, really low muscle tone.” I trail off.

“But he always perked up when we played your music. You could see it on his face, in his eyes. “Wow” was his all-time favorite, we used to show him the video all the time, I think the bright colors were easier for him to see. We were going to bring him to see you when you came here last September, but he passed away just a few weeks before your show. And then we won these tickets to meet you and…” I’m rambling.

“I just wanted you to know how much your music meant to him and our whole family. It was amazing to see how he responded to it.”

“What was his name?” Beck looks right into my eyes.

“His name was Walt.” I hold up the DJ Walt photo.

Beck examines it thoughtfully and nods.

“What song did he like?”

“Wow.”

Almost before I can say the name of the song, the repetitive cowboy-ish flute tones start to play, and the blond guy who’d greeted us smiles again at me from behind a laptop, then grins at Beck as the band prepares to play the song just for us.

I lean back and close my eyes, remembering holding my son as the music washes over me. I can still get my posture the same, legs spread wide so that his own limp legs could straddle mine while I balanced his head on my chest, turned to the side so I could watch his sweet face. My left arm went under his arm and around his body to prevent him from sliding off of me. I try to remember precisely how heavy he felt resting on me, and the ache in my shoulder and neck from supporting him. Those details are starting to fade a little, but his face, with those wide-open blue eyes, is perfectly clear in my memory. Tears roll down my cheeks as I listen, in the moment, as I strove to be during the good times with Walt. It’s magical.

Perfect Night

I’m trembling all over as I fast forward the video on our computer, anxious to share this surreal moment with our friends and family. I finally get it to the correct place and watch, soaking it in again, in utter amazement as Beck shouts out mid-song:

“I wanna send this song out tonight

To a special someone

His name is Walter, He’s not here with us tonight

[a few seconds of my ridiculously loud and off-key screaming]

And we’re all part of a beautiful thing that is happening tonight

Right here, right now

Just look around

This is your LIFE

Everybody put your eyes and your hands to the air and say

WOW

Beautiful.”

I notice the graphic on the screen behind the band burst into colorful W’s circling the globe as Beck sings:

“We’re gonna take it around the world,”

Sending Walt’s beautiful spirit all around the world.

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