Please read Henry’s story

Henry, Wilco, and The Whole Love

Sep 302011

My son Henry was born a musician. In fact, even before he was born, I could feel him move and react in my belly when I played certain tunes; at the time, I carefully noted in his baby book that his in utero preferences leaned to Public Enemy, Big Star, Jonathan Richman, and Loretta Lynn. After I gave birth to my son, my firstborn, his father would sway him around the rooms of our shabby student apartment while playing “Box of Rain” by the Grateful Dead at full blast. This was how he soothed Baby Henry to sleep. And it worked.

As a four year old, Henry taught himself all the words to every one of the gazillion verses to the song “American Pie” by Don McLean, and he would amuse me by singing this interminably long song when we drove the 3 hours from Knoxville to Bell Buckle to visit his grandparents. I don’t know how a little kid became so attached to such a quirky and melancholy tune, but he was just fascinated by that song for a year or more, frequently asking me to explain what various phrases within the lyrics actually meant. I distinctly recall struggling to find a way to respond to his questions honestly without terrifying my already somewhat anxiety prone preschooler with too much information about presidential assassinations and such.

When he was 8 years old, Henry asked Santa for a drum set, which he received and loved. And then when he was 11, his great Uncle John – also a musician – surprised Henry one day for no particular reason, presenting him with a beautiful little acoustic guitar, a real instrument sized down for smaller hands. For Henry, it was love at first sight; he pretty much never again went anywhere without a guitar strapped to his back or in his hands.

Henry began taking music lessons when he was in middle school (from the amazing guitar genius Carl Snow), but by that time my boy had somehow already taught himself to play his instrument of choice pretty well. I remember being fascinated watching my child teach himself guitar. He would simply sit down with that little guitar, position his hands, with those elegant and exceptionally long fingers of his, and begin picking and strumming until chords would emerge, followed by chord progressions, soon followed by actual songs. The process seemed magical and mysterious to me, someone who wasn’t born with this gift. How could a 12 year old boy simply start playing music like that?

I was privileged as his mother to witness the organic revelation of a gift with which my son had clearly been born – a talent in which my parenting of him played no role whatsoever. Watching Henry play guitar at 12, 14,16 years old, it was entirely obvious that my son had come to this dimension, this planet, this lifetime pre-wired with that musicality that some people simply have coded into their very DNA.

Henry died on May 31, 2010. He was only 18 years old. He left us the same week that all of his friends were walking across various high school gymnasium stages, grinning from ear to ear for their camera-wielding parents as they were handed their high school diplomas.

Henry didn’t want to die that week. He didn’t want to miss the rest of his life. For starters, he wanted to go off to college in the fall with his classmates, and he definitely intended to get out of that hospital alive. He never once gave up, even when he was scared. When a sweet, pretty young nurse asked Henry 2 or 3 weeks before he died what his plans were for after his release from the hospital, my charming son unfurled that deliciously sly grin of his and politely replied that his plan was to move to Kenya and “operate my own monkey farm.”

Monkey farming notwithstanding, even at an often confused and very young 18 years old, at a time when he was unsure of so many things, Henry knew one thing for certain: he wanted to live the life that lay ahead of him in whatever way would allow him to create and listen to as much good music as possible. That much, he knew.

In those last weeks – when the progressive brain damage was slowly taking him away – a terrible, creeping death made all the more cruel by the fact that Henry was absolutely, totally aware of what was happening – he was day by day becoming less able to communicate verbally. But even as he was finding it harder to get actual words to come out, he remained the same guitar player he’d always been, the same natural born musician he had been before he knew how to talk at all.

In those weeks we spent together in the hospital as he died, if I turned the lights down low in his room and sat beside his bed, and if I turned on music that he loved, Henry’s muscles – by then perpetually, painfully tensing with involuntary movements that mortified him – would temporarily uncoil. His face would soften as those beautiful brown curls fanned out across the pillow beneath. He would close his eyes, and go deep inside the most fundamental part of his being, the part of himself that no drug or brain injury could ever damage or destroy, and he would eagerly lean into the music coming from his green iPod, plugged into the small speakers we had set up near his hospital bed.

As he visibly relaxed and was transported away from the physical location where he was now trapped, he would joyfully tap the bedrail in time with the music filling the small room. Sometimes he actually got the rhythm of the song playing. More often, he wasn’t able. But it didn’t matter. Inside his gorgeous, deteriorating mind, he was no longer bed-bound and unable to play his beloved guitar. Instead, he was a musician again, in that moment both soaking in the sounds and also creating his own piece of the music, using the only part of his now-ruined young body that would still mostly do what he asked of it – the palm of his hand lightly slapping time on the side of his hospital bed, fingers strumming along as well.

Henry and I shared a love for the band Wilco. We saw Wilco live together only one time – a fantastic mother-son evening that we both remembered as among the best times we’d ever had together. The two of us assumed we would have plenty of time to attend more Wilco shows together in the years ahead. We talked about how fun it would be to see the band play in Chicago, Wilco’s hometown and a city Henry and I both love(d).

But now, obviously, that’s never going to happen.


Although I’m not a musician myself, I am and always have been an avid music fan. Listening to the music I love, seeing live shows, and discovering new bands have always been among my greatest pleasures. However, since my son died, I’ve pretty much avoided listening to any music at all. It just hurts too much.

After losing Henry, I found out very quickly that hearing a favorite Jayhawks tune or Ben Folds song no longer brought me any joy, but instead only served to amplify my already almost unbearable pain beyond endurance. Listening to specific songs that Henry and I had especially enjoyed together over his lifetime was even worse; every time I heard one of them, it felt like I was being cruelly taunted by the life I’d had before every parent’s worst nightmare became my own 24/7 reality – that old life I now realize I never appreciated as I should have at the time.

In addition to my active avoidance of hearing music I already know, I’ve also had no appetite since May 31 of last year for acquiring or listening to anything new. This is because when I realize that I’m listening to music that has only come to be since my child ceased to be, the pain of that realization sends me reeling. After having this happen a few times early on, I began carefully avoiding hearing or even hearing about any music created or released after Henry’s death.

New music is proof positive that the world keeps spinning on without my child in it, and new music reminds me that Henry will never have the chance to fully develop the musical gifts with which he was born. Neither I nor anyone else will ever hear the music I know he would have gone on to create. I do have a very few songs that Henry wrote before he died, but there was supposed to be so. much. more.

When I found out that Wilco’s latest record was out, I knew somehow that not only could I handle listening to it, but that I needed to do that. How did I know? Well, this may sound slightly deranged, but when I learned the title of this new Wilco release, it seemed like a message very specifically addressing the hurt and confusion and longing in which I’ve been enveloped since my son died. That title is “The Whole Love.”

The Whole Love

Those three words are so powerful together, forming a statement that’s much more than the sum of its parts – a statement that somehow made me feel like the universe was gently extending her hand to me, encouraging me to take hold, trust, take a chance, and open my ears and my heart to a new batch of songs from this band Henry and I both loved.

So I did.

I listened to “The Whole Love” early last week, alone that first time. And the album is so kind and warm and smart and thoughtful and loving that I knew I’d made the right decision. For the first time since Henry died, I accepted the risk and let go, allowing myself to be completely open and vulnerable to new music, even though I knew very well that the emotions it would stir up could be more painful than I could handle.

But that’s not what happened at all. As I listened to the first song on the new Wilco record, and then the next, and the next, I was filled up from the top of my head to the tips of my toes with happy, loving, joyful feelings – the kind of whole body musical joy that I’d forgotten existed. There was no sadness. No acute sense of loss or longing. In fact, as I listened to the record that first time, I felt a certainty wash over me for one of only a very few times since Henry died that my son is okay, and that he wants his mama to be okay too.

I’ve now listened to “The Whole Love” multiple times this week, and I find that I connect with each of the individual songs in a specifically meaningful way.

This is a really special record for me.


Yesterday, I received an email, out of the blue, with a photo attached. The subject line for the email read:


And this was the email:

Hi Katie,

You don’t know me. I never heard of you until I heard of Henry’s passing. I spent weeks reading your blog and I caught up on everything that happened. I have seen all of the pictures that people have sent you from all over the world. I have read every entry of yours over the past year. I used to have a mother-in-law who lives in Farrugut, so I’m very familiar with the Knoxville area. I felt connected in an odd way. I was so sad when I learned your story, Henry’s story. I have a 6 year old son and I look at him and try to fathom the pain and heartache that you have experienced. I am truly sorry that you have been through hell multiple times over!

Last night my boyfriend and I attended the Wilco concert here in Atlanta. When I learned that Henry loved Wilco so much, I felt a connection with him. As we sat through the amazing concert, I kept trying to picture your son standing with the line of young men who could easily have been Henry’s friends. Wilco’s new album is so incredible, and the concert was beautiful. I snapped this picture as soon as the light’s went up at the end of the show. Even though I did not know Henry, and I have never met you…I felt like he was there. I shared Henry’s story with my boyfriend’s best friend who went with us. He’s currently struggling with a pill addiction as well, and I could see that Henry’s story made him think.

I will happily send you the program from last night that I wrote this on if you want.

Many thoughts and friendship,

Sarah in Atlanta

This is the photo Sarah sent with her email to me:


Thank you Sarah, for the email and the photo, and for remembering my boy.

Thank you Wilco, for the music you put into the world before Henry died, for that wonderful evening my son and I had together seeing you live, for the moments your songs allowed Henry to be a musician again as he lay dying, and for this new record’s ability to soften my clenched ears and my broken heart.

And thank you Henry Louis Granju for every single hour of each and every day of all 18 years that I was lucky enough to be your mama.

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