Life Support

*This blog is written by Ted Troxell, husband to Dawn and step-father to Willy.*

When Dawn and I first began getting “serious” (whatever that means), she was worried about introducing me to life with Willy. I knew about this life, of course – Dawn and I had been friends a long time and I knew her story – but I hadn’t experienced it up close and personal. She was worried it would be too much, that I’d realize what such a life entailed and not want to be a part of it.

"Hey Ted!"

I reassured her that Willy was part of who she was, and that there was no calculus by which I could pick and choose which parts of her life, which of the various elements that comprised this person I’d fallen in love with, I was willing to sign on to. It was a package deal, and I would dive in with verve and gusto.

Teaching Willy when to fold 'em. 

So I did. I learned how to care for Willy. I learned what life was like in the special needs world. I learned not just the mechanics of care but also how that life changes people, how the jokes work, how the vagaries of everyday middle class problems are eclipsed by the grim reality of taking care of a terminally ill child with limited cognition and no motor skills.

Willy was a snuggly little guy...

I learned the drudgery but also the joy of caring for someone who had little to offer but general cuteness and coos and smiles, and even those seemed to be fading as he headed toward a twilight come too soon. There’s a certain clarity to that life: what we could and couldn’t do as a family was proscribed by our circumstances. Our days were organized around feedings and med schedules and who was getting him on or off the bus to school.

Trying to avoid formula spills from Willy's hands.  I'll show him! 

This is to say that I loved Willy the only way I knew how, by attending to those needs and taking my place in a constellation of caregivers who buoyed his life and made it possible. We are all, in a sense, on life support, eating and drinking and carrying on in order to keep on living, and Willy’s condition only brought this home more viscerally. The frailty of the human condition writ large in the body of a child.

Willy loved to sit up like a big guy. He'd often slide down or fall over so we had to secure him well.

Still, I didn’t have the same kind of history with Willy that his parents and the rest of his family did. Even some of the family’s friends and Willy’s long-time caregivers knew him longer and perhaps better than I did. I wasn’t there when he was born, or when he was first diagnosed. I didn’t live through the worst of it: the ambulance rides and extended hospital stays and prolonged battles with insurance companies to secure proper care.

One of the best Willy photos and memories.  I was playing guitar and he was loving it. I was able to get the best eye contact I ever got from him.

For this reason, combined with my personality type and my own mental health profile, my experience with grief is very different from Dawn’s. There’s a vicarious quality to it, a kind of empathic response to a sense of deep personal loss that isn’t really mine. I grieve for Dawn and Todd and the rest of the family, for those whose history with Willy is longer and more involved than mine and whose sadness is deeper than I can feel.

Again, hanging out on the couch with Willy holding my hand. 

Gabby came in our room the other night and Dawn wasn’t immediately awake but I was. “Ted,” Gabby asked, “are you sad that Willy died?” And of course I am, but in another sense I don’t, as the song from Spring Awakening goes, “do sadness.” I cry easily at movies but otherwise struggle with appropriate emotional responses. I sometime have to consciously make the connection between stimulus X and reaction Y, almost like there’s a Terminator-style internal menu that pops up and I have to choose.

With Willy in Washington, D.C. ready to do some lobbying.

In a way, this has been a blessing. Dawn is the strongest person I know, but she’s been leveled by loss and I’ve had to be strong on her behalf. “I’m so sad,” she’ll say, with air of surprise and self-judgment, and I remind her that it’s okay to be sad, that nobody but her expects her to not be sad. I mean, of course it sucks and I don’t want to see her in pain, but it’s also wholly appropriate. Dawn jokes about playing the “grieving mother card,” and it’s part schtick, but it’s also her struggling to give herself permission to grieve. Dawn’s inner Mean Girl can be a real bitch sometimes.

Taking Dawn to the gravesite on Christmas Day

I also notice how similar her experience with grief is to my experience with depression: how it comes in waves, how there’s an unexpectedly physical component to it that is hard to describe or explain, how it’s possible to be remarkably high-functioning and carry on normally while feeling dead inside and wondering if you’ll ever feel right again, how there’s a disconnect between what you might be able to intellectually recognize and what you’re feeling (or not feeling) on a more primal emotional level.

Depression and grief are both deeply personal experiences and n=2 is too small a sample size to indulge in generalities. On one hand, they are obviously related, and on the other hand the similarities might just be happenstance. But in a small way we’ve each been able to understand the other just a little better.

I felt like I lost Dawn for a while and had to wait for her to come back. She felt it too, and I reassured her I would be here. I am. Now we’re trying to figure out what life looks like in the aftermath. So much of the structure of our life leaned so hard on Willy’s care for so long that with that gone, we’re stumbling a little bit and trying to catch our stride.

It’s good; we’re not in a crisis. In fact, it’s more the disorientation of not constantly being in crisis. Dawn caught a nasty respiratory virus just after Willy died, and at one point we made a trip to the ER because she couldn’t breathe properly and was basically having a panic attack. The ER visit confirmed that it was just a virus and she wasn’t in any imminent danger (she’s still having trouble with her ear, though, so we’re getting that looked at), so we left the ER and got Pizza Hut. As one does.

Later, she said “I think part of me just feels like somebody needs to be sick, somebody needs some kind of emergency care. There’s a Willy-shaped hole in our lives that looks like crisis and I don’t know what to do without it.” That’s what we’re trying to sort out. Who are we, now that an important identity marker has been taken away? Supertramp gave us perhaps two of the most important questions of the postmodern age: “Where do we go from here?” and “Please tell me who I am.”

[Yes, the latter is technically a request and not, grammatically, a question. Don’t go there.]

We’re all on life support. This is one thing that Willy taught me. His life was different in degree but not kind. We all depend on a constellation of caregivers who come in many forms. Most of us are on some kind of medication (and/or self-medication – let’s be honest). We require medical care and often equipment. We eat, we drink, we carry on to keep on living, if for no other reason than life is so damn interesting. Who knows what happens next?

Let’s find out together.

Love is a package deal