A Very Post-Modern Family : Christmas

Showing posts with label Christmas. Show all posts

Tuesday, January 5, 2016

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

Tuesday, December 22, 2015

A Christmas Letter to Willy

Dear Willy,

It's almost Christmas. It was your favorite time of year. I have so many pictures of you sitting by the tree and lying under the tree just staring at the pretty lights. I have pictures of you trying to roll into the nativity scene and the village we used to put under the tree. We used to joke that you were a big monster trying to damage the village and destroy the nativity as you rolled over on it!

I already wrote a blog post about the 11 amazing Christmases that we had you here with us. As I was going through all the photos from each of the 11 Christmases, the memories were amazing. We had some fabulous Christmases. Grandma Juanita always did up a fantastic Christmas Eve. She'd decorate everything so beautifully and we would snuggle under her tree and have such relaxing Christmas Eve's. Christmas Day we'd have Christmas at our own house. Other grandparents and friends would stop over but we usually didn't go anywhere. We had such fun spending those holiday days at home, snuggling, cozy, watching movies, and just being together.

We've all been trying to figure out how the holidays will work this year. Dad and Trish have a new house and they've been busy moving in and making it a home. It's big and beautiful and has a fireplace. You would have loved rolling by the fireplace. Ted and I are still in our old apartment. We're comfortable there so we will stay for now. I don't think I'm ready to leave the place you were last. I still find syringes and other supplies here and there and when I do I always cry, then smile.

Grant and Gabby are doing okay. They miss you but are relieved you are okay now. Gabby has a pen pal at the University of Michigan and they write letters back and forth. She wrote to her pen pal all about you. She told her pen pal you were "safe now." Safe. I hadn't thought of it that way. I've been too sad to really think of how you might be now. But I believe she is right. You are safe. You are whole. You have friends. I know you are with Grandma Juanita and Grandpa DuWayne. That makes me happy. I don't know how the afterlife works exactly but I know it's nice. And pretty. And you are whole. And you don't have any seizures. And you can breathe well. And you are safe.

We did what we had to do, here on earth, to make it to the end goal which is to deliver you, safely, to the next plane. Your stay here was shorter than we would have liked but we made our goal. We took care of you and worked as a team to deliver you, safely, to the next plane. I'm trying to think of this all in positive terms, you know, find the good and all that.

Willy, I miss you more than I can even say. Most days I keep busy and that helps. But when I slow down, the nausea, the sad, the grief comes back. It's the price for loving you. It's worth every bit. If you see me crying, or your dad, or any of us, don't be sad. It's just part of our process. We have good days and bad days but we are still all together, as a team, taking care of each other. Some day we will be back with you but it will be a while, okay?

We will come to visit your grave on Christmas Day. I know you really aren't there but I want to decorate it a bit and just say hi.

Merry Christmas, Willy. Your first Christmas in heaven. I can't even imagine how neat it must be!

We all love you so much.

Love,

Your momma and your family

Wednesday, December 16, 2015

11 Christmases

Willy lived 11 years, 7 months, and 25 days. Within that time frame, we had 11 Christmases with him. I always felt bad for those who lost loved ones around the holidays. It's like extra salt in the wound. I dearly love Christmas but it should come as no surprise that I'm having a hard time getting into the holiday spirit this year.

My hospice grief counselor called me yesterday to check in. There is a lot of grief support available and it's free so there's really no reason not to take advantage of it. We had a nice talk and I plan to talk with her again soon. During the conversation, I acknowledged that I have been focusing perhaps too intensely on Willy's last few hours. I know there's no rules for grief but it doesn't seem healthy, to my untrained mind at least, to focus that hard on the last few hours. I realize that since we packed 20 lifetimes into his 11 years, there are plenty of good times to focus on. And since I have a slight photo obsession, there are no lack of photographic reminders of all the good times.

This year Willy will spend Christmas in a much better plane. Regardless of your belief system, I'm fairly confident that most of us have some view of an afterlife. Whatever we're doing here, I bet Willy is doing it better there. Ted and I plan to go visit Willy's grave on Christmas Day after we drop the kids off at Todd and Trish's house. It will be sad. No one should have to visit their child's grave on Christmas Day. In preparation, I am writing this blog entry to help me remember the 11 Christmases he did have here with us. They were all fabulous.

Travel back in time with me to remember Willy's 11 Christmases.

Christmas 2004

Willy had just been born in March and diagnosed in July. He had recently been discharged from the hospital and was on ACTH for seizure control. ACTH is a steroid shot and it blows the patient up all plump as you can see from the photos. He was a cute, fat little guy, wasn't he?