This One's For You, Grant

When I first started blogging back in 2008 I was more interested in politics and social issues.  Don’t misunderstand – I’m still interested, but I do not wish to stir up debate with a blog post that I have no time or intention in participating in after the fact.  Life took our family on some interesting turns so my blog has morphed into more of something that helps me document and work through these turns. These posts help me work out the thoughts that are in my head.

That said, although the blog lately has been about Willy and our journey with his transition, this post is about Grant. He’s 14 and a freshman in high school here in Ann Arbor.  To say that he’s had an interesting life is an understatement.  When Willy had his first grand mal seizure on July 9, 2004, Todd was home alone with both boys.  Grant was there, saw the whole thing, had to ride along with Todd and Willy in the ambulance, and wait at the hospital until we could find someone to come get him.  He’s seen the good, the bad, the ugly.  I can’t even begin to describe what he’s seen and internalized. He learned how to get Willy off the bus, get him in and out of his wheelchair, feed him, give him his medicines, play with him, change his diaper, and properly position him. Seizures didn’t scare him and he knew how to look out for them and what to do.

The night Willy passed, Grant’s first words to me were something to the effect of, “Mom, he’s okay now.  He’s healthy now and his body works.”  The first few weeks after Willy died he was a huge source of comfort, often just patting me on the back and asking me how I was doing.  He’s a 14-year old guy. He’s irritating sometimes and we don’t always speak the same language. But man, I love that kid.

I called him a kid the other day and Ted said we should probably be calling him a guy now.  He’s not a kid anymore. And he's turning into a really neat guy. We went out on a mother/son outing last Friday night.  We went downtown Ann Arbor to a fancy dinner and then we perused a few shops.  We went to my favorite store, Crazy Wisdom, and he bought himself a neat set of Russian nesting dolls that he thought were cool. In fact, when he realized that they stacked and that there were four separate ones hidden inside, he literally squealed with delight and exclaimed, “What kind of wizadry is this?”  It was hilarious. I hadn’t seen him that animated in forever.

Grant with his newly found Russian nesting dolls

This past weekend, I made him answer these questions that were going around facebook.  Here are his answers:

Without ANY prompting, ask your kids these questions. Its a great way to see what they think. Copy and repost with your child's name and age.

Grant, Age 14

1. What is something I always say to you?

I love you.

2. What makes me happy?

When I get good grades.

3. What makes me sad? 

When I don't get good grades. Which usually doesn't happen.

4. How do I make you laugh?

You don't. Just kidding. You're silly and lighthearted.

5. What was I like as a child? 

I don't know what you were like as a child. Annoying.

6. How old am I?

45. (At least he got that one right.)

7. How tall am I?

5'7". (He gave me an extra half inch!!)

8. What is my favorite thing to do? 

Clean the house. 

(I gave him a look.)

Clean the bathroom?

9. What do I do when you're not around? 

I don't want to know.

10. What am I really good at? 

Cleaning. Numbers. Math.

11. What is something I'm not good at? 

Nothing. (With heavy sarcasm.)

12. What do I do for a job? 

You buy things and pay for things at U of M.

13. What is my favorite food? 

Everything.

14. What do you enjoy doing with me? 

When we go out on the town together.

I had to crack up at some of these but the first and the last warmed my heart.  He hears it when I tell him I love him and he enjoys going out on the town with me.  That’s a parenting win, right?

Grant has his first set of final exams this week.  He studied and filled out study guides.  I helped him go over them and quizzed him.  He seems ready but I can tell he’s nervous.  I feel like this week is a right of passage in a way. His first set of cumulative exams in high school!  

Next thing you know, he'll be asking for the car keys...

Dreams, Nightmares, and Transformation of Energy

I've had three dreams about Willy since he passed. I have very conflicted feelings about these dreams. On one hand, they've been so real that it's been nice to feel my lips on his fat little cheeks again.  You know, the kind of dream you never want to wake up from.

On the other hand, they've been nightmares.  Because I do eventually wake up.  These dreams have represented short, frenzied, and fraught versions of reliving his death all over again.  For a split second when I wake up everything is normal. Then I remember. Then the dream becomes a nightmare and the weirdest, most uncomfortable feeling sets in.

In two of the dreams nightmares, there were very significant neglect issues.  Somehow Willy needed something I wasn't getting to.  A feed, medicine, diaper....  There was this feeling that I "forgot" about him.  But then I fixed him up, and gave him a kiss and all was well again. One of the dreams was simply a good one where we were snuggling and he was cooing.

Last night I had the second of the nightmares. The only thing I really remember is that his teeth and face were crusty with drool. While there were many tasks related to Willy's care, keeping his teeth clean and his lips moisturized were two that were always on my radar.  His lips were always dry as sandpaper. He never closed his mouth and his entire mouth, lip, and teeth area were always a nightmare. I couldn't stand the thought that he was uncomfortable because he was dry.

In the more peaceful one where I was snuggling with him, I was sad when I woke up.  In the two that were more anxiety ridden, I was glad to wake up.  The thought that I had neglected him in some manner was almost worse to deal with than his death. I’m not looking for dream interpretation here. I know more will come and some will be happy and comforting and some will be full of anxiety and depression.  Like the dream where you show up in high school with no clothes on.  Dreams happen.  Good and bad.

The only thing I take from these dreams is the fact that I am connected to Willy on a different plane now.  He’s not here with me on our earthly plane. And sure, I have plenty of memories, pictures, and videos to remember him by.  But these dreams remind me of one of the basic laws of science – the Law of the Conservation of Energy.  To quote Albert Einstein, “Energy cannot be created or destroyed; it can only be changed from one form to another.”  You know, like how a toaster turns electrical energy into thermal energy. I'm not trying to compare Willy to a toaster but I like examples of the ideas that run around in my brain and that was the first thing I came up with. 

Opinions on the afterlife are often attached to whatever version of faith and religion one subscribes to. My faith is an interesting topic and one I am not going to address here.  But based purely on SCIENCE, (which we all should be basing our decisions on in my humble opinion,) I am trusting in Einstein's law of energy conservation.  This article in Scientific American answers a big question: Is energy always conserved, even in the case of the expanding universe? Well you can read for yourself but the short answer is yes. From the article: 

"It turns out that in Einstein’s theory of general relativity, regions of space with positive energy actually push space outward. As space expands, it releases stored up gravitational potential energy, which converts into the intrinsic energy that fills the newly created volume. So even the expansion of the universe is controlled by the law of energy conservation."

(http://www.scientificamerican.com/article/energy-can-neither-be-created-nor-destroyed/)

The takeaway? Or at least MY takeaway? If it's good enough to explain the expansion of the universe, it's good enough for me and Willy. 

Visit me again, Willy. But just snuggle this time.

Grief Isn't a Zero-Sum Game - #griefmath

While I can't speak for other parents with terminally ill children, my experience with Willy's death has been very different than I anticipated.  Acknowledging the fact that no two grief experiences are the same, I really thought that considering Willy's lissencephaly, the grieving process would be somehow mitigated.

I grieved when Willy was diagnosed in 2004.  It's so long ago that it's starting to get fuzzy but I recall having a few horrible nights in the hospital crying for what wasn't going to be and the excruciatingly difficult road ahead of us, all while knowing he probably wasn't going to live for more than two years.  I've blogged about this before; neither Todd nor myself turned the diagnosis into some long drawn out grief fest.  It was tough. More than tough. Especially the first few years.  But we jumped in with both feet.  Over time, Willy became so normal to us. The lifestyle and culture surrounding the special needs world became second, if not first nature. It seemed we had left the grief in the past and gone on to simply live.

We knew he'd pass early. We had many close calls. Two years ago we signed on with hospice services and drafted a Do Not Resuscitate order for Willy. It still seemed normal. Difficult and sad, sure, but normal.  Our normal. Willy's normal. The normal that was our life.

All these events, the diagnosis, the 11 years of decisions and care, the fights with the insurance companies, the hundreds of appointments and hospitalizations, to me they seemed like some sort of post-death grief mitigation.  I knew Willy's death would come.  Although I didn't focus on it, many times I'd think of what songs I might like played at his funeral and how it would be a celebration of life.

Let me just say Willy's death was not mitigated in any way, shape, or form, by the fact that we knew he was going to die early. And this has surprised me. The dark moments come often.  Details of the night he passed haunt me.  I try to stay crazy busy so as to avoid the nightmare. Grief waits though. It's always hanging around and shows up at the weirdest times.

After a wonderful weekend with friends, family, and fun activities, I hit the grief wall about 9:00 last night. It came in fast and furious and instantly changed the light mood of our evening together. Ted rolled with the change and immediately kicked into supportive partner mode. He let me talk awhile so he could get a bead on where my mind was, snuggled me tight, and then did what he does. Tried to help me make sense of it all.

Ted explained that it's simple math, really. It was easy to think I had already grieved Willy since I already dealt with his terminal diagnosis 11 years ago.  I had already come to terms with what he could or couldn't do, or would or wouldn't be.  But grief isn't a zero-sum equation.  That earlier grief was not a downpayment or a head start on the devastating loss I am feeling right now. Instead, it's cumulative. It just piles on.  The grief I am feeling now is being added to the grief from the diagnosis and the grief from the last 11 years.  Now, in addition to all of that, I have to face the loss the way anyone else would.  My child died in my arms.  There's no sense in which Willy's actual death is "better" or "easier" because I've already gone through these other griefs in the past.  There's no "at least" that takes away the sting or the sorrow.  There's nothing that could have prepared me for or mitigated what I am going through now.  One does not diminish or attenuate the other, but rather they compound and amplify each other.

Ted has said over and over that he'd do anything to be able to carry some of my grief.  Of course we all know that is impossible.  But with this explanation of what I am forever more going to call "grief math," he did, in fact, pick up some of the burden for me.  It makes sense and helps me understand a bit more about why this is harder than I thought it would be.

One of my fellow lissencephaly parents, Karen, lost her daughter Hannah years ago.  She's a bit ahead of me in this journey so her words of wisdom are much appreciated. She simply said this:

Grief + Grief = Overwhelming Grief

She also said this, "You think you will never get over it and you will never be the same again, and both are facts, but you do learn to live with it and it does soften."

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