Once In A Lifetime

S and I took a big step today. We got out of bed (before noon - that would have been a big step two years ago), did some housecleaning, and then did some more housecleaning.

Specifically, we gathered up all of the leftover drugs and medical paraphernalia from our fertility treatments so we could get rid of it. Deep breath, the thing hanging over our head as we ate lunch. Want to do it but don't want to do it. Hurts facing it but hurts to have it looming over our heads. Little reminders in every corner of the house. Time to get rid of it.

So we went through every room, pulled together all of the various and sundry bags of medication bought and donated to the cause. Found all the sharps containers (including the one we kept in the liquor cabinet along with the Ativan - our one-stop vice cabinet, it was - and gathered everything together on the living room floor. Where we sat, sorting. This has expired, this hasn't, these are still usable, these aren't. Box up the stuff that's still good, gather the containers, separate regular garbage from garbage with expired drugs in it (probably not a good idea to pour hormones and blood thinners into the water supply) and go, go throw it away, get rid of it.

For S it felt like another failure. Years of trying, hope, and heartbreak, reduced to a few boxes and plastic bags.

For me, it felt like something between the removal of a tumor and an exorcism. Something offending yanked and tugged out. The hole is open and raw, but fresh air is getting in.

The day is gray like slate, hot and humid. An oppressive day, not a day for joy.  It's quiet. We've indulged in some comfort food - potato chips for her, beer for me, ice cream for us both.  As we pick it out, my mind returns to the days after we lost the boys, the thought "why am I buying junk food? Fuck you, dead babies." That was the mantra, the war cry after the boys died. "Fuck you, dead babies."

I'm thinking more in terms of war with regard to our experience lately. In a recent post I referred to people who haven't struggled with child loss and/or infertility as "civilians." And today, as we were disposing of the expired drugs, I thought of all of the vials crushed, and it reminded me of some dialogue from The Wire, a/k/a "one of the best pieces of television ever created and probably the best cop show of all time"...

Detective Leandor Sydnor is preparing to go undercover to do drug buys. He and the other officers solicit the opinion of one of their informants, a longtime addict nicknamed "Bubbles." Bubbles comments on the relatively clean soles of Sydnor's shoes...

"You walking down them alleys of the projects...
you stepping on the dead soldiers."  

"Dead soldiers?" 

"Yeah, empty vials. You can't walk down a Baltimore street without them cracking underneath your feet. You want to know if a fiend is for real...check the bottom of his shoes."

So I'm thinking about all the dead soldiers. All the vials, all the needles. The ruin left in the wake of all our attempts. Every war has casualties, every military operation (huh, "operation") does collateral damage. The veterans who return (and it occurs to me that S used to read a forum for people doing IVF called "the veterans board") have memories they won't share with anyone else - the blood, the screaming, the loss. One minute they're alive, the next they're dead.  You make life and death decisions, and the deaths happen in front of you and there's nothing you can do but keep them from suffering. We make horrible jokes, cruel jokes, and find it hard to be sympathetic or sensitive to the problems of others.

We have come home from a war, but we brought the war with us.

An old joke:

Q: Why did the Vietnam veteran cross the road?
A: You wouldn't know, man! You weren't there!

I don't know that it's a hard and fast line, but in my head I've divided up our friends into "the ones who get it" and "the ones who don't get it." They're all still my friends, but some...know. They've had their own losses or their own struggles conceiving, or they were there for us when it happened. They get it. Others don't, and I don't tell them stuff, it's not for them to know. Just like fathers and grandfathers don't like to talk about what they did in the war. I still love them, I still enjoy their company, and our loss doesn't define me, but there are some places in my head and heart that are mine and mine alone.

Maybe the anger is my desire to survive, to keep this from winning, as it were. To try and rise above the trauma and live well. Today felt like a step in that direction.  Coming home from the wars.

Father's Day, and it's quiet and still here. S left me pretty much alone today, which was exactly what I wanted, or needed. Just some time to sit here and hurt.

There have been a lot of tough conversations lately. S is doing much, much better than she was, which makes life a little bit easier. There's smiling and laughing again, and that's nice. Like healing always does, it happens slowly, when you aren't looking. Suddenly, all of the things that you never thought you'd ever be able to do (or do again) are easier to contemplate or even do. I can be around kids without feeling the loss acutely, maybe just a wry smile. And when it comes to the children of people I like, I can play with them, make them laugh, hug them, and it's okay. The wanting to pick them up and make them laugh comes so naturally you'd think it was wired in from birth. It's okay, the feeling says. You could be a dad after all. That's the feeling, that all of the worry and insecurity and unpreparedness for fatherhood I felt before we started trying wasn't necessary. I'm wired for it.

And then I have to give the child back.  And that hurts a little. It's a small, dull ache in the pit of my stomach, like all of those small moments after someone dies, all of the specific "I'll never ______ again" moments that reveal the truth of your loss. But considering there was a time I couldn't imagine being around kids at all, it's progress.

And then there's days like Father's Day. I wonder if this is how veterans feel on Memorial Day, if this is the one day they can't escape all of the stuff they'd like to forget. This is the one day when I can't duck around it, this is the one day I can't drown out the words I'm not a father, I don't have any sons. It rings in my head. Of all the things I am or do or have, that's the one that got away. And on Father's Day, no matter how much I avoid TV or even going outside, there it is. The little hands I'm not holding.

And like I said, we've been having some tough conversations lately. We came into a bit of a windfall after S's grandmother passed away, and all of a sudden, some things we thought were closed to us are open again. The thought of trying to conceive again weighs on me. Our odds aren't good, and at our age, they're getting rapidly worse. We could afford maybe one round of IVF, maybe. Or one shot with donated embryos. Or put money away for adoption. Pay off some debt, maybe sock some away for the down payment on a house or a condo. I can't imagine getting on that merry-go-round again: Tests, pills, shots, procedures, catheters, speculums, endless doctor's offices. I think about it and I start to feel sick inside. I think about people who did the work for twice as long as we did, and I honestly don't know how they did it. I don't think I can do it again.

S and I were both late bloomers in different ways. I made some bad decisions during college and ended up dropping out for about 5 or 6 years. I didn't graduate until I was 29. We got to where we wanted to be sort of late in life. I learned to stop kicking myself about it a few years ago.  But this brings it back. We're backed into a few corners - I've just turned 40 (Yay?), and S will next month. S still has work to do on her doctorate and I'm planning to go on the job market this year, though I'm not optimistic about my chances at a decent job. And we're still climbing out of the hole, one day at a time, learning to live our lives again. In some ways, we've just exchanged one set of pills and appointments for another. We don't have a lot of time left to start a biological family, and there are other life things that have to happen first. If we were in our late 20s, this wouldn't be an issue. Woulda, coulda, shoulda.

It's hard to face. For S especially. This desire to have and love a child is embodied for her in ways that it can't be for me. The world has told me no, it told me no when our only successful attempt at conception ended in death and blood and grief and pain. I felt like a door was closed in my face that day, and all I could see to do was put one foot in front of the other, make sure S was safe, and get back to the business of living. The world won't wait for you, I heard in my head. The world does not care about what has happened to you, and you have obligations. So come spring, I went back to school and wrote my dissertation. What else was I going to do? Shake my fist at the sky? The sky wasn't listening. The sky didn't care.

Maybe we'll try again. Maybe we won't. Maybe it's selfish, but I feel like we've got to put our own well-being first for awhile after sacrificing so much of it for so long. I'm writing a little more, keeping a blog on a totally unrelated subject. Still fighting depression, still wondering why and how I'm going to get things done sometimes. But most days I have music and light and a couple of sweet cats and an adorable dog and a loving wife and good friends.

Which makes Father's Day easier, when all of that goes out the window, and all I can do is sit here and feel empty.

There's an old prison maxim - "Drink a lot of water, and walk slow." Drink a lot of water because it keeps your system flushed out, and walk slow because you're going nowhere fast.

CDE: "Jesus, why are you so snappy today? You're like 'hisssss, grrrrr.'"

S.: "What's today?"

CDE:"Oh, yeah. I keep forgetting."

S: "So yeah, that."

(Curtain.)

Things have been going pretty well for us lately. Like I said, S. is doing much better, and we were looking forward to a nice, quiet Memorial Day weekend. I got some work done at school on Wednesday and Thursday, didn't make it in on Friday because S. and I had a much-needed air-clearing talk about me and my feelings and her and her feelings and our relationship. One of the things I love about our relationship is that we rarely full-on fight - we're usually pretty good about arguing about one thing and one thing only, though the loss of the boys has tested that considerably. So anyway, long weekend coming up, chance to relax, all is more or less well...

...and then Friday night, S. has a seizure.

I don't know when it started, I was dozing off on the loveseat in front of an episode of "Mythbusters" when an odd noise woke me up. It sounded like S. was hurt, like when one of the cats gets stuck and digs their claws in, but there were no cats near her, and her arms were drawn up close to her chest, her legs straight out in front of her, head to the side and her eyes closed. I knew this wasn't good - all the color had drained from her face, and her pupils were almost completely dilated. She didn't register anything I was saying or even that I was in front of her. As soon as it started, it stopped, and she fell immediately into a deep sleep. When she finally came to, she had no idea of what had just happened, wasn't sure of the year, and when I told her she'd had a seizure, it took 5 or 6 times of me saying it for it to sink in. Once it did, she got really upset and afraid. I told her we had to go to the hospital and she didn't want to go - it took a lot of insisting to get her off the couch and into the car. The whole time she just kept saying "make it stop, make it stop..."

I knew how she felt. No more hospitals. No more doubt, no more wondering what the tests are going to reveal. No more lives in the balance. We've had enough of that for a lifetime. No more crises, no more emergencies. When do we get to just take a fucking rest?

Long story short, there was no sign of stroke, her head and chest scans and x-rays were clear, so no masses or aneurysms or anything. Consensus is that her dose of Wellbutrin lowered her seizure threshold (apparently an established side effect for her dose range) and what were just myclonic jerks turned into a full-on tonic-clonic seizure. Prescription? Stop taking the Wellbutrin. Simple enough. We finally got home around 4am on Saturday and did a lot of sleeping.

Make it stop. No more emergencies. No more of me walking from the hospital back to our house to take care of the animals at 3am (and take my own meds while I'm at it), wondering what the scans are going to reveal - is it going to be a mass? Will it be malignant? Are our days numbered even shorter than all days always are? Am I going to be rattling around our place by myself, alone here, surrounded by the accumulation of our life together? Am I, in the end, going to lose my wife and my sons to whatever this is?

No, no I'm not. Not this time, at least. But haven't we earned some karmic right to a little peace and quiet? Haven't we earned the right to no more emergencies for a little while? Just that? Just some room to breathe and be?

It's been a rough few months.

My absence from this blog was about 40% deliberate. Like many of you, sometimes I need a vacation from dead baby land. I haven't been writing, I haven't been reading. So much grief, both for me and for others. Compassion fatigue. I can only give so much. It's important, but caring takes energy, effort, and lately I've been very tired.

The other 60% have been the reasons I've been so tired.

Part of it has been my new job. I love what I do, and it's such a revelation for me to wake up and not even think of it as "going to work." I don't love every part of it, and I don't love it every day, but I love what I do. But it takes a lot of time and energy. I was responsible for almost 170 kids across three classes, and this was the first time I've had this large a teaching load. Not a lot of time left in the day after that. I spent about a week out of school sick with a cold that turned into serious ear and sinus infections. I spent the rest of the semester playing catch-up. Not much left of my brain by the end of the day.

The rest? Well, if you follow my wife's blog, you'll know that she's been having a very hard time over the last few months. And honestly? I've never seen her so depressed in all of the years we've been together, including the time following the death of her mother from cancer. Helpless, mired in grief. Paralyzed by anxiety and self-doubt. In tears, constantly. Wracked with sobs and pain. I'll be honest. There were days that I wondered if I would come home and find her body.

Nothing I could really say to anyone else about it, and even with her in therapy, I had to get her out of bed, get her to shower occasionally, remind her that it wouldn't always feel this way, that there was a strong, smart, compassionate, kind woman under the grief and pain. It was tiring, so tiring. I was exhausted. So much on my shoulders, no time or strength to talk about it outside of my own therapy. It was all so big, and so important. I had to carry it. I had to be strong. Not much time left for myself at the end of it all. Nothing left to give to anyone else.

Fortunately, things are getting better. S. got her meds adjusted, is in therapy twice a week and consulting with a psychiatrist, and our beautiful, beautiful new dog is a source of joy and love and happiness. She gets us out of bed, gets us outside, reminds us of the presence of things that are good and pure and sweet. S. is doing better. Not cured, not even close, but no longer at the bottom of a deep, dark hole. I'm on vacation now, in many senses of the word.

We got up late yesterday. I was mostly exhausted after spending the last week grading final exams and papers. We ran to the market to get food, and I spent the rest of the afternoon and evening making chili. In our house, food is love. When S. and I first started dating, I would make her dinner on the weekends. It was my way of courting her. For me, cooking is comforting. It's a soothing ritual - the preparation of ingredients, the timing of different things. I put on the radio or some music, have a beer or two, chop vegetables, cook meat, add seasonings, stir. It's a wonderful feeling - just me and the ingredients and knives and heat. A world of my own. A way to meditate, almost. And at the end of it, something delicious, something tangible.

And so today, a day which proved so horrible and terrifying last year, we sit in our living room, something familiar on television, surrounded by sweet animals, and the sweet, spicy smell of the chili I made yesterday reheating in the kitchen. It's one of those dishes that's always better the next day.

Yes, that's an exponent in the subject line, because that's how I roll. Nerdy.

So awhile back, my beloved S posted her belated marriage vows to me on our wedding anniversary. Pretty much what she said was true (about the circumstances - her appraisal of me? I dunno. I try), and it made me choke up a little to read them. I mean, I know she loves me, and I know she knows I love her. And she knows that I know that she knows I love her, and she knows that I know she loves me, y'know? But on our wedding day, she wasn't her usual articulate self, and more than ever, I need to know what I'm doing right or what I'm good at, because dead babies provide plenty of evidence to the contrary. I especially thought it was generous of her to omit the fact that the rabbi read my vows from a piece of hotel stationery, hastily scribbled on the way to the ceremony, using the dashboard as a desk.

(Our officiant really was great - how often do you hear Hebrew prayers sung in a gospel style? That shit was amazing.)

She also failed to mention how amazing she is, and that should also be rectified.

I have yet to meet anyone warmer or with a more generous spirit than S. She is, under normal circumstances, one of the most caring, compassionate, sensitive people I have ever met. Her ability to find joy and pleasure in the simplest things - a drive on a beautiful day, ice cream, a bed full of dogs and cats, a lazy Sunday morning with tea, the New York Times crossword and some music - makes it easy to enjoy spending time with her.

She's incredibly smart - sometimes I think smarter than she gives herself credit for - and that, combined with her dry and clever sense of humor, makes for the perfect package for me. We're like Nick and Nora Charles, except less with the drinking and the crime-solving and the money. So maybe not so much like them.

What's more, these values are infectious. When we met, I wasn't exactly what you'd call a ray of sunshine. I was coming up on the end of three years of working two jobs (one full-time) and going to school full-time. I'd get up at 6:30, go to school, go to work straight from school, get home at 12:30, stay up for an hour, go to bed, and do it all again the next day. I'd come out of a relationship that had ended badly, and although I was a better, more mature, stronger person for the experience, I was also angry, bitter, cynical, and very guarded.

S. saw through that to the person I was - the person I am - underneath. She understood where the anger came from, and made it safe for me to not have to be so guarded anymore. She provided a healthy correction to my generally pessimistic outlook. Just by having her in my life, I am a better, more compassionate, more thoughtful person. She lifts me up.

Plus, she's cute as hell. That doesn't hurt.

I remember the first time I said "I love you" to her. We were at one of our favorite restaurants in Boston (the S&S Deli, for those of you playing along in the Boston area), and she ordered a hamburger. When the food came, she promptly took the hamburger apart, removed the fresh tomato, and replaced it with ketchup...

Me: "You just took the tomato off."
S: "Yeah..?"
Me: "And replaced it with ketchup."
S: "Yes."
Me: "You do know that ketchup is made with tomatoes, right?"
S: "Yeah, but it's a different experience. It's all about the texture."
Me: (laughing) "I love you."

That was it. No violins or candles, no huge buildup, no "tonight's the night he's going to say it" or any of that other romantic-comedy bullshit. Nope, just her and me, sitting in a booth, laughing and me spontaneously expressing what I was feeling at that moment, which was tremendous respect and affection, and joy at being in her company. You know, love.

And that's how we go through life: Next to each other, facing what's ahead, laughing and taking joy in the simple pleasures when we can, holding on to each other when we can't.

I love you, S.

S and I have developed a shorthand for how we're feeling, or why we do (or don't do) certain mundane things. It took us a little while, but at some point in the last three months, we were able to actually say out loud that our children were dead. That Jacob and Joshua were dead. The act of saying "dead children" or "dead babies" was, at first almost violent, like using a really offensive or unacceptable word. I wonder how much of that has to do with how able we were at that point to accept what happened.

Fortunately (or unfortunately, take your pick), it's become much easier to say, and has become our watchphrase for how our grief is affecting us in the moment.

"I know I need to get these dishes done, but...dead babies."

"I shouldn't be eating potato chips straight from the bag, but...dead babies."

"I know the laundry is out of control, but...dead babies."

Some people might interpret this as a trivialization of our loss, but I suspect anyone who has suffered a similar loss knows how hard it is to imagine trivializing it. There's also the dark humor we use to comfort ourselves, but that's its own post. One of the things I love about my relationship with S, from when we first started dating up through marriage, is our ability to continually build a private language. Pieced together from shared experiences, movies and TV shows we both enjoy, songs, it may not make much sense to people outside of our relationship, but to me it represents the accrual of time together, of forging a shared history. Part of that is tragedy, and if for some time we need to use a phrase as ugly and final as "dead babies" to convey something, that's okay. Because it means we're still communicating.