Monday, June 27, 2011

Maybe Not So Much

I remember sitting in my first support group with a bunch of parents whose children had died at Children's, and played the little game in my head. Maddy was still fresh in my mind, it was maybe only two months out. I listened to each of these parents say a bit about their children and how they died and I began a slow burn.

"Here's a picture of her junior prom. I'll never see her senior prom." At least you got to see a prom at all!

"She was really weak, but she called over everyone in the room and told us something, just a sentence each." My god, your child SPOKE?

"He turned two in the hospital. We had a party in his room." You had a BIRTHDAY PARTY?!

Within 10 minutes I thought I was the lowest of the low, the saddest of the sad. Scrape me up and put me out why don't you, y'all have no idea.

But I went back again, and again, and listened. And my mindset, after a few months, had changed considerably.

No way would I have been able to handle a year or two or more at Children's. No. Way.

I know my child felt no pain, I have no idea on earth how you could stand and watch your child feel that way.

Funny, I know your child died at 19, but I really related to what you just said.

It was in one of these meetings, in fact, where I first uttered the name of this blog. A number of conversations and a lapse of silence later and a quiet mom whose thirteen-year-old had died of cancer turned to me and said, "What was that you said again? "Awful but functioning?" Can I borrow that?"


I know you've compared yourself to others before, it's human nature. It's ok. It's what you do with it and how the information changes with time that's important. I've got a post up today over on Glow in the Woods.

Sunday, June 5, 2011

Right Where I Am: Four Years, Three Four Months

(But Who's Counting.)

It's hot as Hades. I'm standing by the grill, monitoring the meat, and I look up and see that Ale has crawled into the (rusted, dirty) Radio Flyer. Mr. ABF picks up the handle and slowly starts pulling him around the yard. They quickly get to the spot in the grass, the exact spot under the chestnut kinda by the fence, where exactly four years ago right about now Bella did something cute. I honestly can't remember what it was, she was not yet three. But I do know it was a bright day like today, and I remember the ensuing conversation as if it happened five minutes ago:

Mr. ABF looked at me with a gentle, slightly sly smile and said, "How could you not want another one?" And I immediately burst into tears and practically shouted, "How could I lose another one?"

And through these ghosts, a silent dad slowly pulls a red wagon loaded with a fat baby gripping onto the sides for dear life as if he's plummeting downward through the hairy s-curves of a rickety roller-coaster.

I grin widely. I realize I have tears brimming over the corners of my eyes.

Must be my allergies.


When I saw Angie was doing this project, I thought, "Great Idea!" That was a while ago. I absolutely couldn't think of what to write, how to say it.

Four-plus years out is . . . easy. No wait, it's complicated. It's . . . hard to explain. It's probably why I don't blog so much anymore truth be told -- it's just hard to find a metaphor or a story that encompasses how it is I feel about IT. I'm generally happy and go-lucky and "back to normal" (whateverthehell that is), and honestly I can go for some amount of time without even thinking about IT. (And this is while wearing a bracelet with her name on it. Duh people, I tell you.) I sat completely bewildered in front of the paper this week as I read about a three year old who drowned, and was so overwhelmed with sadness for the parents, and wondered how the younger sibling would grow up with this history, and it honestly took me a day or so to realize why this story was hitting me with the amount of detail that it was.

It's a part of me, it's in there, it's not "healed" or "done" or "closed." But nor is it open, bleeding, cutting, hurtful. It's just there. It happened.



I know subsequent kids aren't supposed to provide the salve that mends the wound but there is a significant way in which Ale's presence has changed my mindset.

Maddy was -- and is -- a medical mystery. No one knows what happened, only that it was on a grand scale and fatal and weird. We gave Children's our permission to send out her samples for testing and review whenever they saw fit, without having to notify us each individual time and only contacting us should they get a hit on something. I didn't see the point of the up/down endless stream of waiting by the phone, so other than the first round of information following her autopsy which included a run through the Genome project and slides sent to numerous specialists around the country and even the world, we have received no news. No news in this case is no news. (I know they still run tests; when I called to tell them I was considering getting pregnant in '09, my point person said, "Oh! We were just talking about Maddy. We're running two more tests at Baylor." Clearly, nothing came of them.)

In retrospect the radio silence consumed me. It's not that I needed a cause or something to blame, but I needed information in order to move forward. To accept that one of our family heritages contained something lethal. To let Bella know in due time. To wonder if we could now get pregnant and test for this killer DNA, or use donor gametes. Or, perhaps, it was infection/abruption -- for sure, less likely to happen again, a moment of terrible luck. While I knew deep down I would probably never know, it seemed cruel that so much of my life was tied up in the knowing.

When we decided to run with the specialists who were on the side of infection/abruption and get pregnant again, Maddy came to the fore: The medical conundrum, the fetus who showed no signs of trouble through 32 weeks. The girl who stayed in an extra week, most likely because my body was the only thing keeping her alive. Maddy's identity is largely medical because that's all she was when she was here, and for that year that I conceived and gestated her brother, she was on my lips constantly. Why I wasn't excited, why I needed that test, why I wasn't setting up a room, why I was seeing a high risk doctor. It felt good to speak of her so frequently, even though what I was talking about was liquefied white matter and fatal cardiovascular malformations. I recently read Rebecca Skloot's The Immortal Life of Henrietta Lacks and I got -- I mean, I really got -- how easy it is to anthropomorphize body parts after a person is dead. It's not that the family members are dumb or don't get that tissue doesn't feel pain, it's that that's all they know. It's why I catch myself saying, "Maddy's going back to Baylor," when really Maddy is dead and her ashes are on my bookcase and tissue from her leg is somehow flying in the mail to Texas.

But it's her, and I get to say her name, and this is how it is.

Ale was born, he came home, and suddenly . . . it was as if this entire chunk of Maddy's being ceased to matter. Do I want to know what happened? Well I suppose on some philosophical plane it might be interesting, but it no longer consumes me or glues me to the spot unable to think about tomorrow or ten years from now.

But because this was so much of how I thought about her, now I . . . think about her less. And when I do think about her, it tends to be other stuff -- how she looked, how soft her hair was, how little I was able to hold her.

I don't think that's a bad thing actually, it's a bit freeing really. And it doesn't mean I still don't get walloped occasionally by the grief stick. Some night in the past week I went in to check on Bella who was lying in perfect profile, so peacefully. Mr. ABF and I have recently commented that with the adult teeth coming in and this latest growth spurt that has her looking more tween than child, that her facial features are providing a glimpse of how she'll look in the future rather than that extension of the baby photos. And yet, in the quick moment that I took her in, just so, I was suddenly transported back to the night Maddy died, when I limped into the dark house and went immediately to Bella's room and crawled into bed with her. It remains one of my more visceral memories.


At some point during the week after Maddy died, Mr. ABF told me something (now VP) Joe Biden once said. He was on Meet the Press, and the subject of his first wife's and young daughter's deaths in a car accident came up. Tim Russert (may he RIP) asked if this was a "defining moment" in his life and Biden said defiantly (and I'm paraphrasing), "No. It was the worst time of my life to be sure, but it did not define me."

And we decided, Mr. ABF and I, that we wanted to get there, to be that, to believe that. To be able to tell people and have them say, "Ah, now I understand how you made it through," rather than, "Ah, now I understand you." (When I explained this to my therapist, it was more, "Ah, now I understand how you made it through," rather than, "Ah, now I get why you're holding that martini.") I did not want to become a parody for lost children, a bereft, emotionally unsound, alcoholic, vacant excuse for a mother like that dumb-ass caricature of a (still) grieving mother in The Time Traveler's Wife. I wanted to remember Maddy to be sure, but somehow do it without breaking down, without resorting to morbidity, without disturbing those around me. I didn't want to deny, but I wanted to memorialize.

And yet I didn't want it to define me. I wanted it to be a bad moment, but not shape my existence.

I had no fucking clue how.

I still don't. But I'm a lot closer to that idea than I ever in a million years thought I would be. I tell people now who don't know but know me a bit and they're surprised; they ask great questions, I don't fall apart, it's filed away in the "life is sometimes really fucking shitty" drawer. And we continue our conversation about the book of the month, or our kid's hockey practice, or why on earth spring seemed to last two minutes this year. To them I'm a mother (now I suppose of three), a historian, a reader, a sports fan, an old-house nut, a gardener, a baker, a cook, a gal who likes a good beer, who needs a new vet, a runner, a wife, a politically cynical harpy who loves a good sale.

It happened. And I'm still functioning.