Friday, February 22, 2008

Welcome to Year Two

And now back to regularly scheduled programming on the week that was: Thanks. Really. Everyone. I needed to do that, and the comments were just lovely, and meaningful, and heartfelt, and they helped so much.

I knew before the week started that I wanted to try and post a bit every day, but didn't know about what, really. Thought by the second post that it might be a bit about her, and a bit about how or what I was doing. But then I wanted to write about Dr. R., and then the story just took over, and well, here we are.

I didn't mean to turn this into a soap, but I must say (for anyone else wondering how to get through their deathiversary) that it was very therapeutic. It made me focus on Maddy a bit every day, which was good. I wondered before the week started if I could really carve out time for her daily, or if I'd chicken out and decide that lighting a candle while I watched Project Runway was about all the emotion I'd be able to withstand without curling up in the fetal position under my bed. In the interest of time I drafted a bit of each day in advance, and that actually helped too -- that way I wasn't creamed by the anticipation, I just got the fucker out already. I will say this: it was exhausting. I actually felt worse on the 19th than the 18th -- like I had been hit by a truck, and was emotionally drained. For anyone who posts once per day, hats off. Not for me. The emo and the time drain also ate into my comment time, so for that I apologize: I did read, it was very comforting to read, but for many of you with thick posts during that week, I simply could not come up with a coherent response.

What did we do all week? On Maddy's birthday, after behaving like any other Tuesday and taking Bella to school and working out at the gym, Mr. ABF and I went for a walk in the snow. We're blessed where we live to be surrounded by parks of various sorts, from planned and manicured to unkempt wild naturalism. All, apparently, allow for certain memorials -- trees, benches, nameplates. We're thinking of a memorial bench, where we can sit, and trace her name, and went for a walk to judge the winterscape from various bench locations. We brushed snow and debris off other benches, and read many of the dedications out loud. Maddy will be in good company, of that I'm sure. At 4:45 p.m., next to her (our) bouquet, we lit a candle.

The rest of week, other than lighting her candle every night, was filled with the minutia of life that goes on: a recon shopping trip for appliances for the new kitchen; parent-teacher conference; appointment with orthopedic sports doctor for the plantar fascia; kept up my gym and yoga schedule; made dinner. There were the occasional kicks in the ass: the generic medical form at the sports doctor included "Pregnancies: ___." Of course, there was no subsequent blank following for "Success Thereof: ___" or "Kids that Made it Through: ____" or even just a couple of blank lines for comment. My pen hung in the air (I'm there for my FUCKING FOOT, do they really need to know this?!) and decide to write "3 (1 living child)." Maybe it was just the week I was having. Someday I'll get brave enough to ask Julia if she writes "13" in those situations, and what the reaction is. And don't get me started on the ultrasound. For MY FOOT. (You only need me to take off my shoe and sock? What on earth will THAT tell you? Any chance I could borrow that when you're done just to see what the ovaries are up to? No, it's ok, I know how to find them.) On Maddy's death date, we didn't do much of anything. I was testier than usual, cried more than usual, and went grocery shopping. Family's gotta eat. The entire week was filled with moments of "what I was doing last year, right now" and that day probably more so. The hardest moments were around the time of Maddy's death, now a year later, sitting with Bella getting her ready for bed. Going in to help Bella through a coughing jag around 10 p.m. knowing last year, at this time, I was crawling into her bed so she could help me through the night. Knowing last year I didn't see Bella at all on February 18th. And knowing this year I won't see Maddy. And knowing the next morning, when I woke up, that was it. Last year, by this point, it was like now: Maddy was, and is, gone.

I had half a mind to recollect what limited memories I have of the following days, but my brain fizzles out. What really kills me is that I can't remember Bella at all. When -versaries occur on the calendar, it's rather easy with a child to look back and remember last year, and see how much they've changed -- birthday to birthday, Christmas to Christmas, winter to winter. Kids change so much in the early years, it's rather impossible to miss the evolution. And yet, I thought back about Bella, what she was last year at this time, and I can't remember. I know she was in diapers, and wasn't as tall, but I honestly can't remember her. What she was saying, what she was doing, what her favorite things were, what her favorite book was, outfits she might have worn, songs we listened to, nothing. I realized in my mind, as Maddy is frozen at six days, Bella for me is rather frozen at 2.5 years. I thought she was a rather precocious 2.5 year old, but I honestly don't know how she's changed this year, if she has at all. Could she possibly be more verbal than she was? She was already counting and spelling, has she really advanced any more? Did I stunt her growth by being grief mom, or did I really miss the entire year?

I also just want to iterate: I didn't write this for any kudos. You're right, I do hate the "strong" tag, because I'm not. I'm just somebody who got socked with an unbelievable amount of shit. I think what we all do as grieving mothers is simultaneously amazingly strong, and, what we have to do given the circumstances. And I think after going around this wheel for a year, that grief along the baby timeline is more similar than not, but that it's a matter of compression. Some people's tragedies are compressed into minutes and hours, others days, some months, and some I met in my support group, years. I don't think this makes any experience any easier or more difficult, I think it just makes them different. Did I make it through six horrible days? Yes. Could I make it though a stillbirth? A month of life in the NICU? Two years of shuttling back and forth to Children's? A cancer diagnosis, remisison, a recurrence, and death? I honestly can't say -- to me the unknown is positively wretched, and I don't know how any of you did it, how any of us are here upright on the computer and not curled up in the closet.

***

On Sunday, towards the end of the week o' grief, this story ran in the local paper (there's more here on their foundation site). And if the link times out or you've had enough dead baby news, here's the upshot: Couple has baby, baby has rare defect (no capillaries formed in the lungs), baby dies. They tell them it's probably a one-time freak mutation. Couple has another baby, baby dies. Whoops. Sorry, it's probably autosomal recessive. Couple divorces, man remarries NiCole Robinson (who played Margaret on West Wing). Since it's clearly an extremely rare recessive problem (and what are the chances this guy marries two women with the same extremely rare recessive crap?) they procreate without too much concern, have a daughter, who's healthy, fine. Decide to have another child, boy. Around 40 days old, baby's breathing fails, baby has no capillaries in lungs. Baby dies. Ergo: it's not recessive at all. Dad is the link.

This story freaked the fuck out of me. What if they don't find THE cause for Maddy? These people think they're rare -- at least they have 115 kids and a name for the damn problem. They're working to find the gene. We have no such luxury. So if they find nothing for Maddy, we're left with the ASSUMPTION, that this is SO rare, that it must be autosomal recessive. But they might be wrong. We might do egg or sperm donation, and wind up right back here with a dead kid. Lightning can strike twice. Or three times, poor guy. I'm not sure I'm ready to proceed on assumptions.

13 comments:

niobe said...

Yes, it is kind of sobering to come up against the limits of medical knowledge. Though even when, as in my case, what went wrong is absolutely clear, knowing doesn't help all that much if they can't do anything about it.

Coggy said...

The lack of information you have right now must be unbelievably hard. I guess it's a case of waiting to see what they come up with. Which just leaves you doing exactly that - waiting.

I don't think any of us could imagine living through each others tragedies and I often wonder how we are all sat here coherent and functioning. Its amazing what we can get through when given no choice.

luna said...

another beautiful post.

what you wrote about caring for bella during that time is so touching. I've often wondered how parents suffering such tremendous loss continue to parent amidst such anguish.

I hope writing this week helped you process your lingering grief. thinking of you. ~luna

Gail said...

Tash, thank you for so profoundly sharing your thoughts and feelings about the tragic loss of your precious baby daughter. After having read your blog, I no longer feel so alone in my grief. By the way, your writing is stunning and beautiful.

Amy said...

Tash,
That story is heart wrenching, how sad that they couldn't find the problem before losing any child! How sad it is that we are still so limited by science.

I am amazed at each and every one of us for being upright on any day. Sometimes more so at myself than others just because I know me all to well. But amazed non the less!

Julia said...

You know, I find that the differences get a lot more subtle with age, and I can't always tell you exactly what changed in a given period of time. I know there are moments, like, say, the moment you had in a car the other day, when I realize how grown up she is. But I still can't tell you when it happened. Sometimes I can remember when a given something clearly wasn't there. It's a lot easier with physical skills, and Monkey has new ones of those all the time since she does gymnastics. The other stuff? A lot harder.
So this is my very long way of saying give yourself a break. It could also be that some time later it will come back to you, sort of like the hospital story came back to Bella.

About the genetics thing. It must be terribly scary for you. I know very little for sure, so take this with a giant grain of salt. Capillaries in the lungs are a local issue, one cell type. So as unlikely as this is, it is possible to have a dominant trait with incomplete penetration (this, btw, is the model of how BRCA-1 and -2 genes work to cause breast cancer, but only in some people with the mutation). In Maddy's case, the effect seems like it was much broader, much more multi-organ. I would be incredibly surprised if there was an example of a dominant incompletely penetrant trait that fit this scenario. This is because if the gene is exercised multiple times in multiple organs, the failure should become evident somewhere. Fun stuff, I know. And again, no clue how helpful this could possibly be.
The decision in front of you is just so very hard, and isn't likely to get any easier without some definitive new information. Is there any word on when any of those seven tests might come back?

Lisa b said...
This comment has been removed by the author.
Dayna said...

I saw that same news story.

I wasn't sure where you were from but I thought we were from the same area. Kind of gave me pause and made me wonder what I was doing last year last week when we were right down the street from each other.

I like the idea of the bench; something where you can physically trace the name.

Beruriah said...

I often wonder too how any of us managed to just get up and leave the hospital, much less do normal life tasks. Or smile, or ever be among other humans.

I wish you had some answers.

CLC said...

I saw that article too. It's a scary world out there. I am sorry you don't have any answers yet. That is probably the most frustrating thing in the world.

LAS said...

That's very scary not to have answers and very unsettling. I sometimes feel like there is limited information available to me about what happened to me - getting breast cancer at 28. I mean, I have no gene or anything and there is no explanation. A fluke they say. And when it comes to long term, I don't feel much comfort either. I am so sorry that you have been through so much. But thank you for sharing the stories.

The Town Criers said...

I don't know how you move into that without answers nor do I know how you move into it with answers. I imagine it is hard from any way that you enter.

I think, for me, the posts you wrote last week were so important because they helped me to understand the idea of the end of that first year. Julia (Won't Fear Love) wrote about it and as a Jew, it's certainly on my radar screen. But reading it in small bits each day made it feel as if the turning was being marked in this very significant way. I think everyone marks the turning in their own unique way. But your way allowed others to understand, know a small part of Maddy, etc.

Aurelia said...

I kept this clicked as new so I would come back to it. Tash, I think that you will get a answer and maybe a treatment, but it may not be right away.

It might be immediate...but mine for example, only came in 2005 for sure, and the treatment was kind of dismissed until I pushed to try it.

I guess what I'm trying to say is that you don't have to assume that if the news is "we don't know" that it's the end, since really they mean "we don't know just yet." A big big difference, IMO.

Hang in there hon.