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.