I've been tagged. By Coggy, who's gone private FYI -- contact her if you want the secret password. But after I let you all know six scintillating little known facts about Tash d'Awful (other than I'm apparently the most boring person on earth), I'm packing my bags. It's been years since our last vacation. Last year was, well, you know, plus Mr. ABF's job wouldn't give us a free moment. The year before we moved. The year before that, we actually had a lovely weekend in San Francisco . . . where we were for a business trip. Before that, you'd have to get to pre-Bella time. No, I don't count visiting family -- especially family weddings -- as vacation. But now? Mr. ABF is an independent consultant of sorts, and he's presently, um, on a sabbatical, working on the wine cellar in the basement. (We had a cellar in our old house, and thusly have about 500 bottles of wine in storage where they've been parked since 8/06. We miss them.) So he's laying down the saw and canning the insulation talk so we can split town for a few. Not to mention we need to get the hell out of here for a bit for mental health, and all that. So we're going someplace warm where they'll take care of us all, including, allegedly, Bella. I'll be back in a week.
I'll leave you hanging with this.
The rules:
1) Link to the person who tagged you (As above).
2) Post the rules.
3) Share six non-important things / habits / quirks about yourself.
4) Tag at least three people.
5) Be sure the people you tagged KNOW you tagged them by commenting what you did.
I write a blog. I apparently have this funky babykilling recessive gene . . . Wait a minute, wrong audience . . . stuff YOU don't know, but everybody else does. Hmm.
1) I like dark beer. I watch sports, sometimes indiscriminately, and would pretty much all the time if I could. (I have planned around sports events -- my birthday falls during March Madness and I have actually requested that the games be on, or my party held at a sports bar; and gotten royally pissed at people who do not take World Cup into consideration when planning weddings. Honestly.) In design, I am way more function over form. My dissertation was on military history. I hate shopping. I play poker. I think going to a car show is a freaking great afternoon. In other words, my big little known fact is: I am a man. (Kidding! Just an odd woman.)
2) I hate pudding. The texture wigs me out. I've never liked it.
3) I played soccer from roughly age 10-30.
4) My jobs have included: Planned Parenthood, music librarian, college (but not mine) library assistant, bartender, church newsletter editor (remember the irony: I'm atheist!), musician (played in a quartet that got gigs; played in an amateur orchestra), dean's assistant, and teaching college kids history.
5) I flutter my eyelashes -- really insanely fast, like an eyeroll (imagine me saying "Oh Puhlease"), but with my lashes. It's completely unconscious, and despite repeated demands, I cannot do it on request.
6) When I was a child, my favorite movie was Mary Poppins. I had the entire Mary Poppins get up with dress, carpetbag, umbrella, and poppy-adorned hat, AND the entire Jolly Holiday get-up with dress, fluffy white hat, and parasol. Depending on my mood, I would wear one or the other outfit everywhere, including grocery shopping and to biz-related dinners for my father.
Raise your hand if you want to know six things about Niobe? (Memememememe!)
Julia
whichbox
Sunday, February 24, 2008
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.
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.
Thursday, February 21, 2008
Toddler, Interrupted
So: I was going to thank you (thank you all, by the way) and go all Stephen King on your asses and tell you about writing the last week, and how it came to be and how it made me feel and yadda yadda yadda, eyes glazing over, but with a bit of profanity. But I'll save that post until tomorrow.
Last week, during our time out for grief, Bella was rather nonplussed by the whole thing. On Tuesday, she asked why we were buying flowers, and we told her. She asked why we were lighting a candle, and we told her. But she didn't follow up, and I don't like to push things down her little eardrums that aren't sought, and so I said nothing. I can't say I blamed her for not being interested, because really, how could she possibly remember or know?
This morning, on the way to school, we passed the hospital. Not THE hospital, delivery hospital, but our little local hospital that's a routine sign post en route to her school parking lot.
Bella: There's the hospital!
Me: Yup! There it is!
Bella: That's where I was when I was a baby.
Me: No, sweetie, you were born in another hospital, in [state where we used to live], by our old house.
Bella: No, that's where I went to visit you in the hospital, when I was a baby yesterday. (Her way of saying, any time in the last 3.5 years.)
Me: (Suddenly realizing what's going on) You did come to visit me in the hospital. But not that one. Maddy was born in a different hospital.
And suddenly, from the back seat, in Bella's small but articulate voice tumbled memories of her coming to visit me the morning after Maddy's birth. She remembered everything: the pictures of Maddy that the nurses had put on the wall, sitting on my bed and eating snacks off my tray, going to cafeteria to eat lunch with her grandparents. When I parked the car, I turned around and said, "you have a very good memory. That was a year ago. You know, Maddy's birthday was last week. She would've been one year old."
Bella: (looking a bit alarmed) what did we do? Did we have a cake?
Me: No, we didn't have a cake. We bought flowers.
Bella: Anything else?
Me: Flowers. And we lit a candle.
Bella: No cake??? Anything else?
Me: Well, we're thinking of getting her a bench, with her name on it at [park Bella knows].
Bella: (silent for a moment) You know, I think they have PUPPIES IN THAT PARK!! PUPPIES! puppies puppies puppies puppies blah blah blah puppies . . . . segue . . .
Only yesterday, did I comment on Searching's blog, that Bella never met Maddy. Bella fell below the age-limit for the NICUs, and worse, she was at the time in the midst of a four month runny-nose and post-nasal-drip hack. The nurse at Children's was geared up to "get around this somehow," but I demurred -- the last thing I needed on my head was Bella cough-spitting in the NICU and giving some poor tot with a deficient immune system a virus that would prove deadly. (I felt somewhat vindicated when two days after Maddy's death, she ran a temperature of 101, and had to be taken to the doctor.) Plus, I thought, she won't remember anyway. She's too young. Now, this morning, I realize, she remembers everything. Oh my God, what have I done?
***********************
Last fall, at the Deli Counter in the supermarket, I found myself in conversation with another mom from Bella's school (child in another class). I have zero idea how this came up, but you know it does with certain people, and there she was with her two boys telling me how she really wanted a third, next summer, maybe August. Did my best not to sputter at the absurdity of simply desiring a child and presto! having it happen, but let it go.
And this morning, after this conversation with Bella, I found myself walking out of the school behind this woman, talking with another mom, and suddenly heard her announce, "By the way, I'm pregnant. Eight weeks."
Yes, apparently you CAN simply desire children (live ones, duh) and they will fall into your lap like fresh fruit hanging from a tree. There are people who can casually discuss conception and pregnancy as easily as if they were ordering a latte, while some of us have discussions about baby death in the car before preschool. Everyone was right: so far, year two is worse. Much, much worse.
Last week, during our time out for grief, Bella was rather nonplussed by the whole thing. On Tuesday, she asked why we were buying flowers, and we told her. She asked why we were lighting a candle, and we told her. But she didn't follow up, and I don't like to push things down her little eardrums that aren't sought, and so I said nothing. I can't say I blamed her for not being interested, because really, how could she possibly remember or know?
This morning, on the way to school, we passed the hospital. Not THE hospital, delivery hospital, but our little local hospital that's a routine sign post en route to her school parking lot.
Bella: There's the hospital!
Me: Yup! There it is!
Bella: That's where I was when I was a baby.
Me: No, sweetie, you were born in another hospital, in [state where we used to live], by our old house.
Bella: No, that's where I went to visit you in the hospital, when I was a baby yesterday. (Her way of saying, any time in the last 3.5 years.)
Me: (Suddenly realizing what's going on) You did come to visit me in the hospital. But not that one. Maddy was born in a different hospital.
And suddenly, from the back seat, in Bella's small but articulate voice tumbled memories of her coming to visit me the morning after Maddy's birth. She remembered everything: the pictures of Maddy that the nurses had put on the wall, sitting on my bed and eating snacks off my tray, going to cafeteria to eat lunch with her grandparents. When I parked the car, I turned around and said, "you have a very good memory. That was a year ago. You know, Maddy's birthday was last week. She would've been one year old."
Bella: (looking a bit alarmed) what did we do? Did we have a cake?
Me: No, we didn't have a cake. We bought flowers.
Bella: Anything else?
Me: Flowers. And we lit a candle.
Bella: No cake??? Anything else?
Me: Well, we're thinking of getting her a bench, with her name on it at [park Bella knows].
Bella: (silent for a moment) You know, I think they have PUPPIES IN THAT PARK!! PUPPIES! puppies puppies puppies puppies blah blah blah puppies . . . . segue . . .
Only yesterday, did I comment on Searching's blog, that Bella never met Maddy. Bella fell below the age-limit for the NICUs, and worse, she was at the time in the midst of a four month runny-nose and post-nasal-drip hack. The nurse at Children's was geared up to "get around this somehow," but I demurred -- the last thing I needed on my head was Bella cough-spitting in the NICU and giving some poor tot with a deficient immune system a virus that would prove deadly. (I felt somewhat vindicated when two days after Maddy's death, she ran a temperature of 101, and had to be taken to the doctor.) Plus, I thought, she won't remember anyway. She's too young. Now, this morning, I realize, she remembers everything. Oh my God, what have I done?
***********************
Last fall, at the Deli Counter in the supermarket, I found myself in conversation with another mom from Bella's school (child in another class). I have zero idea how this came up, but you know it does with certain people, and there she was with her two boys telling me how she really wanted a third, next summer, maybe August. Did my best not to sputter at the absurdity of simply desiring a child and presto! having it happen, but let it go.
And this morning, after this conversation with Bella, I found myself walking out of the school behind this woman, talking with another mom, and suddenly heard her announce, "By the way, I'm pregnant. Eight weeks."
Yes, apparently you CAN simply desire children (live ones, duh) and they will fall into your lap like fresh fruit hanging from a tree. There are people who can casually discuss conception and pregnancy as easily as if they were ordering a latte, while some of us have discussions about baby death in the car before preschool. Everyone was right: so far, year two is worse. Much, much worse.
Monday, February 18, 2008
Day Six, Marking Time
Day Six is really just a series of small vignettes that replay in my head over and over . . . . like ESPN running the Joe Theisman injury tape in slo-mo. You want to turn away, and shut it off, and can't really, and peek through your fingers, and it's still just as gory the 81st time as the 1st seeing the bone protruding through the leg. And just when you think you're falling asleep to the image of warm, floral smelling beaches, up springs Joe, writhing around on the turf keeping you up another 45 minutes.
Where was I?
Somewhere circa 5:30-6:00 a.m. Sunday morning my watch went off, alerting me it was pumping time, and it honestly took me a few seconds to realize I was still at Children's in a chair (where someone had thoughtfully covered me with a blanket) and not lying bound in someone's car trunk. Mr. ABF woke up and headed home to be there when Bella awoke, and I headed downstairs to the cafeteria for a real cup of coffee. Enough with this pumping-martyr nonsense! Well, ok, maybe a decaf. Please, readers, go now and put a $20 in every bag you own, for you never know where you'll be craving some sort of nourishment only to face a handwritten sign announcing that the credit card machines are down. En route to the coffee aroma with my meager wadded bills I passed . . . oatmeal. I hadn't eaten oatmeal in forever, and right then I could think of nothing I wanted more. To hell with coffee. I retreated to a corner of the cafeteria with my bowl piled high with nuts, raisins and brown sugar, and ate my comfort food. And thought. And wondered how many other parents sitting in the dark morning light had experienced a night like mine. Or worse.
At some point either late Saturday or early Sunday, "the specialists" informed us that they wanted to meet early Sunday afternoon, around 1 p.m. They ushered us into the hallway next to Maddy's, brand-new, everything still covered with plastic, awaiting the onslaught of trauma. And made a circle of chairs. We sat facing two genetic specialists, one assistant, and the senior resident. Their last names were all so fantastic, I wish I could repeat them here; they sounded each one as if I was reading a playbill to a Broadway Rogers and Hammerstein revue. One told us of the ways in which Maddy's problems appeared to be metabolic. The tests they had run already, the tests they were waiting on, stuff they wanted to do. The geneticist told us the ways in which her problems appeared genetic -- maybe of the Musc.ular Dystro.phy vein (a soon to be junked avenue of thought), and so forth. Both informed us that with problems this rare and this severe, it was likely a genetic autosomal recessive problem, and Maddy was the unlucky 1:4. They spoke of wanting to know what happened to her, always couching it first and foremost in the argument "in case you want to become pregnant again." I fell out my chair and rolled on the floor in hysterics. In my head. You had to be fucking kidding me, pregnant again, after THIS? But they also pointed out that Bella might be a carrier. And her future offspring, depending on what this was exactly, might be affected. We should find out. We agreed to the skin biopsy.
When they were finished with their spiels, in sum not knowing what on earth had conspired to afflict our daughter, I asked them both, regardless of what you think it might be, what is her prognosis? And they both, separately, told us that she would die, probably within days.
I had been so level-headed and robotic through this discussion, and then I remember wanting to ask a question about the biopsy, and all that left my mouth was, "What are . . . " and I couldn't finish the sentence. I looked at Mr. ABF with my gut quickly rising into my mouth, and he turned to them and said, "what are the risks of her being put under for this procedure and dying during?" which is exactly what I wanted to ask. I have no idea how he knew I was thinking just that. I still don't.
When the experts were finished, the resident then turned and spoke to us. All I remember is her first sentence, "What I see is a little girl on a tremendous amount of support." The rest was a flood of words that fell on the floor and I couldn't distinguish one sentence from the next. But I heard her loud and clear: Maddy was currently being artificially kept alive by machines. Her body was done working.
They left us alone for a few minutes, which was the first time I realized that our nurse had actually been in there the entire time taking notes for us. She looked at us with a tear-stained face and asked if she could do anything. I can't even remember if she left us alone or not, but I remember us looking at each other and knowing instinctively, it was time. The first words out of my mouth to Mr. ABF were "I'm sorry." And I didn't mean it so much in an "it's my fault" kinda way (although I don't think a day has passed where I've wondered how this very scene could've been avoided had he married someone else), but in an "I'm so sorry you have to go through this. That you are here right now, in the midst of this hell. You deserve more." Without a word to each other, we realized Maddy was done fighting, and it was time to put an end to her horrible nightmare, now, as soon as possible. We didn't even discus the whether, we went straight to when, and how soon. Within minutes, I can't imagine it was much longer, we had assembled everyone again.
We asked when the biopsy could be done, not wanting to wait for the next crash, and they called a surgeon who was willing to come around 5 p.m. They would put her under, and then gently bring her out, and then we'd remove her support.
There was a flurry of phone calls to relatives, and I went and finally got a cup of coffee. And I sat with my cup of "who cares, you won't need to breastfeed" in the waiting room at a table and made a list. Questions on a napkin were my last ditch attempt to maintain some control over the situation, and I wanted things written down in the event I became incoherent so I could simply nod and point. Could I donate all that milk? Questions for the social worker who was called in on a Sunday afternoon: How do you tell a bright two year old that her sister is dead? I didn't know how much I should ask of the Social Worker in these cases; What would we do when we left this hospital without our daughter? How in hell could this have happened to us?
We spent the rest of the afternoon holding Maddy. They unplugged the vibrating contraption, plugged her into a normal respirator, and let us hold her. Despite the nurses kind intentions at both hosptials, due to seizures and respirators and moves and exams, we had hardly held her all week. Most first weeks are spent in a mad attempt to put the baby down; ours was spent desperately trying to pick her up. We spent the afternoon telling her, well, everything. About her ancestors. How we met. Things we did. Her sister. Her pets. We spoke with Social services, and with lactation consultants. If there's one thing Children's is well-equipped to do, it's death.
They performed the biopsy right in her area behind a screen, while I sat on the outside, the junior resident trying to draw my blood for the milk donor program. I was so dehydrated that it took her repeated jabs and at least 10 minutes to fill a tiny vial. When Maddy was done, we went and thanked her for doing that, for us, for her sister. She did fine, none of her numbers budged. They slowly brought her out, which wasn't any different to us than being under, or any different than last Tuesday really, save for a few more machines and bottles on the IV stand. She hadn't changed at all in six days -- she still had the same expression, the same calm, serene look on her face, the same color more or less, the same akimbo position; our lives, however, had turned upside down and changed on a quantum level.
We demurred bathing her, but then I started trying to gently pick off some tape stuck on her chest, and suddenly there was the nurse with a warm bowl of water, some washcloths, and soap. We declined the nicely offered but hideous pink outfit (we would've declined had it been the most charming embroidered French linen) and opted to simply swaddle her. And then they began, down the row, unplugging everything. The respirator. The IV drips. The monitors. Everything hummed to a stop, blinked dark, and grew incredibly quiet.
I held her first, and then Mr. ABF, and at the 20 minute mark the resident, crying openly, listened for a heartbeat. There was none. She called the time of death, which I honestly can't remember, but assume it was sometime around 8:30 p.m. I have no idea whether Maddy died in my arms or his. I like to think she died in both sets, for I know certainly she died within both of us.
My Dad drove us home in silence. Right before we walked in the back door he turned to us and said, "I don't know when I'll get another chance to say this, but the way you've dealt with everything this week gives me goose bumps." I said nothing and filed past him, asked the family gathered in the living room where Bella was, and headed up to her room.
I lay in the dark, in her bed, crying, looking in her sleeping face, my daughter, my only daughter. All I had left. And I feel asleep, hard asleep, on the pillow next to her.
I awoke bolt upright in the middle of the night still in Bella's bed to the sound of my watch alarm notifying me it was time to pump.
Where was I?
Somewhere circa 5:30-6:00 a.m. Sunday morning my watch went off, alerting me it was pumping time, and it honestly took me a few seconds to realize I was still at Children's in a chair (where someone had thoughtfully covered me with a blanket) and not lying bound in someone's car trunk. Mr. ABF woke up and headed home to be there when Bella awoke, and I headed downstairs to the cafeteria for a real cup of coffee. Enough with this pumping-martyr nonsense! Well, ok, maybe a decaf. Please, readers, go now and put a $20 in every bag you own, for you never know where you'll be craving some sort of nourishment only to face a handwritten sign announcing that the credit card machines are down. En route to the coffee aroma with my meager wadded bills I passed . . . oatmeal. I hadn't eaten oatmeal in forever, and right then I could think of nothing I wanted more. To hell with coffee. I retreated to a corner of the cafeteria with my bowl piled high with nuts, raisins and brown sugar, and ate my comfort food. And thought. And wondered how many other parents sitting in the dark morning light had experienced a night like mine. Or worse.
At some point either late Saturday or early Sunday, "the specialists" informed us that they wanted to meet early Sunday afternoon, around 1 p.m. They ushered us into the hallway next to Maddy's, brand-new, everything still covered with plastic, awaiting the onslaught of trauma. And made a circle of chairs. We sat facing two genetic specialists, one assistant, and the senior resident. Their last names were all so fantastic, I wish I could repeat them here; they sounded each one as if I was reading a playbill to a Broadway Rogers and Hammerstein revue. One told us of the ways in which Maddy's problems appeared to be metabolic. The tests they had run already, the tests they were waiting on, stuff they wanted to do. The geneticist told us the ways in which her problems appeared genetic -- maybe of the Musc.ular Dystro.phy vein (a soon to be junked avenue of thought), and so forth. Both informed us that with problems this rare and this severe, it was likely a genetic autosomal recessive problem, and Maddy was the unlucky 1:4. They spoke of wanting to know what happened to her, always couching it first and foremost in the argument "in case you want to become pregnant again." I fell out my chair and rolled on the floor in hysterics. In my head. You had to be fucking kidding me, pregnant again, after THIS? But they also pointed out that Bella might be a carrier. And her future offspring, depending on what this was exactly, might be affected. We should find out. We agreed to the skin biopsy.
When they were finished with their spiels, in sum not knowing what on earth had conspired to afflict our daughter, I asked them both, regardless of what you think it might be, what is her prognosis? And they both, separately, told us that she would die, probably within days.
I had been so level-headed and robotic through this discussion, and then I remember wanting to ask a question about the biopsy, and all that left my mouth was, "What are . . . " and I couldn't finish the sentence. I looked at Mr. ABF with my gut quickly rising into my mouth, and he turned to them and said, "what are the risks of her being put under for this procedure and dying during?" which is exactly what I wanted to ask. I have no idea how he knew I was thinking just that. I still don't.
When the experts were finished, the resident then turned and spoke to us. All I remember is her first sentence, "What I see is a little girl on a tremendous amount of support." The rest was a flood of words that fell on the floor and I couldn't distinguish one sentence from the next. But I heard her loud and clear: Maddy was currently being artificially kept alive by machines. Her body was done working.
They left us alone for a few minutes, which was the first time I realized that our nurse had actually been in there the entire time taking notes for us. She looked at us with a tear-stained face and asked if she could do anything. I can't even remember if she left us alone or not, but I remember us looking at each other and knowing instinctively, it was time. The first words out of my mouth to Mr. ABF were "I'm sorry." And I didn't mean it so much in an "it's my fault" kinda way (although I don't think a day has passed where I've wondered how this very scene could've been avoided had he married someone else), but in an "I'm so sorry you have to go through this. That you are here right now, in the midst of this hell. You deserve more." Without a word to each other, we realized Maddy was done fighting, and it was time to put an end to her horrible nightmare, now, as soon as possible. We didn't even discus the whether, we went straight to when, and how soon. Within minutes, I can't imagine it was much longer, we had assembled everyone again.
We asked when the biopsy could be done, not wanting to wait for the next crash, and they called a surgeon who was willing to come around 5 p.m. They would put her under, and then gently bring her out, and then we'd remove her support.
There was a flurry of phone calls to relatives, and I went and finally got a cup of coffee. And I sat with my cup of "who cares, you won't need to breastfeed" in the waiting room at a table and made a list. Questions on a napkin were my last ditch attempt to maintain some control over the situation, and I wanted things written down in the event I became incoherent so I could simply nod and point. Could I donate all that milk? Questions for the social worker who was called in on a Sunday afternoon: How do you tell a bright two year old that her sister is dead? I didn't know how much I should ask of the Social Worker in these cases; What would we do when we left this hospital without our daughter? How in hell could this have happened to us?
We spent the rest of the afternoon holding Maddy. They unplugged the vibrating contraption, plugged her into a normal respirator, and let us hold her. Despite the nurses kind intentions at both hosptials, due to seizures and respirators and moves and exams, we had hardly held her all week. Most first weeks are spent in a mad attempt to put the baby down; ours was spent desperately trying to pick her up. We spent the afternoon telling her, well, everything. About her ancestors. How we met. Things we did. Her sister. Her pets. We spoke with Social services, and with lactation consultants. If there's one thing Children's is well-equipped to do, it's death.
They performed the biopsy right in her area behind a screen, while I sat on the outside, the junior resident trying to draw my blood for the milk donor program. I was so dehydrated that it took her repeated jabs and at least 10 minutes to fill a tiny vial. When Maddy was done, we went and thanked her for doing that, for us, for her sister. She did fine, none of her numbers budged. They slowly brought her out, which wasn't any different to us than being under, or any different than last Tuesday really, save for a few more machines and bottles on the IV stand. She hadn't changed at all in six days -- she still had the same expression, the same calm, serene look on her face, the same color more or less, the same akimbo position; our lives, however, had turned upside down and changed on a quantum level.
We demurred bathing her, but then I started trying to gently pick off some tape stuck on her chest, and suddenly there was the nurse with a warm bowl of water, some washcloths, and soap. We declined the nicely offered but hideous pink outfit (we would've declined had it been the most charming embroidered French linen) and opted to simply swaddle her. And then they began, down the row, unplugging everything. The respirator. The IV drips. The monitors. Everything hummed to a stop, blinked dark, and grew incredibly quiet.
I held her first, and then Mr. ABF, and at the 20 minute mark the resident, crying openly, listened for a heartbeat. There was none. She called the time of death, which I honestly can't remember, but assume it was sometime around 8:30 p.m. I have no idea whether Maddy died in my arms or his. I like to think she died in both sets, for I know certainly she died within both of us.
My Dad drove us home in silence. Right before we walked in the back door he turned to us and said, "I don't know when I'll get another chance to say this, but the way you've dealt with everything this week gives me goose bumps." I said nothing and filed past him, asked the family gathered in the living room where Bella was, and headed up to her room.
I lay in the dark, in her bed, crying, looking in her sleeping face, my daughter, my only daughter. All I had left. And I feel asleep, hard asleep, on the pillow next to her.
I awoke bolt upright in the middle of the night still in Bella's bed to the sound of my watch alarm notifying me it was time to pump.
Sunday, February 17, 2008
Day Five, Purgatory
Seeing as I only slept minutes in-between them, and the narrative rather carried over the nighttime, days five and six blurred together. But for the sake of story-telling, I'll try and find an end to this, and a beginning to that. Hell, I hadn't slept more than 10 hours all week anyway, so the whole thing was a bit muddled, punctuated by trips home, quick naps, and the big shift to another hospital.
The thing we noticed most about Children's wasn't so much the shiny! and the modern and the tv-set appearance not to mention the flat-screen monitors (say, can we pick up a game on these?), but the confidence. The doctors at Children's were alarmingly young; young enough that sometimes you spaced out on the important things they were telling you about your child's enlarged heart while you went on this mental train of "Jesus, you don't look older than 16, but let's say you're probably 26, which was about the time I thought I should "get serious" about starting my dissertation, and Oh. My. God. I'm old and haven't done anything with my life and here you are saving babies and going on about cardiovascular stuff and I could've been your babysitter . . . " And the confidence, oh the confidence. To say they strutted is not exaggeration. They exuded confidence. It poured forth in their clearly articulated explanations, their proposals for what to do next, their prognoses. We realized that when our Dr. Frumpy walked into the old NICU we wanted to brush off that crumb on his collar and hug him. Here when a doctor walked in, the spotlight turned on, the soundtrack swelled, and you awaited awestruck for them to enter your baby's space and kick some ass.
(Don't get me wrong, they were simply lovely and nice, too. Brilliant, attractive, confident, nice. I'd fucking hate them if they weren't looking after Maddy.)
It was, of course, sad, and terrifying, and alarming, still. And they put their water/ice machine outside of security (bad planning, folks). We were in the brand new wing of the NICU, and I believe Maddy was the first occupant of her, um, cave indentation (room is a bit of a stretch), forever cursing it I'm sure. I spent all day Saturday by her bed, reading, pumping, joking with the nurses about where to find things as they were all getting used to the set-up as well. Occasionally some statesmanly specialist would walk in, surrounded by eager, uber-confident, magazine-ready glamorous underlings with notebooks, ask a million questions, and examine Maddy. There were more ultrasounds, more blood draws. My dad sat with me for most of Saturday, occasionally talking to me or the nurses. He overheard a horrible conversation in the waiting room with a couple and one set of their parents about their sick child, and the grandparent was apparently in complete denial about their child's condition. "Well, I think they can just operate on these things and everything will be fine," he'd gruffly sputter into their disbelieving faces. My dad said he felt badly for the couple, and couldn't decide whether to interfere or not.
At some point during the day, one of the genetics people explained to me that they wanted to do a skin biopsy on Maddy. This way, they could "grow" her cells whenever they damn well felt like it, and have her DNA and more right there at the ready. I suppose it sounded a bit fantastic but it also sounded a bit painful. And when your baby is lying there already hooked up to a million things and some grad-student-looking type is asking for a piece of her leg, well, I said I had to think about it. I didn't want to advance someone's killer journal article (dude) on the health of my daughter. I needed to know what this entailed, what this would tell us, how valuable and timeless it really was.
Late afternoon I said my goodbyes to Maddy as Mr. ABF took over, and went home for dinner and Bella time. At some point, about the time Bella was probably running around naked refusing to get her pajamas on, Mr. ABF called. Maddy's blood pressure was tanking, her heart rate was skitterish, and people were a bit edgy. He told me to tell my father to pass on his nightcap in the event that he might have to drive me back to Children's, tonight. I put Bella to sleep, thankfully quickly, and Mr. ABF called me back and told me I should come in. Things weren't looking good.
Within 25 minutes or so was racing through a deserted, dark hospital to Maddy's bedside. When I turned the final corner only her area was lit, and there had to be 20 people in various degrees of activity and milling, and standing grimly with arms folded across their chests. "Maddy's mom," a bunch of them whispered as I walked into the bunch and saw my daughter, looking a bit swollen, and discolored, the numbers we were told should be over x, were far, far below on the readout. Things were blinking.
A ridiculously cute Doogie Howser doctor introduced himself as the resident on call (at which point I think I spit-laughed in his face and asked for ID), and explained that things were headed downhill rapidly. And here was the kicker: that skin biopsy? The one we were thinking of? Had to be done while her heart was beating, while she was alive. So: Should we plan on this? Call in the surgeon? Oh, and while you're figuring that one out, we need to know how active you want us to be in resuscitating her. Should things really head south.
Mr. ABF and I conferenced, decided fuck, we probably should have the surgeon around, but if she goes in the meantime, she goes. So we turned to Doogie and told him, in the half-assed way that only parents can: try, but don't go crazy. Try, use medicine, but just for a few minutes, not 45. Is that too half-assed? "Not at all, it's exactly what I needed to know." And he went to work like he did this a million times a day (and he probably did). And slowly, ever so slowly, Maddy pulled back from the brink. The numbers started ticking up. Doogie started waving off medications. The surgeon was told to forget it, for now. And she plateaued, in what for her, was a reasonably good place.
But. If she was on assistance before, she was really tricked out now. Her respirator had been replaced with this vibrating breathing thing that they apparently use for babies that kind of shook her. It was awful. You know, because you read the DON'T SHAKE YOUR BABY!! pamphlets, and here were the confident people explaining that no, it wasn't THAT much, and babies actually rather find it soothing. Cue "where to put the quarter" jokes and wondering if we couldn't similarly trick out our torturous chair/beds. She was on a lot (a lot) of meds. Her IV stand was full, and looked like a Christmas tree. After days of remembering everything she was on and exactly what it did, I consciously tuned it out and just accepted the fluids running into her small body. Doogie smiled and announced that she seemed out of the woods, and you could tell he was so happy and proud that it didn't happen on his watch. Mr. ABF and I took turns reading, sitting, talking, and trying to shut our eyes in our chairs. Apparently, around 4 a.m. or so, we both drifted off.
The thing we noticed most about Children's wasn't so much the shiny! and the modern and the tv-set appearance not to mention the flat-screen monitors (say, can we pick up a game on these?), but the confidence. The doctors at Children's were alarmingly young; young enough that sometimes you spaced out on the important things they were telling you about your child's enlarged heart while you went on this mental train of "Jesus, you don't look older than 16, but let's say you're probably 26, which was about the time I thought I should "get serious" about starting my dissertation, and Oh. My. God. I'm old and haven't done anything with my life and here you are saving babies and going on about cardiovascular stuff and I could've been your babysitter . . . " And the confidence, oh the confidence. To say they strutted is not exaggeration. They exuded confidence. It poured forth in their clearly articulated explanations, their proposals for what to do next, their prognoses. We realized that when our Dr. Frumpy walked into the old NICU we wanted to brush off that crumb on his collar and hug him. Here when a doctor walked in, the spotlight turned on, the soundtrack swelled, and you awaited awestruck for them to enter your baby's space and kick some ass.
(Don't get me wrong, they were simply lovely and nice, too. Brilliant, attractive, confident, nice. I'd fucking hate them if they weren't looking after Maddy.)
It was, of course, sad, and terrifying, and alarming, still. And they put their water/ice machine outside of security (bad planning, folks). We were in the brand new wing of the NICU, and I believe Maddy was the first occupant of her, um, cave indentation (room is a bit of a stretch), forever cursing it I'm sure. I spent all day Saturday by her bed, reading, pumping, joking with the nurses about where to find things as they were all getting used to the set-up as well. Occasionally some statesmanly specialist would walk in, surrounded by eager, uber-confident, magazine-ready glamorous underlings with notebooks, ask a million questions, and examine Maddy. There were more ultrasounds, more blood draws. My dad sat with me for most of Saturday, occasionally talking to me or the nurses. He overheard a horrible conversation in the waiting room with a couple and one set of their parents about their sick child, and the grandparent was apparently in complete denial about their child's condition. "Well, I think they can just operate on these things and everything will be fine," he'd gruffly sputter into their disbelieving faces. My dad said he felt badly for the couple, and couldn't decide whether to interfere or not.
At some point during the day, one of the genetics people explained to me that they wanted to do a skin biopsy on Maddy. This way, they could "grow" her cells whenever they damn well felt like it, and have her DNA and more right there at the ready. I suppose it sounded a bit fantastic but it also sounded a bit painful. And when your baby is lying there already hooked up to a million things and some grad-student-looking type is asking for a piece of her leg, well, I said I had to think about it. I didn't want to advance someone's killer journal article (dude) on the health of my daughter. I needed to know what this entailed, what this would tell us, how valuable and timeless it really was.
Late afternoon I said my goodbyes to Maddy as Mr. ABF took over, and went home for dinner and Bella time. At some point, about the time Bella was probably running around naked refusing to get her pajamas on, Mr. ABF called. Maddy's blood pressure was tanking, her heart rate was skitterish, and people were a bit edgy. He told me to tell my father to pass on his nightcap in the event that he might have to drive me back to Children's, tonight. I put Bella to sleep, thankfully quickly, and Mr. ABF called me back and told me I should come in. Things weren't looking good.
Within 25 minutes or so was racing through a deserted, dark hospital to Maddy's bedside. When I turned the final corner only her area was lit, and there had to be 20 people in various degrees of activity and milling, and standing grimly with arms folded across their chests. "Maddy's mom," a bunch of them whispered as I walked into the bunch and saw my daughter, looking a bit swollen, and discolored, the numbers we were told should be over x, were far, far below on the readout. Things were blinking.
A ridiculously cute Doogie Howser doctor introduced himself as the resident on call (at which point I think I spit-laughed in his face and asked for ID), and explained that things were headed downhill rapidly. And here was the kicker: that skin biopsy? The one we were thinking of? Had to be done while her heart was beating, while she was alive. So: Should we plan on this? Call in the surgeon? Oh, and while you're figuring that one out, we need to know how active you want us to be in resuscitating her. Should things really head south.
Mr. ABF and I conferenced, decided fuck, we probably should have the surgeon around, but if she goes in the meantime, she goes. So we turned to Doogie and told him, in the half-assed way that only parents can: try, but don't go crazy. Try, use medicine, but just for a few minutes, not 45. Is that too half-assed? "Not at all, it's exactly what I needed to know." And he went to work like he did this a million times a day (and he probably did). And slowly, ever so slowly, Maddy pulled back from the brink. The numbers started ticking up. Doogie started waving off medications. The surgeon was told to forget it, for now. And she plateaued, in what for her, was a reasonably good place.
But. If she was on assistance before, she was really tricked out now. Her respirator had been replaced with this vibrating breathing thing that they apparently use for babies that kind of shook her. It was awful. You know, because you read the DON'T SHAKE YOUR BABY!! pamphlets, and here were the confident people explaining that no, it wasn't THAT much, and babies actually rather find it soothing. Cue "where to put the quarter" jokes and wondering if we couldn't similarly trick out our torturous chair/beds. She was on a lot (a lot) of meds. Her IV stand was full, and looked like a Christmas tree. After days of remembering everything she was on and exactly what it did, I consciously tuned it out and just accepted the fluids running into her small body. Doogie smiled and announced that she seemed out of the woods, and you could tell he was so happy and proud that it didn't happen on his watch. Mr. ABF and I took turns reading, sitting, talking, and trying to shut our eyes in our chairs. Apparently, around 4 a.m. or so, we both drifted off.
Saturday, February 16, 2008
Day Four, Moving Day
On Day Four, afternoon, Maddy was transferred to Children's. Into our rather large but in retrospect low-key NICU, embodied by our favorite Dr. Frumpy, strutted a gaggle of young, extremely attractive medical personnel decked out in matching, embroidered polar fleece pushing what appeared to be a tin foil covered microwave on wheels (the portable isolette). We stood rather amused by the whole bizarro Gray's Anatomy meets Grim Reaper scene, while I'm sure every other parent in the room swallowed their throats. Mr. ABF held Maddy, I filled out and signed a ream of legalese which I think simply gave permission to buckle Maddy in, and give her a blood transfusion should the need arise during the ambulance ride. Dr. R gave them the low-down on his most-peculiar patient. They loaded Maddy like a turkey into the oven, and wheeled her out, with us half-joking with the driver to please drive safely. (Like I'm sure he's never heard that one before.) They warned us, please, do not follow the ambulance too closely (there are probably some funny -- not ha-ha -- stories there), and we laughed and said we were going to stop at home in the interim. We peeled the pictures off her isolette, packed our books, and said our goodbyes.
That evening, Mr. ABF announced during Bella's bath that he was going to Children's to see Maddy and "get the lay of the land." I was still unable to drive (what the fuck is with that not driving for a week thing, anyway? Most inconvenient when your child is in the NICU people), and if I wanted to go, would have to get my dad or mother-in-law to drive me there after I put Bella to sleep. I was so fucking frustrated by this point at the back and forth of home and hospital that I snapped and began to cry. Mr. ABF asked if I was angry at him, and I waved my arms around the bathroom and said, "No. I'm angry at THIS."
He went. Spent most of his evening talking with suited specialists about the particulars of the pregnancy (just how long was that bleed? And she had amnio? And hello! She had a miscarriage??) and came home very late.
I had no idea how I was going to do this, live at two places, be a mom to two daughters in two places, split my time, split my emotions, remain sane, not erupt into anger at the schizophrenia of it all.
That evening, Mr. ABF announced during Bella's bath that he was going to Children's to see Maddy and "get the lay of the land." I was still unable to drive (what the fuck is with that not driving for a week thing, anyway? Most inconvenient when your child is in the NICU people), and if I wanted to go, would have to get my dad or mother-in-law to drive me there after I put Bella to sleep. I was so fucking frustrated by this point at the back and forth of home and hospital that I snapped and began to cry. Mr. ABF asked if I was angry at him, and I waved my arms around the bathroom and said, "No. I'm angry at THIS."
He went. Spent most of his evening talking with suited specialists about the particulars of the pregnancy (just how long was that bleed? And she had amnio? And hello! She had a miscarriage??) and came home very late.
I had no idea how I was going to do this, live at two places, be a mom to two daughters in two places, split my time, split my emotions, remain sane, not erupt into anger at the schizophrenia of it all.
Friday, February 15, 2008
Day Three, Reckoning
We were blessed, at Delivery Hospital, with an excellent NICU and a wonderful set of doctors and nurses. One doctor we didn't have too much contact with, but he had a rather humorous story of lying down on his side arm extended into the tube, hand-operating the bag respirator while Maddy was lying in the MRI, and having his arm fall asleep. There was the lovely doctor, who worked nights, and unfortunately for him was on when Maddy seized early in the morning on Valentine's Day. He's the one with whom I conversed, and realized, that my daughter was in fact going to die. At the end of that conversation, which was spent with him in a chair pulled up next to my bed, and me in my bed, barely covered with a hospital gown, looking like hell, he said "I'd really like to give you a hug if that's ok." And of course it was.
And then there was Dr. R. Dr. R (not his real last initial), we found out after a bit of time in the NICU, was the senior person in charge, and as such had the luxury of working days. We also found out, that he rather took charge of Maddy's case, stayed late if needed, and rushed in early if something went wrong, like on Valentine's morning. He was everything you'd expect in a storybook pediatrician -- a warm, gentle, affable man in both manner and appearance. He always looked a bit frumpy, in that endearing way that immediately put you at ease and made you want to reach out and straighten out his tie or pat down that errant piece of hair. He spoke directly, but kindly. And he became our rock, our priest, our guru, and our hero.
Day three was spent, in large part, conferring with Dr. R. By now, with the heart and blood pressure problems evident in addition to the brain and eyes, it was clear to everyone that Maddy suffered from more than a virus -- this was in all likelihood, something genetic. It was also becoming painfully clear, the realization settling in, that she would die, and probably soon. And Dr. R spent Thursday, gently telling us that Delivery Hospital did not have the means of figuring out what was or went wrong with Maddy. We were loathe to fix individual problems (her eyes, her heart) without a more comprehensive picture of all of her maladies and the overall prognosis, and he, perhaps a bit remorsefully, told us he could not provide us with that. But Children's might. He called his old mentor at children's and explained the case in person. They were willing to care of Maddy. If we were willing to let her go.
The problem now was that we had gotten used to this NICU, with it's personable nurses, and friendly doctors, and we were comfortable here. We had our chairs, our place for books, Maddy's decked out isolette, and I was rather fond of their ice and water machine. And we knew, without question, that when it was time for Maddy to go, this set of doctors and nurses knew and understood us and would let us make these decisions without pressure. Children's (completely irrationally) appeared a cold, sterile place with it's promises of experimental drugs and surgery and what if (!) they wanted to try and extend her life? What if they told us upon her arrival that what these doctors called terminal wasn't really? Would they take her quality of life into consideration, or would they be bound by the Hippocratic oath and the grant money to try try try anything? Did we even want to know what happened? What would that entail for Maddy? Would she simply become some Frankenstein-ian experiment into the neonatal unknown? We spent hours speaking with Dr. R trying desperately to understand where the Rabbit Hole might possibly lead. Mr. ABF spent his afternoon in deep discussion with Dr. R and wound up sobbing on his shoulder. I, at home by now, spent the afternoon on the phone: in-laws of in-laws who worked at Children's; former-pathologist-now-senior-drug- company-exec friend of a relative en route to Japan, who talked me through terminology and procedure, and gave me his personal cell number telling me he would pick it up no matter what was going on with him. Could anything be done? What did this move mean?
We decided, by the time we fell asleep, that we would wake up early in the morning, drive in to Dr. R., and tell him that we were ready to move her. With a big caveat: if we felt uncomfortable at Children's, could we move her back here to die? Yes, yes, a thousand times yes was his answer.
To skip ahead, the next day, Dr. R immediately got on the phone and set up transport. When the transport team arrived, he gave a verbal assessment of Maddy's brief and extraordinary history to the transport doctor. I listened in silence, so impressed with this man and his medical ability. And then at the end of this litany, he said "and finally, I'd like to tell you about the parents." He told them of our wishes for her, her continuing comfort, and our wishes for a dignified end to her life. (When we got to Children's, every conversation with a new Doctor started with, "So, I understand that you feel very strongly about Maddy's quality of life," and I know this was all in thanks to Dr. R.)
I hugged Dr. R when we left the NICU for the last time, sobbing. He remained in touch with Children's, was notified at home when Maddy died, and called us the following week. Day three was more than just the mire of medical terminology, it was deeply philosophical, and Dr. R guided us through, holding us by the hand, never wavering, with a rather dated tie.
********************************
By this point we had named Maddy. It took us a few days; we had expected a boy actually, and had to chose between our two girl finalists, and, well, we had some other pressing issues to think about. A number of people scrunched their faces at her name, asked aloud as to why there were two d's, not really fully getting that it was the Italian version of Madeline. On Day three, an older pediatric heart specialist came in to do an ultrasound of Maddy's chest. He looked at her name, turned to me, and said, "Italian?" I nodded, explaining Mr. ABF's lineage. He said that at some point in his Navy career he was stationed in the Maddalena Islands off the coast of Italy. He thought the name was beautiful.
Funny what you remember.
And then there was Dr. R. Dr. R (not his real last initial), we found out after a bit of time in the NICU, was the senior person in charge, and as such had the luxury of working days. We also found out, that he rather took charge of Maddy's case, stayed late if needed, and rushed in early if something went wrong, like on Valentine's morning. He was everything you'd expect in a storybook pediatrician -- a warm, gentle, affable man in both manner and appearance. He always looked a bit frumpy, in that endearing way that immediately put you at ease and made you want to reach out and straighten out his tie or pat down that errant piece of hair. He spoke directly, but kindly. And he became our rock, our priest, our guru, and our hero.
Day three was spent, in large part, conferring with Dr. R. By now, with the heart and blood pressure problems evident in addition to the brain and eyes, it was clear to everyone that Maddy suffered from more than a virus -- this was in all likelihood, something genetic. It was also becoming painfully clear, the realization settling in, that she would die, and probably soon. And Dr. R spent Thursday, gently telling us that Delivery Hospital did not have the means of figuring out what was or went wrong with Maddy. We were loathe to fix individual problems (her eyes, her heart) without a more comprehensive picture of all of her maladies and the overall prognosis, and he, perhaps a bit remorsefully, told us he could not provide us with that. But Children's might. He called his old mentor at children's and explained the case in person. They were willing to care of Maddy. If we were willing to let her go.
The problem now was that we had gotten used to this NICU, with it's personable nurses, and friendly doctors, and we were comfortable here. We had our chairs, our place for books, Maddy's decked out isolette, and I was rather fond of their ice and water machine. And we knew, without question, that when it was time for Maddy to go, this set of doctors and nurses knew and understood us and would let us make these decisions without pressure. Children's (completely irrationally) appeared a cold, sterile place with it's promises of experimental drugs and surgery and what if (!) they wanted to try and extend her life? What if they told us upon her arrival that what these doctors called terminal wasn't really? Would they take her quality of life into consideration, or would they be bound by the Hippocratic oath and the grant money to try try try anything? Did we even want to know what happened? What would that entail for Maddy? Would she simply become some Frankenstein-ian experiment into the neonatal unknown? We spent hours speaking with Dr. R trying desperately to understand where the Rabbit Hole might possibly lead. Mr. ABF spent his afternoon in deep discussion with Dr. R and wound up sobbing on his shoulder. I, at home by now, spent the afternoon on the phone: in-laws of in-laws who worked at Children's; former-pathologist-now-senior-drug- company-exec friend of a relative en route to Japan, who talked me through terminology and procedure, and gave me his personal cell number telling me he would pick it up no matter what was going on with him. Could anything be done? What did this move mean?
We decided, by the time we fell asleep, that we would wake up early in the morning, drive in to Dr. R., and tell him that we were ready to move her. With a big caveat: if we felt uncomfortable at Children's, could we move her back here to die? Yes, yes, a thousand times yes was his answer.
To skip ahead, the next day, Dr. R immediately got on the phone and set up transport. When the transport team arrived, he gave a verbal assessment of Maddy's brief and extraordinary history to the transport doctor. I listened in silence, so impressed with this man and his medical ability. And then at the end of this litany, he said "and finally, I'd like to tell you about the parents." He told them of our wishes for her, her continuing comfort, and our wishes for a dignified end to her life. (When we got to Children's, every conversation with a new Doctor started with, "So, I understand that you feel very strongly about Maddy's quality of life," and I know this was all in thanks to Dr. R.)
I hugged Dr. R when we left the NICU for the last time, sobbing. He remained in touch with Children's, was notified at home when Maddy died, and called us the following week. Day three was more than just the mire of medical terminology, it was deeply philosophical, and Dr. R guided us through, holding us by the hand, never wavering, with a rather dated tie.
********************************
By this point we had named Maddy. It took us a few days; we had expected a boy actually, and had to chose between our two girl finalists, and, well, we had some other pressing issues to think about. A number of people scrunched their faces at her name, asked aloud as to why there were two d's, not really fully getting that it was the Italian version of Madeline. On Day three, an older pediatric heart specialist came in to do an ultrasound of Maddy's chest. He looked at her name, turned to me, and said, "Italian?" I nodded, explaining Mr. ABF's lineage. He said that at some point in his Navy career he was stationed in the Maddalena Islands off the coast of Italy. He thought the name was beautiful.
Funny what you remember.
Thursday, February 14, 2008
Day Two, Valentine's Day
The second 24 hours, day two, were the worst. The Paradigm shifted not once, but twice, as we went to bed on the 13th with what we thought was a severely handicapped child, and woke up early on Valentine's Day to the news that our child was dying. Tomorrow would be reserved for other weighty conversations, but today, arguably the worst in the week, was a sea of tears, and disbelief, and dare I say, rays of relief that at the very least her nightmare might soon be over. I was discharged today, played with Bella in the comfort of my own home, and returned to the NICU that evening to spend the night on the most uncomfortable "bed" I've ever encountered.
**********************************
When I started writing this blog, a friend of a friend named B started reading. Her three-month old daughter K died, on Valentine's Day, almost a decade ago. It's not uncommon for me to wake up the morning after a post and find an email in my box from B. She's been a wealth of support, especially with the distance she now has from her daughter's death. I wrote her last week to tell her I would remember her and K today, and she wrote back two things I've been mulling over since. One, Valentine's actually wasn't the worst day for her either; it was the day, a week before (coincidentally, the day I sent the email), when they found out about the cancer. I guess for some of us the actual death is peaceful relief of the pain inflicted earlier; the moment of discovery that your child will die becomes the nadir from which everything, including breath stopping, flows forward. And two, she reminded me that by remembering her, I am in fact forwarding the gift bestowed on me by this awful experience: if there is anything we as mourning parents do, it is that we now have the capacity to remember others. It's a lousy silver lining, to be invested with this sad rite. And I thought of this image of all of us, as pavers in a road, each quietly taking their place, thankful that the previous pavers have already laid out the path and tamped the ground for our block. And we fall into place, on this road, awaiting the next set of pavers ahead of us. We support each other, hold each other in place, but perhaps most importantly, we are the ones invested in remembering each other's children. It's awful this path that simply keeps extending on into the horizon, but look backwards, and you'll see the path, overgrown in places, disappear into the distance behind you, too. B, thanks for breaking my fall, showing me the way, and reminding me that what I now do for others is in fact a grim positive change resulting from Maddy's death.
B, and K, I'm thinking of you both today.
**********************************
When I started writing this blog, a friend of a friend named B started reading. Her three-month old daughter K died, on Valentine's Day, almost a decade ago. It's not uncommon for me to wake up the morning after a post and find an email in my box from B. She's been a wealth of support, especially with the distance she now has from her daughter's death. I wrote her last week to tell her I would remember her and K today, and she wrote back two things I've been mulling over since. One, Valentine's actually wasn't the worst day for her either; it was the day, a week before (coincidentally, the day I sent the email), when they found out about the cancer. I guess for some of us the actual death is peaceful relief of the pain inflicted earlier; the moment of discovery that your child will die becomes the nadir from which everything, including breath stopping, flows forward. And two, she reminded me that by remembering her, I am in fact forwarding the gift bestowed on me by this awful experience: if there is anything we as mourning parents do, it is that we now have the capacity to remember others. It's a lousy silver lining, to be invested with this sad rite. And I thought of this image of all of us, as pavers in a road, each quietly taking their place, thankful that the previous pavers have already laid out the path and tamped the ground for our block. And we fall into place, on this road, awaiting the next set of pavers ahead of us. We support each other, hold each other in place, but perhaps most importantly, we are the ones invested in remembering each other's children. It's awful this path that simply keeps extending on into the horizon, but look backwards, and you'll see the path, overgrown in places, disappear into the distance behind you, too. B, thanks for breaking my fall, showing me the way, and reminding me that what I now do for others is in fact a grim positive change resulting from Maddy's death.
B, and K, I'm thinking of you both today.
Wednesday, February 13, 2008
Day One
Thanks for all the kinds words of memory and support. They mean so much.
Day one with Maddy, the first 24 hours, were mostly spent on a runaway train headed south, taking in a mountain of medical suspicions while waiting for "the expert" to come give us the supremely bad news about her CAT scan. That conversation happened right around her 24 hour mark. In the meantime, we sat with her, took in the information that her corneas were clouded over, that the cute cross-legged thing she was doing was actually a sign of nervous system damage, that unbelievably, this perfect looking child hosted a slew of irreparable problems. Because they didn't know exactly the extent of her issues, the reigning theory during the first 24 was that this was all due an infection in utero. I was quizzed every time I set foot in the NICU, "did you ever have a fever during your pregnancy? feel badly? sneeze? YOU HAVE CATS???!!!" and on and on with the guilt. I never felt so guilty in my life, the doctors apparently not realizing that simple sentences like "what seems to be a common cold for you can really be lethal to your baby" while glancing askance at the huddled motionless mass that was my daughter are not what a mother needs to hear in those situations. My blood was drawn for a host of infections, from the mundane to the odd, as was hers. By tomorrow it would be moot.
Day one with Maddy, the first 24 hours, were mostly spent on a runaway train headed south, taking in a mountain of medical suspicions while waiting for "the expert" to come give us the supremely bad news about her CAT scan. That conversation happened right around her 24 hour mark. In the meantime, we sat with her, took in the information that her corneas were clouded over, that the cute cross-legged thing she was doing was actually a sign of nervous system damage, that unbelievably, this perfect looking child hosted a slew of irreparable problems. Because they didn't know exactly the extent of her issues, the reigning theory during the first 24 was that this was all due an infection in utero. I was quizzed every time I set foot in the NICU, "did you ever have a fever during your pregnancy? feel badly? sneeze? YOU HAVE CATS???!!!" and on and on with the guilt. I never felt so guilty in my life, the doctors apparently not realizing that simple sentences like "what seems to be a common cold for you can really be lethal to your baby" while glancing askance at the huddled motionless mass that was my daughter are not what a mother needs to hear in those situations. My blood was drawn for a host of infections, from the mundane to the odd, as was hers. By tomorrow it would be moot.
Tuesday, February 12, 2008
Birth Day
Maddy's birth could not have been more uneventful. Compared to her sister, who was a 24 hr. saga -- involving a harried trip to the hospital interrupted by a family of geese crossing the street, my water breaking without my knowledge, and ending with a torn rectal muscle as they suctioned her out while trying to avoid a c-section -- this was nary a blip on the radar. Went in for an induction, water broken at 1 p.m., Maddy born at 4:45 p.m. after 20 minutes of pushing. It was also uneventful emotionally; were Maddy to have lived I would not be prancing around bragging about "shooting out" my second child (it was birth, after all, and rather uncomfortable). After years of infertility, a miscarriage, and a live daughter, the actual labor and delivery for me is simply a means to an end. I am not one to wax philosophical about the transformative female power of labor, or any womanly catharsis that takes place as a child exits the body -- I just wanted it, all of it, over. I wanted the stressful pregnancy over, the surprise as to whether she was male or female over, the 5+ year struggle to have a family, over. I believe my "birth plan" as it was for both daughters read: "Please, kindly, deliver child alive by any method necessary (oh, and if I could make it through alive? That would be nice too)."
Right when she was born, there was the sound of a gasp, and then the NICU team (assembled for safety's sake as she was a week overdue) rushed her over to a table and began clearing her lungs, everyone assuming she simply gulped a mouthful of meconium upon entry into the world. Her APGARs, given what unfolded, were startlingly good -- 7/8 if I remember correctly. There was no crying. Well, except mine. I was so relieved. And happy. I think I secretly had wanted a girl, never fully admitting that to anyone least of all myself. And here I was, finally, at the end of a journey and an extraordinarily long pregnancy: a beautiful family of four, with two girls.
This twenty minutes, the last twenty minutes of my old life, were sheer bliss. I thought of it all, pondered the infinite possibilities, and held my beautiful, quiet daughter, whose eyes were closed (but no one seemed to find that at all troubling), and held her hands and feet, and traced the shape of her nose (mine), and marveled in her.
And then they took her away, for observation, just to be safe.
Given what I now know of so many of your experiences, of deliveries of babies already dead (and may I just say those that have done this? You deserve a national holiday, a postage stamp, and some money bearing your image. I am in awe of your courage), silent delivery rooms, the joy already evaporated from the moment, I should be grateful. I should be thankful that my last few moments were happy, were perfect, were nirvana.
And yet, it simply makes me all the more angry. I feel as though someone opened the door, showed me utopia, with its lush green meadows and blue skies and singing birds, then laughed cruelly while slamming the door in my face, leaving me flailing in darkness, and then pushed me down fifty flights of stairs. This moment haunts me. How could I have not known? How could I have been so remarkably naive? I feel like a chump on the world's biggest stage, buying into the miracle that wasn't.
I want today, to honor Maddy's birth. To get her flowers, and light a candle at 4:45. I also wanted, somehow, to let the universe know how wildly incredibly angry I am at it. I'm not an eye-for-an-eye kind of person, and yet I wish I knew a way to hurt back. Spray aerosol in my front yard? Not recycle for a day? Cut down a tree? I would love to walk out of a church, and have the doors slam shut behind me, but seeing as I never walked into one in the first place, the drama would probably be lost. I suppose I could burn an image of the double helix in effigy. I have, somewhere, pictures of me and Maddy in the delivery room, during these twenty minutes of bliss. I haven't looked at them to date, nor can I. They are a lie. They simply mock me. Torture me. They represent to me all that is cruel and horrible in the universe, everything unsaid, everything unspeakable. That I could be smiling and she could be devoid of wires and beautiful and breathing is pure fabrication.
So today, I'll just remember it all, the beauty, the relief, the untruths, and the hurtful push down the stairs that followed. I now know that whatever Maddy and her body could possibly have felt or sensed, that these moments, for her, these moments were cruel too. They were a struggle, an unpleasant surprise, a fight to the death. Her body was now devoid of that which kept it alive, and it was falling down the stairs right next to me. I'm so sorry Maddy, for not knowing, for making you fight, in order that I might believe just a few more minutes. You were stunningly beautiful, and I miss you so, so much.
Right when she was born, there was the sound of a gasp, and then the NICU team (assembled for safety's sake as she was a week overdue) rushed her over to a table and began clearing her lungs, everyone assuming she simply gulped a mouthful of meconium upon entry into the world. Her APGARs, given what unfolded, were startlingly good -- 7/8 if I remember correctly. There was no crying. Well, except mine. I was so relieved. And happy. I think I secretly had wanted a girl, never fully admitting that to anyone least of all myself. And here I was, finally, at the end of a journey and an extraordinarily long pregnancy: a beautiful family of four, with two girls.
This twenty minutes, the last twenty minutes of my old life, were sheer bliss. I thought of it all, pondered the infinite possibilities, and held my beautiful, quiet daughter, whose eyes were closed (but no one seemed to find that at all troubling), and held her hands and feet, and traced the shape of her nose (mine), and marveled in her.
And then they took her away, for observation, just to be safe.
Given what I now know of so many of your experiences, of deliveries of babies already dead (and may I just say those that have done this? You deserve a national holiday, a postage stamp, and some money bearing your image. I am in awe of your courage), silent delivery rooms, the joy already evaporated from the moment, I should be grateful. I should be thankful that my last few moments were happy, were perfect, were nirvana.
And yet, it simply makes me all the more angry. I feel as though someone opened the door, showed me utopia, with its lush green meadows and blue skies and singing birds, then laughed cruelly while slamming the door in my face, leaving me flailing in darkness, and then pushed me down fifty flights of stairs. This moment haunts me. How could I have not known? How could I have been so remarkably naive? I feel like a chump on the world's biggest stage, buying into the miracle that wasn't.
I want today, to honor Maddy's birth. To get her flowers, and light a candle at 4:45. I also wanted, somehow, to let the universe know how wildly incredibly angry I am at it. I'm not an eye-for-an-eye kind of person, and yet I wish I knew a way to hurt back. Spray aerosol in my front yard? Not recycle for a day? Cut down a tree? I would love to walk out of a church, and have the doors slam shut behind me, but seeing as I never walked into one in the first place, the drama would probably be lost. I suppose I could burn an image of the double helix in effigy. I have, somewhere, pictures of me and Maddy in the delivery room, during these twenty minutes of bliss. I haven't looked at them to date, nor can I. They are a lie. They simply mock me. Torture me. They represent to me all that is cruel and horrible in the universe, everything unsaid, everything unspeakable. That I could be smiling and she could be devoid of wires and beautiful and breathing is pure fabrication.
So today, I'll just remember it all, the beauty, the relief, the untruths, and the hurtful push down the stairs that followed. I now know that whatever Maddy and her body could possibly have felt or sensed, that these moments, for her, these moments were cruel too. They were a struggle, an unpleasant surprise, a fight to the death. Her body was now devoid of that which kept it alive, and it was falling down the stairs right next to me. I'm so sorry Maddy, for not knowing, for making you fight, in order that I might believe just a few more minutes. You were stunningly beautiful, and I miss you so, so much.
Saturday, February 9, 2008
Olio
Grazie, Niobe, for my capital letter "E."
The way these work by the time I get something everyone else has already got it (typical, I got chicken pox in seventh grade), so I'm going to go nuts here and reach outside the grief box and plop it over in the IF column and give it to Ahuva Batya at The Anguished Corn. I'm so glad Mel at Stirrup Queens pointed her out -- she's a freakin' good writer, funny, poignant, and introspective. Plus: she runs, has dogs, likes wine, and daily shoe zen? Rocks. Check it out if you haven't already. (Plus, she's just getting going on IVF #1, so wish her well while you're there.) (And do all the cool bloggers live in the MN environs?)
*****************************
(Pardon the bigness of the "E", I'm normally not that ostentatious. Blogger image is a bit wiggy lately, and is anyone else mortally hurt by the loss of spell check? I haven't used a dictionary this much since third grade.)
*****************************
I feel as though I have nothing to say, and yet am anticipating having an awful lot to say next week. I lived in Germany for a year back when I was 6/7 years old, and remember going to my classmates' birthday parties and noticing the children -- in addition to their presents -- bearing flowers for the birthday child's mom. I've always loved this tradition of honoring the mother on the child's birthday, sort of a way of saying thank you for bringing this soul into the world, and, not unimportantly, thank you for all of your hard work getting them to this point. I have on occasion, for friend's kid's first birthdays, just sent the mom flowers figuring the kid was probably overwhelmed with Fisher Price goodness anyways. I thought I might get some flowers for Maddy, but decided that they would be for me as well. I was never thanked for going through 9 months of a rocky pregnancy, for laboring, and for bringing a terminal child into the world. I feel my first year without Maddy has been eons harder than it would've been with. I also feel as though I've done ok by her, expressing how much I miss her, how much I love her. And so, before I chickened out totally, I ordered flowers that we'll receive on Tuesday.
That's all I've done to prepare. Other than clench my jaw. Now I just need to hold my nose, jump in, and get to the other side.
The way these work by the time I get something everyone else has already got it (typical, I got chicken pox in seventh grade), so I'm going to go nuts here and reach outside the grief box and plop it over in the IF column and give it to Ahuva Batya at The Anguished Corn. I'm so glad Mel at Stirrup Queens pointed her out -- she's a freakin' good writer, funny, poignant, and introspective. Plus: she runs, has dogs, likes wine, and daily shoe zen? Rocks. Check it out if you haven't already. (Plus, she's just getting going on IVF #1, so wish her well while you're there.) (And do all the cool bloggers live in the MN environs?)
*****************************
(Pardon the bigness of the "E", I'm normally not that ostentatious. Blogger image is a bit wiggy lately, and is anyone else mortally hurt by the loss of spell check? I haven't used a dictionary this much since third grade.)
*****************************
I feel as though I have nothing to say, and yet am anticipating having an awful lot to say next week. I lived in Germany for a year back when I was 6/7 years old, and remember going to my classmates' birthday parties and noticing the children -- in addition to their presents -- bearing flowers for the birthday child's mom. I've always loved this tradition of honoring the mother on the child's birthday, sort of a way of saying thank you for bringing this soul into the world, and, not unimportantly, thank you for all of your hard work getting them to this point. I have on occasion, for friend's kid's first birthdays, just sent the mom flowers figuring the kid was probably overwhelmed with Fisher Price goodness anyways. I thought I might get some flowers for Maddy, but decided that they would be for me as well. I was never thanked for going through 9 months of a rocky pregnancy, for laboring, and for bringing a terminal child into the world. I feel my first year without Maddy has been eons harder than it would've been with. I also feel as though I've done ok by her, expressing how much I miss her, how much I love her. And so, before I chickened out totally, I ordered flowers that we'll receive on Tuesday.
That's all I've done to prepare. Other than clench my jaw. Now I just need to hold my nose, jump in, and get to the other side.
Thursday, February 7, 2008
Wah?
Thanks to Niobe and the previously's, I will attempt the 10 things "I Don't Get" meme. And by "attempt" I mean I will try and limit myself to only 10, and will exclude anything having to do with the current election cycle (well, almost) which will only incense my lovely readers.
I DON'T GET:
1. Literalists. As in the Bible, the Constitution, Adam Smith. Really? I mean, if you sit down with yourself, deep deep inside, you think every fucking little word is true? You think it applies equally to now as it did then? And conversely, that you can't apply the message to now as you couldn't then? I just don't think this gives the authors as much credit as they deserve, nor do I think it gives your brain as much credit as it may deserve.
2. Golf. If Tiger Woods had to hit the ball in the cup by avoiding the windmill AND getting tackled by three guys who weigh around 300 pounds, I might be interested.
3. Small Dogs. Of the "Toy" Breed varieties: Chihuahuas, terriers that weigh under 10 pounds, Pomeranians. There's a fine line between dog and rodent, and these cross it.
4. Wax Paper. Parchment? That I get. Wax? Not so much. Please inform.
5. Tom Hanks Lurve.
6. Uggs. (Caveat: if you live in Siberia or extreme polar climates, I totally get the need for enormous warm boots that go up to your knees. If you don't, I don't.)
7. Coin purses.
8. Caffeine Free Diet Coke.
9. Mark Rothko (but in a good way). (I think.)
10. Celebrity political endorsements.
I DON'T GET:
1. Literalists. As in the Bible, the Constitution, Adam Smith. Really? I mean, if you sit down with yourself, deep deep inside, you think every fucking little word is true? You think it applies equally to now as it did then? And conversely, that you can't apply the message to now as you couldn't then? I just don't think this gives the authors as much credit as they deserve, nor do I think it gives your brain as much credit as it may deserve.
2. Golf. If Tiger Woods had to hit the ball in the cup by avoiding the windmill AND getting tackled by three guys who weigh around 300 pounds, I might be interested.
3. Small Dogs. Of the "Toy" Breed varieties: Chihuahuas, terriers that weigh under 10 pounds, Pomeranians. There's a fine line between dog and rodent, and these cross it.
4. Wax Paper. Parchment? That I get. Wax? Not so much. Please inform.
5. Tom Hanks Lurve.
6. Uggs. (Caveat: if you live in Siberia or extreme polar climates, I totally get the need for enormous warm boots that go up to your knees. If you don't, I don't.)
7. Coin purses.
8. Caffeine Free Diet Coke.
9. Mark Rothko (but in a good way). (I think.)
10. Celebrity political endorsements.
Tuesday, February 5, 2008
Contents Under Pressure
Every so often I get an ache in my cheek, spit out that stale candy cane I've been sucking on, and wildly begin chanting anti-root canal incantations. And then I realize, I'm clenching my jaw. And have been for days. About the same time, I may also notice that my breath is a bit jagged. And I collapse in a puddle of exhaustion around 4 p.m. At which point I think to the self, "Dude, you're TENSE." Big surprise, the teeth clenching usually coincides with some sort of trigger like a -versary, -iday, -thday, or just sensory relapse -- like going to a museum the other day for a birthday and realizing, really upon walking in, that the last time I was there was almost exactly a year ago to the day. Three hours of screaming, hopped-up-on-sugar toddlers later did not improve the psychological gymnastics of "I remember sitting down here to rest," or watching other moms sling young babies around while watching their older children throw play bread loaves across the room.
I hit that place this morning, in yoga (I finally started up again about a month ago), with the achy face, and having trouble exhaling for more than 2 counts without feeling like I was hyperventilating. They say you hold a lot of tension in your hips, and I did a forward bend and for the first time in my life, felt actual pain in my hip points.
I'm a wee bit tense. Really wound up. And I think it's that god-awful anticipatory nervousness as I do the slow crawl toward next week.
Usually the anticipation is worse than the day. I know in my head it really can't be worse -- she's already dead for pete's sake. But I've been proven wrong. And since I have six days to muddle through and family dra-ma that could go off like a tinderbox at any moment, I'm really not horribly optimistic that I can improvise my way through a 144 hour remembrance odyssey involving flowers and candlelight and walks in parks and "just being with it" without someone raining on my shit parade. In addition to thinking I'll probably be curled up in a ball missing my younger daughter, I'm anticipating inappropriate and passive-aggressive Valentine's Day's cards and gifts from in-laws. Well-meaning, but intrusive phone calls. Some stranger making a completely inane comment at the worst possible moment. I'm trying desperately not to get ahead of myself or fill up the brain with things that haven't happened and may never come to pass, but, well, let's just say if I was setting up an office pool I'd be putting good money on some really crazy crap going down. Just sayin'.
For about six weeks last spring I attended a grief support group at Children's Hospital. (Oddly, they do not have a running support group, but only hold it occasionally, and only for six weeks. Something about "we've been doing this for years, and we can tell you that . . ." ) It started off rather crowded with about 20, and we gradually whittled down to a rather tight group of six or so -- six children lost, that is. Sometimes couples came, sometimes just one parent. There were weeks when I felt I had nothing in common with them; their children had died at 2, 3, 12, 18 . . . and while I felt their losses deeply, I couldn't help but feel a little stab when someone would say "I'll never see him graduate." (Honey, I didn't see my kid graduate from the NICU, let alone open her fucking eyes.) But gradually, slowly, all losses blended together for me. There was just too much in common between us. The elephant in the room. The agony of holidays. The loss in faith in just about everything given that OUR kids were the ones with the bad odds -- the one in a millions who got rare forms of cancer and bizarre genetics. We cried a lot. One evening we just went around the room and shared the "end" stories -- the final time with our children.
Of the parents, I had suffered the most recent loss, but only by a matter of months. But there were parents I grew very fond of whose losses dated back years. And they said, to a one, unanimously, without equivocation, that the second year was worse than the first.
I would sit there, my eyes bloodshot from sobbing, not having slept well in months, feeling like someone had thrown me against a wall, and thought, you have to be fucking kidding me -- it gets WORSE? THAN THIS?? THIS RIGHT HERE? Are you remembering correctly? Look at me! Worse?? (And can I be excused to go pitch myself out a window?)
They would sigh (you could almost hear the "ahh, young grasshopper" under the pursed, grim smile) and proceed to try and inform me of why. It was hard for them to explain, but basically the upshot was: the first year they were stunned. Numb. Forcing their way through the horrible series of "firsts." And the second year, the numbness wore off, the adrenaline stopped, and the ache set in. The reality. They got beyond simply dealing with the death, and started dealing with the living along with the missing. The realization that it's more than just the first, it's the second, fifth, and twentieth, too.
Well THAT'S something to look forward to, eh?
I know people are different, experiences are different, there are probably a bazillion support groups out there where the unanimous decision was "I definitely felt better the second year. Totally. Ya'll are in for a world of improvement. Cookie, anyone?" But I appreciated the honesty, and the warning, just in case they're all right. After a year the functioning is indeed easier. (Well, except the walking and running part. You'd think I could operate upright, fucking plantar fascia.) Taste and Joy are still on hiatus. But I guess now, once I turn this bend, I focus in earnest on the awful part. And try and incorporate that into the functioning part in a way that saves me gnashing my teeth down to little stubs.
I hit that place this morning, in yoga (I finally started up again about a month ago), with the achy face, and having trouble exhaling for more than 2 counts without feeling like I was hyperventilating. They say you hold a lot of tension in your hips, and I did a forward bend and for the first time in my life, felt actual pain in my hip points.
I'm a wee bit tense. Really wound up. And I think it's that god-awful anticipatory nervousness as I do the slow crawl toward next week.
Usually the anticipation is worse than the day. I know in my head it really can't be worse -- she's already dead for pete's sake. But I've been proven wrong. And since I have six days to muddle through and family dra-ma that could go off like a tinderbox at any moment, I'm really not horribly optimistic that I can improvise my way through a 144 hour remembrance odyssey involving flowers and candlelight and walks in parks and "just being with it" without someone raining on my shit parade. In addition to thinking I'll probably be curled up in a ball missing my younger daughter, I'm anticipating inappropriate and passive-aggressive Valentine's Day's cards and gifts from in-laws. Well-meaning, but intrusive phone calls. Some stranger making a completely inane comment at the worst possible moment. I'm trying desperately not to get ahead of myself or fill up the brain with things that haven't happened and may never come to pass, but, well, let's just say if I was setting up an office pool I'd be putting good money on some really crazy crap going down. Just sayin'.
For about six weeks last spring I attended a grief support group at Children's Hospital. (Oddly, they do not have a running support group, but only hold it occasionally, and only for six weeks. Something about "we've been doing this for years, and we can tell you that . . ." ) It started off rather crowded with about 20, and we gradually whittled down to a rather tight group of six or so -- six children lost, that is. Sometimes couples came, sometimes just one parent. There were weeks when I felt I had nothing in common with them; their children had died at 2, 3, 12, 18 . . . and while I felt their losses deeply, I couldn't help but feel a little stab when someone would say "I'll never see him graduate." (Honey, I didn't see my kid graduate from the NICU, let alone open her fucking eyes.) But gradually, slowly, all losses blended together for me. There was just too much in common between us. The elephant in the room. The agony of holidays. The loss in faith in just about everything given that OUR kids were the ones with the bad odds -- the one in a millions who got rare forms of cancer and bizarre genetics. We cried a lot. One evening we just went around the room and shared the "end" stories -- the final time with our children.
Of the parents, I had suffered the most recent loss, but only by a matter of months. But there were parents I grew very fond of whose losses dated back years. And they said, to a one, unanimously, without equivocation, that the second year was worse than the first.
I would sit there, my eyes bloodshot from sobbing, not having slept well in months, feeling like someone had thrown me against a wall, and thought, you have to be fucking kidding me -- it gets WORSE? THAN THIS?? THIS RIGHT HERE? Are you remembering correctly? Look at me! Worse?? (And can I be excused to go pitch myself out a window?)
They would sigh (you could almost hear the "ahh, young grasshopper" under the pursed, grim smile) and proceed to try and inform me of why. It was hard for them to explain, but basically the upshot was: the first year they were stunned. Numb. Forcing their way through the horrible series of "firsts." And the second year, the numbness wore off, the adrenaline stopped, and the ache set in. The reality. They got beyond simply dealing with the death, and started dealing with the living along with the missing. The realization that it's more than just the first, it's the second, fifth, and twentieth, too.
Well THAT'S something to look forward to, eh?
I know people are different, experiences are different, there are probably a bazillion support groups out there where the unanimous decision was "I definitely felt better the second year. Totally. Ya'll are in for a world of improvement. Cookie, anyone?" But I appreciated the honesty, and the warning, just in case they're all right. After a year the functioning is indeed easier. (Well, except the walking and running part. You'd think I could operate upright, fucking plantar fascia.) Taste and Joy are still on hiatus. But I guess now, once I turn this bend, I focus in earnest on the awful part. And try and incorporate that into the functioning part in a way that saves me gnashing my teeth down to little stubs.
Friday, February 1, 2008
An Anti-Babies Bitch
Last year's Mar.ch of Dim.es walk came and went while I was still in an incomprehensible fog. I wanted to do something, but this was too much for just a few brief weeks after the death of my daughter. I went to the website frequently searching for, well, anything. They seemed like a great cause to get behind: We're against babies having health problems and dying. Who can't get behind that? There were helpful links on genetic problems, if you had no idea what a genetic problem was. It was easy on the sidebar on the front page to navigate your way through to explaining problems, specifics on genetics and even grief. I had told Mr. ABF that I wanted to walk this year, for Maddy. Maybe get brave and make shirts. I wanted Bella to see what it was like to be among people who had survived loss, survived perfectly, and survived with problems. I feel we now straddle all of these categories, and I want her and us to embrace the beauty of it all. I wanted my money to go toward research in prenatal testing so maybe someday people like us could know that their babies wouldn't live on the outside. Maybe someday, when we eat through tubes and fly around in our space cruisers, they could fix these issues on the inside. Or before you even got started.
I knew then that their focus was premature birth and complications. Believe me, walking around a NICU for a week, that's pretty much all you see -- very tiny babies struggling for life, trying to breathe, trying to gain weight. Maddy was the giant in the room, ironically worse off than the baby measured in ounces who shared her space. And I have no problem marching for this either. Especially now, having met so many of you who have lost babies born too early, apparently for no reason. I want to do anything I can to stop this. Too many deadbabies? Bad. Please take my money while I lace up my shoes.
So I clicked over to the MoD site to get the dates and figure out what I needed to do, and lo, they've revamped everything. (I know my memory is shit, but for some reason I don't remember the site being quite so, um, annoying? I do not remember "Birth Defects and Genetics" falling under the "Pregnancy and Newborn" category, replete with a smiling family of three splashed across the top of the page, for example.) The marketing geniuses ran a study and determined that not enough people knew what the MoD was or did. They realized that people were donating and (get this) even marching with office mates and family while completely clueless as to why they they were throwing out money and wasting a Saturday morning walking around downtown. The stats were nuts -- 85% of people surveyed had a positive view of MoD, while only 45% had a modicum of a clue as to what MoD did.
And so they changed things. When I thought about MoD I guess I always thought "birth defects," and I guess if you pressed me ever so gently, I'd concur that being born at 26 weeks for no reason at all leaves one with some fairly serious defects. But I felt, with my full-term baby and sloppy genetics, included in this banner and I guess I felt they cared about people like me too. The march is now called "The Mar.ch for Babi.es." Which, I must say, hits me hard. I'm marching for a DEAD BABY. I'm marching for NO MORE DEAD BABIES. And I suppose you're waving at me frantically, but tash, you're marching for a double negative! When you scratch that all out, aren't you really FOR BABIES? Ah, but I can see the chipper signs with the healthy cherubs now (well, in fact, they're all over the website for the walk) -- THIS is why we're marching people, so you can have one of THESE.
I can't have one of those.
At least, not for the reasons you're now espousing in earnest on your website and in your marketing materials. The widgets they've created for you to put up on your blog, in the event you want to, oh, raise money for this organization by announcing that you're walking, say "Tips for Pregnancy." (Is it that tough to make an "in memory" sort of widget? Maybe with some tips on grief? I have a few family members who might find that sort of thing useful.) People at MoD, I'm here to tell you that in the circles I run among, no amount of water drinking, exercise, sleep, and abstention from booze, tobacco, lemon stilton, mercury/PCB laden-fish, and cleaning the cat box is going to help carry a healthy pregnancy to term. (Today's "Tip of Day" directs you to a picture of (vomit rising underneath my psychotic laughter) a pregnant belly with a bow around it and the advice that you should look into the effects of drug and drug-free labor. I'll get right on that. Right after I, um, get pregnant again (relapse of psychotic laughter) and am guaranteed a LIVE BABY at the end of labor. The downsides of epidurals are the least of my problems, to put it mildly.) Unless your "tips" include "Use your Ouija board to determine whether your genes will align correctly this month" or "read up on how many complications there are for which we have no testing to determine -- go ahead, scare the crap outta yourself," I'm not horribly interested.
The one marketing video I clicked on involved some celebrity I had no knowledge of, poking away tears with her manicured nails while relating the story of her son's premature birth, followed by hazy happy video of said son, all smiley and ALIVE. And them marching. Because we're for babies, people. How can you not be for babies?
I feel, probably wrongly in my current state, that they've cut me out. That instead of marching for a child who died due to a genetic problem for which there is not only no cure but no means of detection prior to birth, I'm marching for people who live under rocks and don't know that smoking is bad for you while pregnant. Believe me, I'm all for public service (Don't drink and drive! Only you can prevent forest fires!), but this is one area where it's probably best not to inject my cynicism and snark. I know a good number of you out there find this a very appropriate and sympathetic charity, and I'm not judging you here. I'm probably just flailing about, trying to find something to piss me off. I'm fairly confident not too many other people feel the way I do, and will still march and raise money this year, like they have in the past, and that it will all be good, regardless. I am, I admit, the double-entendre bitch. I'm not sure whether to collect my thoughts and write someone in the marketing department, or say something on their new blog (I'll be sure to notify you so can pop over and bring marshmallows for the flamage that will undoubtedly ensue). (Perhaps you should go find your bag right now, because it may be taking place while you type, right here.) Or to suck it up and march for my dead kid anyway. Or to find another charity, who makes less of the lovely live baby sucking his toes at the top of the page and realizes that we still have a ways to go if we're really really really going to stem the tide of grief-stricken parents. Miles beyond "eat vegetables, set down that Chardonnay, and use a seatbelt!"
I knew then that their focus was premature birth and complications. Believe me, walking around a NICU for a week, that's pretty much all you see -- very tiny babies struggling for life, trying to breathe, trying to gain weight. Maddy was the giant in the room, ironically worse off than the baby measured in ounces who shared her space. And I have no problem marching for this either. Especially now, having met so many of you who have lost babies born too early, apparently for no reason. I want to do anything I can to stop this. Too many deadbabies? Bad. Please take my money while I lace up my shoes.
So I clicked over to the MoD site to get the dates and figure out what I needed to do, and lo, they've revamped everything. (I know my memory is shit, but for some reason I don't remember the site being quite so, um, annoying? I do not remember "Birth Defects and Genetics" falling under the "Pregnancy and Newborn" category, replete with a smiling family of three splashed across the top of the page, for example.) The marketing geniuses ran a study and determined that not enough people knew what the MoD was or did. They realized that people were donating and (get this) even marching with office mates and family while completely clueless as to why they they were throwing out money and wasting a Saturday morning walking around downtown. The stats were nuts -- 85% of people surveyed had a positive view of MoD, while only 45% had a modicum of a clue as to what MoD did.
And so they changed things. When I thought about MoD I guess I always thought "birth defects," and I guess if you pressed me ever so gently, I'd concur that being born at 26 weeks for no reason at all leaves one with some fairly serious defects. But I felt, with my full-term baby and sloppy genetics, included in this banner and I guess I felt they cared about people like me too. The march is now called "The Mar.ch for Babi.es." Which, I must say, hits me hard. I'm marching for a DEAD BABY. I'm marching for NO MORE DEAD BABIES. And I suppose you're waving at me frantically, but tash, you're marching for a double negative! When you scratch that all out, aren't you really FOR BABIES? Ah, but I can see the chipper signs with the healthy cherubs now (well, in fact, they're all over the website for the walk) -- THIS is why we're marching people, so you can have one of THESE.
I can't have one of those.
At least, not for the reasons you're now espousing in earnest on your website and in your marketing materials. The widgets they've created for you to put up on your blog, in the event you want to, oh, raise money for this organization by announcing that you're walking, say "Tips for Pregnancy." (Is it that tough to make an "in memory" sort of widget? Maybe with some tips on grief? I have a few family members who might find that sort of thing useful.) People at MoD, I'm here to tell you that in the circles I run among, no amount of water drinking, exercise, sleep, and abstention from booze, tobacco, lemon stilton, mercury/PCB laden-fish, and cleaning the cat box is going to help carry a healthy pregnancy to term. (Today's "Tip of Day" directs you to a picture of (vomit rising underneath my psychotic laughter) a pregnant belly with a bow around it and the advice that you should look into the effects of drug and drug-free labor. I'll get right on that. Right after I, um, get pregnant again (relapse of psychotic laughter) and am guaranteed a LIVE BABY at the end of labor. The downsides of epidurals are the least of my problems, to put it mildly.) Unless your "tips" include "Use your Ouija board to determine whether your genes will align correctly this month" or "read up on how many complications there are for which we have no testing to determine -- go ahead, scare the crap outta yourself," I'm not horribly interested.
The one marketing video I clicked on involved some celebrity I had no knowledge of, poking away tears with her manicured nails while relating the story of her son's premature birth, followed by hazy happy video of said son, all smiley and ALIVE. And them marching. Because we're for babies, people. How can you not be for babies?
I feel, probably wrongly in my current state, that they've cut me out. That instead of marching for a child who died due to a genetic problem for which there is not only no cure but no means of detection prior to birth, I'm marching for people who live under rocks and don't know that smoking is bad for you while pregnant. Believe me, I'm all for public service (Don't drink and drive! Only you can prevent forest fires!), but this is one area where it's probably best not to inject my cynicism and snark. I know a good number of you out there find this a very appropriate and sympathetic charity, and I'm not judging you here. I'm probably just flailing about, trying to find something to piss me off. I'm fairly confident not too many other people feel the way I do, and will still march and raise money this year, like they have in the past, and that it will all be good, regardless. I am, I admit, the double-entendre bitch. I'm not sure whether to collect my thoughts and write someone in the marketing department, or say something on their new blog (I'll be sure to notify you so can pop over and bring marshmallows for the flamage that will undoubtedly ensue). (Perhaps you should go find your bag right now, because it may be taking place while you type, right here.) Or to suck it up and march for my dead kid anyway. Or to find another charity, who makes less of the lovely live baby sucking his toes at the top of the page and realizes that we still have a ways to go if we're really really really going to stem the tide of grief-stricken parents. Miles beyond "eat vegetables, set down that Chardonnay, and use a seatbelt!"
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