'Twas a time when daily mail delivery was a concrete representation of my so-called-fucked-up life. Unbeknownst to the mailman, through sleet and snow on his appointed rounds, he delivered us stacks fraught with trauma. Cheery cooking magazines topped with condolence cards. Banal clothing catalogs wrapped around hospital bills addressed to our new, and newly deceased, occupant.
We deconstructed the old life from the new, and even though our internal clocks were permanently frozen, apparently the phone company's, JJill's, a few political campaigns', and my high school reunion committee's, were not.
We opened sympathy cards and notices of donations first.
Then medical bills -- there was a sort of obligation to view those, and pay them quickly. It was a bizarre sort of Thank You gesture, writing out checks to specialists to whom we were completely enamored with and grateful for. (With the exception of the amnio bill which -- laden with irony -- showed up a few weeks after Maddy's death. I wondered if there was some sort of lemon law on those things, and then decided I didn't even have the strength to write "YOU MISSED SOMETHING" on my check.) There were services where deductibles and reductions had been taken, and we owed a bit of money. Some modest bills arrived for services that were covered by insurance, but where the biller didn't know our information for some reason -- like the transport team who moved Maddy from Delivery Hospital to Children's. Finally, there were the multiple-page ones, screaming "THIS IS NOT A BILL!" across the top, but I guess they felt it was a courtesy to inform us just how fucking much four (plus two) days costs in a state-of-the-art NICU. Like a movie, the envelope slipped from our fingers and dropped in slow motion to the floor, and we, agape, marveled at how many digits they could cram into those little shaded rectangles at the bottom of the page. As much as we had cursed our insurance company for years regarding their lack of preventative coverage (including, believe it or not, children's immunizations in my old state), we were now on bended knee thanking the stars that we were among the insured. We're self-employed, so our "coverage" is more a tattered, small-pox infested dish rag than a heated security blanket, but desperately sick children are apparently covered. Phew.
And then there was the rest of the mail: cooking magazines went into the living room bin for later, catalogs directly into the recycle bin, and we slowly started opening our other bills.
We're computer people, and busy, so a number of bills are set up for auto pay. Then there are the bunch where we just sit down once a month on the computer and 10 minutes later, presto, our account is zipping invisible monies to the utilities while we sip our coffee. And then there are a few yearlies that we often forget how exactly we set up, but usually they're really persistent buggers with the multiple warnings which arrive in envelopes announcing the next stage of alarm, much like the national security codes. ("Your bottled water bill threat level is yellow!") Normally the people who need our permission to roll over another year onto the credit card call us as well, repeatedly, at all hours of the day. Which I normally can't stand, but since losing my short term memory I find all kinds of convenient. Last week, I treated the service lady from my local paper like a long-lost friend. She barely got out who she was, and I started babbling, "I've had you on my to-do list for 5 weeks now! How are you? Thank you so much for calling!"
We were a bit late for this, a little longer for that, we filed a tax extension. Eventually, we dug out.
***
Meanwhile, back at the farm, my car was having issues of not starting, and not responding to jump starting. I distinctly remember a moment of panic that spring, April? May? in the Target parking lot with Bella in the car, and husband a good 90 minutes away at his job. I called my car insurance since we have roadside assistance through them, and they nicely sent out someone and praise jeebus, it responded to a jump. A few months later, in the cellphone lot at the airport, on a brutally hot day in July, I got the phone call from my brother that his family had gathered their luggage off the carousel, come get us -- and it didn't start. We couldn't jump start it. So again, I called the friendly insurance lady, and again, she sat on the phone with me for 20 minutes while we found a tow truck, and figured out where to tow it. Just as the truck pulled in, the car turned over.
We finally got to the bottom of this problem (ignition wire, duh), but this plus my car's lousy gas mileage got us thinking about another car. We test drove a hybrid, and decided to put in an order for a new fall model. I believe this was August. Car guy needed our insurance cards to place the order and get his ducks in a row, so we pulled them out and realized that they had expired. Huh.
This was not unusual for us, so we didn't panic remotely. We've been insured by said company since '95. As we er, matured, we also acquired an umbrella policy from them. And they have our credit card number, and they frequently send multiple envelopes and call, and etcetera. And we just assumed that we had missed the envelope where the new cards were (we've done that before), so we dove back into the now short stack. And couldn't find it. In fact, we couldn't find anything from them. No bills, no cards, no nothing.
So! We called the nice insurance company and asked if they could send us new cards? Thanks!
Sure we could, they said, If you were covered by us.
Mi Scusi?
Yeah. Your insurance policy payment? Was due in March. You didn't pay it.
Butbutbutbut . . we sputtered . . . no bill! No warning! No multiple warnings! No phone call! You fucking helped us out on roadside assistance -- TWICE -- and didn't tell us our bill was due! Or that we were no longer covered!" You have our fucking credit card, you morons!
Apparently that qualifies for: Too bad.
We wondered if something had been lost in the mail? Did we miss a phone call? We pulled out the grief card. We got some quiet sympathy.
We need insurance rather immediately, seeing as the car guy was on the other line -- what can we do?
Oh, my chickadees, as long time -- nay, twelve year -- customers of ours, with only one broken windshield and a fender bender (not our fault) to your name -- and your upgrade of an umbrella policy -- bills always paid on time -- credit card already confirmed and here on hand -- we can . . . . recover you as new people whom we've never heard of at our new rates which are more than double than what you were paying a few months ago.
Putting aside for a brief moment the fact that we were driving around uninsured (against the law in this here state) for, oh, FOUR MONTHS, is the lack of communication, AND, I'm sorry, but where did case-by-case basis go in this country? Is it possible your "This is a warning" letter got lost in the mail? Because we didn't get it. Is this how you treat long-term customers in good standing? Apparently.
We had little choice, we re-upped, and cursed them.
And today, over a year later, we finally got around to changing car insurance providers. We're saving money, yes, but we're also giving a big FUCK YOU to the old company. As well as the trauma of the bill stack during that nightmare.
***
If you're still reading this boring-as-hell drivel, the point is this: Maddy's death permeated our lives in ways we never thought possible, and continues to, more than a year and half later. This story, when you turn up the heat and reduce it and send it through a sieve, ends with the odd conclusion that only someone in our shoes could ever understand the absurdity and the complete rationality of:
We got new car insurance today, because our baby died.
***
Today C. is remembering Callum, a year later. Please remember with her.
Friday, October 31, 2008
Wednesday, October 22, 2008
Lotsa Love
Awwwww. Busted Babymaker loves my blog! And may I just say, I love her brutally honest, forthright, sometimes sassy and always heartfelt blog, too. Rightbackatcha. Know who else loves my blog and vice versa? Chance at Embracing Happenstance. And while you're taking in her amazing photography, please check out her beautiful handmade Waiting Hearts -- all proceeds go toward her surrogacy journey.
And thank goodness there's a meme to go with this , because people! Even if you aren't physically picking up a hammer or thumbing through "Drywall for Dummies," kitchen renovations are a time suck. I'm actually quite patient when it comes to waiting to use my old stuff and new stuff (I presently have a batch of Smitten Kitchen's Pumpkin Swirl Browines in my EasyBake Oven, gently toasting under a 60w bulb -- hopefully done in time for tonight's neighborhood Phillies rally), but I'm really, really tired of making decisions. And it seems there is always one to be made, right now, that requires a trip out to a store 20 miles away. Or that magically makes two hours of my life disappear on the internet.
Where was I? Oh right, fun meme. Here goes:
1. Where is your cell phone? Purse
2. Where is your significant other? Dogwalk
3. Your hair color? Dishwater
4. Your mother? Supportive
5. Your father? Quiet
6. Your favorite thing? Chocolate. No, wine. Wait, Chocolate. Damn.
7. Your dream last night? unmemorable
8. Your dream/goal? internal peace
9. The room you're in? Upstairs sitting room
10. Your
11. Your fear? Abandonment
12. Where do you want to be in six years? Here
13. Where were you last night? Couch
14. What you're not? Optimistic
15. One of your wish list items? What's a wish list?
16. Where you grew up? Arizona
17. The last thing you did? Baked
18. What are you wearing? Comfy Sweater
19. Your T.V.? Large
20. Your pet? too many
21. Your computer? Mercurial
22. Your mood? meh
23. Missing someone? Always
24. Your car? Hybrid
25. Something you're not wearing? shoes
26. Favorite store? D'Angelo's
27. Your Summer? Hectic
28. Love someone? Unrequited
29. Your favorite color? Blue
30. When is the last time you laughed? 10:00 a.m.
31. Last time you cried? Last week
Who needs a nice distraction?
Julia?
Missing One?
Coggy?
Which Box?
Melissia?
Sohpie?
Wednesday, October 15, 2008
National Pregnancy and Infant Loss Remembrance Day
Today is National Pregnancy and Infant Loss Remembrance Day.
(A click will take you to information re: the House Bill on Stillbirth Awareness.)
And as I told Mr. ABF, seeing as I've now lost one of each, I need to pony-up: I'm wearing my pin, and lighting a candle this evening at 7 p.m.
Remembering Maddy, and all of yours. Always.
(A click will take you to information re: the House Bill on Stillbirth Awareness.)
And as I told Mr. ABF, seeing as I've now lost one of each, I need to pony-up: I'm wearing my pin, and lighting a candle this evening at 7 p.m.
Remembering Maddy, and all of yours. Always.
Monday, October 13, 2008
Words Unspoken
Me: (pausing in the middle of one of our favorites, John, Paul, George, and Ben) Did you know that Benjamin Franklin used to near live here? Would you like to go see his house some day?
Bella: Is he dead?
Me: Yes, but sweetie, he was very old when he died, and he died over 200 years ago.
Bella: I'm going to live forever. (Pause, eyes rapidly fill up with tears) Mommy, am I going to die?
Me: We're all going to die, love. But hopefully not for a very, very long time.
Bella: But I'll miss you when I die.
***
Bella: Mom, what does a brain look like?
Me: (pulls up a picture on the computer): like this, pink, kinda mushy and squiggly. Here's a map of what all the different parts of the brain do. (I touch her head to roughly correspond with what is responsible for seeing, hearing, memory, language.)
Where did you hear about the brain? Did you talk about it at school today? Hear something on tv?
Bella: No. So it would be bad if I hurt my brain, wouldn't it.
(We've never, to my knowledge discussed Maddy's medical problems in front of Bella -- at least not intentionally, and the last phone conversation we might have had where we were doing the talking would've been a year ago August.)
***
Bella: (pointing at my stomach) Mommy, do you have a baby in your tummy?
Me: No, no I don't.
Bella: Then why are you fat?
***
Bella (at breakfast, out of the blue): Mom, when are you going to have another baby?
Me: I don't know. I don't know if I will have another baby.
Bella: Why. (Delivered more as a statement than a question)
Me: It's . . . Because I'm old.
***
Bella (While baking apple cake, again with no segue): Mommy, when are you going to die?
Me: I don't know. Hopefully when I'm very old.
Bella: (voice catching) When am I going to die?
Me: I don't know. I hope when you're very old. Hon, I know it's hard (BELIEVE ME) to think like this, but we can't worry about it. We need to enjoy just being alive, right now. If we keep worrying . . .
Bella: Mom
Me: . . . we won't be happy . . .
Bella: Mom!
Me: . . . maybe you can let mommy worry about it . . .
Bella: MOM!!
Me: Yes?
Bella: When are you going to have another baby?
***
I remember like it was yesterday, sitting knee to knee across from the social worker at Children's, who was sent to talk to us about Bella. This, 2.5, is the hardest age, she warned us. Any earlier, and she wouldn't remember. Any later, and she'd have some verbal ability to express her emotions. She's going to grow into this grief. One to two years from now, it's going to come up, when it's inopportune, when you least expect it, she's going to start talking about it. That's ok. That's normal. Just know it's coming.
***
The conversations have been coming fast and furious lately. Out of nowhere, the eyes pool with tears, and suddenly Bella and I are hugging and I'm dredging up words I never use anywhere anymore: "I hope." "Hopefully." But I'm never definitive, never emphatic. I stifle my tears because I want her to know she can talk to me about these things without the fear that she makes mommy dissolve.
And there is an obvious connection that is not lost on me.
School has started, and this year Bella attends five days in a class with 16 or so precocious four and five year olds. At the beginning of the year, two mothers were incredibly pregnant. One, according to the happy notice pinned outside her classroom next to the snack sheet, had a baby girl a week or so ago (and named her, much to my chagrin, after one of my favorite bloggers here. It's a peculiar stab in the heart to see that name on that sign every morning). "Please help us in welcoming X's sister!" I wonder what that paper would've looked like had Maddy been born in the school year. Black, with white writing? Perhaps a crayon drawing of a lily? But I digress: there has been an uptick in discussion of all things pregnancy and siblings and babies. "So-and-so's mommy has a baby in her tummy," Bella announced. "So-and-so has a new baby sister."
We've had discussions with Bella since February '07 on Maddy. And on death. The former trend towards lilac bushes and bracelets, identifying her in pictures and "remembering;" the latter on hearts shutting down, inability to breathe, loss of bodily functions (like eating and running) and the esoteric notion that all living things die. These discussions are always on her timetable, at her discretion, with her permission. But they have been on two separate tracks -- Maddy here, death there -- until now. The rivers of thought have finally converged, and suddenly out of nowhere there are profound discussions on death, siblings, and life all mashed together over a semi-soggy bowl of cheerios, during a cute history read-aloud, or while I'm peeling apples. There is no longer confusion: Her sister, her BABY sister, died. She, Bella, will die someday too. We will all die. Living things die. But we are alive now, and her friends get to bring home LIVE siblings, so why shouldn't she?
***
Last Friday evening, Mr. ABF and I attended the pre-school parents wine/cheese get-together for Bella's class. All well and good, until the host's husband (who is eternally away on business) asks Mr. ABF if Bella is our only child. To which he responds "Yes." And I hear the regret on his voice while the word is still hanging in the air, and I look down and feel . . . .guilty. I'm so tired of this. I'm so tired of hiding this part of my life, I'm so tired of tip-toeing around others' sensibilities. While our hosts drone on about "Woo boy, we would've NEVER had another had we known what we were in for --- our first was wayyyy to easy!" Mr. ABF shoots me a mental "I'm sorry," and I telepath back that I most likely wouldn't have had the mettle to bring down an evening right from the start, either.
Later, there's a 20-minute discussion where everyone chimes in on how at one point or another they "forgot" their second child -- in their heads, in their arms, in the car -- and through the laughter, Mr. ABF and I mentally prop each other up and wonder how in fuck we're going to get through a lifetime of these inane conversations. We're like aliens standing there, listening to a room speak in Swahili while we stand on the perimeter missing the punchline -- and always will be.
I don't begrudge these people their stories -- hell, I'd be one of those parents that left a kid in a grocery cart -- I just wish I could add to them. But I either have the easiest second child on the planet seeing as how her remains neatly fit into my purse and can be left at home on the shelf while we go to the beach for a week, or the hardest to forget. I'll never forget my second child. She's the fifteen-pound ring around my midsection, the downward gaze of my husband, the circles under my eyes, the bracelet on my wrist. She's the wall between me and every parent in this room. She's the reason I'm choking down my wine with a stony expression. She's the reason I have heartbreaking discussions about death with my child -- anyone else having those?
And we say nothing. Everyone is laughing, dressed up, enjoying time away thanks to the babysitter. We collapse in the car on the way home, grateful to be out of the lion's den, and yet rueful that we missed another opportunity to introduce people to our normal. To our children. It is utterly exhausting to be in public. Still.
Bella: Is he dead?
Me: Yes, but sweetie, he was very old when he died, and he died over 200 years ago.
Bella: I'm going to live forever. (Pause, eyes rapidly fill up with tears) Mommy, am I going to die?
Me: We're all going to die, love. But hopefully not for a very, very long time.
Bella: But I'll miss you when I die.
***
Bella: Mom, what does a brain look like?
Me: (pulls up a picture on the computer): like this, pink, kinda mushy and squiggly. Here's a map of what all the different parts of the brain do. (I touch her head to roughly correspond with what is responsible for seeing, hearing, memory, language.)
Where did you hear about the brain? Did you talk about it at school today? Hear something on tv?
Bella: No. So it would be bad if I hurt my brain, wouldn't it.
(We've never, to my knowledge discussed Maddy's medical problems in front of Bella -- at least not intentionally, and the last phone conversation we might have had where we were doing the talking would've been a year ago August.)
***
Bella: (pointing at my stomach) Mommy, do you have a baby in your tummy?
Me: No, no I don't.
Bella: Then why are you fat?
***
Bella (at breakfast, out of the blue): Mom, when are you going to have another baby?
Me: I don't know. I don't know if I will have another baby.
Bella: Why. (Delivered more as a statement than a question)
Me: It's . . . Because I'm old.
***
Bella (While baking apple cake, again with no segue): Mommy, when are you going to die?
Me: I don't know. Hopefully when I'm very old.
Bella: (voice catching) When am I going to die?
Me: I don't know. I hope when you're very old. Hon, I know it's hard (BELIEVE ME) to think like this, but we can't worry about it. We need to enjoy just being alive, right now. If we keep worrying . . .
Bella: Mom
Me: . . . we won't be happy . . .
Bella: Mom!
Me: . . . maybe you can let mommy worry about it . . .
Bella: MOM!!
Me: Yes?
Bella: When are you going to have another baby?
***
I remember like it was yesterday, sitting knee to knee across from the social worker at Children's, who was sent to talk to us about Bella. This, 2.5, is the hardest age, she warned us. Any earlier, and she wouldn't remember. Any later, and she'd have some verbal ability to express her emotions. She's going to grow into this grief. One to two years from now, it's going to come up, when it's inopportune, when you least expect it, she's going to start talking about it. That's ok. That's normal. Just know it's coming.
***
The conversations have been coming fast and furious lately. Out of nowhere, the eyes pool with tears, and suddenly Bella and I are hugging and I'm dredging up words I never use anywhere anymore: "I hope." "Hopefully." But I'm never definitive, never emphatic. I stifle my tears because I want her to know she can talk to me about these things without the fear that she makes mommy dissolve.
And there is an obvious connection that is not lost on me.
School has started, and this year Bella attends five days in a class with 16 or so precocious four and five year olds. At the beginning of the year, two mothers were incredibly pregnant. One, according to the happy notice pinned outside her classroom next to the snack sheet, had a baby girl a week or so ago (and named her, much to my chagrin, after one of my favorite bloggers here. It's a peculiar stab in the heart to see that name on that sign every morning). "Please help us in welcoming X's sister!" I wonder what that paper would've looked like had Maddy been born in the school year. Black, with white writing? Perhaps a crayon drawing of a lily? But I digress: there has been an uptick in discussion of all things pregnancy and siblings and babies. "So-and-so's mommy has a baby in her tummy," Bella announced. "So-and-so has a new baby sister."
We've had discussions with Bella since February '07 on Maddy. And on death. The former trend towards lilac bushes and bracelets, identifying her in pictures and "remembering;" the latter on hearts shutting down, inability to breathe, loss of bodily functions (like eating and running) and the esoteric notion that all living things die. These discussions are always on her timetable, at her discretion, with her permission. But they have been on two separate tracks -- Maddy here, death there -- until now. The rivers of thought have finally converged, and suddenly out of nowhere there are profound discussions on death, siblings, and life all mashed together over a semi-soggy bowl of cheerios, during a cute history read-aloud, or while I'm peeling apples. There is no longer confusion: Her sister, her BABY sister, died. She, Bella, will die someday too. We will all die. Living things die. But we are alive now, and her friends get to bring home LIVE siblings, so why shouldn't she?
***
Last Friday evening, Mr. ABF and I attended the pre-school parents wine/cheese get-together for Bella's class. All well and good, until the host's husband (who is eternally away on business) asks Mr. ABF if Bella is our only child. To which he responds "Yes." And I hear the regret on his voice while the word is still hanging in the air, and I look down and feel . . . .guilty. I'm so tired of this. I'm so tired of hiding this part of my life, I'm so tired of tip-toeing around others' sensibilities. While our hosts drone on about "Woo boy, we would've NEVER had another had we known what we were in for --- our first was wayyyy to easy!" Mr. ABF shoots me a mental "I'm sorry," and I telepath back that I most likely wouldn't have had the mettle to bring down an evening right from the start, either.
Later, there's a 20-minute discussion where everyone chimes in on how at one point or another they "forgot" their second child -- in their heads, in their arms, in the car -- and through the laughter, Mr. ABF and I mentally prop each other up and wonder how in fuck we're going to get through a lifetime of these inane conversations. We're like aliens standing there, listening to a room speak in Swahili while we stand on the perimeter missing the punchline -- and always will be.
I don't begrudge these people their stories -- hell, I'd be one of those parents that left a kid in a grocery cart -- I just wish I could add to them. But I either have the easiest second child on the planet seeing as how her remains neatly fit into my purse and can be left at home on the shelf while we go to the beach for a week, or the hardest to forget. I'll never forget my second child. She's the fifteen-pound ring around my midsection, the downward gaze of my husband, the circles under my eyes, the bracelet on my wrist. She's the wall between me and every parent in this room. She's the reason I'm choking down my wine with a stony expression. She's the reason I have heartbreaking discussions about death with my child -- anyone else having those?
And we say nothing. Everyone is laughing, dressed up, enjoying time away thanks to the babysitter. We collapse in the car on the way home, grateful to be out of the lion's den, and yet rueful that we missed another opportunity to introduce people to our normal. To our children. It is utterly exhausting to be in public. Still.
Monday, October 6, 2008
S.3142 and H.R. 5979 regarding Stillbirth
Last year, or any of the years previous, I didn't even know that Pregnancy and Infant Loss had it's own day, let alone a whole month. I found out, perhaps not surprisingly, from a lovely NICU nurse.
This year, the wonderful Antigone has spearheaded a movement to raise awareness about the day itself, and in addition, Senate Bill 3142: "Preventing Stillbirth and SUID Act of 2008." (The complimentary, but not identical bill, in the House is H.R. 5979. Those of you who remember School House Rock know that a bill must pass both the House and Senate before going to the President to be signed into law.) I know we're all desperately trying to wrap our heads around the subprime mortgage crisis (funny yet explanatory slide show here), cramming small bills into our mattresses, burning the window trim, and fashioning clothing from our draperies, but it would be nice if on Oct. 15th -- for a few minutes of one day -- the esteemed Lawmakers could focus on this issue.
I'm not hoping, I'm just sayin'.
(Also, might I add here, I explain some of the differences between these two bills below, but the Senate Bill is being sponsored by none other the the IL-D, Senator Barack Obama. Talk about the possibility of national awareness. So instead of only calling about the House Bill as the way below call to action suggests, I'm going to plug the senate bill by calling my senator AND the Obama HQ, and I encourage you to do the same -- in addition to calling your representative about the House Bill.)
I've been hesitating putting the whole shabang on the blog here until I read through the Senate bill itself, and I finally found a few minutes to do so. (Let's see if I can drum up a few more minutes and write about the damn thing.) I have some issues, which I'll relay below, but nothing that shouldn't be addressed to my (or your) senator when calling to voice my (your) support.
I'm not a stillbirth mom, but I could very well have been, and bills like this in the future may help moms like me. Let me explain.
For starts, the doctors told us on numerous occasions that Maddy's problems were so severe, that she really shouldn't have made it to term, let alone six days after. Which means, my six-day NICU experience was separated by the familiar ultrasound-with-no-heartbeat experience by the flimsiest of dividers. I could've been there.
As it is, I'm not, and Maddy's situation would not be applicable, but the results of this bill could very well have helped our doctors find a reason or at least eliminate some. The crux of the bill is a registry of sorts for that will amass information on stillbirth by establishing protocols for autopsies and the placenta (!). Other standardized factors of post mortem can be entered into this database (and here I'm assuming these would be questions posed the mother and doctor in addition to a pathology report, OR in the event that the parents decline an autopsy for whatever reason). The bill also places emphasis on "awareness" -- which may become more useful as the database increases. But I'm also assuming "awareness" includes PSA's on the database itself so that should a mother find herself in this unfortunate position, she (or her doctor) may already be aware that they help the greater cause (so to speak) by agreeing to participate in supplying information. My hope is that this becomes like organ donation, where people are less squeamish about autopsies knowing that something good may eventually come out of it all -- even if it's not their child's case specifically.
How would this have helped me? There would be an enormous pile of steaming hot data to compare my experience with. Our babies may have looked remarkably different on the inside, but what if our placentas (palcentae?) were not dissimilar? What if we both experienced a similar, unremarkable symptom at 25 weeks? Furthermore, the hope is that this study will actually find a link (or two) and suggest some diagnostic tools and safeguards for all women. You know by now my serious reservations on ultrasound technology as a diagnostic tool during pregnancy, but what if there was something else? What if someone designed a test of some sort for the 20th or 25th week to check for infection? Or realized that at week 28 they should zoom in on an particular organ that had been determined to show the first signs of distress? Anything??
What I like about the Senate bill: There's much to like. For starts, I like that the tone indicates we know a bit about stillbirth, but most people in this situation are left with no answers. Which means there's work to do. I like the coordinated effort and the acknowledgment that simple public awareness is needed and deserves funding in and of itself.
What I'm not crazy about: For starts, passing the buck on the defintion of "stillbirth." I'll go into this more on the House Bill (see below) but this, right here, is where things could get really sticky.
Also, with all due respect and sympathy to those who have lost children to SUID (including SIDS), I'm not sure I like that cause bundled with this bill. The two may very well be linked, but I think stillbirth needs a stand-alone bill, with a dedicated money pile and focus before we start making links like this. Not to mention, I think most parents are now aware of problems like SIDS and the more obvious risk factors (the Back to Sleep campaign has been quite successful). Are there still questions to be answered in this arena? You bet -- I'm sure there's nothing quite as devastating as finding your three month old dead one morning, even though you followed all the rules. Nothing like an ad campaign to label you an imbecile who was clueless about crib bumpers and tummy sleeping when in reality, your child's death remains a mystery. But I believe both of these issues need their own champions -- they are both important enough.
Finally, the wonderfully smart Julia alerted me that the NIH has an ongoing, long-term stillbirth study that is still in progress. It would probably behoove not only the authors of this bill, but the ultimate implementers, if this study were completed and in hand before moving forward.
As for the House Bill: I like that the House Bill stays focussed on Stillbirth. However, I'm a bit confounded that they're trying to push through the Certificate of Birth Resulting in Stillbrith in this version. This, my friends, is where things get hairy. It's not that I don't think parents deserve and need this piece of paper, because by God, they certainly do. (They deserve a helluva lot more, but validation of their children's existence is a nice start.) But no one to date has been able to settle on a definition here that doesn't open the door to the anti-choice movement using the bill as case-law and taking things in another direction entirely. As I commented on Antigone's blog, I'm distressed that deadbabies have become political footballs like this, but someone smart (like Julia!) needs to craft this language in a way that is careful and meaningful. Certificate of Birth Resulting in Stillbirth bills have failed on the state level in NY and NM because pro-choice representatives (and in NM, the governor) found the language vague enough to be dangerous.
I'm troubled because I would hate to see the idea of a national database torpedoed because people can't agree on the vocabulary behind and for this certificate. On the other hand, I'm somewhat cheered because this House Bill is co-sponsored by some very progressive, pro-choice representatives, so maybe -- just maybe -- they will be the ones to knit together just the right adjectives and terminology to make sense, and validate the children involved without turning them into launching pads for someone else's cause de jour.
In sum: database good. Extraneous stuff possibly bad, would like people to stay focussed on the issue at hand.
*******************
I now ask if you haven't already discussed the bill OR NATIONAL PREGNANCY AND INFANT LOSS AWARENESS MONTH/DAY on your blog/website/myspace page that you please take a moment for us and you to state the following as per Antigone:
October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.
Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.
On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.
Action Steps:
Step 1. Use Your Blog to Enlist Others
-Copy the contents of this entire post and publish it on your blog immediately.
GOAL: Enlist 10 of your readers to spread the word
Step 2. Use Your E-mail to Enlist Others
-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.
GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.
Step 3. Help Pass the Stillbirth Awareness and Research Act
-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."
This year, the wonderful Antigone has spearheaded a movement to raise awareness about the day itself, and in addition, Senate Bill 3142: "Preventing Stillbirth and SUID Act of 2008." (The complimentary, but not identical bill, in the House is H.R. 5979. Those of you who remember School House Rock know that a bill must pass both the House and Senate before going to the President to be signed into law.) I know we're all desperately trying to wrap our heads around the subprime mortgage crisis (funny yet explanatory slide show here), cramming small bills into our mattresses, burning the window trim, and fashioning clothing from our draperies, but it would be nice if on Oct. 15th -- for a few minutes of one day -- the esteemed Lawmakers could focus on this issue.
I'm not hoping, I'm just sayin'.
(Also, might I add here, I explain some of the differences between these two bills below, but the Senate Bill is being sponsored by none other the the IL-D, Senator Barack Obama. Talk about the possibility of national awareness. So instead of only calling about the House Bill as the way below call to action suggests, I'm going to plug the senate bill by calling my senator AND the Obama HQ, and I encourage you to do the same -- in addition to calling your representative about the House Bill.)
I've been hesitating putting the whole shabang on the blog here until I read through the Senate bill itself, and I finally found a few minutes to do so. (Let's see if I can drum up a few more minutes and write about the damn thing.) I have some issues, which I'll relay below, but nothing that shouldn't be addressed to my (or your) senator when calling to voice my (your) support.
I'm not a stillbirth mom, but I could very well have been, and bills like this in the future may help moms like me. Let me explain.
For starts, the doctors told us on numerous occasions that Maddy's problems were so severe, that she really shouldn't have made it to term, let alone six days after. Which means, my six-day NICU experience was separated by the familiar ultrasound-with-no-heartbeat experience by the flimsiest of dividers. I could've been there.
As it is, I'm not, and Maddy's situation would not be applicable, but the results of this bill could very well have helped our doctors find a reason or at least eliminate some. The crux of the bill is a registry of sorts for that will amass information on stillbirth by establishing protocols for autopsies and the placenta (!). Other standardized factors of post mortem can be entered into this database (and here I'm assuming these would be questions posed the mother and doctor in addition to a pathology report, OR in the event that the parents decline an autopsy for whatever reason). The bill also places emphasis on "awareness" -- which may become more useful as the database increases. But I'm also assuming "awareness" includes PSA's on the database itself so that should a mother find herself in this unfortunate position, she (or her doctor) may already be aware that they help the greater cause (so to speak) by agreeing to participate in supplying information. My hope is that this becomes like organ donation, where people are less squeamish about autopsies knowing that something good may eventually come out of it all -- even if it's not their child's case specifically.
How would this have helped me? There would be an enormous pile of steaming hot data to compare my experience with. Our babies may have looked remarkably different on the inside, but what if our placentas (palcentae?) were not dissimilar? What if we both experienced a similar, unremarkable symptom at 25 weeks? Furthermore, the hope is that this study will actually find a link (or two) and suggest some diagnostic tools and safeguards for all women. You know by now my serious reservations on ultrasound technology as a diagnostic tool during pregnancy, but what if there was something else? What if someone designed a test of some sort for the 20th or 25th week to check for infection? Or realized that at week 28 they should zoom in on an particular organ that had been determined to show the first signs of distress? Anything??
What I like about the Senate bill: There's much to like. For starts, I like that the tone indicates we know a bit about stillbirth, but most people in this situation are left with no answers. Which means there's work to do. I like the coordinated effort and the acknowledgment that simple public awareness is needed and deserves funding in and of itself.
What I'm not crazy about: For starts, passing the buck on the defintion of "stillbirth." I'll go into this more on the House Bill (see below) but this, right here, is where things could get really sticky.
Also, with all due respect and sympathy to those who have lost children to SUID (including SIDS), I'm not sure I like that cause bundled with this bill. The two may very well be linked, but I think stillbirth needs a stand-alone bill, with a dedicated money pile and focus before we start making links like this. Not to mention, I think most parents are now aware of problems like SIDS and the more obvious risk factors (the Back to Sleep campaign has been quite successful). Are there still questions to be answered in this arena? You bet -- I'm sure there's nothing quite as devastating as finding your three month old dead one morning, even though you followed all the rules. Nothing like an ad campaign to label you an imbecile who was clueless about crib bumpers and tummy sleeping when in reality, your child's death remains a mystery. But I believe both of these issues need their own champions -- they are both important enough.
Finally, the wonderfully smart Julia alerted me that the NIH has an ongoing, long-term stillbirth study that is still in progress. It would probably behoove not only the authors of this bill, but the ultimate implementers, if this study were completed and in hand before moving forward.
As for the House Bill: I like that the House Bill stays focussed on Stillbirth. However, I'm a bit confounded that they're trying to push through the Certificate of Birth Resulting in Stillbrith in this version. This, my friends, is where things get hairy. It's not that I don't think parents deserve and need this piece of paper, because by God, they certainly do. (They deserve a helluva lot more, but validation of their children's existence is a nice start.) But no one to date has been able to settle on a definition here that doesn't open the door to the anti-choice movement using the bill as case-law and taking things in another direction entirely. As I commented on Antigone's blog, I'm distressed that deadbabies have become political footballs like this, but someone smart (like Julia!) needs to craft this language in a way that is careful and meaningful. Certificate of Birth Resulting in Stillbirth bills have failed on the state level in NY and NM because pro-choice representatives (and in NM, the governor) found the language vague enough to be dangerous.
I'm troubled because I would hate to see the idea of a national database torpedoed because people can't agree on the vocabulary behind and for this certificate. On the other hand, I'm somewhat cheered because this House Bill is co-sponsored by some very progressive, pro-choice representatives, so maybe -- just maybe -- they will be the ones to knit together just the right adjectives and terminology to make sense, and validate the children involved without turning them into launching pads for someone else's cause de jour.
In sum: database good. Extraneous stuff possibly bad, would like people to stay focussed on the issue at hand.
*******************
I now ask if you haven't already discussed the bill OR NATIONAL PREGNANCY AND INFANT LOSS AWARENESS MONTH/DAY on your blog/website/myspace page that you please take a moment for us and you to state the following as per Antigone:
October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.
Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.
On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.
Action Steps:
Step 1. Use Your Blog to Enlist Others
-Copy the contents of this entire post and publish it on your blog immediately.
GOAL: Enlist 10 of your readers to spread the word
Step 2. Use Your E-mail to Enlist Others
-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.
GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.
Step 3. Help Pass the Stillbirth Awareness and Research Act
-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."
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