Hello, friends! If anyone still has me on their RSS feed. After so long away I return to my blog to post about Madelyn's little sister Lilly, who was born January 9, 2008.
Lilly is as beautiful as the day is long, with round blue eyes and such a ready smile, unless I take her to the portrait studio, of course. This week she learned how to yell really loud, and to blow raspberries with her oatmeal.
She is Madelyn's full sister, born of the love of her parents and a frozen embryo transfer -- and she doesn't have spina bifida. We agonized over whether to try for Lilly, but in the end we decided that having another child was worth the risk, and we were blessed. (Not to mention, flat-out lucky, though the odds were in our favor.) We won't tempt fate again, but I'm peaceful with it. I feel our family is complete. Lilly sleeps through the night now, and Maddy's doing just great -- she hasn't had surgery in over a year, and she walks and dances and has all sorts of opinions about how her world should be. Just ask her.
Even though we all know that siblings don't always look alike, I was somehow expecting Lilly to be Little Maddy II, but it just ain't so. Maddy has gorgeous chocolate brown eyes and doe-brown hair, while Lilly has deep blue ones and looks to be sporting strawberry blonde when she gets more than fuzz. I look at the two of them and I'm just in awe. I never knew I could love so much.
More soon -- I've got a plan or two for this blog, something better than letting it lie fallow. After all, it celebrates the most wonderful thing that has ever happened to me: Maddy and Lilly.
Friday, August 08, 2008
Tuesday, July 18, 2006
Power to the people
I've never been much of an activist. I tend toward the conservative in most of my views, with a few bizarre left-wing outbreaks. I do vote regularly, but otherwise my political action runs to watching the evening news and bitching about my state's illegal funding of public schools. If that counts. Recently, however, I did something that made me think about the power of the individual. Specifically, me.
A little background. Frequently -- I should rather say, daily -- I am on the Internet researching something to do with Maddy's spina bifida. It's a two-edged sword, as I wrote about in my last post: Often I find information I wasn't looking to find, that causes pain or worry. (For anyone who's wondering, I've confirmed with a geneticist that obese women are twice as likely as normal-weight women to have children with spina bifida. I'm dealing with it, in my two-steps-forward, one-step-back way.)
When I do my research, I usually start with the Google search engine. I will cop to the charge of being a compulsive googler. And I noticed that whenever I typed "spina bifida" as my search criterion, the same advertisement would display in the top right part of my screen. Something like, "Your baby's spina bifida could have been prevented by using folic acid." To add insult to injury, sometimes this ad would display on my own blog.
Once a person has learned to read, she can't help but take in something that hits her eyes. You'd think I and all other readers would become numb to the onslaught of words. But I noticed that advertisement every time I saw it. And every time, I felt a sickening twist of pain.
Nobody knows the true cause of spina bifida, and it's proven that even women who supplement with folic acid (as I did) can have spina bifida babies. To an admittedly thin-skinned new mother, it's offensive to state categorically that folic acid could have prevented what happened to Madelyn. The dark subtext is one of blame: "Attention please, Mommie Dearest. If you'd taken enough folic acid, your baby wouldn't have spina bifida. Click here now." That advertisement was salt in the festering wound of my guilt.
For months I ignored the ad as it jabbed my eyes over and over, like a paparazzi flash bulb. I told myself it was really no skin off my nose because I did take my prenatals and there was nothing I could do about either the ad or Madelyn having spina bifida. But one day, without really knowing I was going to do it, I found myself clicking on the ad, the way you'll scratch a mosquito bite even though you know you're going to draw blood.
The destination was www.spinabifidalaw.com, which purports to be the Spina Bifida Advocacy Network. Sounds very philanthropic, no? But a few more clicks revealed that this was the web site of a law firm inviting spina bifida parents to sue their doctors for not telling them the benefits of folic acid ("Do I Have a Case? FIND OUT NOW!").
Yeah, I know. You see it on TV all the time: Class-action lawsuits, negligence cases, and the like. Let's all sue for something, right? But this was personal. I was outraged. They were causing pain for spina bifida parents -- at least, for one of us -- with their insensitive advertisement, even as they sought to make money off us.
Full of righteous wrath, I did three things. I emailed my sister-in-law...well, I should say I ranted at my sister-in-law...who will soon be a lawyer herself, wondering if, indeed, I had a case against these lawyers, for adding even one jot to my anguish over Madelyn. I also emailed the lawyers themselves, telling them exactly why their advertisement was false and insensitive. And I wrote to Google about the ad.
And then, having irrevocably hit "Send" on these three emails, I commenced feeling foolish. Temper tantrums will tend to turn on you, and bite you on the ass. Why had I let a little advertisement bother me so much? For the next few days I dreaded opening my email, wondering if I'd get flamed but hoping I'd be ignored. (Cindy Sheehan, I ain't.)
My sister-in-law kindly wrote back to tell me that to sue for damages you have to have damages, and not just of the intangible kind. She said I should consider writing to the bar association in the state where these lawyers practice. I was already feeling so shamefaced about my tantrum that I let that slide. Neither the lawyers nor Google ever responded.
But lo! A few days later, back to my Googling ways, I found there'd been a change to the ad in the top right corner of a "spina bifida" search:
Spina Bifida
Could Your Baby's Spina Bifida Have
Been Prevented By Using Folic Acid?
www.spinabifidalaw.com
Holy Eats, Shoots & Leaves, Batman! One little word, moved from one end of the sentence to another, plus a question mark. And it makes all the difference.
Did the law firm or Google change the advertisement because of my email? I'll never know for sure. But now, when I see that ad (and it still pops up regularly), I no longer feel pain. I feel a little glow of pride, and a tiny seed of confidence that I can take care of Madelyn and myself. Whether it's taking on a school board to get Maddy services, arguing with doctors who know loads about children with spina bifida but zip about my baby, or just firing off a few snippy emails, I'm beginning to think I really can do this special-needs parenting thing.
For today, anyway.
A little background. Frequently -- I should rather say, daily -- I am on the Internet researching something to do with Maddy's spina bifida. It's a two-edged sword, as I wrote about in my last post: Often I find information I wasn't looking to find, that causes pain or worry. (For anyone who's wondering, I've confirmed with a geneticist that obese women are twice as likely as normal-weight women to have children with spina bifida. I'm dealing with it, in my two-steps-forward, one-step-back way.)
When I do my research, I usually start with the Google search engine. I will cop to the charge of being a compulsive googler. And I noticed that whenever I typed "spina bifida" as my search criterion, the same advertisement would display in the top right part of my screen. Something like, "Your baby's spina bifida could have been prevented by using folic acid." To add insult to injury, sometimes this ad would display on my own blog.
Once a person has learned to read, she can't help but take in something that hits her eyes. You'd think I and all other readers would become numb to the onslaught of words. But I noticed that advertisement every time I saw it. And every time, I felt a sickening twist of pain.
Nobody knows the true cause of spina bifida, and it's proven that even women who supplement with folic acid (as I did) can have spina bifida babies. To an admittedly thin-skinned new mother, it's offensive to state categorically that folic acid could have prevented what happened to Madelyn. The dark subtext is one of blame: "Attention please, Mommie Dearest. If you'd taken enough folic acid, your baby wouldn't have spina bifida. Click here now." That advertisement was salt in the festering wound of my guilt.
For months I ignored the ad as it jabbed my eyes over and over, like a paparazzi flash bulb. I told myself it was really no skin off my nose because I did take my prenatals and there was nothing I could do about either the ad or Madelyn having spina bifida. But one day, without really knowing I was going to do it, I found myself clicking on the ad, the way you'll scratch a mosquito bite even though you know you're going to draw blood.
The destination was www.spinabifidalaw.com, which purports to be the Spina Bifida Advocacy Network. Sounds very philanthropic, no? But a few more clicks revealed that this was the web site of a law firm inviting spina bifida parents to sue their doctors for not telling them the benefits of folic acid ("Do I Have a Case? FIND OUT NOW!").
Yeah, I know. You see it on TV all the time: Class-action lawsuits, negligence cases, and the like. Let's all sue for something, right? But this was personal. I was outraged. They were causing pain for spina bifida parents -- at least, for one of us -- with their insensitive advertisement, even as they sought to make money off us.
Full of righteous wrath, I did three things. I emailed my sister-in-law...well, I should say I ranted at my sister-in-law...who will soon be a lawyer herself, wondering if, indeed, I had a case against these lawyers, for adding even one jot to my anguish over Madelyn. I also emailed the lawyers themselves, telling them exactly why their advertisement was false and insensitive. And I wrote to Google about the ad.
And then, having irrevocably hit "Send" on these three emails, I commenced feeling foolish. Temper tantrums will tend to turn on you, and bite you on the ass. Why had I let a little advertisement bother me so much? For the next few days I dreaded opening my email, wondering if I'd get flamed but hoping I'd be ignored. (Cindy Sheehan, I ain't.)
My sister-in-law kindly wrote back to tell me that to sue for damages you have to have damages, and not just of the intangible kind. She said I should consider writing to the bar association in the state where these lawyers practice. I was already feeling so shamefaced about my tantrum that I let that slide. Neither the lawyers nor Google ever responded.
But lo! A few days later, back to my Googling ways, I found there'd been a change to the ad in the top right corner of a "spina bifida" search:
Spina Bifida
Could Your Baby's Spina Bifida Have
Been Prevented By Using Folic Acid?
www.spinabifidalaw.com
Holy Eats, Shoots & Leaves, Batman! One little word, moved from one end of the sentence to another, plus a question mark. And it makes all the difference.
Did the law firm or Google change the advertisement because of my email? I'll never know for sure. But now, when I see that ad (and it still pops up regularly), I no longer feel pain. I feel a little glow of pride, and a tiny seed of confidence that I can take care of Madelyn and myself. Whether it's taking on a school board to get Maddy services, arguing with doctors who know loads about children with spina bifida but zip about my baby, or just firing off a few snippy emails, I'm beginning to think I really can do this special-needs parenting thing.
For today, anyway.
Friday, June 02, 2006
I want to be overweight!
Now, how many people can say that?
Apparently, about sixty million Americans share my goal, because we are obese. Being merely "overweight" would be an improvement in my condition.
"Obese" is such an ugly word to me. I think it's because it rhymes with grease. Have you ever seen one of those infomercials for the next best thing in weight loss, where the evangelical and oh-so-thin host holds up a jar containing a pound of chicken fat? Or then there's the fact that my total weight loss goal of 53 pounds means I need to lose an eight-year-old child off my body. Imagine that childbirth! I think I'd endure it though, in preference to a year of hovering starvation. There's a reason why the word "diet" contains the word "die."
I did not know I counted as "obese" until I tried a body mass calculator, which assigned me a BMI of 30 and gave me the dread news. Luckily, if I lose just 5 more pounds, I will drop into the "Overweight" category.
My body and I have always been at war. I became a plump child when my parents divorced: When you look at a series of school pictures, you can see the exact year when I blimped up. And because of the cruelty of children, my avoirdupois branded me an outcast in gradeschool, the classic last-pick-for-kickball. At thirteen I decided that weight loss was my ticket to social acceptability. This plan did not work out as I'd hoped, but I did acquire anorexia nervosa. I survived, but became bulimic, and that condition lasted well into my twenties. After that I became a serial Weight Watchers member, cycling through the same fifty pounds. I was thin when I got married, but infertility and its associated stress eating put me at the high end when I conceived Madelyn.
To my horror, last week while searching for some information for Maddy, I found links like this one that make me fear my obesity and gestational diabetes are the cause of Madelyn's spina bifida. I have not cried so hard since long before her birth, and I'm heartbroken that I didn't know of this link before trying my donor cycle. It is new research.
My obstetrician and I had talked about the health risks of being overweight during pregnancy (I did not realize that I was "obese" even then) and I worked hard to keep my weight gain low. I had a net gain of only 12 pounds or so during pregnancy and after I delivered, I was 10 pounds below my pre-pregnancy weight. Yet I developed gestational diabetes anyway. And now I find that my gluttony and lack of discipline may have harmed my child.
There are lots of women far heavier than me delivering healthy babies. I am short; on a taller woman, my extra pounds would not qualify as obesity. I can still (barely) shop in regular stores for clothes. And yet the more I learn about the risk factors for spina bifida, the more I realize that I unwittingly brought many of them with me into my pregnancy. Besides obesity, there is drinking tea, which I did -- one cup a day, with the permission of my doctor. That one has been challenged, but there is new work going on to indicate that compounds in tea might interfere with the metabolism of folic acid. There is even the fact that I am of Irish extraction: "Our epidemiologists, in studies in Ireland where the prevalence of spina bifida is particularly high, have identified a specific gene defect that predisposes women to bear children with spina bifida, especiallly if their diets are low in folate."
And then there is the torturous fact that I can't know for sure whether I took my prenantal vitamin every day. For anyone still reading this blog who wants to do a donor cycle, I highly advise that you make a little "X" on your calendar every time you take your vitamin. That way, if spina bifida should befall your child, you will not have the folic acid question to reproach yourself with.
All of this has made me so sorrowful for Madelyn. She is the sweetest, happiest little being who has no idea as yet of what's ahead of her, and now when I look at her, sometimes my eyes fill with tears and I have only these words: "I'm so sorry, my dear one." I do not yet know how I will live my way through this intense guilt. I have made tentative inquiries of the few spina bifida moms that I know, but no one seems to be suffering as much as I am -- or, they don't want to share it. Every doctor, every friend and family member, and certainly my husband, have been telling me: "It's not your fault." But I know in my heart that I did not do my best for Madelyn. I'll never really know what caused her condition, but I suspect it is simple: Me.
Feeling this, the most attractive option available is to crawl into a hole and pull it in after me. I don't deserve to be Madelyn's mother. And yet, such as I am, I am what she's been given. I have to do my best for her now, even if I failed in pregnancy. I must lose this hated weight, once and for all. I owe it to Madelyn, both as expiation and more importantly, for her health. Obesity is a particular risk for spina bifida children because mobility and thus exercise are difficult for them, and it's well known that obese parents have obese children. How can I ask Maddy to control her weight when I'm a living example of someone who does not?
And I want to lose it quickly, or at least more quickly than the plodding one to one-and-a-half pounds a week that I used to lose on Weight Watchers. My babysitter has had much success with a low-carb diet, but I am frustrated with it. After the initial drop most people get from a new diet, I crept down 8 pounds and have stuck there. The diet is hard for me to follow because if I could, I'd eat only carbohydrates; I was ovolacto-vegetarian for years. The only thing I like better about this diet that Weight Watchers is that I'm hardly ever hungry.
This week I'm going to try to drink a lot more water and start some mild exercise, and see if that will "goose" my system into losing weight. Madelyn is a far better motivation than a new wardrobe or the compliments one gets for being thin. I want to do this for her. And for myself.
But mostly for her.
Apparently, about sixty million Americans share my goal, because we are obese. Being merely "overweight" would be an improvement in my condition.
"Obese" is such an ugly word to me. I think it's because it rhymes with grease. Have you ever seen one of those infomercials for the next best thing in weight loss, where the evangelical and oh-so-thin host holds up a jar containing a pound of chicken fat? Or then there's the fact that my total weight loss goal of 53 pounds means I need to lose an eight-year-old child off my body. Imagine that childbirth! I think I'd endure it though, in preference to a year of hovering starvation. There's a reason why the word "diet" contains the word "die."
I did not know I counted as "obese" until I tried a body mass calculator, which assigned me a BMI of 30 and gave me the dread news. Luckily, if I lose just 5 more pounds, I will drop into the "Overweight" category.
My body and I have always been at war. I became a plump child when my parents divorced: When you look at a series of school pictures, you can see the exact year when I blimped up. And because of the cruelty of children, my avoirdupois branded me an outcast in gradeschool, the classic last-pick-for-kickball. At thirteen I decided that weight loss was my ticket to social acceptability. This plan did not work out as I'd hoped, but I did acquire anorexia nervosa. I survived, but became bulimic, and that condition lasted well into my twenties. After that I became a serial Weight Watchers member, cycling through the same fifty pounds. I was thin when I got married, but infertility and its associated stress eating put me at the high end when I conceived Madelyn.
To my horror, last week while searching for some information for Maddy, I found links like this one that make me fear my obesity and gestational diabetes are the cause of Madelyn's spina bifida. I have not cried so hard since long before her birth, and I'm heartbroken that I didn't know of this link before trying my donor cycle. It is new research.
My obstetrician and I had talked about the health risks of being overweight during pregnancy (I did not realize that I was "obese" even then) and I worked hard to keep my weight gain low. I had a net gain of only 12 pounds or so during pregnancy and after I delivered, I was 10 pounds below my pre-pregnancy weight. Yet I developed gestational diabetes anyway. And now I find that my gluttony and lack of discipline may have harmed my child.
There are lots of women far heavier than me delivering healthy babies. I am short; on a taller woman, my extra pounds would not qualify as obesity. I can still (barely) shop in regular stores for clothes. And yet the more I learn about the risk factors for spina bifida, the more I realize that I unwittingly brought many of them with me into my pregnancy. Besides obesity, there is drinking tea, which I did -- one cup a day, with the permission of my doctor. That one has been challenged, but there is new work going on to indicate that compounds in tea might interfere with the metabolism of folic acid. There is even the fact that I am of Irish extraction: "Our epidemiologists, in studies in Ireland where the prevalence of spina bifida is particularly high, have identified a specific gene defect that predisposes women to bear children with spina bifida, especiallly if their diets are low in folate."
And then there is the torturous fact that I can't know for sure whether I took my prenantal vitamin every day. For anyone still reading this blog who wants to do a donor cycle, I highly advise that you make a little "X" on your calendar every time you take your vitamin. That way, if spina bifida should befall your child, you will not have the folic acid question to reproach yourself with.
All of this has made me so sorrowful for Madelyn. She is the sweetest, happiest little being who has no idea as yet of what's ahead of her, and now when I look at her, sometimes my eyes fill with tears and I have only these words: "I'm so sorry, my dear one." I do not yet know how I will live my way through this intense guilt. I have made tentative inquiries of the few spina bifida moms that I know, but no one seems to be suffering as much as I am -- or, they don't want to share it. Every doctor, every friend and family member, and certainly my husband, have been telling me: "It's not your fault." But I know in my heart that I did not do my best for Madelyn. I'll never really know what caused her condition, but I suspect it is simple: Me.
Feeling this, the most attractive option available is to crawl into a hole and pull it in after me. I don't deserve to be Madelyn's mother. And yet, such as I am, I am what she's been given. I have to do my best for her now, even if I failed in pregnancy. I must lose this hated weight, once and for all. I owe it to Madelyn, both as expiation and more importantly, for her health. Obesity is a particular risk for spina bifida children because mobility and thus exercise are difficult for them, and it's well known that obese parents have obese children. How can I ask Maddy to control her weight when I'm a living example of someone who does not?
And I want to lose it quickly, or at least more quickly than the plodding one to one-and-a-half pounds a week that I used to lose on Weight Watchers. My babysitter has had much success with a low-carb diet, but I am frustrated with it. After the initial drop most people get from a new diet, I crept down 8 pounds and have stuck there. The diet is hard for me to follow because if I could, I'd eat only carbohydrates; I was ovolacto-vegetarian for years. The only thing I like better about this diet that Weight Watchers is that I'm hardly ever hungry.
This week I'm going to try to drink a lot more water and start some mild exercise, and see if that will "goose" my system into losing weight. Madelyn is a far better motivation than a new wardrobe or the compliments one gets for being thin. I want to do this for her. And for myself.
But mostly for her.
Friday, May 26, 2006
On being a working mother
Ah, the Mommy Wars. They rage unabated in my little patch of suburbia, let me tell you. I went to a friend's card party last year and someone asked sweetly, "And you're still working?" This, I hasten to clarify, was before Madelyn was even conceived. I instantly felt like a second-class wife because I had not quit my job the instant I spoke my vows, in order to create and manage a picture-perfect home for Ward. Er, for my husband. I wonder what they'll say when I show up at the next soiree with an infant, and still admit to the crime of full-time employment. Probably: "Child abuser!"
Not that I care. To me, the Mommy Wars are a social annoyance: I don't like putting up with condescending folk who make thinly veiled slurs at those who work or those who don't. I don't like feeling like I have to justify my life choices to anyone. But, nosy Parkers aside, the real issue is whether I believe I'm doing the best I can for my child, and what exactly "my best" means.
I'm not one of those who works for self-worth or identity, nor do I feel that changing diapers and wiping spit-up is a waste of my talent. I see nothing wrong with feeling that way, and making choices along those lines, if your career is part of who you are -- but that's not me. Even though I enjoy what I do and am reasonably skilled at it, my job is something I do to fund the rest of my life. I suspect this is why I had such a desperately hard time accepting donor egg as my path to motherhood. I saw my genetic children as my legacy in this world, and never imagined making my mark professionally or artistically.
Back in the day, my husband and I had talked about me staying home for a few years while "the kids" -- ha! -- were small, since we blithely assumed we'd have no trouble adding two or even three to our family. But then, in this game of pick-up sticks that I call my life, the straws fell awry. Anybody who says, "You could afford to stay at home with Madelyn if you were willing to make sacrifices" has not experienced two years of unemployment for one spouse concurrent with infertility for the other. At the same time our expenses were skyrocketing, our income was halved.
So what did we do? It's the American Way: We borrowed. We have a huge infertility loan, not to mention a special-needs child's medical bills and other assorted obligations. When I catch a whiff of scorn -- or worse, pity -- from someone who learns I have a spina bifida baby and yet have kept my job, I want to snap, "I'm not buying lattes and having pedicures with my paycheck, sister!"
I tell myself that digging out from under this avalanche of debt is part of being Madelyn's mother; I'm helping to take care of her, and of our family, financially. But I'll admit to feeling like a fraud as I write. Madelyn doesn't know that diapers are twenty-four cents each at Wal-Mart or that it's past time to start her college fund. She only knows that she wants her Mommy. And God, I want her too; every precious minute I can get with her.
Could we survive and inch our way to solvency on one income? Maybe. Probably. About twenty years after it came time to retire, and on a shoestring, house-of-cards basis. Last week at spina bifida parents' group, I learned that the special shoes these kids need as toddlers can cost up to a thousand dollars a pair. Both kids would be on their own for college. And I have real fears about the toll it might take on our marriage. We already have stepfamily issues and special-needs parenting issues; what would it be like if we shouldered again the financial strain we just emerged from?
I think being unemployed left scars on my husband. A guy puts in ten years or so on the job and he tends to take that paycheck for granted: If I get in the car every day and drive there, they'll continue to fund my life. Then one day his company says good to know ya, don't let the door hit you in the ass on the way out, and suddenly his family's survival is in doubt. How many of us really have six months' worth of expenses in the bank, like Suze Orman insists we must? Involuntary unemployment shakes a person (and a marriage) down to the core; it leaves you with a profound, Depression-era sense of insecurity, especially if you have children to support and a heavy load of medical bills. It was a wretched, dangerous time for us.
And right now I have the sweetest of all deals. Four days a week, my commute is twenty seconds up the stairs, because I am privileged to work from home. I have a full-time babysitter who has learned to catheterize and who does a great job with Madelyn's "play" therapy. Her memory of when it's time for Zantac is better than mine, and I can run downstairs almost anytime I want for a hug and kiss, or if there's a problem. I only go in to the office one day a week, and -- guilty little secret here -- I like it. I know Madelyn is well cared for, and I get to dress in something besides baggy sweats, make lunch dates, and talk grown-up talk, one day a week. I am deeply grateful to have this option; there are many mothers out there for whom the Mommy Wars are as far removed as the Civil War...they have to leave their kids with someone every day and go to work. Period. The choice itself, to work or not to work, is a luxury too many women overlook.
So, much as I would love to chuck my job and hire myself as Madelyn's babysitter, right at this moment my gut tells me that would be a selfish choice. My child is happy and safe, and her needs are met. I am not "missing" anything. I admit to a twist of unhappiness at yesterday's physical therapy appointment, when it seemed like my babysitter's smiles were more attractive to Madelyn than mine. But if I quit now, I'd be doing it more to serve my own needs than Madelyn's, not to mention putting a crushing load on my husband and placing our future in jeopardy.
The future may bring different choices, as Madelyn's needs change. I'm toying with the idea of going part-time so I'd have one day a week to do her various appointments without stressing the lost work time, and still bringing home most of my current salary. We'll see what happens.
Happy holiday weekend, everyone. Weight loss report: 8 lbs down, and stuck! Got to get some exercise.
Not that I care. To me, the Mommy Wars are a social annoyance: I don't like putting up with condescending folk who make thinly veiled slurs at those who work or those who don't. I don't like feeling like I have to justify my life choices to anyone. But, nosy Parkers aside, the real issue is whether I believe I'm doing the best I can for my child, and what exactly "my best" means.
I'm not one of those who works for self-worth or identity, nor do I feel that changing diapers and wiping spit-up is a waste of my talent. I see nothing wrong with feeling that way, and making choices along those lines, if your career is part of who you are -- but that's not me. Even though I enjoy what I do and am reasonably skilled at it, my job is something I do to fund the rest of my life. I suspect this is why I had such a desperately hard time accepting donor egg as my path to motherhood. I saw my genetic children as my legacy in this world, and never imagined making my mark professionally or artistically.
Back in the day, my husband and I had talked about me staying home for a few years while "the kids" -- ha! -- were small, since we blithely assumed we'd have no trouble adding two or even three to our family. But then, in this game of pick-up sticks that I call my life, the straws fell awry. Anybody who says, "You could afford to stay at home with Madelyn if you were willing to make sacrifices" has not experienced two years of unemployment for one spouse concurrent with infertility for the other. At the same time our expenses were skyrocketing, our income was halved.
So what did we do? It's the American Way: We borrowed. We have a huge infertility loan, not to mention a special-needs child's medical bills and other assorted obligations. When I catch a whiff of scorn -- or worse, pity -- from someone who learns I have a spina bifida baby and yet have kept my job, I want to snap, "I'm not buying lattes and having pedicures with my paycheck, sister!"
I tell myself that digging out from under this avalanche of debt is part of being Madelyn's mother; I'm helping to take care of her, and of our family, financially. But I'll admit to feeling like a fraud as I write. Madelyn doesn't know that diapers are twenty-four cents each at Wal-Mart or that it's past time to start her college fund. She only knows that she wants her Mommy. And God, I want her too; every precious minute I can get with her.
Could we survive and inch our way to solvency on one income? Maybe. Probably. About twenty years after it came time to retire, and on a shoestring, house-of-cards basis. Last week at spina bifida parents' group, I learned that the special shoes these kids need as toddlers can cost up to a thousand dollars a pair. Both kids would be on their own for college. And I have real fears about the toll it might take on our marriage. We already have stepfamily issues and special-needs parenting issues; what would it be like if we shouldered again the financial strain we just emerged from?
I think being unemployed left scars on my husband. A guy puts in ten years or so on the job and he tends to take that paycheck for granted: If I get in the car every day and drive there, they'll continue to fund my life. Then one day his company says good to know ya, don't let the door hit you in the ass on the way out, and suddenly his family's survival is in doubt. How many of us really have six months' worth of expenses in the bank, like Suze Orman insists we must? Involuntary unemployment shakes a person (and a marriage) down to the core; it leaves you with a profound, Depression-era sense of insecurity, especially if you have children to support and a heavy load of medical bills. It was a wretched, dangerous time for us.
And right now I have the sweetest of all deals. Four days a week, my commute is twenty seconds up the stairs, because I am privileged to work from home. I have a full-time babysitter who has learned to catheterize and who does a great job with Madelyn's "play" therapy. Her memory of when it's time for Zantac is better than mine, and I can run downstairs almost anytime I want for a hug and kiss, or if there's a problem. I only go in to the office one day a week, and -- guilty little secret here -- I like it. I know Madelyn is well cared for, and I get to dress in something besides baggy sweats, make lunch dates, and talk grown-up talk, one day a week. I am deeply grateful to have this option; there are many mothers out there for whom the Mommy Wars are as far removed as the Civil War...they have to leave their kids with someone every day and go to work. Period. The choice itself, to work or not to work, is a luxury too many women overlook.
So, much as I would love to chuck my job and hire myself as Madelyn's babysitter, right at this moment my gut tells me that would be a selfish choice. My child is happy and safe, and her needs are met. I am not "missing" anything. I admit to a twist of unhappiness at yesterday's physical therapy appointment, when it seemed like my babysitter's smiles were more attractive to Madelyn than mine. But if I quit now, I'd be doing it more to serve my own needs than Madelyn's, not to mention putting a crushing load on my husband and placing our future in jeopardy.
The future may bring different choices, as Madelyn's needs change. I'm toying with the idea of going part-time so I'd have one day a week to do her various appointments without stressing the lost work time, and still bringing home most of my current salary. We'll see what happens.
Happy holiday weekend, everyone. Weight loss report: 8 lbs down, and stuck! Got to get some exercise.
Monday, May 15, 2006
It's always something
Warning: The content of today's entry might strike your ear as, well, whining. I'm Mommy to a sweet, beautiful baby when so many of my infertile compatriots are still struggling toward motherhood. I do know how very lucky I am to have my Maddy.
But.
It really is always something, with a special-needs child. Maybe with any child -- my experience is limited, since Madelyn is my firstborn. But there always seems to be some issue we're struggling with. Right now we're getting unusually high catheterization volumes, meaning she isn't wetting her diaper on her own as much as she was. And she's having trouble moving her bowels; we get either too much or too little.
Bowel and bladder problems are common and we were warned about them, but nobody told me how aggravating it is to figure out what's wrong, what to do about it, whether what you're doing is working or not working, and to communicate same to the nurses, who will talk to the doctors, who will talk to the nurses, who will get back to you on some unspecified date, all while your child is suffering. And if anyone had told me that my husband and I would have half-hour conversations about whether a diaper is "damp" or "wet"--!
So I'm on the phone all the time with the urology nurses, and with neurosurgery too, because it can't just be as simple as dealing with the diaper issues and moving on. No, changes in bowel and bladder function can be symptomatic of a problem with Madelyn's spine. Every little question requires a long game of phone tag and most often a trip to the pediatrician's office, just in case. In case what, you ask? In case Madelyn's fussiness and vomiting are symptomatic for shunt malfunction. (Answer: No, she's got the flu, you foolish Mommy.) In case her huge cath volumes and constipation are symptomatic for spinal cord tethering. (Answer: Even if it is, we won't do surgery until she's four to six years old. Talk to Urology and don't darken our door until August.)
It is always something. We're muddling along, and we get good news now and then -- her sleep study showed greatly improved statistics for her apnea; her vocal cords are completely normal, and so on. But then we'll get a diagnosis of torticollis and it's off to physical therapy once a week, where the advice is frustratingly vague: "Hold her in the opposite arm when you feed her."
Or it will suddenly occur to me that the medications she was started on in January were dosed according to her weight then, when is roughly half what she weighs now. No one has followed up with us on those medications. So I'll start new games of phone tag, and it will turn out that yes, she should have had a new dose of the antibiotic. You know, the one that is protecting her kidneys from permanent damage. "Oh, didn't Dr. E--- talk to you about that?"
No. He didn't.
My stomach is churning even as I write. I can't find words adequate to describe the quality of the worry that I feel, all the time. I've written before that worry is like little rat teeth. But this worry--that I'll overlook or mismanage something crucial to my baby's health--is like a millstone sitting on my chest, slooowwly crushing the breath out of me. Because I've missed things before. I didn't recognize stridor for what it was. And when she was extra-sleepy that one weekend, no alarm bells went off -- I remember being happy that she was sleeping longer than normal, so I could get some sleep myself. Madelyn got early, effective treatment for her partially clogged shunt (sleepiness) and her brain stem compression (stridor) through sheer, dumb luck. Not through her mother's vigilance or knowledge.
It haunts me. I know it'll happen again...other than stridor, the symptoms we are to watch for are just too vague, and too similar to normal baby behavior, for even a watchful parent to easily catch (fussy, sleepy, spitting up, etc.) Here's the bit that drives me crazy: You'll be talking to a doctor, trying to describe how you think she's fussy, but not too fussy, and she's maybe a little sleepy but it's hard to tell, and she could be teething, but there was that weird sound she made.... The whole time you're expecting him to excuse himself and call the cops to report you for munchausen by proxy because this is the third visit to his office in a month.
He'll listen to your whole ramble and he'll say, earnestly, "Well, you know your baby. Do you think this is unusual for her? The Mom is usually right, you know!" And here he grins at you, to show that he's on your team.
Whereupon I want to pounce on him, grab him by the tie, and thump his head against the nearest hard surface, "Look, Doctor, I brought her in here to get your educated opinion, not to tell you mine. If I thought she had a shunt malfunction we'd be at the hospital, wouldn't we? Instead we're screwing around at the pediatrician's office because I don't know what I'm doing. So if you wouldn't mind not adding to my load of guilt and my doubts about my mothering ability? And if you could tell me whether my daughter needs another shunt revision surgery so I can get that on my calendar? Thanks."
Grrr.
I wish I had a ten-spot for every time some doctor has said some version of the above to me: that I know Madelyn best and so I should tell them when there's a serious issue. It's even printed in our spina bifida notebook they sent home from the hospital. On the face of it, it sounds great; the professionals are supposed to pay attention to the child's closest caregiver. But in practice, it's not so great. You go in with vague concerns and -- ping? pong! -- you get vague answers back. And as a bonus you get a reminder that if something is wrong and it isn't identified, it's your fault. Because of course, the mother ought to know.
And then there are the days when I must don my Billing Clerk hat: I actually laughed out loud when I got the hospital bill for our January adventure...before insurance grudgingly coughed up, we owed nearly twice the value of my first condominium. Or, my Scheduling Clerk hat: There is a yellow post-it on the side of my monitor that reads "M. FU ears, sleep, PT? Ask." It is in my handwriting. Hmm. My ways are deep, very deep, and none shall know them.
So, it's always something. And I worry. It's slowly getting to me...I'm irritable, scatterbrained (more than usual). I've started waking up with an excruciating headache every day, and I have finally twigged to the fact that I'm grinding my teeth at night. This has happened randomly in my life as a sort of exam-week thing. But Maddy's only six months old and I've got what, about twenty years worth of "exams"? I've got to learn to cope with this.
Tonight we're going to our first spina bifida parents support group. I am trying not to expect too much...I'll probably be too shy to vent much, at first. But I am dearly hoping somebody, sometime can tell me how to cope with this steady, grinding pressure without falling apart. I need help.
But.
It really is always something, with a special-needs child. Maybe with any child -- my experience is limited, since Madelyn is my firstborn. But there always seems to be some issue we're struggling with. Right now we're getting unusually high catheterization volumes, meaning she isn't wetting her diaper on her own as much as she was. And she's having trouble moving her bowels; we get either too much or too little.
Bowel and bladder problems are common and we were warned about them, but nobody told me how aggravating it is to figure out what's wrong, what to do about it, whether what you're doing is working or not working, and to communicate same to the nurses, who will talk to the doctors, who will talk to the nurses, who will get back to you on some unspecified date, all while your child is suffering. And if anyone had told me that my husband and I would have half-hour conversations about whether a diaper is "damp" or "wet"--!
So I'm on the phone all the time with the urology nurses, and with neurosurgery too, because it can't just be as simple as dealing with the diaper issues and moving on. No, changes in bowel and bladder function can be symptomatic of a problem with Madelyn's spine. Every little question requires a long game of phone tag and most often a trip to the pediatrician's office, just in case. In case what, you ask? In case Madelyn's fussiness and vomiting are symptomatic for shunt malfunction. (Answer: No, she's got the flu, you foolish Mommy.) In case her huge cath volumes and constipation are symptomatic for spinal cord tethering. (Answer: Even if it is, we won't do surgery until she's four to six years old. Talk to Urology and don't darken our door until August.)
It is always something. We're muddling along, and we get good news now and then -- her sleep study showed greatly improved statistics for her apnea; her vocal cords are completely normal, and so on. But then we'll get a diagnosis of torticollis and it's off to physical therapy once a week, where the advice is frustratingly vague: "Hold her in the opposite arm when you feed her."
Or it will suddenly occur to me that the medications she was started on in January were dosed according to her weight then, when is roughly half what she weighs now. No one has followed up with us on those medications. So I'll start new games of phone tag, and it will turn out that yes, she should have had a new dose of the antibiotic. You know, the one that is protecting her kidneys from permanent damage. "Oh, didn't Dr. E--- talk to you about that?"
No. He didn't.
My stomach is churning even as I write. I can't find words adequate to describe the quality of the worry that I feel, all the time. I've written before that worry is like little rat teeth. But this worry--that I'll overlook or mismanage something crucial to my baby's health--is like a millstone sitting on my chest, slooowwly crushing the breath out of me. Because I've missed things before. I didn't recognize stridor for what it was. And when she was extra-sleepy that one weekend, no alarm bells went off -- I remember being happy that she was sleeping longer than normal, so I could get some sleep myself. Madelyn got early, effective treatment for her partially clogged shunt (sleepiness) and her brain stem compression (stridor) through sheer, dumb luck. Not through her mother's vigilance or knowledge.
It haunts me. I know it'll happen again...other than stridor, the symptoms we are to watch for are just too vague, and too similar to normal baby behavior, for even a watchful parent to easily catch (fussy, sleepy, spitting up, etc.) Here's the bit that drives me crazy: You'll be talking to a doctor, trying to describe how you think she's fussy, but not too fussy, and she's maybe a little sleepy but it's hard to tell, and she could be teething, but there was that weird sound she made.... The whole time you're expecting him to excuse himself and call the cops to report you for munchausen by proxy because this is the third visit to his office in a month.
He'll listen to your whole ramble and he'll say, earnestly, "Well, you know your baby. Do you think this is unusual for her? The Mom is usually right, you know!" And here he grins at you, to show that he's on your team.
Whereupon I want to pounce on him, grab him by the tie, and thump his head against the nearest hard surface, "Look, Doctor, I brought her in here to get your educated opinion, not to tell you mine. If I thought she had a shunt malfunction we'd be at the hospital, wouldn't we? Instead we're screwing around at the pediatrician's office because I don't know what I'm doing. So if you wouldn't mind not adding to my load of guilt and my doubts about my mothering ability? And if you could tell me whether my daughter needs another shunt revision surgery so I can get that on my calendar? Thanks."
Grrr.
I wish I had a ten-spot for every time some doctor has said some version of the above to me: that I know Madelyn best and so I should tell them when there's a serious issue. It's even printed in our spina bifida notebook they sent home from the hospital. On the face of it, it sounds great; the professionals are supposed to pay attention to the child's closest caregiver. But in practice, it's not so great. You go in with vague concerns and -- ping? pong! -- you get vague answers back. And as a bonus you get a reminder that if something is wrong and it isn't identified, it's your fault. Because of course, the mother ought to know.
And then there are the days when I must don my Billing Clerk hat: I actually laughed out loud when I got the hospital bill for our January adventure...before insurance grudgingly coughed up, we owed nearly twice the value of my first condominium. Or, my Scheduling Clerk hat: There is a yellow post-it on the side of my monitor that reads "M. FU ears, sleep, PT? Ask." It is in my handwriting. Hmm. My ways are deep, very deep, and none shall know them.
So, it's always something. And I worry. It's slowly getting to me...I'm irritable, scatterbrained (more than usual). I've started waking up with an excruciating headache every day, and I have finally twigged to the fact that I'm grinding my teeth at night. This has happened randomly in my life as a sort of exam-week thing. But Maddy's only six months old and I've got what, about twenty years worth of "exams"? I've got to learn to cope with this.
Tonight we're going to our first spina bifida parents support group. I am trying not to expect too much...I'll probably be too shy to vent much, at first. But I am dearly hoping somebody, sometime can tell me how to cope with this steady, grinding pressure without falling apart. I need help.
Thursday, May 11, 2006
Sweet Maddy
Our darling baby is thriving, and keeping Mommy and Daddy very busy. She wakes up every morning at about six a.m., a half an hour before my alarm is set, and starts making her sweet baby sounds. Not crying, just talking and singing to herself. So each day begins with Madelyn's little voice in my ear, and I have never been so eager to get out of bed and catch the first smile of the day. Maddy learned to smile about a month ago, and like all babies she smiles with her whole body. Her little arms wave and her eyes light up, and of course there's that gummy grin.
Medically we are just dealing with the everyday challenges. Like all spina bifida kids she has bowel and bladder issues that we're trying to figure out, and she has started physical therapy. Today she rolled over all by herself! Maddy hates "tummy time" so I wasn't surprised to see her finally roll over, just to get off her stomach. Right now we're working on building flexibility and strength in her neck; she's not as strong on the left as the right, and it's throwing her balance off as she tries to learn to sit up. It won't be long -- she does "baby crunches" all the time, she's so eager to be sitting up.
I asked about her legs and the therapist says she'll never been in a wheelchair! She might need some bracing for her ankles, but her legs are very strong and she can flex her feet and wiggle her toes. The therapist says we'll have to wait for more milestones before we see what her mobility problems might be.
In a couple of weeks we start solid food...and I cry every time I buy a new size of Huggies. It all goes so fast. And every day I love her more...it's laughable, that I ever worried I wouldn't love her because she came from a donor egg. She's my own sweet dear, and I can't imagine life without her. So many people have told me that she looks just like her Mommy, and I just give them a satisfied smile and say, "Thank you."
As for me, I'm getting back into the swing of things at work. I found a babysitter to come to our house every day and I work from here, so my commute is 20 seconds up the stairs, and I can go down and visit Maddy whenever I want. It works well because the family needs my salary, especially with Maddy's medical bills in the mix, yet I don't miss anything with her and I can supervise her catheterizations. I am incredibly lucky to have this arrangement. Someday I might want to go part-time because Maddy does have a lot of doctor appointments and I end up working nights to make up the time, but what we're doing is working for now.
My big goal now that I've got the Mommy routine more or less under control, is to lose some weight. But I am lazy and sedentary by nature, and I've got a husband who thinks I'm gorgeous at any weight -- yes, I do know how lucky I am! -- so it's hard to stay out of the Oreo package. Well, it's summer and we'll get out for walks. I'd like to be twenty pounds thinner by the end of August. (There, I have made a public commitment...we'll see how it goes!)
Medically we are just dealing with the everyday challenges. Like all spina bifida kids she has bowel and bladder issues that we're trying to figure out, and she has started physical therapy. Today she rolled over all by herself! Maddy hates "tummy time" so I wasn't surprised to see her finally roll over, just to get off her stomach. Right now we're working on building flexibility and strength in her neck; she's not as strong on the left as the right, and it's throwing her balance off as she tries to learn to sit up. It won't be long -- she does "baby crunches" all the time, she's so eager to be sitting up.
I asked about her legs and the therapist says she'll never been in a wheelchair! She might need some bracing for her ankles, but her legs are very strong and she can flex her feet and wiggle her toes. The therapist says we'll have to wait for more milestones before we see what her mobility problems might be.
In a couple of weeks we start solid food...and I cry every time I buy a new size of Huggies. It all goes so fast. And every day I love her more...it's laughable, that I ever worried I wouldn't love her because she came from a donor egg. She's my own sweet dear, and I can't imagine life without her. So many people have told me that she looks just like her Mommy, and I just give them a satisfied smile and say, "Thank you."
As for me, I'm getting back into the swing of things at work. I found a babysitter to come to our house every day and I work from here, so my commute is 20 seconds up the stairs, and I can go down and visit Maddy whenever I want. It works well because the family needs my salary, especially with Maddy's medical bills in the mix, yet I don't miss anything with her and I can supervise her catheterizations. I am incredibly lucky to have this arrangement. Someday I might want to go part-time because Maddy does have a lot of doctor appointments and I end up working nights to make up the time, but what we're doing is working for now.
My big goal now that I've got the Mommy routine more or less under control, is to lose some weight. But I am lazy and sedentary by nature, and I've got a husband who thinks I'm gorgeous at any weight -- yes, I do know how lucky I am! -- so it's hard to stay out of the Oreo package. Well, it's summer and we'll get out for walks. I'd like to be twenty pounds thinner by the end of August. (There, I have made a public commitment...we'll see how it goes!)
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