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.
Friday, May 26, 2006
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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