2012. The year after the big year, the one where we quit our jobs and moved to a different state for new ones, got pregnant, started fresh. Separate from our support systems and from much of what we’d known, the year we learned to rely on each other completely. The year the mister and I truly, truly became best friends. A lot happens in one spin around the sun.
It was the year where we were forced to admit to ourselves that Kid A’s struggles might have a name, and that name might be a diagnosis. He is brilliant (pretty much literally) and loving and caring and curious and loves comic books and his brothers more than just about anything. He has Asperger’s. And while we are still trying to figure out the ways his mind works, and how to give him the skills he needs to survive childhood and adolescence and thrive and grow into the man I know he will be, we will get there. This was the year we started trying.
It was the year Kid B turned three. For my money in the early developmental stages, three is the worst. It’s like you have this mini-teenager in the house, learning how to assert their independence, moody and temperamental. And for all that, despite not being my snuggler he is the one who in the morning is the emo-est kid in the history of emo if he doesn’t get to tuck in with me with milk and cartoons. He loves books and trains and dinosaurs and his brothers.
And then there is Kid C, the youngest, my baby. 2012 was the year of his birth, and afforded me the scariest moments of my life thus far. From the get-go he was set to make sure he was the last, the kid who turned cartwheels daily in utero and was breach until the last possible moment. I will never, ever forget what it felt like to hold this perfect baby in my arms and then, a week later at our first peds appointment, be told that he’d popped a flag on the newborn screen. Kid C carried at least one mutation for cystic fibrosis. Weeks of uncertainty (you can search the blog for the CRMS tag for the full story) and nine months later and we still don’t really know what lies ahead, but we’ve had a really healthy baby for those nine months and will just keep moving forward with that as our reality. He’s the best baby, all smiles and learning to walk and trying desperately to do everything that his brothers do already. Boy, am I in trouble there.
It was a year of searching, professionally, spiritually, and I don’t expect that to change much moving forward. It’s just how I’m wired, restless and ready and always looking for what’s next. Jury’s still out on whether it’s a desirable trait or a character flaw.
It was a year, it was a year with more good than bad, more promise than pain, more hope than misery and I guess when you do your accounting that’s what really matters, in the end. So so long, 2012, the year my family became complete. I don’t know what tomorrow will bring, but I’m ready for 2013.
12/31/12
12/20/12
merry, merry
I exchanged emails super early this morning with someone I have a great deal of admiration for, and was moved beyond the telling by the response I got, and I’ve been thinking, ever since, about the small ways in which we touch each other’s lives. In the midst of all the stories that break your heart are stories that remind you that most of us spend the small amount of time we have here trying to make things better, seeking love and laughter and joy in the world around us and the people that matter most.
Christmas can be really hard. There’s so much pressure, intentional or not, and I think sometimes that’s amplified being a parent. I didn’t grow up in a house of plenty, but I grew up in a house of enough. My parents weren’t wealthy, but I have so many amazing memories growing up, and while I’m sure they scraped and scrimped, and while I’m sure there were things I wanted that I didn’t get, I don’t remember a single one. I remember Santa coming to my grandma’s house on Garfield Avenue on Christmas Eve. I remember the magic of creeping out of bed at 5 in the morning on Christmas Day to see gifts that had miraculously appeared, always more gifts than there should have been, looking back.
But my favorite memory, hands down, the one Christmas that stands out heads and tails above the others, was when we lived in Madison. I couldn’t tell you how old I was, I’m guessing nine or ten, but we had just settled in to start opening presents when there was a knock on the front door. A city worker was standing there, looking both apologetic and wistful. A water main had busted, and they were turning off the water shortly. He wished us a Merry Christmas and headed up to the next house.
Present opening was delayed. My dad went to put coffee on right away, and my mom piled donuts on a plate while my sister and I bundled up. Up the street we went, her with the donuts in hand and me juggling cups filled with coffee, to where the men were working up the block. It was cold, I remember that, and I remember thinking how glad I was to be home, where it was warm.
I think about that every Christmas. There was no lecture from my parents about how it was the right thing to do, or important, they just did it, because here were people pulled away from their own celebrations, from their own family. Virtually all of the really important things I learned from my folks about being a parent weren’t things they ever stopped to explain to me. They just did them, and I learned from their example, and I was better because of what they taught me. Random acts before that was a thing. Random acts just because that’s what you did for your neighbor, whether they lived next door or on the other side of town.
There is so much good out there. So much. Light in the dark. Cup your hands around it, fan the flame, make it brighter. One cup of coffee at a time.
Christmas can be really hard. There’s so much pressure, intentional or not, and I think sometimes that’s amplified being a parent. I didn’t grow up in a house of plenty, but I grew up in a house of enough. My parents weren’t wealthy, but I have so many amazing memories growing up, and while I’m sure they scraped and scrimped, and while I’m sure there were things I wanted that I didn’t get, I don’t remember a single one. I remember Santa coming to my grandma’s house on Garfield Avenue on Christmas Eve. I remember the magic of creeping out of bed at 5 in the morning on Christmas Day to see gifts that had miraculously appeared, always more gifts than there should have been, looking back.
But my favorite memory, hands down, the one Christmas that stands out heads and tails above the others, was when we lived in Madison. I couldn’t tell you how old I was, I’m guessing nine or ten, but we had just settled in to start opening presents when there was a knock on the front door. A city worker was standing there, looking both apologetic and wistful. A water main had busted, and they were turning off the water shortly. He wished us a Merry Christmas and headed up to the next house.
Present opening was delayed. My dad went to put coffee on right away, and my mom piled donuts on a plate while my sister and I bundled up. Up the street we went, her with the donuts in hand and me juggling cups filled with coffee, to where the men were working up the block. It was cold, I remember that, and I remember thinking how glad I was to be home, where it was warm.
I think about that every Christmas. There was no lecture from my parents about how it was the right thing to do, or important, they just did it, because here were people pulled away from their own celebrations, from their own family. Virtually all of the really important things I learned from my folks about being a parent weren’t things they ever stopped to explain to me. They just did them, and I learned from their example, and I was better because of what they taught me. Random acts before that was a thing. Random acts just because that’s what you did for your neighbor, whether they lived next door or on the other side of town.
There is so much good out there. So much. Light in the dark. Cup your hands around it, fan the flame, make it brighter. One cup of coffee at a time.
12/11/12
until there was you.
Kid A’s seven in a few days, and he was born before I was doing this blogging thing. Here, anyway. So. For posterity, or something.
This is how it went. I was 28, miserable in my job, very recently single. And then I was 28, pregnant, and unemployed. My life was everything I never expected it to be.
I looked at all the angles. I didn’t sleep. I told pretty much no one.
I sat in the parking lot of a women’s clinic for two hours one mild May day, stared at the entrance and cried, deep, hiccupping sobs as my fingers clenched and unclenched on the door handle. I gave up, eventually, and drove away. I looked at my dwindling back account, empty of any real cushion like all the financial planners tell you should have because hey, I was bright and ambitious and successful and never, ever going to be stuck unexpectedly without a job, right? Hah.
I feverishly applied for jobs everywhere, anywhere. I had a couple months grace period on my insurance. I had a stomach that was going to start expanding at any moment and legal or not, every day made finding something permanent more difficult. I realized I’d made up my mind. I told my parents then. My dad was great that night, hugged me and told me everything would be okay and I thought maybe it would except that he barely spoke to me for the next six months. My mom was my mom, always there to hold my hand.
No job, no real prospects, enough money for one month’s more rent and I will never forget sitting on the stoop of the apartment I had in Madison watching a storm roll in. It started to rain and I stared up into it, hands over a belly that wasn’t yet swelling, and asked what it was I was supposed to do. I asked for help, screamed back at the thunder and the pouring rain, angry and scared and just done.
A few days later, I had a temp job offer that ended up being permanent in less than a month. I paid off the rest of my lease with my first paycheck and moved home.
I don’t ever remember not being scared. But I would lay there in bed at night and whisper to the creature starting to move under my fingertips, that alien bump, that everything was going to be okay. That I could make it so by force of will alone.
I had preeclampsia, with Kid A, terrible horrible swelling and headaches and a couple of bouts of bed rest and I was terrified that I was going to lose my job, one way or the other, but to their credit they stuck with me. I was just barely 38 weeks when I was induced. It was just my mom and me in the delivery room. Just her, holding my hand and feeding me ice chips. My sister and I were both c-sections – she’d never been through a natural birth and when A finally arrived it was she that cut the cord.
He looked at me with those big dark eyes and nestled in like he’s always belonged there and my heart broke all over again and healed in the next instant. My mom went home that night and it was just he and I, lonely and terrifying and I will never forget the kindness of the nurse who came in and sat with me, spent time teaching me how to nurse, encouraging me when I was uncertain.
I’d been Strep B positive so we had to stay in the hospital longer than I otherwise would have as a precaution and there were no visitors, for Kid A and I. And it sucked, but it was also perfect, in its own way, the two of us curled up together in the hospital bed and he watched me while I talked, those eyes following me even though everyone tells you they don’t really see all that well that young. And when we left, to return to my parents’ home, my father took one look at him and no matter how difficult everything was between us he’d found his new best friend and to this day they are so special to one another and I am grateful for that, too.
Everything changed, with him. All my dreams, all my ambitions, the person that I thought I was. And there have been so many moments, between then and now, that I think about all those little choices that led up to him becoming the center of who I am, and whatever I let go to become his mother pales in comparison to who I am when he looks at me.
In a few days he will be seven, and this is the story of his birth. It is also the story of mine.
This is how it went. I was 28, miserable in my job, very recently single. And then I was 28, pregnant, and unemployed. My life was everything I never expected it to be.
I looked at all the angles. I didn’t sleep. I told pretty much no one.
I sat in the parking lot of a women’s clinic for two hours one mild May day, stared at the entrance and cried, deep, hiccupping sobs as my fingers clenched and unclenched on the door handle. I gave up, eventually, and drove away. I looked at my dwindling back account, empty of any real cushion like all the financial planners tell you should have because hey, I was bright and ambitious and successful and never, ever going to be stuck unexpectedly without a job, right? Hah.
I feverishly applied for jobs everywhere, anywhere. I had a couple months grace period on my insurance. I had a stomach that was going to start expanding at any moment and legal or not, every day made finding something permanent more difficult. I realized I’d made up my mind. I told my parents then. My dad was great that night, hugged me and told me everything would be okay and I thought maybe it would except that he barely spoke to me for the next six months. My mom was my mom, always there to hold my hand.
No job, no real prospects, enough money for one month’s more rent and I will never forget sitting on the stoop of the apartment I had in Madison watching a storm roll in. It started to rain and I stared up into it, hands over a belly that wasn’t yet swelling, and asked what it was I was supposed to do. I asked for help, screamed back at the thunder and the pouring rain, angry and scared and just done.
A few days later, I had a temp job offer that ended up being permanent in less than a month. I paid off the rest of my lease with my first paycheck and moved home.
I don’t ever remember not being scared. But I would lay there in bed at night and whisper to the creature starting to move under my fingertips, that alien bump, that everything was going to be okay. That I could make it so by force of will alone.
I had preeclampsia, with Kid A, terrible horrible swelling and headaches and a couple of bouts of bed rest and I was terrified that I was going to lose my job, one way or the other, but to their credit they stuck with me. I was just barely 38 weeks when I was induced. It was just my mom and me in the delivery room. Just her, holding my hand and feeding me ice chips. My sister and I were both c-sections – she’d never been through a natural birth and when A finally arrived it was she that cut the cord.
He looked at me with those big dark eyes and nestled in like he’s always belonged there and my heart broke all over again and healed in the next instant. My mom went home that night and it was just he and I, lonely and terrifying and I will never forget the kindness of the nurse who came in and sat with me, spent time teaching me how to nurse, encouraging me when I was uncertain.
I’d been Strep B positive so we had to stay in the hospital longer than I otherwise would have as a precaution and there were no visitors, for Kid A and I. And it sucked, but it was also perfect, in its own way, the two of us curled up together in the hospital bed and he watched me while I talked, those eyes following me even though everyone tells you they don’t really see all that well that young. And when we left, to return to my parents’ home, my father took one look at him and no matter how difficult everything was between us he’d found his new best friend and to this day they are so special to one another and I am grateful for that, too.
Everything changed, with him. All my dreams, all my ambitions, the person that I thought I was. And there have been so many moments, between then and now, that I think about all those little choices that led up to him becoming the center of who I am, and whatever I let go to become his mother pales in comparison to who I am when he looks at me.
In a few days he will be seven, and this is the story of his birth. It is also the story of mine.
12/4/12
to the moon and back
When you first have a baby, you make a million promises. Someone hands you that wonderful, terrifying, amazing bundle of joy, lays him on your stomach and in those moments you make pacts with whomever is listening. I will keep you safe, you say. I will protect you. I will make a better life for you. I promise. I promise. You whisper it into his skin, into his hair, along his belly, behind his knees, between his toes as if those prayers will somehow be absorbed, form some layer between him and the rest of the world.
You can’t. Of course you can’t. You can only do your best and hope that the universe will do you a solid, which is asking a lot of an inanimate object. If you’re the praying sort, you do that, but that’s also asking a lot of a being that has His fingers on the pulse of, well, everything. Most of us hate being micromanaged anyway.
This has been a humbling year, as far as being a mother goes, in so many ways. There was Kid C’s arrival and the ensuing health scare in the weeks and months that followed, a cold, hard reminder of how little control I really have over anything. That no matter what I do, there are limits to what I can provide for my child.
But tonight I am thinking about Kid A, my fiery one. We have been through so much together, he and I. He is super smart, scary smart, test scores that are wicked high and a photographic memory which basically means that he sees or hears something once and he knows it, can repeat it back. Which is a blessing and a curse. Unless we’re talking about reciting episodes of “Super Hero Squad” from start to finish, ad nauseam. Then it’s mostly a curse.
Anyway, he is funny, and bright, and sensitive, curious about the world around him and as much as he wants to know about it there’s a part of him that is overwhelmed by it. He had a rough summer at camp - kids picking on him because he’s a little awkward, and he has a really hard time picking up social cues so where others might get a hint he just tries harder to be liked. Which, yeah, that backfires, generally speaking.
4K was awful, kindergarten (here in the boonies, after we’d moved) was mostly good, but first grade has been somewhat of a struggle. I feel so, so lucky to be in a district with such amazing teachers, to have him working with someone who recognizes a good kid with some cognitive hurdles, not behavioral ones. He goes under the tables when he gets overwhelmed, he takes a walk. He gets frustrated at himself when he doesn’t get it right the first time, he says things out of context and repeats them, to the confusion of those around him.
He saw a therapist when we were in Milwaukee, and we started back up as he was starting school this fall. The struggle has always been how to help him process what his brain is inputting, to make sense of those cues when his brain has already demonstrated just how capable it is. I don’t want him to be the butt of jokes, I don’t want him to be picked on. I’m not worried about the academic piece, not even remotely because he taught himself to read when he was three. But I lose sleep over the social piece, already, because kids can be real dicks, and it only gets worse the closer to puberty you get.
The bottom line is that we’re moving closer and closer to a diagnosis. Asperger’s, except for how the folks in charge of such things have apparently decided to get rid of the term and push all those kids into the Autism spectrum. We’re not quite there yet but so many of his behaviors are there it doesn’t take someone with multiple years of medical training to connect those dots and honestly it’s almost a relief.
Except for how it makes me feel inside. I’m his mom. I’m supposed to be able to fix things, to kiss a scrape or bandage a cut, tell a dumb joke to make him smile and this is going to be a challenge for both of us. All of us, our family.
We talk all the time about the good things, the great things, my kid is the best, etc., and all of those things are absolutely true but we all have those moments where we feel like a fraud for all the promises we make we may not be able to deliver on and I guess I’m just having a night where that feels uncomfortably close to the truth. I’m being reminded that I overreached, and that there’s only so much I can do.
Long post is long, and the bottom line, of course, is that everything I ever promised him in those moments after we met - hell, before we met, even, my hands over the swell of my stomach and my feet propped up on my bedroom wall - mean no less to me now than they did then. Probably more, seven years and two more kids later. We are parents, we are human, and I guess I am reminding myself that as much as I want to think otherwise I am more the cruise director than the captain on this ride, and I just have to do the best I can to get us all where we’re going, to ride those waves and have faith that if we’re a little banged up when we get to our destination that we’re better for it.
He is such a great kid. The best kid. I want the world for him. I want him to find his way, and I want the patience and faith to believe that it may take a little longer, but we’ll get there.
I will keep you safe. I will protect you. I will make a better life for you. I promise.
I promise.
You can’t. Of course you can’t. You can only do your best and hope that the universe will do you a solid, which is asking a lot of an inanimate object. If you’re the praying sort, you do that, but that’s also asking a lot of a being that has His fingers on the pulse of, well, everything. Most of us hate being micromanaged anyway.
This has been a humbling year, as far as being a mother goes, in so many ways. There was Kid C’s arrival and the ensuing health scare in the weeks and months that followed, a cold, hard reminder of how little control I really have over anything. That no matter what I do, there are limits to what I can provide for my child.
But tonight I am thinking about Kid A, my fiery one. We have been through so much together, he and I. He is super smart, scary smart, test scores that are wicked high and a photographic memory which basically means that he sees or hears something once and he knows it, can repeat it back. Which is a blessing and a curse. Unless we’re talking about reciting episodes of “Super Hero Squad” from start to finish, ad nauseam. Then it’s mostly a curse.
Anyway, he is funny, and bright, and sensitive, curious about the world around him and as much as he wants to know about it there’s a part of him that is overwhelmed by it. He had a rough summer at camp - kids picking on him because he’s a little awkward, and he has a really hard time picking up social cues so where others might get a hint he just tries harder to be liked. Which, yeah, that backfires, generally speaking.
4K was awful, kindergarten (here in the boonies, after we’d moved) was mostly good, but first grade has been somewhat of a struggle. I feel so, so lucky to be in a district with such amazing teachers, to have him working with someone who recognizes a good kid with some cognitive hurdles, not behavioral ones. He goes under the tables when he gets overwhelmed, he takes a walk. He gets frustrated at himself when he doesn’t get it right the first time, he says things out of context and repeats them, to the confusion of those around him.
He saw a therapist when we were in Milwaukee, and we started back up as he was starting school this fall. The struggle has always been how to help him process what his brain is inputting, to make sense of those cues when his brain has already demonstrated just how capable it is. I don’t want him to be the butt of jokes, I don’t want him to be picked on. I’m not worried about the academic piece, not even remotely because he taught himself to read when he was three. But I lose sleep over the social piece, already, because kids can be real dicks, and it only gets worse the closer to puberty you get.
The bottom line is that we’re moving closer and closer to a diagnosis. Asperger’s, except for how the folks in charge of such things have apparently decided to get rid of the term and push all those kids into the Autism spectrum. We’re not quite there yet but so many of his behaviors are there it doesn’t take someone with multiple years of medical training to connect those dots and honestly it’s almost a relief.
Except for how it makes me feel inside. I’m his mom. I’m supposed to be able to fix things, to kiss a scrape or bandage a cut, tell a dumb joke to make him smile and this is going to be a challenge for both of us. All of us, our family.
We talk all the time about the good things, the great things, my kid is the best, etc., and all of those things are absolutely true but we all have those moments where we feel like a fraud for all the promises we make we may not be able to deliver on and I guess I’m just having a night where that feels uncomfortably close to the truth. I’m being reminded that I overreached, and that there’s only so much I can do.
Long post is long, and the bottom line, of course, is that everything I ever promised him in those moments after we met - hell, before we met, even, my hands over the swell of my stomach and my feet propped up on my bedroom wall - mean no less to me now than they did then. Probably more, seven years and two more kids later. We are parents, we are human, and I guess I am reminding myself that as much as I want to think otherwise I am more the cruise director than the captain on this ride, and I just have to do the best I can to get us all where we’re going, to ride those waves and have faith that if we’re a little banged up when we get to our destination that we’re better for it.
He is such a great kid. The best kid. I want the world for him. I want him to find his way, and I want the patience and faith to believe that it may take a little longer, but we’ll get there.
I will keep you safe. I will protect you. I will make a better life for you. I promise.
I promise.
11/30/12
officer down
I have a million things I need to be doing - should be doing - but all I can think about is the family of the police officer killed last night in Cold Spring, about an hour north of us. He responded to a routine call, a welfare check, and was killed in an alley behind the apartment building he was responding to. They think he was ambushed, which was what I thought when I first read the initial reports.
His name was Tom Decker, and he’d been with Cold Spring/Richmond since 2006. He was a chief’s dream, according to his commanding officer. He was 31. He was married. He had four kids. And someone gunned him down in an alley, intentionally probably, though we don’t know yet why.
The media always likes to tell bad stories - stories of corruption or brutality and those are awful and should absolutely be brought to light and exposed but the true story is that most men and women in uniform are good and honest people doing hard, important work. They kiss their husbands and their wives, their kids, they go out the door and they do a job that puts them in danger pretty much every day. Those husbands and wives, those kids, they kiss their mom or dad and pray for a safe return and try not to let themselves imagine a world where there is an alternative ending.
They brought his body down 94 to the Ramsey County Medical Examiner this morning, a parade of police cars, lights and sirens clearing the way and making sure he wasn’t making the journey alone. One of the local stations had raw footage up on their website. I couldn’t watch it.
I’m not telling you to go hug a cop, but if you see one around maybe shake their hand and thank them for what they do? I know there are bad cops out there but I think about all the people in my husband’s department, all the good cops I know with huge hearts and the best of intentions and they run towards what we all run away from, every day. Every day.
Officer Decker was the 112th law enforcement officer slain in the line of duty this year. He was married. He had four kids. If you’re the praying type, maybe say one for all the people he left behind, the family and friends and coworkers and community, his whole law enforcement family, or spare a good thought. I know they could use it.
His name was Tom Decker, and he’d been with Cold Spring/Richmond since 2006. He was a chief’s dream, according to his commanding officer. He was 31. He was married. He had four kids. And someone gunned him down in an alley, intentionally probably, though we don’t know yet why.
The media always likes to tell bad stories - stories of corruption or brutality and those are awful and should absolutely be brought to light and exposed but the true story is that most men and women in uniform are good and honest people doing hard, important work. They kiss their husbands and their wives, their kids, they go out the door and they do a job that puts them in danger pretty much every day. Those husbands and wives, those kids, they kiss their mom or dad and pray for a safe return and try not to let themselves imagine a world where there is an alternative ending.
They brought his body down 94 to the Ramsey County Medical Examiner this morning, a parade of police cars, lights and sirens clearing the way and making sure he wasn’t making the journey alone. One of the local stations had raw footage up on their website. I couldn’t watch it.
I’m not telling you to go hug a cop, but if you see one around maybe shake their hand and thank them for what they do? I know there are bad cops out there but I think about all the people in my husband’s department, all the good cops I know with huge hearts and the best of intentions and they run towards what we all run away from, every day. Every day.
Officer Decker was the 112th law enforcement officer slain in the line of duty this year. He was married. He had four kids. If you’re the praying type, maybe say one for all the people he left behind, the family and friends and coworkers and community, his whole law enforcement family, or spare a good thought. I know they could use it.
11/22/12
with gratitude
Thanksgiving has always been my favorite holiday. The flavors of the day are totally my jam, and it’s really about family and food and there’s not a whole lot of external pressure to perform otherwise. And a day where you’re nudged in the direction of being reminded of how much you have in abundance, especially on the heels of what has become a consumer orgy of spending little more than a month away, is never a bad thing.
I am thankful for so much this year. For Kid C, our third and final, who scared us to our cores in the weeks after he was born but who is the happiest kid I know, and healthy and doing so, so well. For Kid B, who is in so many ways the stereotypical middle child but has a patented velociraptor shriek that guarantees he will never get lost in a crowd, who is my favorite snuggler and still wants to. For Kid A, who is still trying to find his footing with the world around him but is so scary smart and wise and compassionate.
For the husband, who is my steady rock and partner and best friend.
For my parents, still healthy, and my mom a year cancer-free, for my sister, my family immediate and extended all those amazing people in my life who may not be blood but are in all the ways that count. The best friends I could ever hope for. The Internet, for making it easier to keep those connections and to make new ones.
For jobs that allow us to provide for our family and be present in their lives, for a roof over our heads and always enough food on the table. For amazing childcare providers, a community that is dedicated to its children.
I am grateful for love, and laughter, and compassion, for hope, my faith and the faith of others, for all God’s blessings.
There are people coming later today, and two pounds of green beans to trim and I am grateful for that, too, for the gift of adopted family that leaves you no choice but to call them your own.
I’m grateful to you. Happy Thanksgiving.
I am thankful for so much this year. For Kid C, our third and final, who scared us to our cores in the weeks after he was born but who is the happiest kid I know, and healthy and doing so, so well. For Kid B, who is in so many ways the stereotypical middle child but has a patented velociraptor shriek that guarantees he will never get lost in a crowd, who is my favorite snuggler and still wants to. For Kid A, who is still trying to find his footing with the world around him but is so scary smart and wise and compassionate.
For the husband, who is my steady rock and partner and best friend.
For my parents, still healthy, and my mom a year cancer-free, for my sister, my family immediate and extended all those amazing people in my life who may not be blood but are in all the ways that count. The best friends I could ever hope for. The Internet, for making it easier to keep those connections and to make new ones.
For jobs that allow us to provide for our family and be present in their lives, for a roof over our heads and always enough food on the table. For amazing childcare providers, a community that is dedicated to its children.
I am grateful for love, and laughter, and compassion, for hope, my faith and the faith of others, for all God’s blessings.
There are people coming later today, and two pounds of green beans to trim and I am grateful for that, too, for the gift of adopted family that leaves you no choice but to call them your own.
I’m grateful to you. Happy Thanksgiving.
11/20/12
don't shoot the messenger
Or: why funeral directors aren’t your enemy.
Disclaimer: For six years I worked in funeral service, first in communications for the national association for funeral directors and then later for its foundation. I entered my employment with little knowledge of who or what funeral directors are beyond my limited personal experiences. I left with a deep and profound respect for the caliber of individual called (yes, called) to this profession and for the greater funeral service community. It was an experience that forever changed me.
Which is why I get so, so angry when I see pieces like the most recent one in Money Magazine, which you can find here. It’s the same old tired story, which is frustrating in and of itself. Funeral services cost money, quelle surprise. They always have. Some cost a lot of money. Most don’t. We live in a society where everything costs money, and I fail to understand the disconnect over why it is that those who work in funeral service should be denied the right to be compensated for their time and talents. Hospice costs money. Doctors? They cost a lot of money. But we don’t question these things. The average cost of a funeral is less than one pays for pretty much any new car. It’s less than some of my friends have paid for sound systems in their houses. Why are we up in arms over paying $10,000 to bury, you know, our parents, but don’t blink at wedding costs that are now averaging $27,000? That says more about who we are as a people than it does what funeral homes charge to cover their services.
We live in an increasingly transient society, and the relationships that used to be the natural extension of living in community are in many cases tenuous at best. One of the direct results of this is that in many communities the local family-owned funeral home is largely an unknown quantity. Where everyone used to know who to go to in their time of need, many families now have no ties in the community to help direct them to the best resources, and because we live in a culture where so many of us put off thinking about death until the last possible minute, we haven’t taken the time to do the research ourselves.
But here’s the thing: the responsibility for all that is on our shoulders. Death can come when you least expect it, yes, absolutely, but death is always coming. There is no other end to our stories. So to ignore the mechanics of that process and then rely on a complete stranger and our own grief to make weighty decisions which we may second guess once we’ve moved out of those initial stages demands some level of personal accountability from the decision-maker. But all that aside? The “fleecing of the grieving,” or however it’s phrased in whatever iteration of this tired old story is making the rounds today simply doesn’t happen with the frequency the media wants us to believe it does.
In the six years I worked for those working in funeral service I learned so much about death and dying and the people who hold our hands as we walk our loved ones through that last journey. They are compassionate, committed people who believe in what they’re doing or they wouldn’t be doing it. The hours are long, the demands both physical and mental are significant, and the pay? Honestly, it’s not that great. More often than not they go out of their way to help families have a meaningful last goodbye, no matter what the budget is. There’s no price tag for that kind of experience, and there’s no way to quantify the power of those moments.
But we are scared to death of dying, and so we continue to cast aspersions on those whose chosen work requires they embrace it. For all the time I worked for them, I can count on one hand the negative experiences I encountered, but they are, after all, human, and no one’s perfect. (See also, they weren’t NFDA members.)
You want my practical advice for how to handle end-of-life decision-making? Don’t wait ‘til the end of your life to make those decisions. I’m not telling you to plan out your funeral or pay for it advance. But get to know your local funeral directors, and understand the full picture of what it is they can do for you. Understand that there will be costs involved and, if you can, put aside some money for the same. Talk to the people you love broadly about your wishes, but leave the details up to them. It’s how they will remember you, after all.
These are good and honest people, working in a profession that gets so little respect given the enormity of the work they do every day and every night. They walk with the dead and they carry the living through what is arguably the most painful of transitions. They help husbands bury their wives, mothers bury their sons. Old men and baby girls and what the rest of us push away and leave to nightmares they tenderly care for and serve because it is what they are called to do.
Yes, I’m biased, but any reasonable person that takes the broader view should be, too. God bless them, for all they do that we cannot. I get it, I do, a lot of our anger and fear about death and dying ends up on the shoulders of those who work with it. So let’s write stories about that issue. Let’s talk about that and acknowledge that our discomfort is about so much more than money. It’s time we moved beyond that. There are real and beautiful and powerful stories to be told about funeral service. Scratch the surface, that’s all it takes to find them.
Disclaimer: For six years I worked in funeral service, first in communications for the national association for funeral directors and then later for its foundation. I entered my employment with little knowledge of who or what funeral directors are beyond my limited personal experiences. I left with a deep and profound respect for the caliber of individual called (yes, called) to this profession and for the greater funeral service community. It was an experience that forever changed me.
Which is why I get so, so angry when I see pieces like the most recent one in Money Magazine, which you can find here. It’s the same old tired story, which is frustrating in and of itself. Funeral services cost money, quelle surprise. They always have. Some cost a lot of money. Most don’t. We live in a society where everything costs money, and I fail to understand the disconnect over why it is that those who work in funeral service should be denied the right to be compensated for their time and talents. Hospice costs money. Doctors? They cost a lot of money. But we don’t question these things. The average cost of a funeral is less than one pays for pretty much any new car. It’s less than some of my friends have paid for sound systems in their houses. Why are we up in arms over paying $10,000 to bury, you know, our parents, but don’t blink at wedding costs that are now averaging $27,000? That says more about who we are as a people than it does what funeral homes charge to cover their services.
We live in an increasingly transient society, and the relationships that used to be the natural extension of living in community are in many cases tenuous at best. One of the direct results of this is that in many communities the local family-owned funeral home is largely an unknown quantity. Where everyone used to know who to go to in their time of need, many families now have no ties in the community to help direct them to the best resources, and because we live in a culture where so many of us put off thinking about death until the last possible minute, we haven’t taken the time to do the research ourselves.
But here’s the thing: the responsibility for all that is on our shoulders. Death can come when you least expect it, yes, absolutely, but death is always coming. There is no other end to our stories. So to ignore the mechanics of that process and then rely on a complete stranger and our own grief to make weighty decisions which we may second guess once we’ve moved out of those initial stages demands some level of personal accountability from the decision-maker. But all that aside? The “fleecing of the grieving,” or however it’s phrased in whatever iteration of this tired old story is making the rounds today simply doesn’t happen with the frequency the media wants us to believe it does.
In the six years I worked for those working in funeral service I learned so much about death and dying and the people who hold our hands as we walk our loved ones through that last journey. They are compassionate, committed people who believe in what they’re doing or they wouldn’t be doing it. The hours are long, the demands both physical and mental are significant, and the pay? Honestly, it’s not that great. More often than not they go out of their way to help families have a meaningful last goodbye, no matter what the budget is. There’s no price tag for that kind of experience, and there’s no way to quantify the power of those moments.
But we are scared to death of dying, and so we continue to cast aspersions on those whose chosen work requires they embrace it. For all the time I worked for them, I can count on one hand the negative experiences I encountered, but they are, after all, human, and no one’s perfect. (See also, they weren’t NFDA members.)
You want my practical advice for how to handle end-of-life decision-making? Don’t wait ‘til the end of your life to make those decisions. I’m not telling you to plan out your funeral or pay for it advance. But get to know your local funeral directors, and understand the full picture of what it is they can do for you. Understand that there will be costs involved and, if you can, put aside some money for the same. Talk to the people you love broadly about your wishes, but leave the details up to them. It’s how they will remember you, after all.
These are good and honest people, working in a profession that gets so little respect given the enormity of the work they do every day and every night. They walk with the dead and they carry the living through what is arguably the most painful of transitions. They help husbands bury their wives, mothers bury their sons. Old men and baby girls and what the rest of us push away and leave to nightmares they tenderly care for and serve because it is what they are called to do.
Yes, I’m biased, but any reasonable person that takes the broader view should be, too. God bless them, for all they do that we cannot. I get it, I do, a lot of our anger and fear about death and dying ends up on the shoulders of those who work with it. So let’s write stories about that issue. Let’s talk about that and acknowledge that our discomfort is about so much more than money. It’s time we moved beyond that. There are real and beautiful and powerful stories to be told about funeral service. Scratch the surface, that’s all it takes to find them.
11/15/12
in the desert. again.
It’s way too early. In from walking the dog, after a night of a lot of tossing and turning and sleep that was a battle with no clear victor, I tried to nap for a bit on the couch but that’s not happening either. It’s cold outside, now. We had our first real snow on Monday and I’m reasonably tolerant of the cold, kind of cold weather people, the husband and I. But the short block I walked the dog was bracing, and all I could think about as I tucked back into our home and turned up the heat in advance of little feet wandering out was all of the people out there, all of the families, for whom this is merely the beginning of a long, painful and dangerous stretch of time because where they lay their heads each night is uncertain.
I posted an article a few weeks back from The National Journal about the complete disregard both presidential campaigns had given to the issue of poverty. In a comment on Facebook an old friend who now teaches in a school district hit particularly hard by the recession wrote, “We have children at my school who cried when they found out there was no school on Thursday and Friday this week. They don’t have food at home and school is where they eat.”
I cried when I read it, the kind of crying where you bite the heel of your hand because you’re trying not to make any noise, and I’m not sure that the intermittent crying that has happened in the weeks subsequent isn’t because I haven’t been able to stop thinking about it.
A week ago Tuesday I stayed up into the wee hours watching election returns come in. The man I thought the better choice for our country was successful in his re-election campaign. Here in Minnesota, two constitutional amendments were defeated that were, in my opinion, serious threats to civil rights. I went to bed happy, and woke up tired and hopeful. Several sunrises later, I’m still bone-tired, and if my hope were a halo it would be tarnished and hanging a little off-kilter.
See, I had really, really hoped that in the days following the election some of the bitterness and divisiveness of the election would subside. People need time to grieve, absolutely, and people were passionate about this campaign in so many ways and for many there was a very real and profound sense of loss. But what I have not seen, what I am not seeing, are either side really reaching to embrace the other. There is so much absolute hatred out there, leveraging the anonymity of the Internet to magnify itself and grow unchecked. If the Devil exists, he created the technology for comment boards.
A friend of mine forwarded me a message from a pastor in Texas, who wrote to his congregation immediately after the election. His missive was not one of peacemaking, it was apocalyptic. America had broken its covenant with God-as-King. The End Times will be shortly upon us. Jesus will come again, and we’re all going to suffer a lot for the journey.
We heard a lot of talk on the campaign trail about the middle class, preserving a comfortable way of life, but I can’t say in anything I’ve ever studied that Jesus had much concern for the same. Now poverty, on the other hand, and unlike either presidential campaign, Jesus had a lot to say about. I know we like to hear what we like to hear, and cherry-picking the Bible seems to be a favorite pastime of both the religious right and the religious left, but if you look at the text, He wasn’t forgiving of people for whom protecting their comfortable lifestyle was the A1 priority. If you’re looking for some recognition for giving to charity, the Old Testament throws you some shade (irony!), but Jesus. Nope. In Matthew He tells us that if we wish to be complete, we should go and sell our possessions and give them to the poor, and go and follow Him.
It’s something I’ve been wrestling with for a long time, how to live in this world and be the kind of Christian that Jesus seems pretty clear He expects of His followers. I don’t have a lot of “stuff,” I’ve never placed any real value on accumulating the same. The stuff in my life that matters are the people that occupy it, the family I was born into and the family I’ve made over the years. But I have an abundance relative to so, so many and that weighs more heavily on me now than it ever has before. There are so many hungry, there are so many in need. They are strangers, they are my neighbors. But more and more we build walls around what is ours, literally and metaphysically, and shore up our foundations against “the other.”
At some point, it became more about not just providing enough for ourselves so that we have what we need, it became about having what we want. We don’t exist in a vacuum. The money we make, the things we accumulate - they’re not God’s reward for our virtue, but a pool of resources made possible by the work of many. If you have to vilify someone to justify having more than them, something has gone deeply, desperately wrong.
I was at an informal gathering Saturday night and it was lovely, absolutely. We ate delicious cheeses and drank spendy wines and there was so much we could have talked about - so many big and weighty and important things - but the conversations were safe and in my head I was screaming because I am so hungry for more. We are called to be more.
Maybe that pastor in Austin is right. Maybe the end is upon us, but I have to believe it is not because we have as a country, in his words, embraced socialism. If the Big Man Upstairs decides to call time on this little experiment called humanity I suspect It is because we have continued to isolate ourselves from one another, we have turned our backs on the hungry and the hurting, cast strangers as enemies and hardened our hearts against those who are not carbon copies of ourselves. I’m not using the global “we” here. I’m talking about myself, too We say prayers in our civic life that are meaningless platitudes, empty of intention because we cannot or will not do what is required of us to make good on them.
I have always been in something of a wrestling match with my faith. I have always had questions and been searching for answers, for as long as I can remember. But the last time I was this uncomfortable in my faith, we took separate vacations for a while. This time is different though, this time the discomfort is not in a perception that my faith has turned its back on me, but that I have turned my back on it. Jesus is pretty clear in what he asks of us, we who have so much. And responding to that call by working harder to protect what is in our own coffers seems willfully ignorant at best.
There are so many who are hungry and hurting and desperate and cold and they are reaching out for us. We are reaching out for each other. I am called, we are called. But for the life of me - God help me - I don’t know how to answer. I don’t know how to be who He asks me to be, and yet I can no longer pretend not to understand just how much He is asking.
Philippians 1, 3-5 says: I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy.
I do. Every day, with joy. No matter how far apart we are, literally or metaphysically, I hope you pray for me, too.
I posted an article a few weeks back from The National Journal about the complete disregard both presidential campaigns had given to the issue of poverty. In a comment on Facebook an old friend who now teaches in a school district hit particularly hard by the recession wrote, “We have children at my school who cried when they found out there was no school on Thursday and Friday this week. They don’t have food at home and school is where they eat.”
I cried when I read it, the kind of crying where you bite the heel of your hand because you’re trying not to make any noise, and I’m not sure that the intermittent crying that has happened in the weeks subsequent isn’t because I haven’t been able to stop thinking about it.
A week ago Tuesday I stayed up into the wee hours watching election returns come in. The man I thought the better choice for our country was successful in his re-election campaign. Here in Minnesota, two constitutional amendments were defeated that were, in my opinion, serious threats to civil rights. I went to bed happy, and woke up tired and hopeful. Several sunrises later, I’m still bone-tired, and if my hope were a halo it would be tarnished and hanging a little off-kilter.
See, I had really, really hoped that in the days following the election some of the bitterness and divisiveness of the election would subside. People need time to grieve, absolutely, and people were passionate about this campaign in so many ways and for many there was a very real and profound sense of loss. But what I have not seen, what I am not seeing, are either side really reaching to embrace the other. There is so much absolute hatred out there, leveraging the anonymity of the Internet to magnify itself and grow unchecked. If the Devil exists, he created the technology for comment boards.
A friend of mine forwarded me a message from a pastor in Texas, who wrote to his congregation immediately after the election. His missive was not one of peacemaking, it was apocalyptic. America had broken its covenant with God-as-King. The End Times will be shortly upon us. Jesus will come again, and we’re all going to suffer a lot for the journey.
We heard a lot of talk on the campaign trail about the middle class, preserving a comfortable way of life, but I can’t say in anything I’ve ever studied that Jesus had much concern for the same. Now poverty, on the other hand, and unlike either presidential campaign, Jesus had a lot to say about. I know we like to hear what we like to hear, and cherry-picking the Bible seems to be a favorite pastime of both the religious right and the religious left, but if you look at the text, He wasn’t forgiving of people for whom protecting their comfortable lifestyle was the A1 priority. If you’re looking for some recognition for giving to charity, the Old Testament throws you some shade (irony!), but Jesus. Nope. In Matthew He tells us that if we wish to be complete, we should go and sell our possessions and give them to the poor, and go and follow Him.
It’s something I’ve been wrestling with for a long time, how to live in this world and be the kind of Christian that Jesus seems pretty clear He expects of His followers. I don’t have a lot of “stuff,” I’ve never placed any real value on accumulating the same. The stuff in my life that matters are the people that occupy it, the family I was born into and the family I’ve made over the years. But I have an abundance relative to so, so many and that weighs more heavily on me now than it ever has before. There are so many hungry, there are so many in need. They are strangers, they are my neighbors. But more and more we build walls around what is ours, literally and metaphysically, and shore up our foundations against “the other.”
At some point, it became more about not just providing enough for ourselves so that we have what we need, it became about having what we want. We don’t exist in a vacuum. The money we make, the things we accumulate - they’re not God’s reward for our virtue, but a pool of resources made possible by the work of many. If you have to vilify someone to justify having more than them, something has gone deeply, desperately wrong.
I was at an informal gathering Saturday night and it was lovely, absolutely. We ate delicious cheeses and drank spendy wines and there was so much we could have talked about - so many big and weighty and important things - but the conversations were safe and in my head I was screaming because I am so hungry for more. We are called to be more.
Maybe that pastor in Austin is right. Maybe the end is upon us, but I have to believe it is not because we have as a country, in his words, embraced socialism. If the Big Man Upstairs decides to call time on this little experiment called humanity I suspect It is because we have continued to isolate ourselves from one another, we have turned our backs on the hungry and the hurting, cast strangers as enemies and hardened our hearts against those who are not carbon copies of ourselves. I’m not using the global “we” here. I’m talking about myself, too We say prayers in our civic life that are meaningless platitudes, empty of intention because we cannot or will not do what is required of us to make good on them.
I have always been in something of a wrestling match with my faith. I have always had questions and been searching for answers, for as long as I can remember. But the last time I was this uncomfortable in my faith, we took separate vacations for a while. This time is different though, this time the discomfort is not in a perception that my faith has turned its back on me, but that I have turned my back on it. Jesus is pretty clear in what he asks of us, we who have so much. And responding to that call by working harder to protect what is in our own coffers seems willfully ignorant at best.
There are so many who are hungry and hurting and desperate and cold and they are reaching out for us. We are reaching out for each other. I am called, we are called. But for the life of me - God help me - I don’t know how to answer. I don’t know how to be who He asks me to be, and yet I can no longer pretend not to understand just how much He is asking.
Philippians 1, 3-5 says: I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy.
I do. Every day, with joy. No matter how far apart we are, literally or metaphysically, I hope you pray for me, too.
11/7/12
forward
Last night, the voters here in Minnesota, my home, said no to voter ID, said no to a constitutional amendment to ban gay marriage. Last night, my president stood at a podium in Chicago and said, “I believe we can seize this future together because we are not as divided as our politics suggests. We’re not as cynical as the pundits believe. We are greater than the sum of our individual ambitions, and we remain more than a collection of red states and blue states. We are and forever will be the United States of America.” I am tired and, frankly, overwhelmed, but I am waking up hopeful, and no matter who you supported I hope you are, too. Good morning, America. Let’s get to work.
11/5/12
my election day prayer
So tomorrow is the big day, and my stomach is in knots. I don’t expect I will sleep much tonight, and tomorrow night’s going to be shot, too, no matter what the outcome.
Whatever happens, this is my election day prayer. Or maybe a prayer for the morning after? That probably makes sense. I pray that whoever wins, whoever holds the highest office of the land, whoever takes control of the House and the Senate, whoever rises to leadership in statehouses across this country, that they put aside partisanship for the sake of partisanship, that they come to the table ready to work with each other, not against each other, for the people they are elected to represent. Not half the people, not the majority of them, but all of them. I’m so tired of party ruling above all else, of political stalemates in which one party blames the other blames the other as we all fall further down the rabbit hole.
I love my country so much. I love its rich history, the things about America that make me want to celebrate, and the things that make me want to cry. I believe we can do better for each other and I want desperately – desperately – to believe we still want to. But it’s not just about who we cast a vote for every four years, or two years, every six. It’s about what we do in between and I hope and pray that the people that have worked so hard during this campaign cycle continue their campaigns. Not for an individual candidate (please God, no), but to do the work we so desperately need to do to help the people of this country get back on their feet again. We may philosophically disagree on the strategies to get there, but we all compromise in our daily lives and I hope beyond the telling of it that we can find that same space again in our public discourse and our public policy.
There are kids out there that are hungry, there are vets that are homeless, there are families that have done everything they were supposed to do who can’t even manage to make it paycheck-to-paycheck and we have to do better for them. For ourselves. Whatever happens tomorrow, whoever wins, I wish we could all commit to doing that work. To finding our common ground rather than drawing more lines in the sand.
Just like Mulder, I want to believe.
And with apologies to those for whom the prayer thing is over the top, a particularly apt one from the Book of Common Prayer:
O Lord our Governor, bless the leaders of our land, that we may be a people at peace among ourselves and a blessing to other nations of the earth.
Lord, keep this nation under your care.
To the President and members of the Cabinet, to Governors of States, Mayors of Cities, and to all in administrative authority, grant wisdom and grace in the exercise of their duties.
Give grace to your servants, O Lord.
To Senators and Representatives, and those who make our laws in States, Cities, and Towns, give courage, wisdom, and foresight to provide for the needs of all our people, and to fulfill our obligations in the community of nations.
Give grace to your servants, O Lord.
To the Judges and officers of our Courts give understanding and integrity, that human rights may be safeguarded and justice served.
Give grace to your servants, O Lord.
And finally, teach our people to rely on your strength and to accept their responsibilities to their fellow citizens, that they may elect trustworthy leaders and make wise decisions for the well-being of our society; that we may serve you
faithfully in our generation and honor your holy Name.
For yours is the kingdom, O Lord, and you are exalted as
head above all. Amen.
Amen.
Whatever happens, this is my election day prayer. Or maybe a prayer for the morning after? That probably makes sense. I pray that whoever wins, whoever holds the highest office of the land, whoever takes control of the House and the Senate, whoever rises to leadership in statehouses across this country, that they put aside partisanship for the sake of partisanship, that they come to the table ready to work with each other, not against each other, for the people they are elected to represent. Not half the people, not the majority of them, but all of them. I’m so tired of party ruling above all else, of political stalemates in which one party blames the other blames the other as we all fall further down the rabbit hole.
I love my country so much. I love its rich history, the things about America that make me want to celebrate, and the things that make me want to cry. I believe we can do better for each other and I want desperately – desperately – to believe we still want to. But it’s not just about who we cast a vote for every four years, or two years, every six. It’s about what we do in between and I hope and pray that the people that have worked so hard during this campaign cycle continue their campaigns. Not for an individual candidate (please God, no), but to do the work we so desperately need to do to help the people of this country get back on their feet again. We may philosophically disagree on the strategies to get there, but we all compromise in our daily lives and I hope beyond the telling of it that we can find that same space again in our public discourse and our public policy.
There are kids out there that are hungry, there are vets that are homeless, there are families that have done everything they were supposed to do who can’t even manage to make it paycheck-to-paycheck and we have to do better for them. For ourselves. Whatever happens tomorrow, whoever wins, I wish we could all commit to doing that work. To finding our common ground rather than drawing more lines in the sand.
Just like Mulder, I want to believe.
And with apologies to those for whom the prayer thing is over the top, a particularly apt one from the Book of Common Prayer:
O Lord our Governor, bless the leaders of our land, that we may be a people at peace among ourselves and a blessing to other nations of the earth.
Lord, keep this nation under your care.
To the President and members of the Cabinet, to Governors of States, Mayors of Cities, and to all in administrative authority, grant wisdom and grace in the exercise of their duties.
Give grace to your servants, O Lord.
To Senators and Representatives, and those who make our laws in States, Cities, and Towns, give courage, wisdom, and foresight to provide for the needs of all our people, and to fulfill our obligations in the community of nations.
Give grace to your servants, O Lord.
To the Judges and officers of our Courts give understanding and integrity, that human rights may be safeguarded and justice served.
Give grace to your servants, O Lord.
And finally, teach our people to rely on your strength and to accept their responsibilities to their fellow citizens, that they may elect trustworthy leaders and make wise decisions for the well-being of our society; that we may serve you
faithfully in our generation and honor your holy Name.
For yours is the kingdom, O Lord, and you are exalted as
head above all. Amen.
Amen.
10/22/12
saying goodbye to mcgovern.
Were it not for my father, I don’t suppose I would know much about George McGovern. As a child born in the late ‘70s, McGovern was, I suppose, little more than a civics footnote to most people by the time my peers and I were studying much in the way of American history.
But my father loved George McGovern. On Sunday, when I learned he had died, I sent my father a text, because I figured he would want to know. When he called me a few minutes later, I could hear emotion in his voice, however well contained.
I loved George McGovern because he was a patriot in the same vein I am, someone who loved his country as much because of its flaws as in spite of them. Someone who refused to give up on who we are called to be. When Robert Kennedy was once asked to name the most decent man in the United States Senate, he responded that McGovern was the only decent man in the body.
“I’m tired of old men dreaming up wars for young men to fight,” he famously said, a sentiment that is as true today as it was then.
“We reject the view of those who say, ‘America, love it or leave it,’” he said. “We reply, ‘Let us change it so we can love it more.’”
Laura Blumenfeld wrote a devastatingly sad piece for The Washington Post back in 1995, after his daughter Teresa died, in which she said of him:
“All his life, George McGovern has been a textbook liberal, either an idealist or a sap, depending on your politics. He believes that human beings are improvable, that good intentions translate into good policy. He believes it is possible to intervene to solve people’s problems. He does not believe, did not believe, that at some level life is just a cold, lonely fight.”
He was a man that knew tragedy, knew how addiction and mental illness could tear away at someone until all that was left was their bones, and then take away even that. And still, even after he lost two children to those struggles, he soldiered on, his life’s work trying to help America live up to all her promise.
I studied George McGovern because my father loved him. I loved him because he never apologized for what he believed, because though his shoulders were heavy he never stopped calling to our better angels. Defeated and rejected, resoundingly, still he pressed on, and asked us to try for more.
If you’ve never read his acceptance speech at the Democratic National Convention in 1972, you should. Forty years later, his call still goes unanswered.
“Together we will call America home to the ideals that nourished us from the beginning. From secrecy and deception in high places; come home, America. From military spending so wasteful that it weakens our nation; come home, America.
From the entrenchment of special privileges in tax favoritism; from the waste of idle lands to the joy of useful labor; from the prejudice based on race and sex; from the loneliness of the aging poor and the despair of the neglected sick — come home, America.
Come home to the affirmation that we have a dream.
Come home to the conviction that we can move our country forward.”
Come home, America. Godspeed, Senator McGovern.
But my father loved George McGovern. On Sunday, when I learned he had died, I sent my father a text, because I figured he would want to know. When he called me a few minutes later, I could hear emotion in his voice, however well contained.
I loved George McGovern because he was a patriot in the same vein I am, someone who loved his country as much because of its flaws as in spite of them. Someone who refused to give up on who we are called to be. When Robert Kennedy was once asked to name the most decent man in the United States Senate, he responded that McGovern was the only decent man in the body.
“I’m tired of old men dreaming up wars for young men to fight,” he famously said, a sentiment that is as true today as it was then.
“We reject the view of those who say, ‘America, love it or leave it,’” he said. “We reply, ‘Let us change it so we can love it more.’”
Laura Blumenfeld wrote a devastatingly sad piece for The Washington Post back in 1995, after his daughter Teresa died, in which she said of him:
“All his life, George McGovern has been a textbook liberal, either an idealist or a sap, depending on your politics. He believes that human beings are improvable, that good intentions translate into good policy. He believes it is possible to intervene to solve people’s problems. He does not believe, did not believe, that at some level life is just a cold, lonely fight.”
He was a man that knew tragedy, knew how addiction and mental illness could tear away at someone until all that was left was their bones, and then take away even that. And still, even after he lost two children to those struggles, he soldiered on, his life’s work trying to help America live up to all her promise.
I studied George McGovern because my father loved him. I loved him because he never apologized for what he believed, because though his shoulders were heavy he never stopped calling to our better angels. Defeated and rejected, resoundingly, still he pressed on, and asked us to try for more.
If you’ve never read his acceptance speech at the Democratic National Convention in 1972, you should. Forty years later, his call still goes unanswered.
“Together we will call America home to the ideals that nourished us from the beginning. From secrecy and deception in high places; come home, America. From military spending so wasteful that it weakens our nation; come home, America.
From the entrenchment of special privileges in tax favoritism; from the waste of idle lands to the joy of useful labor; from the prejudice based on race and sex; from the loneliness of the aging poor and the despair of the neglected sick — come home, America.
Come home to the affirmation that we have a dream.
Come home to the conviction that we can move our country forward.”
Come home, America. Godspeed, Senator McGovern.
9/25/12
my imperfect offering
We say grace every night before dinner in our house. Kid B and Kid A argue about who gets to lead, and usually end up saying it in unison. It’s the same grace I said as a child, though A has added a closing “peace” to it, a brushing of hands before the breaking of bread that I really, really love. We say our prayers before bedtime, and it’s standard, too. “Now I lay me down to sleep,” though there is no mention of dying before waking. We ask God to bless our family, immediate and extended, and at the end there’s a place for special intentions.
I like praying. There is a comfort to it. I love praying the Rosary, precisely because of how meditative it is, how cleansing. But I would be lying if I didn’t say that the act of praying, at least in some of its iterations, makes me very uncomfortable.
When we were in limbo with Kid C, waiting those two weeks between the Newborn Screen flag and the sweat test, I prayed a lot. A lot. I prayed for strength, and clarity. For faith, and trust. I prayed that no matter what the outcome was, that I could be the mother that my son would need, my sons, the partner my husband would need. I couldn’t pray for his test to come back negative.
I went around in circles about that last bit with a few friends who are ordained. I believe in asking for it all, one of them said. Lay out your intentions, put them out there for the universe to hear. I get that, I appreciate it. But as I agonized, those long days and longer nights, when the dark makes everything so much scarier, I still couldn’t get there. I couldn’t ask for something because I couldn’t get my head around a God that, for lack of a better word, micromanages in that way.
See, I have cried tears of joy with friends who have come through illness and strife and emerged on the other side healthy and joy. I have cried tears of sorrow with others who have lost partners or children. They are all, to a person, good and decent people and rather than pray to a God that favors one over the other, I choose to pray to a God who listens, and sits, and waits with me, with them. This God is that little flicker of light that breaks up the darkness. A God that is as much the question itself as the answer.
It’s a really personal thing, prayer, what you put into it, what you get out of it, even in community. Is it okay to ask for things, to be specific? Is it a sign of lesser favor, if those prayers go unanswered or is it just that we lack the perspective to see that they do? And now I am rambling, searching for some way to tie this up neatly but I’m not sure you can. Do you pray? What do you pray for?
I like praying. There is a comfort to it. I love praying the Rosary, precisely because of how meditative it is, how cleansing. But I would be lying if I didn’t say that the act of praying, at least in some of its iterations, makes me very uncomfortable.
When we were in limbo with Kid C, waiting those two weeks between the Newborn Screen flag and the sweat test, I prayed a lot. A lot. I prayed for strength, and clarity. For faith, and trust. I prayed that no matter what the outcome was, that I could be the mother that my son would need, my sons, the partner my husband would need. I couldn’t pray for his test to come back negative.
I went around in circles about that last bit with a few friends who are ordained. I believe in asking for it all, one of them said. Lay out your intentions, put them out there for the universe to hear. I get that, I appreciate it. But as I agonized, those long days and longer nights, when the dark makes everything so much scarier, I still couldn’t get there. I couldn’t ask for something because I couldn’t get my head around a God that, for lack of a better word, micromanages in that way.
See, I have cried tears of joy with friends who have come through illness and strife and emerged on the other side healthy and joy. I have cried tears of sorrow with others who have lost partners or children. They are all, to a person, good and decent people and rather than pray to a God that favors one over the other, I choose to pray to a God who listens, and sits, and waits with me, with them. This God is that little flicker of light that breaks up the darkness. A God that is as much the question itself as the answer.
It’s a really personal thing, prayer, what you put into it, what you get out of it, even in community. Is it okay to ask for things, to be specific? Is it a sign of lesser favor, if those prayers go unanswered or is it just that we lack the perspective to see that they do? And now I am rambling, searching for some way to tie this up neatly but I’m not sure you can. Do you pray? What do you pray for?
9/17/12
what would joe biden do?
Last week Friday, Kid A and I were lucky enough to get the chance to head to my alma mater to hear Dr. Jill Biden speak at a Twin Cities campaign stop. It was mostly college kids, a smattering of other supporters, and my kiddo, the youngest in the room by more than a decade, if I had to guess.
We got a couple of curious glances from folks, which wasn’t unexpected. He’s only six, and much of what she spoke of went over his head. But he’s a smart kid, curious and sensitive, and he understands a lot more than people give him credit for. On the drive from his school we talked about education and why it was so important, how much it costs and how President Obama and Vice President Biden were working to make sure that learning continued to be accessible. He gets that. We talked about healthcare, and how thanks to the president his baby brother’s preexisting condition won’t keep him from getting the care he needs. A understood that, too.
It’s not entirely new to him. He helped me campaign in 2008. In 2010, during the Wisconsin gubernatorial election, I actually got a phone call from the elementary school because in his earnestness to remind his classmates and anyone who might listen (the school was a polling place), he encouraged them, when unsure, to ask themselves, “What would Joe Biden do?” I thought it was hilarious, the school was less amused.
It comes as no surprise, then, to know that we are big fans of the Obamas, big fans of the Bidens. I am a big fan of including your kids early in the political process, no matter what side of the aisle you sit on. We took the entire family to Madison to protest in January of last year, after Governor Walker decided that his executive authority was a bulldozer by which he intended to flatten the state we loved. The kids come voting with us.
We talk about politics, and current events. He’s six, and his brothers are three and six months and have less capacity for awareness, obviously, but they learn by watching. What is important to us makes a difference for them.
See, it was how I was raised. One of my earliest memories is doorknocking for then-Wisconsin Governor Tony Earl in his (failed) reelection campaign. We talked about the news at the dinner table every night. I was encouraged to care about what was happening in my city, in my state, my country. The world. When there was an election, we went down to the National Guard Armory. They still had big machines back then, and I can remember pulling with all my might on the big lever that drew the curtain closed, watching my parents flick switches and being truly excited that someday it would be my turn. In second grade we formed a peace club, my best friend and I. We wrote letters to President Reagan calling for nuclear disarmament. I didn’t think it was unusual or exceptional at the time. Honestly, I still don’t.
Is there such a thing as too young? I don’t think so. Because in raising me, my parents raised a child who was engaged in the political process almost from the time I could talk. I understood why it mattered. I appreciated the power of the vote, and the importance of being an informed voter. And thirty-two years after knocking on doors down our street on Jacobson Avenue in Madison, I can’t think of a single general election I’ve missed, and I can count primaries on one hand.
We live in a country where our voter turnout percentages are damn near shameful. We have an electorate that is frequently mocked by late night television programming because they can’t identify their vice president in a lineup. We need to be doing more with our kids, not less. My parents didn’t indoctrinate me into a specific ideology, although we share many political beliefs. But they did teach me that as part of my birthright as an American citizen I had certain responsibilities that generations have fought and died to protect, and I take that very seriously. I take passing on that knowledge to my own boys very seriously.
So find a cause that matters. Volunteer with your kids. Talk about what happens on their 18th birthday, and why they don’t have to wait to get involved until they can cast a ballot. Get them excited now, before conventional wisdom and popular culture tells them it’s only cool to be indifferent.
On the ride home, A was vibrating with excitement. He talked about our visit to Washington, DC, about Dr. Biden and her husband, who we think is the coolest, pretty much, and about how important the election is. He is six, but he gets it. We can’t be afraid to talk to our kids about politics, because they’re next in line for that torch, right? What happens in November affects him, and even if he can’t change the outcome, he still gets a voice. A life lesson for him, an important reminder for a pretty proud mama, too.
We got a couple of curious glances from folks, which wasn’t unexpected. He’s only six, and much of what she spoke of went over his head. But he’s a smart kid, curious and sensitive, and he understands a lot more than people give him credit for. On the drive from his school we talked about education and why it was so important, how much it costs and how President Obama and Vice President Biden were working to make sure that learning continued to be accessible. He gets that. We talked about healthcare, and how thanks to the president his baby brother’s preexisting condition won’t keep him from getting the care he needs. A understood that, too.
It’s not entirely new to him. He helped me campaign in 2008. In 2010, during the Wisconsin gubernatorial election, I actually got a phone call from the elementary school because in his earnestness to remind his classmates and anyone who might listen (the school was a polling place), he encouraged them, when unsure, to ask themselves, “What would Joe Biden do?” I thought it was hilarious, the school was less amused.
It comes as no surprise, then, to know that we are big fans of the Obamas, big fans of the Bidens. I am a big fan of including your kids early in the political process, no matter what side of the aisle you sit on. We took the entire family to Madison to protest in January of last year, after Governor Walker decided that his executive authority was a bulldozer by which he intended to flatten the state we loved. The kids come voting with us.
We talk about politics, and current events. He’s six, and his brothers are three and six months and have less capacity for awareness, obviously, but they learn by watching. What is important to us makes a difference for them.
See, it was how I was raised. One of my earliest memories is doorknocking for then-Wisconsin Governor Tony Earl in his (failed) reelection campaign. We talked about the news at the dinner table every night. I was encouraged to care about what was happening in my city, in my state, my country. The world. When there was an election, we went down to the National Guard Armory. They still had big machines back then, and I can remember pulling with all my might on the big lever that drew the curtain closed, watching my parents flick switches and being truly excited that someday it would be my turn. In second grade we formed a peace club, my best friend and I. We wrote letters to President Reagan calling for nuclear disarmament. I didn’t think it was unusual or exceptional at the time. Honestly, I still don’t.
Is there such a thing as too young? I don’t think so. Because in raising me, my parents raised a child who was engaged in the political process almost from the time I could talk. I understood why it mattered. I appreciated the power of the vote, and the importance of being an informed voter. And thirty-two years after knocking on doors down our street on Jacobson Avenue in Madison, I can’t think of a single general election I’ve missed, and I can count primaries on one hand.
We live in a country where our voter turnout percentages are damn near shameful. We have an electorate that is frequently mocked by late night television programming because they can’t identify their vice president in a lineup. We need to be doing more with our kids, not less. My parents didn’t indoctrinate me into a specific ideology, although we share many political beliefs. But they did teach me that as part of my birthright as an American citizen I had certain responsibilities that generations have fought and died to protect, and I take that very seriously. I take passing on that knowledge to my own boys very seriously.
So find a cause that matters. Volunteer with your kids. Talk about what happens on their 18th birthday, and why they don’t have to wait to get involved until they can cast a ballot. Get them excited now, before conventional wisdom and popular culture tells them it’s only cool to be indifferent.
On the ride home, A was vibrating with excitement. He talked about our visit to Washington, DC, about Dr. Biden and her husband, who we think is the coolest, pretty much, and about how important the election is. He is six, but he gets it. We can’t be afraid to talk to our kids about politics, because they’re next in line for that torch, right? What happens in November affects him, and even if he can’t change the outcome, he still gets a voice. A life lesson for him, an important reminder for a pretty proud mama, too.
9/12/12
the last time
I just now understand that in anticipating my son’s “firsts,” I’ve forgotten to appreciate what he’s left behind. The firsts are monumental, celebrated and captured on film. I reveled in Little Dude’s first steps, jotted down his first words and am prepared to save lost teeth. There isn’t a first I haven’t recorded in some way. I’ve paid less attention to his “lasts.” I’ve ignored the finality that comes with moving from one stage to another.
My boys are spaced far enough apart - 6, 3, and 6 months, that I have a greater appreciation for this, I think, or maybe just a greater understanding of how quickly they go from one phase to the next. Each of my own little dudes is different, though, and while Bean always wandered into our room early in the mornings to be pulled in under the blankets and snuggled, Bruiser stays in his bed until one of us comes to scoop him up, more often than not. I don’t know which kind Big Red will be, but I know that I cherish every moment I get patted on the face or told how pretty I am or find them clambering over each other to see who can snuggle closer on the couch.
Big Red is our last, our baby. That was always the plan, though had we been in an economic position to leave it up to chance or God or whatever you believe, I think after we found out I was a carrier for CF he would have been anyway. He is growing so incredibly fast it takes my breath away. And what hit me hardest, at three months and again at six, was packing up the clothes that were too small, folding them carefully and tucking them into bags to be donated. Just clothes, but some of them Bean wore, some of them were Bruiser’s, a few belonged to both and the realization that I wasn’t storing them away for a future brother was far more painful than I could have anticipated. I cried, and I’m not a crier. I grieved for what will never be again.
It goes so fast. We all say it, and yes, it’s cliche, but that makes it no less true. We hold on to what we can, for as long as we can, gripping those memories to us white-knuckled tight.
My boys are spaced far enough apart - 6, 3, and 6 months, that I have a greater appreciation for this, I think, or maybe just a greater understanding of how quickly they go from one phase to the next. Each of my own little dudes is different, though, and while Bean always wandered into our room early in the mornings to be pulled in under the blankets and snuggled, Bruiser stays in his bed until one of us comes to scoop him up, more often than not. I don’t know which kind Big Red will be, but I know that I cherish every moment I get patted on the face or told how pretty I am or find them clambering over each other to see who can snuggle closer on the couch.
Big Red is our last, our baby. That was always the plan, though had we been in an economic position to leave it up to chance or God or whatever you believe, I think after we found out I was a carrier for CF he would have been anyway. He is growing so incredibly fast it takes my breath away. And what hit me hardest, at three months and again at six, was packing up the clothes that were too small, folding them carefully and tucking them into bags to be donated. Just clothes, but some of them Bean wore, some of them were Bruiser’s, a few belonged to both and the realization that I wasn’t storing them away for a future brother was far more painful than I could have anticipated. I cried, and I’m not a crier. I grieved for what will never be again.
It goes so fast. We all say it, and yes, it’s cliche, but that makes it no less true. We hold on to what we can, for as long as we can, gripping those memories to us white-knuckled tight.
9/11/12
69,379,200 breaths
Trying to remember you
is like carrying water
in my hands a long distance
across sand. Somewhere
people are waiting.
They have drunk nothing for days.
- Stephen Dobyn
69,379,200 breaths. And the horrible, beautiful miracle of life is that it goes on, with every rise and fall of the chest.
is like carrying water
in my hands a long distance
across sand. Somewhere
people are waiting.
They have drunk nothing for days.
- Stephen Dobyn
69,379,200 breaths. And the horrible, beautiful miracle of life is that it goes on, with every rise and fall of the chest.
it was a good day
It started here.
Big Red’s 6-month checkup with his team at Children’s. We were anxious to see if the Tobi had done its job, after the Cipro hadn’t, if the flora in his throat had gone its merry way to Hell. The good news, the great news, is that his throat cultures came back looking great. His lungs look awesome, he’s growing and we couldn’t ask for better. Those names up there, those are our heroes. They have made the scary so much less so, and as fond as I am of our doc I am not at all disappointed that if our luck holds Big Red won’t need to be seen again until January.
We're pretty happy about that.
Big Red’s 6-month checkup with his team at Children’s. We were anxious to see if the Tobi had done its job, after the Cipro hadn’t, if the flora in his throat had gone its merry way to Hell. The good news, the great news, is that his throat cultures came back looking great. His lungs look awesome, he’s growing and we couldn’t ask for better. Those names up there, those are our heroes. They have made the scary so much less so, and as fond as I am of our doc I am not at all disappointed that if our luck holds Big Red won’t need to be seen again until January.We're pretty happy about that.
8/9/12
marry the man today
Look, I am not the person people come to for marriage advice. If you are looking for marriage advice? Esquire’s got lessons from eleven lifers [over here]. Try that. It seems like a good place to start.
There’s no such thing as a perfect marriage. There are beautiful, vibrant, healthy marriages, lots of them, and lots of abject, miserable failures, and a lot of people that semi-comfortably occupy the space in between. My parents didn’t (don’t?I mean, they’re still kicking it) have a perfect marriage and I think ultimately watching them as they rode the highs and lows of a half-lifetime of making space for each other was a good thing for me. Watching them dig in their heels and fight for better or worse showed me that you take the long view, for things that matter.
That’s pretty good advice, I think. Somebody else once told me that you could go to bed mad, it happens, but don’t leave the house without saying “I love you.” I think that one’s pretty good, too.
Marriage doesn’t resemble a Disney movie, and it has nothing at all in common with romantic comedies featuring Katherine Heigl, or Sandra Bullock, although the one with Steve Carrell had some good lines.
Sometimes it can be natural as breathing but. Marriage is really hard, okay? It takes a lot of work so if you’re feeling kind of lazy about the whole thing maybe wait a little while. You can be lazy on Saturday mornings sometimes, if you’re lucky, but you’re talking about making a commitment that doesn’t care if you’re tired or cranky or angry at the world. Sometimes the best thing about marriage is having someone who has your back when you are all those things. Or, alternatively, someone who kicks you in the ass and tells you it’s time to get over yourself. Yay, marriage.
Find someone who is going to be your partner, in all things. You have to like them, you know? The whole point of the endeavor is to ride this relationship train til the end of your days so the chemistry has to be beyond how you two look in the mirror together. Find someone who will be steady for you when the world is dizzy-making. Who makes you giggle inappropriately on occasion. In church. Who isn’t afraid to cry in front of you, either.
If you can find someone who loves you for who you are, but makes you want to be better all the same? Yeah, that’s the one.
Four years ago today I got married. It was forever ago, it was just yesterday. (Protip: If you want to remember any of it, videotape it. We didn’t. I don’t actually remember a damn thing from the ceremony.) I married my husband because he is all of the above. Because I got to see how he would be as a father and that made me fall in love even more. It has not often been easy, because I don’t think that word is fair when you talk about combining lives and making new ones, but it has been worth it. We are on this adventure together, the two of us, the five of us now, our zombie-fighting pirate crew of a family.
Marry the man who looks at you like this:
Marry your best friend. I did. Happy anniversary, boo. Here’s to many more.
There’s no such thing as a perfect marriage. There are beautiful, vibrant, healthy marriages, lots of them, and lots of abject, miserable failures, and a lot of people that semi-comfortably occupy the space in between. My parents didn’t (don’t?I mean, they’re still kicking it) have a perfect marriage and I think ultimately watching them as they rode the highs and lows of a half-lifetime of making space for each other was a good thing for me. Watching them dig in their heels and fight for better or worse showed me that you take the long view, for things that matter.
That’s pretty good advice, I think. Somebody else once told me that you could go to bed mad, it happens, but don’t leave the house without saying “I love you.” I think that one’s pretty good, too.
Marriage doesn’t resemble a Disney movie, and it has nothing at all in common with romantic comedies featuring Katherine Heigl, or Sandra Bullock, although the one with Steve Carrell had some good lines.
Sometimes it can be natural as breathing but. Marriage is really hard, okay? It takes a lot of work so if you’re feeling kind of lazy about the whole thing maybe wait a little while. You can be lazy on Saturday mornings sometimes, if you’re lucky, but you’re talking about making a commitment that doesn’t care if you’re tired or cranky or angry at the world. Sometimes the best thing about marriage is having someone who has your back when you are all those things. Or, alternatively, someone who kicks you in the ass and tells you it’s time to get over yourself. Yay, marriage.
Find someone who is going to be your partner, in all things. You have to like them, you know? The whole point of the endeavor is to ride this relationship train til the end of your days so the chemistry has to be beyond how you two look in the mirror together. Find someone who will be steady for you when the world is dizzy-making. Who makes you giggle inappropriately on occasion. In church. Who isn’t afraid to cry in front of you, either.
If you can find someone who loves you for who you are, but makes you want to be better all the same? Yeah, that’s the one.
Four years ago today I got married. It was forever ago, it was just yesterday. (Protip: If you want to remember any of it, videotape it. We didn’t. I don’t actually remember a damn thing from the ceremony.) I married my husband because he is all of the above. Because I got to see how he would be as a father and that made me fall in love even more. It has not often been easy, because I don’t think that word is fair when you talk about combining lives and making new ones, but it has been worth it. We are on this adventure together, the two of us, the five of us now, our zombie-fighting pirate crew of a family.
Marry the man who looks at you like this:
Marry your best friend. I did. Happy anniversary, boo. Here’s to many more.8/7/12
outside it's America
I went out for lunch today, met a sales rep for one of the local business pubs for lunch at a trendy restaurant in a sort-of trendy suburban pedestrian mall. I was sitting at the stoplight waiting to turn, minding my own business when a guy pulled up next to me, flipped me off and called me a “n*gger lover” before speeding off, leaving me open-mouthed and stunned.
I have four bumper stickers on the back of my SUV. One refers to my status as an alumnus of Macalester College, one is the insignia of a band I have long favored, one is the Wisconsin blue fist made famous (or infamous, depending on your interpretation) during the protests of the last year, and the last is an Obama Biden sticker. It doesn’t take a lot of intelligence to guess what this individual must have been referring to when he decided to seek my attention.
It took a gentle tap on the horn from the car behind me to get me moving again, at least physically, but mentally I’m still stuck at that light, staring at that car pulling away from me, dumbfounded.
What are we doing here, exactly? How far from any attempt however cursory at civil discourse have we fallen? What the hell is up, America?
Here’s the thing: my political beliefs are aligned most closely to the Democratic party. I believe, after a lot of research and soul-searching over the years, that it is the party that stands more often than not on the right side of history. I have voted for Republicans before. I have voted for people who didn’t claim any political affiliation whatsoever. I voted for the person I believed was best for the job.
Here’s the other thing: I’ve known many, many good and decent people whose political beliefs were entirely opposite mine. I count them among my close friends and family. We have intense conversations, we disagree vehemently, we break bread and move forward, together, without thinking less of the other person because our approaches to problem-solving the many and scary problems facing our cities and states and country, our world, are different.
Somewhere between the micro and the macro, however, we lose all sense of responsibility for our words and actions. And in doing so, we have eroded with terrifying speed an already crumbling foundation for political and civil discourse. We see it in Congress, we see it in statehouses, in the anonymity of the Internet. Apparently we are now seeing it at street corners.
I’m sure I’ve been guilty of the same. Maybe not in words as violent or ugly as those, but I know I’ve maligned the whole, used generalities out of laziness. I can’t do it anymore. I won’t. I am exhausted by the invective around me, the circular rhetoric that appeals to nothing more than base emotion and certainly not our better angels. And man, we haven’t even gotten into the thick of the campaign season yet.
I have seen this week what hate breeds, in a temple in my home state, a few minutes away from where I used to lay my head at night. I don’t know much, but I do know you don’t win hearts by spewing poison. My first grader could tell you that.
Wouldn’t it be nice if, before you referred to our president as trash you thought about all the people in your life who respect the man, and how they might feel about that? Would you paint them with the same brush? If before you made some offhand remark about those idiotic and evil Republicans you thought about your uncle, who has never voted for a Democrat in his life but who is certainly neither an idiot or evil?
We have every right to disagree with each other, and we have every right to be passionate and vocal in our debates. You don’t like President Obama? Congratulations, you’re American, you don’t have to and you can tell the world just how much. But please, tell me why, like we were talking about it over coffee. You think House Speaker Boehner is the epitome of everything that is wrong about this country? You’re allowed. Give me something other than that he’s the Anti-Christ, though, because that’s not going to fly anymore.
Not with me. Come at me, bro. Come at me hard, but armed with something other than vitriol. Please. Even here on the Internet. I’m tired of fighting, and name-calling, and maybe I’m naïve. Apparently there still lies somewhere in this cynic’s heart some lingering idealistic belief that we can be better than this, that we want to. Because man, seriously, after today? I kind of want to give up.
I have four bumper stickers on the back of my SUV. One refers to my status as an alumnus of Macalester College, one is the insignia of a band I have long favored, one is the Wisconsin blue fist made famous (or infamous, depending on your interpretation) during the protests of the last year, and the last is an Obama Biden sticker. It doesn’t take a lot of intelligence to guess what this individual must have been referring to when he decided to seek my attention.
It took a gentle tap on the horn from the car behind me to get me moving again, at least physically, but mentally I’m still stuck at that light, staring at that car pulling away from me, dumbfounded.
What are we doing here, exactly? How far from any attempt however cursory at civil discourse have we fallen? What the hell is up, America?
Here’s the thing: my political beliefs are aligned most closely to the Democratic party. I believe, after a lot of research and soul-searching over the years, that it is the party that stands more often than not on the right side of history. I have voted for Republicans before. I have voted for people who didn’t claim any political affiliation whatsoever. I voted for the person I believed was best for the job.
Here’s the other thing: I’ve known many, many good and decent people whose political beliefs were entirely opposite mine. I count them among my close friends and family. We have intense conversations, we disagree vehemently, we break bread and move forward, together, without thinking less of the other person because our approaches to problem-solving the many and scary problems facing our cities and states and country, our world, are different.
Somewhere between the micro and the macro, however, we lose all sense of responsibility for our words and actions. And in doing so, we have eroded with terrifying speed an already crumbling foundation for political and civil discourse. We see it in Congress, we see it in statehouses, in the anonymity of the Internet. Apparently we are now seeing it at street corners.
I’m sure I’ve been guilty of the same. Maybe not in words as violent or ugly as those, but I know I’ve maligned the whole, used generalities out of laziness. I can’t do it anymore. I won’t. I am exhausted by the invective around me, the circular rhetoric that appeals to nothing more than base emotion and certainly not our better angels. And man, we haven’t even gotten into the thick of the campaign season yet.
I have seen this week what hate breeds, in a temple in my home state, a few minutes away from where I used to lay my head at night. I don’t know much, but I do know you don’t win hearts by spewing poison. My first grader could tell you that.
Wouldn’t it be nice if, before you referred to our president as trash you thought about all the people in your life who respect the man, and how they might feel about that? Would you paint them with the same brush? If before you made some offhand remark about those idiotic and evil Republicans you thought about your uncle, who has never voted for a Democrat in his life but who is certainly neither an idiot or evil?
We have every right to disagree with each other, and we have every right to be passionate and vocal in our debates. You don’t like President Obama? Congratulations, you’re American, you don’t have to and you can tell the world just how much. But please, tell me why, like we were talking about it over coffee. You think House Speaker Boehner is the epitome of everything that is wrong about this country? You’re allowed. Give me something other than that he’s the Anti-Christ, though, because that’s not going to fly anymore.
Not with me. Come at me, bro. Come at me hard, but armed with something other than vitriol. Please. Even here on the Internet. I’m tired of fighting, and name-calling, and maybe I’m naïve. Apparently there still lies somewhere in this cynic’s heart some lingering idealistic belief that we can be better than this, that we want to. Because man, seriously, after today? I kind of want to give up.
7/18/12
that kid's a pioneer, he is
So the Cipro didn’t work.
If you are hearing a thumping sound as you read this, do not be alarmed: it is just the sound of my head hitting the desk repeatedly. Rory is growing by leaps and bounds. He is happy, and healthy, and exactly where he should be on all the charts that tell you whether you should be concerned about your baby’s development.
Except that his throat cultures keep coming back with things growing in them that shouldn’t be there, and the first round of antibiotics we tried, Cipro in all its powdery strange suspended-in-liquid-but-not-really-mixing glory, did nothing to stop them. The fine medical folks at Children’s are as baffled as we are. We’re not on well water and he gets mostly breast milk anyway. But we’ll sterilize our bottles every night, and use distilled water for the little bit of formula he gets. And now we move to nebulizers, and super spendy antibiotics, and give thanks once again for insurance. We’ll go back after he’s been on it for three weeks and re-culture and hope for a better outcome.
The CF care coordinator told me that they’ll do another sweat test at six months, and it’s not a big deal, she said it wasn’t, he doesn’t have classic CF. But then I reread the JPeds article that is pretty much the only medical document out there addressing diagnosis and treatment of CRMS and this sticks out like a sore thumb:
Infants with CRMS should be monitored because they are at increased risk for development of CF-like symptoms and because in some individuals, evolving signs and symptoms, new information about disease-causing CFTR mutations, or change in sweat chloride concentrations may ultimately lead to a diagnosis of CF.
Let me just tell you, that is not the kind of stuff that makes a parent feel more comfortable about the situation.
Whatever, he is fine, he is beautiful and perfect. But have I mentioned how much I HATE being at the front end of this thing? He’s part of the national study that will better determine treatment protocols for CRMS kids moving forward. I wish we had that information now.
Headdesk.
If you are hearing a thumping sound as you read this, do not be alarmed: it is just the sound of my head hitting the desk repeatedly. Rory is growing by leaps and bounds. He is happy, and healthy, and exactly where he should be on all the charts that tell you whether you should be concerned about your baby’s development.
Except that his throat cultures keep coming back with things growing in them that shouldn’t be there, and the first round of antibiotics we tried, Cipro in all its powdery strange suspended-in-liquid-but-not-really-mixing glory, did nothing to stop them. The fine medical folks at Children’s are as baffled as we are. We’re not on well water and he gets mostly breast milk anyway. But we’ll sterilize our bottles every night, and use distilled water for the little bit of formula he gets. And now we move to nebulizers, and super spendy antibiotics, and give thanks once again for insurance. We’ll go back after he’s been on it for three weeks and re-culture and hope for a better outcome.
The CF care coordinator told me that they’ll do another sweat test at six months, and it’s not a big deal, she said it wasn’t, he doesn’t have classic CF. But then I reread the JPeds article that is pretty much the only medical document out there addressing diagnosis and treatment of CRMS and this sticks out like a sore thumb:
Infants with CRMS should be monitored because they are at increased risk for development of CF-like symptoms and because in some individuals, evolving signs and symptoms, new information about disease-causing CFTR mutations, or change in sweat chloride concentrations may ultimately lead to a diagnosis of CF.
Let me just tell you, that is not the kind of stuff that makes a parent feel more comfortable about the situation.
Whatever, he is fine, he is beautiful and perfect. But have I mentioned how much I HATE being at the front end of this thing? He’s part of the national study that will better determine treatment protocols for CRMS kids moving forward. I wish we had that information now.
Headdesk.
6/16/12
the luckiest
I didn’t really plan on being a parent, certainly not a single one. Once I was, I didn’t really anticipate it happening again, finding a partner that I would want to do that with, make that kind of a commitment to. See, dating a single parent isn’t a casual thing, or it shouldn’t be. Not when a kid’s involved.
So I wasn’t really expecting it, when Matt happened. I teased him then, that he had a biological clock that was ticking harder than a 35-year old woman, and there was at least a little bit of truth in that. I think maybe losing his mom when he did probably had something to do with that, understanding better than, certainly earlier than, most that we only have so much time and we have to cram as much living as we can into what we get.
For someone who had never changed a diaper before he met me (I think), who had spent very little time with little kids, he was a natural. Dating me was never just about me and I don’t think I can truly appreciate how brave you have to be as a single, childless person to pursue someone who’s already got that kind of life commitment to someone else.
He bought a carseat, before we were even engaged (again, I think. I’m reasonably certain), and I remember being totally being blown away by that. In a way, it was as much if not more a visible sign of just how much he was in this whole adventure as a ring was.
I am horrible with dates and anniversaries and I can’t even begin to tell you when he proposed except I think it was in February (maybe January. Don’t kill me, Matt.). I asked him to come over and hang out with A so I could deep clean the flat that Bean and I were living in at the time and I came back inside and A said he had something for me and inside the box he gave me was another box and when I turned, there was Matt on one knee. ”I haven’t showered!” was about all I could come up with when I caught on to what was going on.
That he involved A, that he acknowledged in the act of asking that it was not two but three, speaks volumes to the type of father he was going to be. Matt is the only father has ever known. He is the best father A could have hoped for. That I could have prayed for.
We were married in August and pregnant that month, and when Kid B came along it was a new revelation, to see how good Matt was with him. He has honestly changed more dirty diapers than I have, walked the floors late at night and, much to my chagrin, used the Smashing Pumpkins as a lullaby. Can’t win ‘em all, I guess.
And then, three years later, Kid C, just Matt and I in the delivery room, in what would be my hardest and last birthing. He wiped my brow and had more faith that I could do it than I could, I think. That’s the kind of person you want as a partner, as the father of your children.
He is a good and decent man, my husband, with a big heart and, when you can coax it out of him, an amazing smile. He is smart, and funny, and kind of a dork. His patience is light years beyond mine, which makes him an even better father. He plays Legos for hours, is a jungle gym and a punching bag. He teaches them to skate and ride the bike and appreciate metal. He does the dishes and the laundry and shows his boys that being one half of a whole means that you carry half the load, at home and outside it. Sometimes, you carry more.
He hugs our boys and kisses them and tells them every day that he loves them because he knows how important it is for them to hear, to feel right down in their cores.
He is a good and decent man, my husband, and thanks to his example, and a lot of hard work on both our parts, I have every expectation and all the faith in the world that these three boys that we are raising will be the same. I could hope for nothing better.
Happy Father’s Day, Matthew, father of my sons. We are so, so lucky to have you.
So I wasn’t really expecting it, when Matt happened. I teased him then, that he had a biological clock that was ticking harder than a 35-year old woman, and there was at least a little bit of truth in that. I think maybe losing his mom when he did probably had something to do with that, understanding better than, certainly earlier than, most that we only have so much time and we have to cram as much living as we can into what we get.
For someone who had never changed a diaper before he met me (I think), who had spent very little time with little kids, he was a natural. Dating me was never just about me and I don’t think I can truly appreciate how brave you have to be as a single, childless person to pursue someone who’s already got that kind of life commitment to someone else.
He bought a carseat, before we were even engaged (again, I think. I’m reasonably certain), and I remember being totally being blown away by that. In a way, it was as much if not more a visible sign of just how much he was in this whole adventure as a ring was.
I am horrible with dates and anniversaries and I can’t even begin to tell you when he proposed except I think it was in February (maybe January. Don’t kill me, Matt.). I asked him to come over and hang out with A so I could deep clean the flat that Bean and I were living in at the time and I came back inside and A said he had something for me and inside the box he gave me was another box and when I turned, there was Matt on one knee. ”I haven’t showered!” was about all I could come up with when I caught on to what was going on.
That he involved A, that he acknowledged in the act of asking that it was not two but three, speaks volumes to the type of father he was going to be. Matt is the only father has ever known. He is the best father A could have hoped for. That I could have prayed for.
We were married in August and pregnant that month, and when Kid B came along it was a new revelation, to see how good Matt was with him. He has honestly changed more dirty diapers than I have, walked the floors late at night and, much to my chagrin, used the Smashing Pumpkins as a lullaby. Can’t win ‘em all, I guess.
And then, three years later, Kid C, just Matt and I in the delivery room, in what would be my hardest and last birthing. He wiped my brow and had more faith that I could do it than I could, I think. That’s the kind of person you want as a partner, as the father of your children.
He is a good and decent man, my husband, with a big heart and, when you can coax it out of him, an amazing smile. He is smart, and funny, and kind of a dork. His patience is light years beyond mine, which makes him an even better father. He plays Legos for hours, is a jungle gym and a punching bag. He teaches them to skate and ride the bike and appreciate metal. He does the dishes and the laundry and shows his boys that being one half of a whole means that you carry half the load, at home and outside it. Sometimes, you carry more.
He hugs our boys and kisses them and tells them every day that he loves them because he knows how important it is for them to hear, to feel right down in their cores.
He is a good and decent man, my husband, and thanks to his example, and a lot of hard work on both our parts, I have every expectation and all the faith in the world that these three boys that we are raising will be the same. I could hope for nothing better.
Happy Father’s Day, Matthew, father of my sons. We are so, so lucky to have you.
6/6/12
two steps forward, one step back.
Remember when I said we don’t know what we don’t know? Well, the Irish in me is shaking its head and muttering something about “waiting for the other boot to fall” and “the perils of optimism.” Because, yeah, guess what? Curveball.
Okay, that’s a little overdramatic. But, in the midst of cheering over some really great news about A, there was a call from Children’s, from the CF care coordinator we’d been introduced to briefly at our appointment last week. Kid C’s results were in from his throat culture, and they were unexpected, given his other test results, in that they were more consistent with kids with CF than not. She didn’t go into great detail, and it was one of those cases where I wish I had waited for Matt to be home to call because after abnormal everything kind of blurred?
She did tell me repeatedly not to be overly concerned, that all of the things that showed up were also found in normal kids. But the bottom line is that the protocol is to treat it like they would a standard CF case, so Kid C will go on Cipro for three weeks, and we’ll go back to Children’s for a follow-up evaluation in four. So.
I have to be honest: today can go have intercourse with itself.
Okay, that’s a little overdramatic. But, in the midst of cheering over some really great news about A, there was a call from Children’s, from the CF care coordinator we’d been introduced to briefly at our appointment last week. Kid C’s results were in from his throat culture, and they were unexpected, given his other test results, in that they were more consistent with kids with CF than not. She didn’t go into great detail, and it was one of those cases where I wish I had waited for Matt to be home to call because after abnormal everything kind of blurred?
She did tell me repeatedly not to be overly concerned, that all of the things that showed up were also found in normal kids. But the bottom line is that the protocol is to treat it like they would a standard CF case, so Kid C will go on Cipro for three weeks, and we’ll go back to Children’s for a follow-up evaluation in four. So.
I have to be honest: today can go have intercourse with itself.
5/31/12
exhale
So if you’ve been following along, you know that we learned definitively a few weeks ago that Kid C has what has been classified as CRMS. As I said in that post, they didn’t have a diagnosis for this until 2009, when the best minds in cystic fibrosis treatment came together to try and cobble together some recommendations for the kids who, through genetic testing and sweat results, weren’t ever likely to develop classic CF, but had more going on that just being carriers for the disease. It’s a huge umbrella, under which kids with no symptoms at all to those with greater incidences of respiratory issues or pancreatitis fall.
Today we went down to Children’s, which has some of the best CF specialists in the country, to meet with a doc and do some baseline testing. Kid C had a chest x-ray done, a throat swab, and a stool sample taken. We talked with the doctor for an hour, almost, although a lot of it was just more acknowledgement of the fact that we don’t know what we don’t know.
Science is amazing, miraculous, and what we’ve been able to uncover in a generation of kids is truly remarkable. Kid C sits now in a group of kids from which future treatments will be determined. He’s part of the research pool, as people a lot smarter than I try to get their arms around what exactly CRMS means, and what the different variables in terms of type of mutations can predict in terms of the level of symptoms someone with his diagnosis can expect to face in their lifetime.
What we do know is this: his chest x-rays were perfectly clear. He is gaining weight and growing like a boss. His color is great, his development is on track, and every indicator we have suggests a normal, healthy child, and we intend to do everything we can on our end to keep him that way. As the doc put it, there are a lot of children she sees that she loses sleep over, but our kid is not one of them.
We’ll go back in four months, to check back in before cold and flu season starts. We’ll need to keep a closer eye on him during those winter months, because he’s at greater risk for respiratory issues. We’ll go back on his birthday, again, and then, if he continues to remain asymptomatic, we’ll probably only have to go in for annual checkups as he ages. That’s our goal.
I was reminded again of how lucky we are, as the doctor described the regimen that families touched by classic CF have to go through. If you are praying for our kiddo, please pray for them, too. We are blessed, too, to have access to amazing doctors - truly, Children’s is a fabulous facility with incredible staff whose love and affection for and commitment to children shines - and the kind of insurance coverage that makes all of this possible without any sleepless nights spent worrying about how to pay for it. And what we learn with Kid C, as he grows, will help other parents and children who find themselves in that doctor’s office for a routine follow-up like we did, so that maybe the world that unfolds in front of them in those breath-stealing moments won’t be quite so scary.
That’s our goal, too. If you’ve read all the way through this, hey. Thanks. The light and love of your thoughts and prayers has surrounded us and kept us optimistic. If you have a buck or two to spare and want to support Matt as he rides to raise funds for cystic fibrosis research this fall, you can do so here, and we’d appreciate that too. There are advances in the fight against this disease every day, and with your help, we can keep adding years to all the kids who struggle with this on a daily basis. That’s the end game here, and we can’t accept anything less.
Today we went down to Children’s, which has some of the best CF specialists in the country, to meet with a doc and do some baseline testing. Kid C had a chest x-ray done, a throat swab, and a stool sample taken. We talked with the doctor for an hour, almost, although a lot of it was just more acknowledgement of the fact that we don’t know what we don’t know.
Science is amazing, miraculous, and what we’ve been able to uncover in a generation of kids is truly remarkable. Kid C sits now in a group of kids from which future treatments will be determined. He’s part of the research pool, as people a lot smarter than I try to get their arms around what exactly CRMS means, and what the different variables in terms of type of mutations can predict in terms of the level of symptoms someone with his diagnosis can expect to face in their lifetime.
What we do know is this: his chest x-rays were perfectly clear. He is gaining weight and growing like a boss. His color is great, his development is on track, and every indicator we have suggests a normal, healthy child, and we intend to do everything we can on our end to keep him that way. As the doc put it, there are a lot of children she sees that she loses sleep over, but our kid is not one of them.
We’ll go back in four months, to check back in before cold and flu season starts. We’ll need to keep a closer eye on him during those winter months, because he’s at greater risk for respiratory issues. We’ll go back on his birthday, again, and then, if he continues to remain asymptomatic, we’ll probably only have to go in for annual checkups as he ages. That’s our goal.
I was reminded again of how lucky we are, as the doctor described the regimen that families touched by classic CF have to go through. If you are praying for our kiddo, please pray for them, too. We are blessed, too, to have access to amazing doctors - truly, Children’s is a fabulous facility with incredible staff whose love and affection for and commitment to children shines - and the kind of insurance coverage that makes all of this possible without any sleepless nights spent worrying about how to pay for it. And what we learn with Kid C, as he grows, will help other parents and children who find themselves in that doctor’s office for a routine follow-up like we did, so that maybe the world that unfolds in front of them in those breath-stealing moments won’t be quite so scary.
That’s our goal, too. If you’ve read all the way through this, hey. Thanks. The light and love of your thoughts and prayers has surrounded us and kept us optimistic. If you have a buck or two to spare and want to support Matt as he rides to raise funds for cystic fibrosis research this fall, you can do so here, and we’d appreciate that too. There are advances in the fight against this disease every day, and with your help, we can keep adding years to all the kids who struggle with this on a daily basis. That’s the end game here, and we can’t accept anything less.
5/30/12
my father's playlist
It started with a simple Gchat conversation. I saw my dad online, and started “singing” Ween to him. “Push th’ Little Daisies,” to be precise, which was prominently featured in an episode of Beavis and Butthead that I think we watched together once, the two of us cracking up in the basement of the house on Howard Avenue. He didn’t really remember it, and that’s okay, I remember it well enough for both of us.
What he did say was this: By the way, All Things Considered is doing something this week called something like “My Father’s Playlist.” I can think of at least two songs you could write about for them.
My dad loves music. It’s kind of funny, given that, to the best of my knowledge, he never really played any instruments seriously. There might have been a brief flirtation with a clarinet, and every once in a while he dances with a harmonica or, more recently, a bodhrán, but for the most part his infatuation with music is expressed via stereo speakers turned up just a little too loud for comfort. A trait, might I add, I have inherited from him.
I hadn’t really thought about it, before the above exchange, but there are a lot of memories of growing up, memories of him, that are inextricably tied to sound. Driving along the Beltline in Madison, helping him run an errand for work, his face all squinched up as he made me howl with laughter while he sang along to Phil Collins’ “Take Me Home.” Dancing around the living room to the Dead’s ”Casey Jones.” Listening to The Band while we drove up the mountains in Colorado.
The standout track, the defining one, is Paul Simon’s “You Can Call Me Al.” That whole album is pretty tremendous, and despite not having listened to it in years I can still probably sing it front to back, but that song in particular captured the imagination of the old man and me. We choreographed a dance to it, with hats as props. Somewhere, lost in the garage or in some forgotten box in a basement is a scratched out VHS tapes that captures those minutes for posterity, both of us giddy and goofy and enjoying the hell out of each other.
Being a parent is hard. Being a good parent is damn near impossible, when you think about all the variables involved. I don’t think I appreciated just how much until I became one myself. You give up on any notion of perfection pretty quick, and just hope that at the end of the 18 years in which you are charged with sheltering and nurturing and growing that you come through with a minimum of scrapes and broken bones, that somehow, amazingly, you and the life you created have some common ground, are still speaking.
But there are perfect moments. On the back of a motorcycle, riding along the Mississippi. The first plane ride, on a 747 bound for Phoenix. At the top of a hill in Spring Green, craning through a telescope for a fleeting view of a comet. Picking cotton on the side of a dusty Mississippi road. We’re going on an adventure, Gandalf. Dancing around the living room, tipping our hats at one another and making faces, singing at the top of our lungs.
String those moments together, pin them up on your wall, stand back and smile. Look at what you made, and maybe it’s not perfect, but it’s pretty damn good.
Turn the music up, Dad. I feel like dancing.
The playlist:
Bob Seger - Betty Lou’s Getting Out Tonight
The Grateful Dead - Casey Jones
The Band - Up on Cripple Creek
John Fogerty - Centerfield
Dan Fogelberg - Run for the Roses
Tom Petty - Free Falling
Jackson Browne - Running on Empty
Bruce Springsteen - Glory Days
The Traveling Wilburys - The End of the Line
Warren Zevon - Tenderness on the Block
Paul Simon - You Can Call Me Al
5/21/12
cftr-related metabolic syndrome (CRMS)
Cystic Fibrosis Transmembrane Conductance Regulator-related Metabolic Syndrome. That’s the full name. CRMS for short, and it’s the diagnosis we were eventually given for Rory.
I’ve never been on this end of things, never had to deal with tests and visits to hospitals and waiting for weeks for results, but what they told us, after he passed the sweat test, was that they needed to do some follow-up testing, on us. Simple blood tests, to find out who carried what, and if we’d need to pursue any further specialized care for the kiddo.
CRMS is relatively new, as a diagnosis. The syndrome itself has obviously been around for as long as CF has, but if what I’ve been reading is accurate it wasn’t until 2009 that the CF Foundation issued any guidelines for pediatricians in terms of standards of care for kids that fall under its umbrella.
Basically, it’s a catch-all for kids who are more than carriers, but don’t have both mutations necessary for a CF diagnosis. Rory’s genetic profile slots him in this category, though that doesn’t actually tell us much. We know enough about CRMS to know that we don’t really know yet how it is going to play out. Odds are good that Rory will be a healthy kid, even better because we know from the chromosonal sequencing that the variations in his mutation have, in other kids thus far, resulted in minimal complications. We’re really encouraged by that, and hopeful.
But it does mean that we’ll be seeing a CF-specialist at least a couple times a year, for the foreseeable, in order to track his progress and make sure he’s developing as he should be. That starts a week from Thursday, when we go to Children’s to get a baseline chest x-ray and meet with one of their pediatric pulmonologists.
There is so much to learn and I’m devouring everything I can but the literature for this little piece of the world is pretty scant, mostly because this is the first generation for whom screening is making such a big difference in when and how things are treated. I think Kid C’s going to be fine, and I’m secure in knowing that we have access to one of the best facilities for treating CF-related illness out there so that IF he develops any symptoms we can deal with them quickly.
Mostly I think science is amazeballs. I mean, what we know, and how we know it, and how much we know - down to incredibly specific genetic variants and how they will impact a prognosis, is insane. In good ways, at least in my experience. It makes me hopeful that the huge strides that have been made in treating CF in a generation mean that in another we’ll have gone even further, so Rory, and his brothers, who are possibly carriers, too, won’t have to go through tests and weigh odds and make painful decisions when it comes time to start their own families.
I want the people that I have come to know who are dealing with this disease in far more immediate and critical ways to have treatments and answers and more time, too.
The husband is doing Cycle for Life this fall, and if you happen upon this and decide you want to support the efforts to find better treatments and make more time, too, we would welcome that here: http://www.cff.org/LWC/dsp_DonationPage.cfm?idEvent=20015&idUser=559838.
Every day over the past two months I have been continually reminded that control is an illusion, that each day is a gift and each moment precious. Those are absolutely cliches, yes, but they are no less true because of the same. This whole journey has changed the way I look at the world and whatever wrinkles it has added, the discovery of gray hairs that it brought, every little bit has been worth it to understand that better, and fall in love with what I have a little more.
I’ve never been on this end of things, never had to deal with tests and visits to hospitals and waiting for weeks for results, but what they told us, after he passed the sweat test, was that they needed to do some follow-up testing, on us. Simple blood tests, to find out who carried what, and if we’d need to pursue any further specialized care for the kiddo.
CRMS is relatively new, as a diagnosis. The syndrome itself has obviously been around for as long as CF has, but if what I’ve been reading is accurate it wasn’t until 2009 that the CF Foundation issued any guidelines for pediatricians in terms of standards of care for kids that fall under its umbrella.
Basically, it’s a catch-all for kids who are more than carriers, but don’t have both mutations necessary for a CF diagnosis. Rory’s genetic profile slots him in this category, though that doesn’t actually tell us much. We know enough about CRMS to know that we don’t really know yet how it is going to play out. Odds are good that Rory will be a healthy kid, even better because we know from the chromosonal sequencing that the variations in his mutation have, in other kids thus far, resulted in minimal complications. We’re really encouraged by that, and hopeful.
But it does mean that we’ll be seeing a CF-specialist at least a couple times a year, for the foreseeable, in order to track his progress and make sure he’s developing as he should be. That starts a week from Thursday, when we go to Children’s to get a baseline chest x-ray and meet with one of their pediatric pulmonologists.
There is so much to learn and I’m devouring everything I can but the literature for this little piece of the world is pretty scant, mostly because this is the first generation for whom screening is making such a big difference in when and how things are treated. I think Kid C’s going to be fine, and I’m secure in knowing that we have access to one of the best facilities for treating CF-related illness out there so that IF he develops any symptoms we can deal with them quickly.
Mostly I think science is amazeballs. I mean, what we know, and how we know it, and how much we know - down to incredibly specific genetic variants and how they will impact a prognosis, is insane. In good ways, at least in my experience. It makes me hopeful that the huge strides that have been made in treating CF in a generation mean that in another we’ll have gone even further, so Rory, and his brothers, who are possibly carriers, too, won’t have to go through tests and weigh odds and make painful decisions when it comes time to start their own families.
I want the people that I have come to know who are dealing with this disease in far more immediate and critical ways to have treatments and answers and more time, too.
The husband is doing Cycle for Life this fall, and if you happen upon this and decide you want to support the efforts to find better treatments and make more time, too, we would welcome that here: http://www.cff.org/LWC/dsp_DonationPage.cfm?idEvent=20015&idUser=559838.
Every day over the past two months I have been continually reminded that control is an illusion, that each day is a gift and each moment precious. Those are absolutely cliches, yes, but they are no less true because of the same. This whole journey has changed the way I look at the world and whatever wrinkles it has added, the discovery of gray hairs that it brought, every little bit has been worth it to understand that better, and fall in love with what I have a little more.
4/9/12
hallelujah is our song
I don’t know that I’ve ever been as scared as I was today. Or as relieved, in the space of a heartbeat, a few words spoken and lives changed. Or, I suppose in this case, status quo achieved. Well, sort of. As an aside, I don’t know how people work in pediatrics, either. I hope I never have to go back to Children’s Hospital for as long as I live.
But the good news, the great news, is that R passed his sweat test. The last two weeks have been like being stuck in some sort of purgatory, torn between wanting to panic and refusing to believe that anything other than the best possible outcome was likely. I prayed, a lot. I missed my support system, a lot. The possibility that he could have CF overwhelmed me in moments when I least expected it. It felt like every other time I looked at him I welled up, and if you know me, you know I prefer almost anything to crying. I don’t do tears.
So I suppose in some sense getting to today, at least, was a relief. We were quiet, the drive in. We held hands, and didn’t talk about what was coming because I’m not sure either of us knew how to articulate the kind of fear I know we were both feeling. In the days leading up to this I hadn’t prayed for one particular outcome or the other, but merely for the strength to get through what was coming, however it revealed itself.
The sweat test itself was pretty easy. It was sitting in a room waiting for the genetic counselors that was the hardest part, and I won’t lie - when not one, but two women walked in, arms full of folders, I immediately feared the worst. My luck held out one more time, though. He’d passed the sweat test with flying colors. Rory didn’t - doesn’t - have classic CF. All those nightmare scenarios dissolved, in the blink of an eye, another wash of tears. Couldn’t help myself, the relief so palpable that the only way to let it out was in that woosh of breath, the falling of tears. Thank you, God. Hail, Mary.
We still need more testing. Kiddo’s mutation is such that the possibility exists that he is not merely a carrier, but has CRMS. If this is the worst-case scenario, we can be nothing less than elated. It feels like we dodged a bullet, and I suppose we did.
When I was talking with the rector at our church about this, someone in a position to be uniquely sympathetic to what we were going through, she reminded me that we are but caretakers for these children that pass through our lives. They don’t belong to us, but they are entrusted to our care. I read Gibran more than once, and took comfort in those words. I was reminded by a good friend that life provides us with no guarantees for any of our kids, that all we have is this moment, today.
I feel like so much has happened in the last two weeks, since that painful conversation at our pediatrician’s office. That the gray hairs I found today, the first I’ve seen, have been well-earned as I was forced to face the notion of mortality in a very real and painful way. So much of what we surround ourselves with, in our heads and hearts and daily lives, is illusion. Being forced to acknowledge that has probably made me a better parent, if only because I understand now in a way I didn’t before just how fragile the world we make for ourselves really is.
So I’m grateful tonight, and blessed. God is good, and I hope that the what I have learned, what I can no longer take for granted, stays with me as the worry subsides and life returns to something more like normal. What I do know is that we are forever changed, because of this, not just in how we look at the world but in how we interpret our future. No matter what, cystic fibrosis is now a part of our lives. One in twenty-five people carries this disease inside of them, and most don’t have the first clue. We didn’t. At least one of our sons does, and so he won’t have to worry about his own children, we will do what we can now to help work for better treatments, for an eventual cure. There is so much work to be done, and I’m ready to roll up my sleeves. For our baby boy, for his children, for all the amazing people who reached out to me after that first post who have walked this journey in much more painful ways than I have.
God is good. Faith sustains. Love sustains, the love of a partner, of family, of community, as long as we open ourselves to the possibility. The day after Easter, the promise of the day feels more real than it ever has before.
Thanks be.
But the good news, the great news, is that R passed his sweat test. The last two weeks have been like being stuck in some sort of purgatory, torn between wanting to panic and refusing to believe that anything other than the best possible outcome was likely. I prayed, a lot. I missed my support system, a lot. The possibility that he could have CF overwhelmed me in moments when I least expected it. It felt like every other time I looked at him I welled up, and if you know me, you know I prefer almost anything to crying. I don’t do tears.
So I suppose in some sense getting to today, at least, was a relief. We were quiet, the drive in. We held hands, and didn’t talk about what was coming because I’m not sure either of us knew how to articulate the kind of fear I know we were both feeling. In the days leading up to this I hadn’t prayed for one particular outcome or the other, but merely for the strength to get through what was coming, however it revealed itself.
The sweat test itself was pretty easy. It was sitting in a room waiting for the genetic counselors that was the hardest part, and I won’t lie - when not one, but two women walked in, arms full of folders, I immediately feared the worst. My luck held out one more time, though. He’d passed the sweat test with flying colors. Rory didn’t - doesn’t - have classic CF. All those nightmare scenarios dissolved, in the blink of an eye, another wash of tears. Couldn’t help myself, the relief so palpable that the only way to let it out was in that woosh of breath, the falling of tears. Thank you, God. Hail, Mary.
We still need more testing. Kiddo’s mutation is such that the possibility exists that he is not merely a carrier, but has CRMS. If this is the worst-case scenario, we can be nothing less than elated. It feels like we dodged a bullet, and I suppose we did.
When I was talking with the rector at our church about this, someone in a position to be uniquely sympathetic to what we were going through, she reminded me that we are but caretakers for these children that pass through our lives. They don’t belong to us, but they are entrusted to our care. I read Gibran more than once, and took comfort in those words. I was reminded by a good friend that life provides us with no guarantees for any of our kids, that all we have is this moment, today.
I feel like so much has happened in the last two weeks, since that painful conversation at our pediatrician’s office. That the gray hairs I found today, the first I’ve seen, have been well-earned as I was forced to face the notion of mortality in a very real and painful way. So much of what we surround ourselves with, in our heads and hearts and daily lives, is illusion. Being forced to acknowledge that has probably made me a better parent, if only because I understand now in a way I didn’t before just how fragile the world we make for ourselves really is.
So I’m grateful tonight, and blessed. God is good, and I hope that the what I have learned, what I can no longer take for granted, stays with me as the worry subsides and life returns to something more like normal. What I do know is that we are forever changed, because of this, not just in how we look at the world but in how we interpret our future. No matter what, cystic fibrosis is now a part of our lives. One in twenty-five people carries this disease inside of them, and most don’t have the first clue. We didn’t. At least one of our sons does, and so he won’t have to worry about his own children, we will do what we can now to help work for better treatments, for an eventual cure. There is so much work to be done, and I’m ready to roll up my sleeves. For our baby boy, for his children, for all the amazing people who reached out to me after that first post who have walked this journey in much more painful ways than I have.
God is good. Faith sustains. Love sustains, the love of a partner, of family, of community, as long as we open ourselves to the possibility. The day after Easter, the promise of the day feels more real than it ever has before.
Thanks be.
3/23/12
the words no parent wants to hear
I am a writer at heart. When I’m angry, I write to exorcise that heat, to find a path to equilibrium. When I’m joyful, I write to celebrate, to commemorate. I write my way through most every major life event, because it’s one of the few ways I know to process what I’m going through, to put it someplace in black and white that is separate from the inside of my head. For better or worse, it’s how I get through things.
I write.
So I am writing this, even though I don’t really want to, because writing somehow makes it real. On March 6th we were blessed with son number 3, our baby, our ginger Red King. 7 lbs 1 oz and 19 inches of beautiful, sweet, peaceful boy and he has fit into our lives as if he was always there. Even S, the now-middle child, has accepted his entry into our lives with an ease that surprised both the husband and myself.
He’s nursing well, he’s starting to be awake more, he’s a joy, and I have enjoyed every minute of our leave together. Tuesday we had our two-week checkup. He gained a pound since hospital discharge, a whole two inches, which, honestly, I expect has more to do with hasty recording at the hospital than a major growth spurt but we’ll take it.
Before the checkup, the nurse practitioner sat down across from me and gently said that the state newborn screening folks had contacted the office. R had popped a flag for cystic fibrosis.
She was smart enough to wait to continue a few moments. I’m sure it was the look of abject terror on the face, maybe it was the fact that all I could hear was the blood rushing past my ears. It took me a minute to realize what she was telling me wasn’t a diagnosis, and then, under the weight of both possibility and relief, I started to cry.
On the day of his birth, R’s bloodwork put him in the top 10% of those born that day at risk for the disease. A second test was run, which ran his profile against the most common mutations that cause cystic fibrosis. Two mutations would indicate a positive diagnosis; R has one. Because they only test for the most common mutations, there is still a possibility - 10% to be precise - that he has the disease.
The NP was very reassuring. He’s growing, he’s healthy, he’s thriving, his lungs are clear, all good signs in our favor. As far as we know, there’s no family history on either side, certainly no one we know who’s had the disease, which is also a good thing. Odds are certainly in our favor that he’s merely a carrier, not a child that is going to be sick. But I didn’t hear any of that on Tuesday. I barely heard her caution me not to go home and try to research this on the Internet, though it turned out to be the best advice we would get.
So April 9 we will go to Children’s Hospital for definitive testing, to find out one way or the other. In Minnesota, they don’t do the “sweat test” - which is the gold standard for a diagnosis - until a child is at least a month old. We have to wait what feels like an interminable amount of time to sit in a room and find out if we have a fight on our hands or if we merely have to prepare our child to be vigilant once the time comes forhim to have children.
I cried a lot on Tuesday. Less yesterday. Only occasionally weepy moments today. I haven’t wanted to let him out of my arms since that appointment. A good friend of mine reminded me that no matter what the outcome we have no idea how much time we have, any of us. I am trying not to fixate, to play out worst-case scenarios in my head, and I have mostly been successful. I am praying, with every breath. For strength, for him, for us. I know better than to pray for a particular outcome because I don’t believe prayer works in that way but I pray that no matter what we hear on April 9 that we can get through it. That I am - can be - the mother he needs, that he will need, today and tomorrow and every day after that, forever.
We’re strong, our family. We’ve been through a lot over the past year, and R’s been throwing us curveballs since practically the moment of conception. This is just another one. We’ll roll with it, and we’ll be okay. We will. If I write that, I make it real.
I write.
So I am writing this, even though I don’t really want to, because writing somehow makes it real. On March 6th we were blessed with son number 3, our baby, our ginger Red King. 7 lbs 1 oz and 19 inches of beautiful, sweet, peaceful boy and he has fit into our lives as if he was always there. Even S, the now-middle child, has accepted his entry into our lives with an ease that surprised both the husband and myself.
He’s nursing well, he’s starting to be awake more, he’s a joy, and I have enjoyed every minute of our leave together. Tuesday we had our two-week checkup. He gained a pound since hospital discharge, a whole two inches, which, honestly, I expect has more to do with hasty recording at the hospital than a major growth spurt but we’ll take it.
Before the checkup, the nurse practitioner sat down across from me and gently said that the state newborn screening folks had contacted the office. R had popped a flag for cystic fibrosis.
She was smart enough to wait to continue a few moments. I’m sure it was the look of abject terror on the face, maybe it was the fact that all I could hear was the blood rushing past my ears. It took me a minute to realize what she was telling me wasn’t a diagnosis, and then, under the weight of both possibility and relief, I started to cry.
On the day of his birth, R’s bloodwork put him in the top 10% of those born that day at risk for the disease. A second test was run, which ran his profile against the most common mutations that cause cystic fibrosis. Two mutations would indicate a positive diagnosis; R has one. Because they only test for the most common mutations, there is still a possibility - 10% to be precise - that he has the disease.
The NP was very reassuring. He’s growing, he’s healthy, he’s thriving, his lungs are clear, all good signs in our favor. As far as we know, there’s no family history on either side, certainly no one we know who’s had the disease, which is also a good thing. Odds are certainly in our favor that he’s merely a carrier, not a child that is going to be sick. But I didn’t hear any of that on Tuesday. I barely heard her caution me not to go home and try to research this on the Internet, though it turned out to be the best advice we would get.
So April 9 we will go to Children’s Hospital for definitive testing, to find out one way or the other. In Minnesota, they don’t do the “sweat test” - which is the gold standard for a diagnosis - until a child is at least a month old. We have to wait what feels like an interminable amount of time to sit in a room and find out if we have a fight on our hands or if we merely have to prepare our child to be vigilant once the time comes forhim to have children.
I cried a lot on Tuesday. Less yesterday. Only occasionally weepy moments today. I haven’t wanted to let him out of my arms since that appointment. A good friend of mine reminded me that no matter what the outcome we have no idea how much time we have, any of us. I am trying not to fixate, to play out worst-case scenarios in my head, and I have mostly been successful. I am praying, with every breath. For strength, for him, for us. I know better than to pray for a particular outcome because I don’t believe prayer works in that way but I pray that no matter what we hear on April 9 that we can get through it. That I am - can be - the mother he needs, that he will need, today and tomorrow and every day after that, forever.
We’re strong, our family. We’ve been through a lot over the past year, and R’s been throwing us curveballs since practically the moment of conception. This is just another one. We’ll roll with it, and we’ll be okay. We will. If I write that, I make it real.
Subscribe to:
Posts (Atom)