I am sitting in my cosy little house, listening to Christmas music through the Roku. Things sure have changed since I was a kid...even since my kids were born in the last 18 years.
First of all, Roku? It sounds like a character in Pokemon; something else that did not exist when I was a kid. Since I fired up the desktop, I have heard Tony Bennett, The Beach Boys, Idina Menzel and George Michael and I have not had to load my cd player and set it on "shuffle" (remember how cool that was?!?). All I had to do was pick a Christmas station through my TV.
Christmases when I was a kid have all become a tinsel-covered blur in my memory. I remember fat, crazy looking trees at my maternal grandparents house (in sharp contrast to the perfectly shaped fake tree in my other grandparents home), bowls of nuts that you had to crack yourself and bodies; lots and lots of sweaty kids and overheated adults. The oven and stove going all day long makes for an unpleasantly humid living room, especially when packed with dozens of relatives.
And I totally loved it!
Christmas was a day of many big meals and many stops. Godawfully (for my parents) early present opening and Santa gift discovering (Santa did not wrap his presents in my childhood home and he still doesn't in my adult home. That Santa wrapped other kid's gifts started nagging at my already suspicious mind somewhere around the age of six), brunch at my aunt's, super-early dinner (that we were always late for) at my great-aunt's, then, finally stuffed and crabby (if you were a parent) and excited (if you were me), we arrived at my maternal grandparents house. It's not that the rest of the day wasn't fun; it's just that their house was the MOST fun. It's where all my cousins and my grandmother's seventeen desserts were waiting for us. I'm not kidding when I say seventeen. There were years that I counted and if there were less than ten, my grandmother would be fretting that we might run out.
Adding to the heat and the mayhem, my grandfather would be blinding us all with his movie camera. Those movies would get broken out on Easter, Thanksgiving, or a later Christmas when the merriment had died down. I have so many memories of lying on the floor with my chin propped on my hands, surrounded by nearly everyone I loved, laughing at those old movies.
So much stayed the same and so much changed as I got older. My teen-aged self did not appreciate the Christmas Eve service that took me away from my (totally super-fun) boyfriend's family party. I did NOT want to get up early to see what Santa brought for my younger sister and brother. All I wanted was a leather jacket, to sleep late and some freedom.
So many pictures of me smirking or rolling my eyes during these years.
When I moved away at twenty, I was not quite prepared for spending holidays without my relatives. That first Thanksgiving was pretty sad. My (different) boyfriend's family was wonderful and welcoming but their traditions were so different from the ones I had grown up with. I learned pretty quickly that if I wanted any kind of taste of home, I would have to learn how to make it myself and then, it would never, ever taste how I remembered it.
That year, I did go home for Christmas, but things had already changed in my absence. I had only been gone for six or seven months, but I had a new cousin, my room was no longer mine and it was clear that being an adult at Christmas was not as fun as being a kid. By the time New Year's day 1991 came around, I was more than ready to get back to L.A.
Those years were some of the best of my life so far, but the time between Thanksgiving and New Years was always very trying. My new boyfriend (now husband! :) ) and our friends became each other's family. We made the best of things, probably partied a little too much and complained about the lack of holiday spirit that seemed to permeate L.A.
Now, we have our own family and for many years, Christmas has been fun again. There is nothing like seeing your little ones light up when they see what Santa has left. It is warm and wonderful and maybe not as chaotic and busy as the holidays of my youth, but it is still wonderful because we are together. We have our own traditions. I have learned that the old cliche "Home is where the heart is" is true. My heart is here with my family and it is also with my extended family and all the friends that made my holidays of the past memorable. Being away from them has its moments of sadness, but more, it fills me with joy that I have so much to be thankful for and so many people to miss. It is a luxury to have had them in my life.
Now, I have my own teenagers who roll their eyes and sleep too late and occasionally, make it harder to be filled with Christmas cheer; but they also surprise me with their generosity and warmth towards each other and us. Santa's bounty is somehow anti-climactic at 11 am, but it is no less appreciated. The pressure of staying up until 2 am and getting up before prying little eyes is off. We make each other laugh and they are old enough to reminisce with us. Things have changed again and I am embracing it; living in the moment, cherishing this time.
So, to my family and friends near and far: Much love today. I will be thinking of you while embracing my dear husband and big boys.
Merry Christmas!
Showing posts with label kids. Show all posts
Showing posts with label kids. Show all posts
Wednesday, December 24, 2014
Monday, April 14, 2014
Processing...
When most people see the word processing, they most likely think of what a computer does. It transforms information into readable text, pictures, kitty cat memes, etc. It processes computer jibberish into a medium that our brain recognizes, quickly.
What I want to talk about is the way people interpret information. Specifically, how me and my youngest son see and hear things.
When I was a child, before I began school, I was a genius. I read whole books way before I entered Kindergarten. I had a grasp of the English language that probably rivaled that of an average ten or twelve year old when I was five and my use of sarcasm and humor made adults weep with glee.
It was universally accepted (okay, my mom WAS my universe when I was five) that I would get straight A's all through my school years, that I would graduate from Princeton and become a successful brain surgeon/astrophysicist, or at the very least, a writer that used correct grammar.
It didn't turn out that way; far from it, in fact.
By the time I hit second grade, I was already "not working up to my potential". I fidgeted. I lost my homework. I didn't DO my homework. My desk and bookbag were overflowing with crap and my mother and my teacher were both shaking their heads (at best) and screaming (at worst) at me over my laziness.
"If you would only APPLY yourself!"
If I had a nickel for every time I heard that throughout my school years, I'd at least have a couple, two, t'ree bucks.
I carried on believing that I had just been a lazy student until I had my own children and I started seeing my struggles in theirs; especially, in my youngest son's.
Like me, he talked and read very early. My mom often recounts a story of E, sitting on her lap, at about eighteen months old, reading her Scrabble letters out loud while we played. He was and is a very bright boy.
Within the first few months of Kindergarten, we realized that he was having trouble, though. It turns out, this trouble had a name: Processing Disorder.
There are three basic types of processing disorders: Auditory, Visual and Sensory. Sound, Sight and Touch/Feel or Tactile.
E and I both have trouble with the way we interpret what we read. Often, our brains are on the next paragraph, while our eyes are still on the one before. It leads to confusion.
We are also not very good at following spoken directions, which is part of the reason for my doing so poorly in school, when nearly every class relied on lots of talking by the teacher and lots of note taking by the students. I would invariably get lost at some point, quit trying to figure out what I was supposed to be writing and would start daydreaming and doodling.
When the time came to turn in the homework that was assigned during the drone, I would usually have missed it, taking the parking break off the steamroller at the top of the hill of crap that was my missed assignments.
In classes that I had a good grasp of: History or English, I could usually make it up and get by; but math, especially Algebra, was another story. If I missed one thing, I was lost for days and weeks, often never to get back on top of things. It didn't help that my Algebra teacher was the same one for three years in a row and that she was a psychotic, polyester pantsuit wearing, drunk. I was afraid to approach her for help and when I did, she repeated the tired old line about being lazy and not applying myself, instead of understanding that I was having trouble. Needless to say, I didn't ask for her help very often, except under threat of bodily harm or house arrest carried out by my mother.
I was grounded for approximately 742 days of my high school career.
So, when I got an email from my youngest's teacher about some writing assignments he had missed, I responded quickly that I would talk to him about it and we would get things straightened out as soon as possible. Only, I read it wrong...
And mixed up the assignments she was talking about...
And confused the whole situation further...
And had to ask her for more time, because I had made things worse...
And it hit me that as much as I have learned to compensate for my struggles with processing, it is a lifelong challenge.
I have to remind myself to slow down, to re-read, to clarify things that I am not quite sure about.
And sometimes, I forget.
And I think of all the times that I have felt totally lost, when it seemed everyone around me knew what they were doing, even now, still, today.
When everyone else brings the paperwork to the meeting and is on time; I wonder why it is so hard for me. Why am I such a scatterbrain?
And I look at my kid's desk and backpack and have a flashback of my own.
And I feel for my kid.
And I am thankful that I "get" it.
And I hope I can help him.
And I think that he will probably always struggle, as I have.
And then, the ray of light: I have a life. I have held on to jobs. I have made something of myself, though it is miles short of the goals I have set. I have SURVIVED.
He will, too.
What I want to talk about is the way people interpret information. Specifically, how me and my youngest son see and hear things.
When I was a child, before I began school, I was a genius. I read whole books way before I entered Kindergarten. I had a grasp of the English language that probably rivaled that of an average ten or twelve year old when I was five and my use of sarcasm and humor made adults weep with glee.
It was universally accepted (okay, my mom WAS my universe when I was five) that I would get straight A's all through my school years, that I would graduate from Princeton and become a successful brain surgeon/astrophysicist, or at the very least, a writer that used correct grammar.
It didn't turn out that way; far from it, in fact.
By the time I hit second grade, I was already "not working up to my potential". I fidgeted. I lost my homework. I didn't DO my homework. My desk and bookbag were overflowing with crap and my mother and my teacher were both shaking their heads (at best) and screaming (at worst) at me over my laziness.
"If you would only APPLY yourself!"
If I had a nickel for every time I heard that throughout my school years, I'd at least have a couple, two, t'ree bucks.
I carried on believing that I had just been a lazy student until I had my own children and I started seeing my struggles in theirs; especially, in my youngest son's.
Like me, he talked and read very early. My mom often recounts a story of E, sitting on her lap, at about eighteen months old, reading her Scrabble letters out loud while we played. He was and is a very bright boy.
Within the first few months of Kindergarten, we realized that he was having trouble, though. It turns out, this trouble had a name: Processing Disorder.
There are three basic types of processing disorders: Auditory, Visual and Sensory. Sound, Sight and Touch/Feel or Tactile.
E and I both have trouble with the way we interpret what we read. Often, our brains are on the next paragraph, while our eyes are still on the one before. It leads to confusion.
We are also not very good at following spoken directions, which is part of the reason for my doing so poorly in school, when nearly every class relied on lots of talking by the teacher and lots of note taking by the students. I would invariably get lost at some point, quit trying to figure out what I was supposed to be writing and would start daydreaming and doodling.
When the time came to turn in the homework that was assigned during the drone, I would usually have missed it, taking the parking break off the steamroller at the top of the hill of crap that was my missed assignments.
In classes that I had a good grasp of: History or English, I could usually make it up and get by; but math, especially Algebra, was another story. If I missed one thing, I was lost for days and weeks, often never to get back on top of things. It didn't help that my Algebra teacher was the same one for three years in a row and that she was a psychotic, polyester pantsuit wearing, drunk. I was afraid to approach her for help and when I did, she repeated the tired old line about being lazy and not applying myself, instead of understanding that I was having trouble. Needless to say, I didn't ask for her help very often, except under threat of bodily harm or house arrest carried out by my mother.
I was grounded for approximately 742 days of my high school career.
So, when I got an email from my youngest's teacher about some writing assignments he had missed, I responded quickly that I would talk to him about it and we would get things straightened out as soon as possible. Only, I read it wrong...
And mixed up the assignments she was talking about...
And confused the whole situation further...
And had to ask her for more time, because I had made things worse...
And it hit me that as much as I have learned to compensate for my struggles with processing, it is a lifelong challenge.
I have to remind myself to slow down, to re-read, to clarify things that I am not quite sure about.
And sometimes, I forget.
And I think of all the times that I have felt totally lost, when it seemed everyone around me knew what they were doing, even now, still, today.
When everyone else brings the paperwork to the meeting and is on time; I wonder why it is so hard for me. Why am I such a scatterbrain?
And I look at my kid's desk and backpack and have a flashback of my own.
And I feel for my kid.
And I am thankful that I "get" it.
And I hope I can help him.
And I think that he will probably always struggle, as I have.
And then, the ray of light: I have a life. I have held on to jobs. I have made something of myself, though it is miles short of the goals I have set. I have SURVIVED.
He will, too.
Wednesday, February 19, 2014
Who Needs Rules?
My son, Charles has no use for arbitrary rules. Real rules, like safety-type rules, he is mostly down with. At least, the ones he agrees with. The fact that he cannot drive a car because he:
a) is too young to get a license
b) is unable to pass the written test
and
c) has 20/375 vision
does not sit well with him. If there is a way to get a license, then, by god, he will get one with his will.
Thankfully, I have another year or so to cross that bridge (and maybe move to Wyoming, where his driving probably won't kill anyone).
Anyway, back to Mom's Arbitrary Rules and the reason for this post. We have the same fight, every day over what shelf the acne treatment pads should go on.
I know. It sounds silly even as I type it.
Here's the thing, though. IT DRIVES ME CRAZY! I have them put away, neatly, on the lower shelf behind the cabinet door. Invariably, the next time I go into the bathroom, they are on the top of the cabinet. Every time.
My house is not haunted.
I don't have little demons moving things around, trying to freak me out. Even if I did, I would hope they would do something a bit more interesting than move Charles' acne medicine.
No, this is Charles telling me exactly what he thinks of my stupid rules. Because, really? Is anyone going to die if the stupid acne pads are on top of the cabinet? No. Mom is just going to go a little bit crazier. And isn't that the end game? Making mom crazier? Because crazy mom is HILARIOUS!
I used to think so, but now I am not so sure.
I think after awhile, after so many years of people telling you that your shoes go on the other feet, that the dirty plates go on the right side of the sink AFTER THEY ARE RINSED, that you CANNOT DRIVE MOM'S CAR, you kind of need to rebel a little.
I want my kid to buck the system. True, that he is bucking MY system kind of makes me nuts, but do I really want a kid that is going to just follow along with any old thing any random person "in authority" says?
No.
I want my kid to push back against those who will tell him what he can and cannot do without giving him the why. Because some of those whys are arbitrary.
"It's the way things are done" is arbitrary. It's also a cop out.
So, buck that system, my Charles. I'll be right behind you, with bail money if need be.
a) is too young to get a license
b) is unable to pass the written test
and
c) has 20/375 vision
does not sit well with him. If there is a way to get a license, then, by god, he will get one with his will.
Thankfully, I have another year or so to cross that bridge (and maybe move to Wyoming, where his driving probably won't kill anyone).
Anyway, back to Mom's Arbitrary Rules and the reason for this post. We have the same fight, every day over what shelf the acne treatment pads should go on.
I know. It sounds silly even as I type it.
Here's the thing, though. IT DRIVES ME CRAZY! I have them put away, neatly, on the lower shelf behind the cabinet door. Invariably, the next time I go into the bathroom, they are on the top of the cabinet. Every time.
My house is not haunted.
I don't have little demons moving things around, trying to freak me out. Even if I did, I would hope they would do something a bit more interesting than move Charles' acne medicine.
No, this is Charles telling me exactly what he thinks of my stupid rules. Because, really? Is anyone going to die if the stupid acne pads are on top of the cabinet? No. Mom is just going to go a little bit crazier. And isn't that the end game? Making mom crazier? Because crazy mom is HILARIOUS!
I used to think so, but now I am not so sure.
I think after awhile, after so many years of people telling you that your shoes go on the other feet, that the dirty plates go on the right side of the sink AFTER THEY ARE RINSED, that you CANNOT DRIVE MOM'S CAR, you kind of need to rebel a little.
I want my kid to buck the system. True, that he is bucking MY system kind of makes me nuts, but do I really want a kid that is going to just follow along with any old thing any random person "in authority" says?
No.
I want my kid to push back against those who will tell him what he can and cannot do without giving him the why. Because some of those whys are arbitrary.
"It's the way things are done" is arbitrary. It's also a cop out.
So, buck that system, my Charles. I'll be right behind you, with bail money if need be.
Wednesday, February 5, 2014
Sentimental Me
Maybe it's foolish. I've been called worse things.
It's easy to become sentimental as you get older, but I was born that way. From as far back as I can remember, I saved little things. I had a terrible time parting with anything someone I loved gave me, whether it was a plastic ring from a gumball machine or a stuffed animal or a birthday card.
When my Mom, or grandma, or grandpa would kiss my cheek, I would be careful not to rub it and could feel it, lingering there, for a long time afterwards.
The one and only year I went to camp, the girls in my cabin were mean and clique-y. Though I felt a bit lonely, the fact that they weren't nice to me didn't bother me as much as the fact that they wrecked the bed that my mom so nicely made for me before she left. All those thoughtful, tight tucks, undone in a fit of eleven year old menace.
If you look in my purse, I know you will find at least one old shopping list written by my Mom and a note about my worn out tires from my Dad. In the kitchen drawer, notes from my Dear Husband about slippery roads, hot coffee and cats. On the top shelf of the closet, nearly every drawing, project and card ever made by my children and birthday cards from relatives dating back to the 70's.
My father's mother passed away last April, but her voice is still on my answering machine. I'd still have my other grandmother's voice as well, but her last message to me got erased. Believe me when I say it really bothers me that it's gone. I also had my youngest son's voice on there, from the day he first rode his bike (alone!) to a friend's house. He called as soon as he got there. "Hi Mom. Well, I just wanted to call and say that I made it and I'm fine. Well, see you later.". You see, I have it memorized, even though it too got erased when we had to get a new phone.
Books and clothes and televisions and cars and other things, I have no problem giving away. I don't get attached to big things; not really. I'd rather someone else have them, if they can be useful to them. Over the years, I've managed to pare down the sky high pile of letters and cards to a more manageable amount, as well. Now, instead of every birthday card my great grandmother ever sent me, I only have one; but I won't part with it.
I still have my favorite childhood stuffed animals and every silly letter my husband wrote to me when we were apart for four months the year we got engaged.
I worry that I haven't taken enough pictures, spent enough time, taught my children all the things they need to know from their mom. I worry that they'll grow up and leave and I worry that they won't.
I want to take all these things; the papers, the pictures, the voices and the worries and lock them away in a time capsule. I want to cement them into the cornerstone of my life; knowing that these things are only a small representation of what really matters.
Here and now, what I have shared, what I remember, who I have loved, who knows that I love them; those are the real things worth keeping.
It's easy to become sentimental as you get older, but I was born that way. From as far back as I can remember, I saved little things. I had a terrible time parting with anything someone I loved gave me, whether it was a plastic ring from a gumball machine or a stuffed animal or a birthday card.
When my Mom, or grandma, or grandpa would kiss my cheek, I would be careful not to rub it and could feel it, lingering there, for a long time afterwards.
The one and only year I went to camp, the girls in my cabin were mean and clique-y. Though I felt a bit lonely, the fact that they weren't nice to me didn't bother me as much as the fact that they wrecked the bed that my mom so nicely made for me before she left. All those thoughtful, tight tucks, undone in a fit of eleven year old menace.
If you look in my purse, I know you will find at least one old shopping list written by my Mom and a note about my worn out tires from my Dad. In the kitchen drawer, notes from my Dear Husband about slippery roads, hot coffee and cats. On the top shelf of the closet, nearly every drawing, project and card ever made by my children and birthday cards from relatives dating back to the 70's.
My father's mother passed away last April, but her voice is still on my answering machine. I'd still have my other grandmother's voice as well, but her last message to me got erased. Believe me when I say it really bothers me that it's gone. I also had my youngest son's voice on there, from the day he first rode his bike (alone!) to a friend's house. He called as soon as he got there. "Hi Mom. Well, I just wanted to call and say that I made it and I'm fine. Well, see you later.". You see, I have it memorized, even though it too got erased when we had to get a new phone.
Books and clothes and televisions and cars and other things, I have no problem giving away. I don't get attached to big things; not really. I'd rather someone else have them, if they can be useful to them. Over the years, I've managed to pare down the sky high pile of letters and cards to a more manageable amount, as well. Now, instead of every birthday card my great grandmother ever sent me, I only have one; but I won't part with it.
I still have my favorite childhood stuffed animals and every silly letter my husband wrote to me when we were apart for four months the year we got engaged.
I worry that I haven't taken enough pictures, spent enough time, taught my children all the things they need to know from their mom. I worry that they'll grow up and leave and I worry that they won't.
I want to take all these things; the papers, the pictures, the voices and the worries and lock them away in a time capsule. I want to cement them into the cornerstone of my life; knowing that these things are only a small representation of what really matters.
Here and now, what I have shared, what I remember, who I have loved, who knows that I love them; those are the real things worth keeping.
Saturday, February 1, 2014
Hard to Find the Words
You can probably tell by the fly by the seat of my brain writing style that I usually just plow right ahead with whatever I am thinking about. Today, I am having trouble.
I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had. I might never get to that point. I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.
Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome. I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.
I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered. The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons. I can understand needing a place to work through their feelings.
I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis. I'm just acknowledging that it happens. I don't wish to drag these women through the mud. There are so many complex issues to the dilemma that factor in: Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it. I really do.
That a woman might make this decision at all is not what bothered me. At least, that's only a small part of it. It does bother me because I take it as a reflection of how people feel about my living, breathing kid. I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her. It isn't about me and I don't wish to make it about me. It's just hard to separate, sometimes. Her body, her decision. I understand and agree that this is the way it should and must be.
What really bothered me was reading how some of these "procedures" take place. I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies. Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms. Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.
It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process. They talked about being sad over their "lost" babies.
This was where I began to lose it.
I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive. Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?
I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.
I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.
I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision. I completely understand this logic if a fetus' condition is incompatible with life. There are plenty of complications that fall into this category, but Down syndrome is not one of them. Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long. But most of these issues are correctable. With intervention, the vast majority of babies born with T-21 will not just live, but thrive.
There is also plenty of debate about how much intervention is too much and I completely understand it. I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator. Some were three and four months old. It is worth noting that none of them had Down syndrome. One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born. It was truly the saddest baby smile I have ever witnessed. I want to cry thinking about it now, even fourteen years later. I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles. Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.
I often wonder what happened to him.
All this begs the question: At what point does it become worth the fight? Understandably, it is different for everyone. I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair. I think about the people I know who are dependent on various interventions to live. I wonder at what point they would feel like their lives were not worth living. Mostly, I see people who are at peace with their circumstances. Whether you want these circumstances for yourself or your child is mostly irrelevant. Most of us will never know what it feels like to be in those shoes.
So, what of these parents who decide to let their children go? At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred. How DARE they write about how sad they were!!! THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!! FUCK THEIR SADNESS!!!
Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me. It felt like killing. I began questioning my own pro-choice views. I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat. I have always found late term abortions troubling, but conceded that they needed to be legal. I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe. Yes, it's an option, but not one that I would want forced on anyone. There are plenty of kids languishing in the system, already.
In the spirit of full disclosure, I had an abortion myself, in my early twenties. I don't regret it and I don't feel guilty about it. The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy. I might have married that other guy. In my view, I saved the beautiful family I have now by sacrificing those cells years ago. Maybe you will call me a hypocrite. Who am I to judge anyone? I also have the benefit of hindsight working for me. Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury. All they can see is NOW and the future is a scary unknown. I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions. It's not my place to judge or question them. I can only speak about my own feelings.
I don't know where to draw the line for anyone else. It's not my right to draw that line. All I know is that I am troubled by this discovery. I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings. Hindsight might give us blinders.
I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life. She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did. Again, hindsight in action. Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.
So, what is the difference? You might be wondering. The difference is that my kid and kids like him don't suffer from Down syndrome. They are living and thriving into their 50's, 60's and 70's. And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes. And I am trying, mightily, to put myself in yours. I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.
I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement. I believe in choice. I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.
I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had. I might never get to that point. I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.
Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome. I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.
I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered. The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons. I can understand needing a place to work through their feelings.
I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis. I'm just acknowledging that it happens. I don't wish to drag these women through the mud. There are so many complex issues to the dilemma that factor in: Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it. I really do.
That a woman might make this decision at all is not what bothered me. At least, that's only a small part of it. It does bother me because I take it as a reflection of how people feel about my living, breathing kid. I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her. It isn't about me and I don't wish to make it about me. It's just hard to separate, sometimes. Her body, her decision. I understand and agree that this is the way it should and must be.
What really bothered me was reading how some of these "procedures" take place. I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies. Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms. Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.
It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process. They talked about being sad over their "lost" babies.
This was where I began to lose it.
I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive. Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?
I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.
I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.
I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision. I completely understand this logic if a fetus' condition is incompatible with life. There are plenty of complications that fall into this category, but Down syndrome is not one of them. Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long. But most of these issues are correctable. With intervention, the vast majority of babies born with T-21 will not just live, but thrive.
There is also plenty of debate about how much intervention is too much and I completely understand it. I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator. Some were three and four months old. It is worth noting that none of them had Down syndrome. One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born. It was truly the saddest baby smile I have ever witnessed. I want to cry thinking about it now, even fourteen years later. I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles. Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.
I often wonder what happened to him.
All this begs the question: At what point does it become worth the fight? Understandably, it is different for everyone. I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair. I think about the people I know who are dependent on various interventions to live. I wonder at what point they would feel like their lives were not worth living. Mostly, I see people who are at peace with their circumstances. Whether you want these circumstances for yourself or your child is mostly irrelevant. Most of us will never know what it feels like to be in those shoes.
So, what of these parents who decide to let their children go? At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred. How DARE they write about how sad they were!!! THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!! FUCK THEIR SADNESS!!!
Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me. It felt like killing. I began questioning my own pro-choice views. I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat. I have always found late term abortions troubling, but conceded that they needed to be legal. I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe. Yes, it's an option, but not one that I would want forced on anyone. There are plenty of kids languishing in the system, already.
In the spirit of full disclosure, I had an abortion myself, in my early twenties. I don't regret it and I don't feel guilty about it. The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy. I might have married that other guy. In my view, I saved the beautiful family I have now by sacrificing those cells years ago. Maybe you will call me a hypocrite. Who am I to judge anyone? I also have the benefit of hindsight working for me. Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury. All they can see is NOW and the future is a scary unknown. I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions. It's not my place to judge or question them. I can only speak about my own feelings.
I don't know where to draw the line for anyone else. It's not my right to draw that line. All I know is that I am troubled by this discovery. I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings. Hindsight might give us blinders.
I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life. She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did. Again, hindsight in action. Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.
So, what is the difference? You might be wondering. The difference is that my kid and kids like him don't suffer from Down syndrome. They are living and thriving into their 50's, 60's and 70's. And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes. And I am trying, mightily, to put myself in yours. I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.
I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement. I believe in choice. I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.
Wednesday, January 29, 2014
IEP's, Meltdowns and Being the Very Best Jerk I Can Be
So, we had an IEP planned for yesterday that didn't happen. It was -20 degrees here and school was cancelled, but the meeting was called off last Friday for reasons I can best describe as vague.
I get it. Things happen. Meetings get cancelled. Life goes on.
If it hadn't been the most important meeting in my kid's school life, I probably would have been fine with the change of plans. But, it is the most important meeting in my kid's life, so I freaked out a little bit. I may have called the coordinator a few times. I may have left a shaky voiced message on her voicemail. Did you ever get so angry you were actually shaking? Yes. That.
Anyway, this was supposed to be a high school placement meeting for my kid. It had been planned for months. I was anticipating it with equal parts dread and excitement. Dread, because I was pretty certain that their offerings were not going to be exactly what we wanted and we would probably be gearing up for a fight. Excitement because, hey! It's not every day that your kid starts high school!
So, you can see why pushing it off (for three months! What?!?!?) would not make me happy. Now, I have more time to perseverate on the whole business; ponder the endless unknowns; fight to keep the devil on my right shoulder and the Polyanna angel on my left from throttling each other.
Now, I've had a couple of days to digest the whole business and I decided that I would write a letter to Chooch's team, outlining the way I want his high school career to look; ideas that I have been thinking about since, oh...1999.
and here it is:
Dear Team,
This is my son, Charles. We are here to find the best possible placement for him. Before we do that, however, I want to remind you that he is not just a set of strengths and weaknesses. He is a teenager, a much-loved son and brother, a good friend and a bundle of wit and sarcasm.
He wants what all of us want out of life: To love and be loved, to have friends and to be included. That last part is tricky, because it can't really be quantified. I am afraid that sometimes, the human being gets lost in the graphs and percentiles. I am afraid that for some, my Charles is a challenge at best and a problem at worst.
Numbers are not my son's best friend, whether they are problems on a math work sheet, IQ points or figures on a percentile chart. I realize that teaching involves testing and reporting, but I urge you all to look beyond that towards what really makes a life: Being accepted and included.
Inclusion is not a pie in the sky fantasy, it is the only way to ensure that my child's life is seen as having as much value as those of his typical peers. If you think I am exaggerating, consider what happens when people are segregated from society.
Times have changed for people with Down syndrome, but until stories of prom kings and queens and team managers are more than feel good anecdotes, people like my son will not be fully participating members of society and that is what I want for my son. My husband and I want full participation in life (not just school) for Charles and every child who comes after him.
I look forward to the day Charles walks across the stage in his cap and gown, ready to accept his certificate and to step into a world that is more accepting and inclusive than it is today, because of the work of teams like this.
Thank you.
I get it. Things happen. Meetings get cancelled. Life goes on.
If it hadn't been the most important meeting in my kid's school life, I probably would have been fine with the change of plans. But, it is the most important meeting in my kid's life, so I freaked out a little bit. I may have called the coordinator a few times. I may have left a shaky voiced message on her voicemail. Did you ever get so angry you were actually shaking? Yes. That.
Anyway, this was supposed to be a high school placement meeting for my kid. It had been planned for months. I was anticipating it with equal parts dread and excitement. Dread, because I was pretty certain that their offerings were not going to be exactly what we wanted and we would probably be gearing up for a fight. Excitement because, hey! It's not every day that your kid starts high school!
So, you can see why pushing it off (for three months! What?!?!?) would not make me happy. Now, I have more time to perseverate on the whole business; ponder the endless unknowns; fight to keep the devil on my right shoulder and the Polyanna angel on my left from throttling each other.
Now, I've had a couple of days to digest the whole business and I decided that I would write a letter to Chooch's team, outlining the way I want his high school career to look; ideas that I have been thinking about since, oh...1999.
and here it is:
Dear Team,
This is my son, Charles. We are here to find the best possible placement for him. Before we do that, however, I want to remind you that he is not just a set of strengths and weaknesses. He is a teenager, a much-loved son and brother, a good friend and a bundle of wit and sarcasm.
He wants what all of us want out of life: To love and be loved, to have friends and to be included. That last part is tricky, because it can't really be quantified. I am afraid that sometimes, the human being gets lost in the graphs and percentiles. I am afraid that for some, my Charles is a challenge at best and a problem at worst.
Numbers are not my son's best friend, whether they are problems on a math work sheet, IQ points or figures on a percentile chart. I realize that teaching involves testing and reporting, but I urge you all to look beyond that towards what really makes a life: Being accepted and included.
Inclusion is not a pie in the sky fantasy, it is the only way to ensure that my child's life is seen as having as much value as those of his typical peers. If you think I am exaggerating, consider what happens when people are segregated from society.
Times have changed for people with Down syndrome, but until stories of prom kings and queens and team managers are more than feel good anecdotes, people like my son will not be fully participating members of society and that is what I want for my son. My husband and I want full participation in life (not just school) for Charles and every child who comes after him.
I look forward to the day Charles walks across the stage in his cap and gown, ready to accept his certificate and to step into a world that is more accepting and inclusive than it is today, because of the work of teams like this.
Thank you.
Tuesday, January 14, 2014
Heart Tale
In 1998, when our oldest son turned two, my husband and I started thinking that it would be nice to have another child. Suddenly, our baby was turning into a big boy and we were starting to miss that "new baby" smell.
It was October when we found out we would be parents again. We hoped for another boy to be best friends with our oldest.
Months passed and my pregnancy was smooth. In February, we went for an ultrasound. The technician said that she was having trouble viewing the baby (boy!)'s heart and could we make an appointment for a level two ultrasound?
We were thrilled to get our wish of a boy, who we would name Charles, after my dear grandfather. The alarm bells did not go off at all. At the level two appointment, I had no fear until the technician left the room and came back in with my OB. "Just trying to see his heart!", they chuckled uncomfortably. He suggested that we talk in his office after I wiped the goo from my stomach.
Here is where the alarm bells started going off.
We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance.
He suggested, gently, that I have a pediatric cardiologist look at the ultrasound and that I have an amniocentesis to check for Down syndrome. I agreed to both these suggestions and at some point, we walked out of the office, shocked and stunned and numb.
We had to wait a few days for both appointments and there would be further waiting to get the results of the amnio.
Waiting really sucks.
Talking to the pediatric cardiologist was surreal. She explained the diagnosis: Complete Atrioventricular Canal Defect. It sounded scary. Here is the definition taken from the American Heart Association website:
A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.
This was no run-of-the-mill hole that would close on it's own. My baby had a big hole where he should have valves and chambers. I was aware of the doctor talking about repair and heart failure and how big my boy would have to be before they could open up his chest, but all I could think about was how sorry I was that he would have to endure all that. This poor little guy, not even out of the oven yet, was looking at open heart surgery before he turned one.
"But, but ( I kept saying) he is growing so well!" and he was. I could not imagine how he could be so ill when he seemed to be thriving in my belly. The truth was, his heart didn't have to do much in the womb. I was doing most of the work at this point. I was happy to keep him safe for the time being and terrified of what would happen when he was born.
In March, we found out our second son had Down syndrome.
We had expected this to be the case, since learning that Charles' particular defect was so common in children with Down syndrome, but it was another blow to us. So much "bad" news about a kid who would, over the next 15 years, enrich our lives beyond measure. But we didn't know that, yet. This was a time before Facebook or Google. Finding information about Charles' issues was daunting and mostly, really scary. Hardly any of the information I found was comforting.
The weekend after the Down syndrome diagnosis, we went out to breakfast. We were scared and sad and looking to distract our two year old. When we sat down, we saw a family in a booth nearby. Like us, they were a mom and dad and son. Their son looked to be about fifteen and he had Down syndrome. I marveled at how totally normal they looked; how happy. I looked at my husband at that moment, saw that he was seeing the same thing and we both instantly knew it would be fine. We would get through and someday, we would be the family for someone else to look at and say "Huh. They look so normal".
If anyone wonders why I push/scream/beg for inclusion at every level, this is why, but that is a blog post (or three) for another day.
Charles let us know of his imminent arrival in the wee hours of June 6th, in the middle of a fierce thunderstorm. He wasn't due for another three weeks, but Charles has never had much use for schedules except his own.
When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy. I had never been more happy to meet another human being in my life. After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.
Over the next almost six months, our main jobs were to keep Charles as healthy as possible and to get him to gain weight. He was not what you would call a champion eater, so I was pumping breast milk night and day for him. He was diagnosed with failure to thrive and we began supplementing his breast milk bottles with a heavy formula administered through an N.G. tube overnight.
By the time he was four months old, we were giving him medicine to offset the affects of heart failure. I've learned that heart failure sounds scarier than it is, but it's still nothing you want associated with your kid. At this point, he had bulked up sufficiently that they decided to schedule his surgery. He would be admitted to Children's Memorial Hospital in Chicago on December 5th, 1999, one day before his six month birthday.
As I said before, waiting sucks.
I passed the time marveling at his smiles and laughs and his long, Kewpie doll hair. I found myself looking at his sweet, smooth baby chest, knowing that he would soon have a long scar, marring it forever. I put my hand over his broken little heart and willed everything to work out well.
As we exited the tollway on the way to the hospital in the dark of the early, winter morning, the song "You'll Be in my Heart" (listen to it here) came on the radio. I literally can't type those words or hear the opening notes of the song without crying.
Our boy was so little that the anesthesiologist carried him in his arms back to the operating room. The fact that he was smiling, that he had no idea what was about to come made it almost worse for me.
Then, the waiting. So much sucky waiting.
We were warned that our baby would be unconscious and that he would look bloated. He was and he did and it was a little hard to take, but he was alive and by all accounts doing very, very well.
Charles went from a sleepy, poorly eating baby to a chunky, healthy baby within weeks of his first surgery. He was home within a week. The change was nothing short of miraculous as far as I was concerned, but typical to the doctors and nurses whose job it is to fix these kids.
It is amazing to me that a surgeon could take my poor son's little mess of a heart and make it into a well functioning organ, but that is exactly what he did. I was grateful to him for delivering my son back to me and even more grateful that when he needed a second repair to fix a leaky valve almost six years later, the same, amazing surgeon would again bring him safely through and make his heart better than new.
The second surgery was in some ways harder than the first, because at six, Charles was well aware of needles and hospitals and pain, but he was braver than the rest of us. He handed over his Gameboy, let us hug and kiss him and wheeled away from us.
Hours and hours of terrible waiting; but again, he came through brilliantly and recovered so quickly that we had to slow him down for fear that he would open up his surgical scar or injure his healing breast bone. Keeping a six year old boy still is no easy task. Less than three weeks after his surgery, he was climbing up the school bus steps on his way to Kindergarten. I shed many happy tears that day.
Charles is now fourteen and he has a routine visit to the cardiologist just once a year. His repairs were so well done, that even his cardiologist has trouble hearing any murmur (due to a slightly, chronically leaky valve) anymore. He takes no heart medication at all and has no restrictions because of his condition. The only physical reminder of his surgeries is the scar from his clavicle to above his navel. He talks about it now like it's a war wound. He's kind of proud of it. He's definitely earned that right.
It was October when we found out we would be parents again. We hoped for another boy to be best friends with our oldest.
Months passed and my pregnancy was smooth. In February, we went for an ultrasound. The technician said that she was having trouble viewing the baby (boy!)'s heart and could we make an appointment for a level two ultrasound?
We were thrilled to get our wish of a boy, who we would name Charles, after my dear grandfather. The alarm bells did not go off at all. At the level two appointment, I had no fear until the technician left the room and came back in with my OB. "Just trying to see his heart!", they chuckled uncomfortably. He suggested that we talk in his office after I wiped the goo from my stomach.
Here is where the alarm bells started going off.
We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance.
He suggested, gently, that I have a pediatric cardiologist look at the ultrasound and that I have an amniocentesis to check for Down syndrome. I agreed to both these suggestions and at some point, we walked out of the office, shocked and stunned and numb.
We had to wait a few days for both appointments and there would be further waiting to get the results of the amnio.
Waiting really sucks.
Talking to the pediatric cardiologist was surreal. She explained the diagnosis: Complete Atrioventricular Canal Defect. It sounded scary. Here is the definition taken from the American Heart Association website:
A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.
This was no run-of-the-mill hole that would close on it's own. My baby had a big hole where he should have valves and chambers. I was aware of the doctor talking about repair and heart failure and how big my boy would have to be before they could open up his chest, but all I could think about was how sorry I was that he would have to endure all that. This poor little guy, not even out of the oven yet, was looking at open heart surgery before he turned one.
"But, but ( I kept saying) he is growing so well!" and he was. I could not imagine how he could be so ill when he seemed to be thriving in my belly. The truth was, his heart didn't have to do much in the womb. I was doing most of the work at this point. I was happy to keep him safe for the time being and terrified of what would happen when he was born.
In March, we found out our second son had Down syndrome.
We had expected this to be the case, since learning that Charles' particular defect was so common in children with Down syndrome, but it was another blow to us. So much "bad" news about a kid who would, over the next 15 years, enrich our lives beyond measure. But we didn't know that, yet. This was a time before Facebook or Google. Finding information about Charles' issues was daunting and mostly, really scary. Hardly any of the information I found was comforting.
The weekend after the Down syndrome diagnosis, we went out to breakfast. We were scared and sad and looking to distract our two year old. When we sat down, we saw a family in a booth nearby. Like us, they were a mom and dad and son. Their son looked to be about fifteen and he had Down syndrome. I marveled at how totally normal they looked; how happy. I looked at my husband at that moment, saw that he was seeing the same thing and we both instantly knew it would be fine. We would get through and someday, we would be the family for someone else to look at and say "Huh. They look so normal".
If anyone wonders why I push/scream/beg for inclusion at every level, this is why, but that is a blog post (or three) for another day.
Charles let us know of his imminent arrival in the wee hours of June 6th, in the middle of a fierce thunderstorm. He wasn't due for another three weeks, but Charles has never had much use for schedules except his own.
When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy. I had never been more happy to meet another human being in my life. After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.
Over the next almost six months, our main jobs were to keep Charles as healthy as possible and to get him to gain weight. He was not what you would call a champion eater, so I was pumping breast milk night and day for him. He was diagnosed with failure to thrive and we began supplementing his breast milk bottles with a heavy formula administered through an N.G. tube overnight.
By the time he was four months old, we were giving him medicine to offset the affects of heart failure. I've learned that heart failure sounds scarier than it is, but it's still nothing you want associated with your kid. At this point, he had bulked up sufficiently that they decided to schedule his surgery. He would be admitted to Children's Memorial Hospital in Chicago on December 5th, 1999, one day before his six month birthday.
As I said before, waiting sucks.
I passed the time marveling at his smiles and laughs and his long, Kewpie doll hair. I found myself looking at his sweet, smooth baby chest, knowing that he would soon have a long scar, marring it forever. I put my hand over his broken little heart and willed everything to work out well.
As we exited the tollway on the way to the hospital in the dark of the early, winter morning, the song "You'll Be in my Heart" (listen to it here) came on the radio. I literally can't type those words or hear the opening notes of the song without crying.
Our boy was so little that the anesthesiologist carried him in his arms back to the operating room. The fact that he was smiling, that he had no idea what was about to come made it almost worse for me.
Then, the waiting. So much sucky waiting.
We were warned that our baby would be unconscious and that he would look bloated. He was and he did and it was a little hard to take, but he was alive and by all accounts doing very, very well.
Charles went from a sleepy, poorly eating baby to a chunky, healthy baby within weeks of his first surgery. He was home within a week. The change was nothing short of miraculous as far as I was concerned, but typical to the doctors and nurses whose job it is to fix these kids.
The second surgery was in some ways harder than the first, because at six, Charles was well aware of needles and hospitals and pain, but he was braver than the rest of us. He handed over his Gameboy, let us hug and kiss him and wheeled away from us.
Hours and hours of terrible waiting; but again, he came through brilliantly and recovered so quickly that we had to slow him down for fear that he would open up his surgical scar or injure his healing breast bone. Keeping a six year old boy still is no easy task. Less than three weeks after his surgery, he was climbing up the school bus steps on his way to Kindergarten. I shed many happy tears that day.
Charles is now fourteen and he has a routine visit to the cardiologist just once a year. His repairs were so well done, that even his cardiologist has trouble hearing any murmur (due to a slightly, chronically leaky valve) anymore. He takes no heart medication at all and has no restrictions because of his condition. The only physical reminder of his surgeries is the scar from his clavicle to above his navel. He talks about it now like it's a war wound. He's kind of proud of it. He's definitely earned that right.
Monday, December 30, 2013
Money Doesn't Buy Happiness But Neither Does a Foreclosure Notice
I am not poor. I have a roof over my head (as long as I can stay on top of the sky-high mortgage for my cosy, three bed, one bath ranch), I have warm clothes, I have food, I have my basic needs covered. My furnace is running, which is a good thing since it is nine degrees outside. I contributed to charities this year and bought birthday and Christmas gifts. I even have cable and WiFi, which is how I am able to write this, today. Of course, if I had no WiFi, or laptop, I could always go to my local library to use their computers. It would be inconvenient, but obviously, doable.
This is what I want to talk about today; the inconvenience of being in a less than ideal money situation.
My family and I live paycheck to paycheck. We put away a few dollars every week for a rainy day, but our little savings would not do much to save us from financial ruin.
It's something, enough to spring for a part for the ever-failing dryer, or to pay an unexpected expense; provided it was a relatively small one. It won't cover my husband missing a few days of work if he caught the flu, though. My husband is in a union and his salary is very good, but I would love to talk to the geniuses who decided not to negotiate for sick or vacation pay or even holiday pay (hello? Christmas and New Year's?).
In an ideal world, we would figure out the cost of those days off (five major unpaid holidays, two weeks of vacation and another cushion of five days for illness) and we would come up with an amount in the neighborhood of $5000. Saving for that would mean putting aside $100 per week. Putting aside another twenty per week for unexpected costs puts our minimum ideal savings plan at $120 per week. Some weeks we have it, some weeks we don't, for reasons I illustrated earlier.
The problem with this is that often times on the lean weeks we need to borrow from the fat weeks to get through. What winds up happening is that we never really save anything. We usually get a decent tax refund and a shrewd financial planner would probably tell us to put that money aside. That would be great, if at some point we didn't need a new washer/dryer/exhaust system for the car/roof/windows... you get the picture.
The vicious cycle that we live in is that we can never hold onto a chunk of money for very long. It's not that we blow it on fancy clothes or purses or shoes or vacations (ha!), it's that it gets pissed away on stuff that has waited too long to ignore.
This is where the inconvenience part really comes into play. If we had more money, we might be able to look for sales on things, so that we can buy them for less instead of buying them RIGHT! NOW! for whatever cost, because it went bad three days ago and we can't live without it for much longer. It would mean replacing our roof before it starts leaking and the damage drives up the cost. It might mean never having to pay late fees. It also might mean that our credit would be better since we wouldn't be late paying bills. Our mortgage company couldn't charge us all the fees involved with paying late. An extra sixty here and thirty there, really adds up. If our credit was better, we could also negotiate a better rate, instead of the 6.75% we are paying now.
Even with all of this, I haven't even gotten to the worst part: the stress that comes from worry. If all I ever had to worry about was money, I guess I would be okay. I'm okay anyway and of course, there is more to my worry than the balance in my checking account. Having had my middle child go through open heart surgery twice in his young life, I can assure you that when it comes right down to it, when your loved ones are safe and healthy, money seems like a mere nuisance.
You could ask me why I don't work. I mean, I did work full time for about three years after my kids were in school full time. The reasons for my not working now are as simple as no one I want to work for wants to hire me and as complex as my availability. The bottom line is that I want to be home when my kids walk through the door from school. Working around that is challenging. You might scoff and grumble that it's my own fault. I am in a mess of my own making.
You would be right.
I take full responsibility for not earning an income. I also know that when I take my kids to the movies or bowling or out for a cheap bite, I probably can't afford it. I do it anyway. When you don't have any family around, weekends present a challenge. Movies fill the time that a big family dinner would in my husband's or my past. Times change. It's the same reason I don't let the cable lapse.
Which brings me to the reason for this post.
Here I am, with my kids on winter break and they shut off the cable and WiFi.
I have a choice: Put what little cash I have left in the bank so that I can pay the bill and have it turned back on, or have a tiny bit of money and wait it out until Friday, when DH gets paid.
Since I have enough food and crock pot recipes to get us through the week, I chose to turn the cable (and phone and WiFi) back on. The prospect of being without, with single digit temps outside, for the last week of Christmas vacation was bleak, to say the least. This way, at least we can use our computer, watch some movies and if friends call to invite us somewhere, they will get through, and not receive a vague message about our phone not "accepting calls" (code for: These deadbeats haven't paid us!).
I know that I am one of the lucky ones. I am not writing this to complain, at least, that is not my primary motivation. I am mostly writing this so that I can see it written out so I can make it better. If I can figure out how to make money less of an issue in the coming year, maybe I can move on to bigger and better things.
I know that there are parts of the problem that are out of my control. It's about taking what IS in my control and fixing it for the better. There is no better time than a new page on the calendar to start.
This is what I want to talk about today; the inconvenience of being in a less than ideal money situation.
My family and I live paycheck to paycheck. We put away a few dollars every week for a rainy day, but our little savings would not do much to save us from financial ruin.
It's something, enough to spring for a part for the ever-failing dryer, or to pay an unexpected expense; provided it was a relatively small one. It won't cover my husband missing a few days of work if he caught the flu, though. My husband is in a union and his salary is very good, but I would love to talk to the geniuses who decided not to negotiate for sick or vacation pay or even holiday pay (hello? Christmas and New Year's?).
In an ideal world, we would figure out the cost of those days off (five major unpaid holidays, two weeks of vacation and another cushion of five days for illness) and we would come up with an amount in the neighborhood of $5000. Saving for that would mean putting aside $100 per week. Putting aside another twenty per week for unexpected costs puts our minimum ideal savings plan at $120 per week. Some weeks we have it, some weeks we don't, for reasons I illustrated earlier.
The problem with this is that often times on the lean weeks we need to borrow from the fat weeks to get through. What winds up happening is that we never really save anything. We usually get a decent tax refund and a shrewd financial planner would probably tell us to put that money aside. That would be great, if at some point we didn't need a new washer/dryer/exhaust system for the car/roof/windows... you get the picture.
The vicious cycle that we live in is that we can never hold onto a chunk of money for very long. It's not that we blow it on fancy clothes or purses or shoes or vacations (ha!), it's that it gets pissed away on stuff that has waited too long to ignore.
This is where the inconvenience part really comes into play. If we had more money, we might be able to look for sales on things, so that we can buy them for less instead of buying them RIGHT! NOW! for whatever cost, because it went bad three days ago and we can't live without it for much longer. It would mean replacing our roof before it starts leaking and the damage drives up the cost. It might mean never having to pay late fees. It also might mean that our credit would be better since we wouldn't be late paying bills. Our mortgage company couldn't charge us all the fees involved with paying late. An extra sixty here and thirty there, really adds up. If our credit was better, we could also negotiate a better rate, instead of the 6.75% we are paying now.
Even with all of this, I haven't even gotten to the worst part: the stress that comes from worry. If all I ever had to worry about was money, I guess I would be okay. I'm okay anyway and of course, there is more to my worry than the balance in my checking account. Having had my middle child go through open heart surgery twice in his young life, I can assure you that when it comes right down to it, when your loved ones are safe and healthy, money seems like a mere nuisance.
You could ask me why I don't work. I mean, I did work full time for about three years after my kids were in school full time. The reasons for my not working now are as simple as no one I want to work for wants to hire me and as complex as my availability. The bottom line is that I want to be home when my kids walk through the door from school. Working around that is challenging. You might scoff and grumble that it's my own fault. I am in a mess of my own making.
You would be right.
I take full responsibility for not earning an income. I also know that when I take my kids to the movies or bowling or out for a cheap bite, I probably can't afford it. I do it anyway. When you don't have any family around, weekends present a challenge. Movies fill the time that a big family dinner would in my husband's or my past. Times change. It's the same reason I don't let the cable lapse.
Which brings me to the reason for this post.
Here I am, with my kids on winter break and they shut off the cable and WiFi.
I have a choice: Put what little cash I have left in the bank so that I can pay the bill and have it turned back on, or have a tiny bit of money and wait it out until Friday, when DH gets paid.
Since I have enough food and crock pot recipes to get us through the week, I chose to turn the cable (and phone and WiFi) back on. The prospect of being without, with single digit temps outside, for the last week of Christmas vacation was bleak, to say the least. This way, at least we can use our computer, watch some movies and if friends call to invite us somewhere, they will get through, and not receive a vague message about our phone not "accepting calls" (code for: These deadbeats haven't paid us!).
I know that I am one of the lucky ones. I am not writing this to complain, at least, that is not my primary motivation. I am mostly writing this so that I can see it written out so I can make it better. If I can figure out how to make money less of an issue in the coming year, maybe I can move on to bigger and better things.
I know that there are parts of the problem that are out of my control. It's about taking what IS in my control and fixing it for the better. There is no better time than a new page on the calendar to start.
Saturday, December 14, 2013
Negative
Recently, a friend of mine made an offhand comment about some of the negative things that I had posted on Facebook. I was a bit taken aback, mostly because over the last several (probably six or so) months, I have been really striving to only post positive things. The only exception to this rule is that if I post something ugly, or horrible or sad, I won't just post it with a sad face :( ; it will be something that I am actively working on changing.
For example, when I post about the plight of Russian orphans with Down syndrome, it's not to boo hoo about it (though, it does make me cry), it's to call attention to something that I am actively working on changing. Change takes time. Change takes outreach and noise. Change takes reaching out to people who speak different languages. Change means shining a light on perceived "norms" and asking questions and challenging individuals to look at things differently.
Facebook has it's issues, and being a huge time waster is one of the biggest; so in between posting memes of funny cats and hilarious "Fifty Shades of Grey" reviews, I want to spend some time doing something good, even if it doesn't appeal to everyone.
I mean, I get it. The world is effed up. There is a ton of stuff to bring us down; crazy world leaders, environmental degradation, extinction of beautiful animals, children in danger...the list is endless. If you let yourself get sucked into all the horror, it's hard to feel positive about anything. I mean, why bother? It's so easy to be consumed by it all and to feel like whatever good you can do will be swallowed up by the rest of the crap. Maybe it's best to just focus on the good things and ignore the rest.
Except, I can't.
I mean sure, I love cute pictures of babies (here) and animals (here). I love videos that help restore my faith in humanity (like this) and (this) and (this). I KNOW that there are more good people than bad and I KNOW that there are so many individuals hard at work, changing things for the better, in small ways and large.
But, the bad stuff is there and it needs facing to keep it in check.
Every day, every minute, I have a choice. I can ignore the bad, stick my fingers in my ears and say "la la la, I can't hear you" and continue playing Scrabble, or I can take a deep breath, see what issues feel pressing at the moment and dive in. It's constant battle between the two. Sometimes, the issues are so absolutely soul crushing that I need to walk away for an hour or a day or a week before picking up the thread again.
Sometimes, I am so struck by the hatred (this guy), that I feel paralyzed and it takes me a few days to formulate a plan of defense. I was ready to begin writing about the Michael Laws' of the world, when my friend posted this.
My first reaction was "god damn it. I can't deal with every slight, every single infraction, every joke made at the expense of kids like mine" and I played some Scrabble and scrolled and tried to formulate the blog post that was percolating along with the coffee and watched the snow fall fast outside my window.
My second reaction was "god damn it! I have to email the guy!" and I did. This is what I wrote:
For example, when I post about the plight of Russian orphans with Down syndrome, it's not to boo hoo about it (though, it does make me cry), it's to call attention to something that I am actively working on changing. Change takes time. Change takes outreach and noise. Change takes reaching out to people who speak different languages. Change means shining a light on perceived "norms" and asking questions and challenging individuals to look at things differently.
Facebook has it's issues, and being a huge time waster is one of the biggest; so in between posting memes of funny cats and hilarious "Fifty Shades of Grey" reviews, I want to spend some time doing something good, even if it doesn't appeal to everyone.
I mean, I get it. The world is effed up. There is a ton of stuff to bring us down; crazy world leaders, environmental degradation, extinction of beautiful animals, children in danger...the list is endless. If you let yourself get sucked into all the horror, it's hard to feel positive about anything. I mean, why bother? It's so easy to be consumed by it all and to feel like whatever good you can do will be swallowed up by the rest of the crap. Maybe it's best to just focus on the good things and ignore the rest.
Except, I can't.
I mean sure, I love cute pictures of babies (here) and animals (here). I love videos that help restore my faith in humanity (like this) and (this) and (this). I KNOW that there are more good people than bad and I KNOW that there are so many individuals hard at work, changing things for the better, in small ways and large.
But, the bad stuff is there and it needs facing to keep it in check.
Every day, every minute, I have a choice. I can ignore the bad, stick my fingers in my ears and say "la la la, I can't hear you" and continue playing Scrabble, or I can take a deep breath, see what issues feel pressing at the moment and dive in. It's constant battle between the two. Sometimes, the issues are so absolutely soul crushing that I need to walk away for an hour or a day or a week before picking up the thread again.
Sometimes, I am so struck by the hatred (this guy), that I feel paralyzed and it takes me a few days to formulate a plan of defense. I was ready to begin writing about the Michael Laws' of the world, when my friend posted this.
My first reaction was "god damn it. I can't deal with every slight, every single infraction, every joke made at the expense of kids like mine" and I played some Scrabble and scrolled and tried to formulate the blog post that was percolating along with the coffee and watched the snow fall fast outside my window.
My second reaction was "god damn it! I have to email the guy!" and I did. This is what I wrote:
Steve,
I get that the onion is satirical and my sarcasm muscle is usually sore from overuse. But, kids should be off limits.
Babies with Down syndrome are still, in 2013, routinely sent to filthy orphanages to rot in Russia. Children with Down syndrome in this country still have to fight to be included in school, in sports and in a society that too often does not want to "deal" with them.
My kid and children like him are not broken gifts. They are cherished members of their families and their communities because I and many parents like me have fought for years against prejudice.
Please don't make this job harder.
It took me all of five minutes and it felt good hitting "send". I supported the friend who posted it first and supported my kid in NOT ignoring it.
I'm not saying that I will jump on every bandwagon. There are only so many hours in the day that I can tweet celebrities who think calling people "retards" is still honky dory. There are only so many items that I can focus my attention on before I become pulled in too many directions.
The only things that keep my going are the fact that I am trying, in spite of the overwhelming-ness of it all, to make the world a more welcoming place for my children and that I am not alone in my quest.
Alone, I would hardly make a ripple in the vast ocean of insulting, unfunny and downright dangerous debris that I wade through. Together, we make waves. From the tiniest splash made the first time a parent kept their kid home instead of placing them in an institution, to the parent whose kids are going to college and driving and getting married, we are making our presence known.
You feel that wave? That's us pushing back.
Thursday, November 21, 2013
Escape
In March 2004, I found a flier at my gym advertising marathon training. Somewhere in the back of my mind, I had written "run a marathon" on my sub-conscious "before I die" list.
I think it was there because it seemed really, really hard; almost impossible. If I can do THAT, I reasoned, I could do just about anything. It wasn't that I had never run before; I had. When I was seventeen and going through my first, painful breakup, I ran as means to deal with my feelings. I ran a lot. I ran in the dark and came home so exhausted that my brain didn't have room for making me feel terrible. I slept, ran, went to school...repeat, for months. I lost about twenty pounds that I really didn't need to lose at the time. Lots of running and eating one meal a day will do that to you.
That spring, I came out of my funk, wiser, more driven and with a hard body to boot. How I envy that girl. 17 years later, plus three kids, running was not quite as easy as it had been in those days. My youngest was not quite four and my oldest was seven and a half. I was coming out of the constantly-sleep-deprived phase of parenting and smack in the middle of school-homework-IEP hell. I was starting to feel like maybe I needed to get a job; but really, I wanted to get a life beyond being "Mommy".
My husband, who has always been my loudest cheerleader, read the flier I brought home and said "do it!". No whining about giving up the next six months of Saturday mornings to take care of the kids while I ran (like I would have done if the shoe was on the other foot), no complaining about not having any free time of his own, he gave the thumbs up with no hesitation.
He wins husband of the decade for that.
My training was taking place a thirty minute drive away from home. We would run at 7 am every Saturday until the weather got warmer, then we would run at 6. 6 am runs meant going to bed early on Friday and getting up at 4:30 on Saturday. It is a testament to how desperate I was, that I was willing to get out of bed in the middle of the night to do it.
As the runs got longer and longer on the weekend, I realized that marathon training was the perfect metaphor for being frustrated with parenting, with things that were out of my control, with life in general: I wanted to run far away. Since I couldn't run away from the crap in my life without losing the wonderful parts (my husband and kids), running for hours, thirty minutes from home became my salvation.
I did wind up completing the Chicago marathon (read about it here), along with a 28 mile warm up run a month before. I have honestly never felt prouder of an accomplishment than I do of that. Yeah, I traveled alone around Europe on very little money and I moved far away from my hometown at a young age; but those accomplishments were achieved before I had any real fear. The world of being a parent and the world of being a single, young adult looks very different and there is a good bit of fear involved. As much as I think that that teenager could learn from this 43 year old; I think this 43 year old could learn a lot from that fearless teen.
I don't want to be shaken out of stagnation by a health emergency or any more death. Too often it is a cataclysmic life event that makes us (me) think about what really matters. Why? Why can't I learn from my own glorious triumphs and bitter failures? Why do I not seek out my own greatness because of the fear of failure? Why am I so afraid of being poor that I can not figure out how to have money? Why is it easier to stay still, rather than move in a positive direction?
I think I have just answered my own question. It's not. It's not easier to stagnate. It's awful and soul crushing. It makes the fear bigger.
Who am I? Am I the middling house wife whose biggest accomplishment on any given day is doing all the laundry and dishes? Or, am I Adventurous Amy?
I think it was there because it seemed really, really hard; almost impossible. If I can do THAT, I reasoned, I could do just about anything. It wasn't that I had never run before; I had. When I was seventeen and going through my first, painful breakup, I ran as means to deal with my feelings. I ran a lot. I ran in the dark and came home so exhausted that my brain didn't have room for making me feel terrible. I slept, ran, went to school...repeat, for months. I lost about twenty pounds that I really didn't need to lose at the time. Lots of running and eating one meal a day will do that to you.
That spring, I came out of my funk, wiser, more driven and with a hard body to boot. How I envy that girl. 17 years later, plus three kids, running was not quite as easy as it had been in those days. My youngest was not quite four and my oldest was seven and a half. I was coming out of the constantly-sleep-deprived phase of parenting and smack in the middle of school-homework-IEP hell. I was starting to feel like maybe I needed to get a job; but really, I wanted to get a life beyond being "Mommy".
My husband, who has always been my loudest cheerleader, read the flier I brought home and said "do it!". No whining about giving up the next six months of Saturday mornings to take care of the kids while I ran (like I would have done if the shoe was on the other foot), no complaining about not having any free time of his own, he gave the thumbs up with no hesitation.
He wins husband of the decade for that.
My training was taking place a thirty minute drive away from home. We would run at 7 am every Saturday until the weather got warmer, then we would run at 6. 6 am runs meant going to bed early on Friday and getting up at 4:30 on Saturday. It is a testament to how desperate I was, that I was willing to get out of bed in the middle of the night to do it.
As the runs got longer and longer on the weekend, I realized that marathon training was the perfect metaphor for being frustrated with parenting, with things that were out of my control, with life in general: I wanted to run far away. Since I couldn't run away from the crap in my life without losing the wonderful parts (my husband and kids), running for hours, thirty minutes from home became my salvation.
I did wind up completing the Chicago marathon (read about it here), along with a 28 mile warm up run a month before. I have honestly never felt prouder of an accomplishment than I do of that. Yeah, I traveled alone around Europe on very little money and I moved far away from my hometown at a young age; but those accomplishments were achieved before I had any real fear. The world of being a parent and the world of being a single, young adult looks very different and there is a good bit of fear involved. As much as I think that that teenager could learn from this 43 year old; I think this 43 year old could learn a lot from that fearless teen.
I don't want to be shaken out of stagnation by a health emergency or any more death. Too often it is a cataclysmic life event that makes us (me) think about what really matters. Why? Why can't I learn from my own glorious triumphs and bitter failures? Why do I not seek out my own greatness because of the fear of failure? Why am I so afraid of being poor that I can not figure out how to have money? Why is it easier to stay still, rather than move in a positive direction?
I think I have just answered my own question. It's not. It's not easier to stagnate. It's awful and soul crushing. It makes the fear bigger.
Who am I? Am I the middling house wife whose biggest accomplishment on any given day is doing all the laundry and dishes? Or, am I Adventurous Amy?
Friday, November 8, 2013
Why the R-Word Sucks with guest blogger, Nidhip Mehta
This post is a culmination of spending years trying to convey my feelings. You can read this year's r-word campaign posts here and here. I have written at least 427 other posts on the subject over the last 14+ years, but I will spare you those. This latest post came from hearing about Kat Von D and her lipstick line at Sephora. Long story short, they collectively decided that naming a lipstick "Celebutard" was a hilarious idea.
Celebutard - from the Urban Dictionary:
A famous stupid person. Typically refers to the current crop of vapid celebrities.
Similar, but not exactly the same as Celebutante:
A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."
It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous. But, whatever. You can read more about that here.
Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade. It was a victory, but a hollow one. I am glad that as a community we were able to mobilize and have our voices heard. I am troubled by the fact that it's a battle we have to keep waging.
Here's another great post from a friend, here.
In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate. He posed a few, well thought out questions asking why the r-word is so offensive. He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side. Again, I was getting nowhere and with someone who liked me and actually cared about my feelings! How was I ever going to get the point across to anyone else?
I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere. To top it all off, I was going to quite possibly lose an old friend in the process. I did a little soul searching and then I wrote a note to Nidhip that said:
Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.
Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy. You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.
This happens today.
Yes, kids with i/d learn differently than other kids. And typical kids learn differently from each other. With creativity, love and support, everyone wins and everyone learns more. There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello? American south in the 1960's?), or ability (today, all over the world).
My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society. Both words say "you are different, you are not worthy, you are not accepted". If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities. The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized. Like African American, women and gay people before them, people with disabilities are calling for equal treatment. Eliminating slurs against them must be a part of that movement.
Celebutard - from the Urban Dictionary:
A famous stupid person. Typically refers to the current crop of vapid celebrities.
Similar, but not exactly the same as Celebutante:
A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."
It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous. But, whatever. You can read more about that here.
Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade. It was a victory, but a hollow one. I am glad that as a community we were able to mobilize and have our voices heard. I am troubled by the fact that it's a battle we have to keep waging.
Here's another great post from a friend, here.
In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate. He posed a few, well thought out questions asking why the r-word is so offensive. He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side. Again, I was getting nowhere and with someone who liked me and actually cared about my feelings! How was I ever going to get the point across to anyone else?
I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere. To top it all off, I was going to quite possibly lose an old friend in the process. I did a little soul searching and then I wrote a note to Nidhip that said:
Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.
I'd really like to write some more about it. I know I won't convince everyone, or maybe even you, but I would like to try and engage in healthy debate. As you can tell, debate is not easy for me. Arguing is fine if I don't truly care about the answer, but when I do...oh boy. I am all emotion. I know logically that a word should not hold so much weight, but emotionally, it does, it really does.
I'd like to try and work through this some more. Would you be okay with me putting your questions in a blog post and answering them? Or would you want to write something different? Or go back and forth? I think it could be a really good thing. If you don't want to add anymore, I understand, but if you would allow me to use your questions, I'd be grateful. Think about it.
And being the good guy that he is, he said this:
Hey, first of all, I just want to say I'm sorry again. I know with hindsight, you're thanking me, but I really should've gauged the situation better before opening up something which clearly has an emotional resonance. You're right, I tried to intellectualize something which, at its heart, is emotional. But I honestly think that it helps to do that when you're trying to create awareness or change minds. Which is why I was getting at you for simply saying that it shouldn't happen because it makes people angry. As you know, progressive thinkers like us do a lot of things that make other people angry, but that shouldn't stop us from doing it. Like wanting that anybody can marry anybody else, regardless of what the Bible says. That sure makes a ton of people angry, but I'm gonna go on wanting it.
Anyway, like I said last night, my questions came from a point of inquiry, not argument. I genuinely wanted to hear your point of view and well... I got it, I guess.
Sure, I'd be okay with my questions in your blog... after all, that was my point in bringing it up... to initiate discussion. But I really don't want to get anyone upset, let alone you. You are a great person and I admire you a great deal, but I want to respect your limits and tolerance as well.
And thanks for reaching out to me this morning. I really felt bad about upsetting you and regretted bringing it up. I admire that you're willing to put that aside and engage me again. That says a lot about you.
So, here is Nidhip's query. I will break it into parts in order to address different pieces of the issue; but first, here it is in it's entirety:
Ok, so my question is essentially this:
I sympathize with the feeling of being offended by a word or phrase. Ever since I learned that the R-word is offensive to some (particularly to those who have family members that are intellectually disabled), I stopped using it. I don't even use it when those people are not around, and I try to remind others when they use it. Also, I understand the negative connotation when the word is used to describe someone with Downs Syndrome or autism spectrum. It's really not appropriate, and it's not such a big thing to simply use another word.
What I don't completely understand is when the word is used outside of that context; when the intent has been changed from the original meaning. This happens in language. It happened with the words "moron" or "idiot" or "stupid", which were all used at one point as clinical descriptions of people with intellectual disabilities. These days, no one bats an eye or hesitates to use these words. Heck, even people who have family or friends with intellectual disabilities use these words, which a century ago had the same meaning and connotation as the R-word.
Is it not possible to divorce the word from its meaning? Can the perception of those who use the word be more nuanced? Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
I'm not exactly saying that people should simply ignore it when people use the R-word, but that perhaps they should react in accordance with the intent in which the word was used, and not simply react from pure emotion.
I also think that in order to make people better understand why they should not use the R-word, the reason given should be more than "it makes me angry" or "you'll never understand unless it happens to you". I think these don't help the cause, primarily because unless the person involved is a friend or relative, no one really cares whether something they say makes some anonymous person angry. I believe in many things that make people angry, like feeling that gays should be able to marry or that all people should have access to affordable (or free) health care. The fact that this makes some people angry does not bother me in the least; it's a fundamental disagreement. So, I guess that in order to better understand the issue, I'd prefer to see a more intellectual rationalization for not using the word, as opposed to an emotional one.
Of course, what I prefer doesn't always matter. There may not be, after all, an intellectual rationalization. Maybe it should suffice that enough people (whatever that critical mass is) find it offensive. But the intellectual part of me wants to know where to draw the line, because it seems very fuzzy and, to be honest, hypocritical. Especially when I see the words "moron" and "stupid" being used all the time. I don't know, perhaps it simply has to do with the amount time that passes for a word to fully change its meaning. It's difficult to parse, unfortunately.
Again, I want to reiterate that if the word offends people who I like and admire and want to stay friends with, that's good enough for me. But it may not be good enough for everyone.
My response:
I think there are essentially three parts to this:
- Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
- Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
- Is there a way to intellectually rationalize why it is wrong?
Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
First, some people are bothered by the words idiot and moron and imbecile because of their historical significance to people with intellectual disabilities. For myself, I feel that those words have evolved to a point that when someone says any one of them, a picture of a kid like mine does not pop into their heads. I haven't seen any offensive memes using a picture of a kid with Down syndrome and the word "idiot"; but I have seen plenty with the word "retard". That makes them different, as far as I'm concerned. Maybe it's the role of social media that makes this word different (for me) from the rest. It certainly plays a part.
Secondly, I don't wish to drag up every old word used in reference to people with i/d. I feel they have run their course, history has moved on and so should we. The difference with "retard" is that it IS in common use these days and because of that, it keeps anyone who could be called "retarded" by a doctor (even though it is going away in the medical field) apart from everyone else. It makes them the "other", not like us, not worth worrying about offending, maybe, not even quite human.
Thirdly, though I could wait for this word to become innocuous, I don't want to. I want to stand up now and say that it matters to me and it matters to my family and many, many families like mine. Why should my kid, who has been called a retard more times than I can count, have to hear that word in any form (including added "tard" to the end of other words)?
Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity? I see it as a matter of simple humanity. Most people don't want to hurt people's feelings, even people they don't know. I think educating those who truly don't realize that their words are hurtful is important. It's not about getting angry (Nidhip: you seem to only see my anger and not my hurt. I'm wondering why?), though I do get angry about it. When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment. I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic. Some (many) still use the word, but at least I have planted the seed. If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.
The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt. People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with. Frankly, I think much of their anger is misplaced. But hurt? I don't want to hurt people or be hurt. Knowing that the r-word can be hurtful should be enough.
While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts. It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis. Would you want any part of what makes you YOU be a slur?
Is there a way to intellectually rationalize why it is wrong?
I've said that to disability advocates, this is the N-word. Do we use the N-word in any form? No. Because most reasonable people get that any form of it is degrading and wrong. They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly. But, "you're such a retard" is fine. Why? What is the difference?
Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity? I see it as a matter of simple humanity. Most people don't want to hurt people's feelings, even people they don't know. I think educating those who truly don't realize that their words are hurtful is important. It's not about getting angry (Nidhip: you seem to only see my anger and not my hurt. I'm wondering why?), though I do get angry about it. When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment. I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic. Some (many) still use the word, but at least I have planted the seed. If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.
The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt. People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with. Frankly, I think much of their anger is misplaced. But hurt? I don't want to hurt people or be hurt. Knowing that the r-word can be hurtful should be enough.
While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts. It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis. Would you want any part of what makes you YOU be a slur?
Is there a way to intellectually rationalize why it is wrong?
I've said that to disability advocates, this is the N-word. Do we use the N-word in any form? No. Because most reasonable people get that any form of it is degrading and wrong. They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly. But, "you're such a retard" is fine. Why? What is the difference?
The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy. You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.
This happens today.
Yes, kids with i/d learn differently than other kids. And typical kids learn differently from each other. With creativity, love and support, everyone wins and everyone learns more. There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello? American south in the 1960's?), or ability (today, all over the world).
My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society. Both words say "you are different, you are not worthy, you are not accepted". If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities. The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized. Like African American, women and gay people before them, people with disabilities are calling for equal treatment. Eliminating slurs against them must be a part of that movement.
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