"On the day that Cliff was born, on the day that Cliff was born, on the day that Clifford was born the angels sang and they blew on their horns and they danced, they danced. They smiled and raised up their hands on the day, on the day that Clifford was born." -- Red Grammer, "Hello World"
It's early on this February morning, and still a little dark, about the same time I awoke twenty-six years ago in labor with my first child. I am doing what I always do on this day each year, remembering the events of the day that changed my life in such profound ways that I am still discovering how. I've told this story often but each time brings a welcome recall, albeit bittersweet, that I hope I will never forget.
Early on that February morning, while I let Ken sleep, I got up and decided to take a shower with the foolish notion that I'd look prettier for the work ahead. I had everything set: snacks for my husband in case the labor went on and on, my bag packed and sitting by the door, the camera, the baby announcement cards I planned to write out after my baby arrived.
But you know what they say about God and the plans we make. Only I don't think God was laughing that day. I think, in fact I know, he had his arms around me saying, "Don't worry. I know what I'm doing. I am with you."
After just six hours, Clifford Anthony Taylor arrived. He was named Clifford after the grandfather he would never meet. Anthony was for my own dad. He entered the world just like any other baby--squalling loudly, a beautiful sound we captured on tape and still listen to from time to time with tears in our eyes. That tape captured not only the brand new cries of a baby boy, but the voices of my husband, the doctor, the nurses. In fact, I distinctly remember the nurse who abruptly left the room soon after Cliff was born. She had been my birthing instructor and I was so glad she could be there. On the tape I can hear her saying, "What a beautiful baby, " and then the glaring absence of that voice. I found out later that she was newly pregnant with her own baby and became upset when she looked at Cliff and saw something a little off-kilter. She knew.
When Ken left the room, I recall asking where he went. "We think there may be something wrong with the baby so your husband is speaking to the pediatrician."
Something wrong? Is that what he thought of my baby? He knew the truth before I did and he used the word "wrong"? How awful for a doctor to use such a word. Wrong means the baby is sick with a disease. Wrong means the baby might die. Wrong means something horrible and tragic. My son's birth meant none of those things.
When Ken came into the recovery room he gave me the news. He held my hand and said, "The doctor thinks the baby has Down syndrome, but they have to do a blood test to be sure." I stared at him as relief flooded my face. The doctor had said "wrong". But my baby was healthy. Down syndrome? The meaning of those words had not yet entered my brain. At that moment I cared only that he was not ill or in danger of dying.
Later in my room, as Ken and I discussed what this all meant, I realized that I had been waiting for over two hours to hold my son. Looking back, I honestly believe the nurses were told to wait until I asked for him, just in case it turned out I didn't want him.
Can you imagine?
I'd like to tell you every thought that went through my head when he was finally put into my arms, but there was only one. I loved this baby! As I gazed at his little face, he suddenly opened his eyes and at that moment I was sure of two things: I didn't need a blood test to know what was right in front of me. And he was mine to keep forever.
We lay him gently on the bed and carefully, slowly unwrapped him. We marveled at his perfection: the ten fingers and ten toes, the soft brown/blonde hair on his head, the full lips, the roundness of his belly. I thought I knew what love was, but this...this was beyond my imagining.
I hadn't yet cried. That would come...later.
...to be continued...
Monday, February 28, 2011
Friday, February 25, 2011
New Normal
"Where we love is home--home that our feet may leave, but not our hearts." ~Oliver Wendell Holmes Sr.
Used to be I would lie in bed awake, waiting for the sound of the garage door opening. I liked the sound. It brought me peace. It meant that Max was home safe and that I could sleep without startling awake, wondering where he was. Even without the sound of the door opening and closing, I could tell when he was here. He has this way of bounding the stairs, doesn't matter up or down, and taking two steps at a time. No one else in this house comes in quite like he does. His arrival is as unique as a thumbprint.
From my vantage point, lying in bed with my door ajar, I could even tell it's his hand putting on the bathroom light in the hallway, just the way he does it, with his full hand flat and covering the light switch. He flips the switch between the second and third fingers on his right hand. Is it weird that I know that? It's funny that I could know these small details considering how little I know about what's going on in his head. But kids aren't always supposed to tell you every single thing they're thinking. I discovered a long time ago that our kids have a secret life, apart from what we've known.
He's the least talkative of my three children. I'd throw out the term "typical guy" here, but I don't think there really is such a thing. I just know that when he does talk about what he's thinking, I am like a soldier! I snap to attention and listen carefully because he doesn't like to say things twice and besides, he lets out his news and information so infrequently, I'm practically starved for his conversation.
He's away at school now and each one of us in this house feels his absence in his or her own way. I miss the way he leaves his fingerprints all over the microwave when he cooks up his Jimmy Dean breakfast sandwiches. I miss him asking ,"Mom, have you seen my work shirt? my wallet? my phone? Can you help me with my earring?" I miss the way he leaves the house and comes back in three times because he's forgotten his wallet, his phone, his iPod. I miss the way he hugs his big brother and jokes around with his sister. I miss the way he'll ask me for permission for something instead of going to his father because I'm the permissive one.
I've been wondering if I will ever get used to this. How long will it take? Does one ever get used to children leaving? It's the future of every parent after all. After Max, it will be Olivia. Then someday, Cliff, who will need to find his own life before his parents leave this world.
I have to tell you, I miss them already.
Used to be I would lie in bed awake, waiting for the sound of the garage door opening. I liked the sound. It brought me peace. It meant that Max was home safe and that I could sleep without startling awake, wondering where he was. Even without the sound of the door opening and closing, I could tell when he was here. He has this way of bounding the stairs, doesn't matter up or down, and taking two steps at a time. No one else in this house comes in quite like he does. His arrival is as unique as a thumbprint.
From my vantage point, lying in bed with my door ajar, I could even tell it's his hand putting on the bathroom light in the hallway, just the way he does it, with his full hand flat and covering the light switch. He flips the switch between the second and third fingers on his right hand. Is it weird that I know that? It's funny that I could know these small details considering how little I know about what's going on in his head. But kids aren't always supposed to tell you every single thing they're thinking. I discovered a long time ago that our kids have a secret life, apart from what we've known.
He's the least talkative of my three children. I'd throw out the term "typical guy" here, but I don't think there really is such a thing. I just know that when he does talk about what he's thinking, I am like a soldier! I snap to attention and listen carefully because he doesn't like to say things twice and besides, he lets out his news and information so infrequently, I'm practically starved for his conversation.
He's away at school now and each one of us in this house feels his absence in his or her own way. I miss the way he leaves his fingerprints all over the microwave when he cooks up his Jimmy Dean breakfast sandwiches. I miss him asking ,"Mom, have you seen my work shirt? my wallet? my phone? Can you help me with my earring?" I miss the way he leaves the house and comes back in three times because he's forgotten his wallet, his phone, his iPod. I miss the way he hugs his big brother and jokes around with his sister. I miss the way he'll ask me for permission for something instead of going to his father because I'm the permissive one.
I've been wondering if I will ever get used to this. How long will it take? Does one ever get used to children leaving? It's the future of every parent after all. After Max, it will be Olivia. Then someday, Cliff, who will need to find his own life before his parents leave this world.
I have to tell you, I miss them already.
Monday, January 17, 2011
Tired
"If a perfect parent is not what a child needs,what is? A mother who is, in the words of child psychologist D.W. Winnicott, 'good enough.'" --Brie P. Quimby, from Changed by a Child, Barbara Gill
Bath night is every other night. I wash his hair, brush his teeth, dry him off. In the morning I shave and dress him, make him breakfast, clean up after. He gets a pill in the morning one half hour before breakfast, another exactly two hours after his last meal but one hour before the next one. Mondays I take him to dance class, Wednesday is music therapy. I watch his diet, clip his nails, give him his medicine, use cream on his hands and acne medicine on his face. He likes to shop so I take him along to the supermarket, Target, Wal-Mart, the mall. I attend his ISP meetings, call his program to check in, ask how he's doing. I write in the communication book. When he has a cold, I blow his nose and bring him to the doctor. I call to cancel the van and call him in sick to work. I make his appointments. I comfort and cajole and reward when it's time for a shot or blood test. I find respite workers, doctors, information, educational toys, music that he'll like. I try to make his day easy and his mood happy, or at least, content.
These things I do for my 25-year-old son. I do it with a grateful feeling in my heart because a mother's love for her children is boundless, and I do not know another way to be.
But if I'm going to be truthful, sometimes I get tired. Sometimes, just every so often, I don't want to do any of it. The feeling never lasts for more than a day, but sometimes it's a few hours. I feel so guilty when I think about wanting to feel free, for just a little while. What kind of mother am I?
I am afraid to say I feel this way, ashamed to admit it. Hell, my fingers have gone to the delete button three times since I put these words to print. I prefer to present a positive face to the world at all times.
Am I normal? Is it normal to feel like I must do these things while at the same time feel like I want someone else to do them? This paradoxical way of thinking is uncomfortable for me. I hate it.
When I need inspiration, I flip through a book I've owned for many years. The author has a gift, not just for words, but for getting to the very heart of feelings that mothers like me experience. Here is what I found today:
Barbara Gill wrote, of raising children with a disability, "We are knitting on at least a dozen needles. It is complicated and it is hard. But we do it. We drop a lot of stitches, but we knit our lives. And what interesting, varicolored, unique garments they turn out to be."
Bath night is every other night. I wash his hair, brush his teeth, dry him off. In the morning I shave and dress him, make him breakfast, clean up after. He gets a pill in the morning one half hour before breakfast, another exactly two hours after his last meal but one hour before the next one. Mondays I take him to dance class, Wednesday is music therapy. I watch his diet, clip his nails, give him his medicine, use cream on his hands and acne medicine on his face. He likes to shop so I take him along to the supermarket, Target, Wal-Mart, the mall. I attend his ISP meetings, call his program to check in, ask how he's doing. I write in the communication book. When he has a cold, I blow his nose and bring him to the doctor. I call to cancel the van and call him in sick to work. I make his appointments. I comfort and cajole and reward when it's time for a shot or blood test. I find respite workers, doctors, information, educational toys, music that he'll like. I try to make his day easy and his mood happy, or at least, content.
These things I do for my 25-year-old son. I do it with a grateful feeling in my heart because a mother's love for her children is boundless, and I do not know another way to be.
But if I'm going to be truthful, sometimes I get tired. Sometimes, just every so often, I don't want to do any of it. The feeling never lasts for more than a day, but sometimes it's a few hours. I feel so guilty when I think about wanting to feel free, for just a little while. What kind of mother am I?
I am afraid to say I feel this way, ashamed to admit it. Hell, my fingers have gone to the delete button three times since I put these words to print. I prefer to present a positive face to the world at all times.
Am I normal? Is it normal to feel like I must do these things while at the same time feel like I want someone else to do them? This paradoxical way of thinking is uncomfortable for me. I hate it.
When I need inspiration, I flip through a book I've owned for many years. The author has a gift, not just for words, but for getting to the very heart of feelings that mothers like me experience. Here is what I found today:
Barbara Gill wrote, of raising children with a disability, "We are knitting on at least a dozen needles. It is complicated and it is hard. But we do it. We drop a lot of stitches, but we knit our lives. And what interesting, varicolored, unique garments they turn out to be."
Wednesday, January 12, 2011
Acceptance
"I like you just the way you are." Fred Rogers, Mister Rogers' Neighborhood
When people first meet my son, Cliff, they make a lot of assumptions about him. They expect that he's a "typical" person with Down syndrome. They assume he can talk and have a conversation; they ask him if he likes the Patriots and the Red Sox (or Yankees depending on the state we are in) as if it's the most natural thing in the world to know who they are. (He doesn't) They attempt to connect with him and I think that's so kind. Instead, a lot of the time I end up answering their questions for him, explaining a lot, smiling my head off, excusing his inability to respond to certain questions (and re-posing strangers' questions for him in a way he can understand), and trying to get through an initial meeting without making the other person feel awkward.
But my son is not what you might call typical of people with Down syndrome. He has very limited speech for one thing. He is unable to read or write. He's dependent on other people for most of his wants and needs. He's not the guy who can tell a joke (though he can be a total goofball), independently perform all his tasks at his job, or play a game without someone else doing most of the work. He's not the guy walking around town by himself or getting on a bus alone. That's just how he rolls. I, however, think he's perfect. Naturally.
I can recall the countless meetings I've had over the years while Cliff was a student. All I'd hear was "Cliff is unable to... Cliff can't...Cliff won't...Cliff doesn't know how..." I'd sit there listening to what my son did not have the ability to do, as if I didn't already know. When these meetings were over, I'd feel wrung out like a dishrag, exhausted, depressed, angry. A friend gave me some advice. She said, "Don't let a meeting go by where you don't insist that the teachers, the therapists, or the job coach tells you something positive. What CAN Cliff do? Focus on his strengths, not his weaknesses, and build on those." I never forgot that advice, and from then on, I asked them specifically to tell me something Cliff was able to do, and I think it went a long way towards changing their attitudes about him and the way they chose to teach him.
In the spirit of thinking positively, I will tell you that Cliff can make people smile. He can make you feel like a million bucks with one of his hugs. He has created a family dynamic which focuses on love and understanding and compassion. He can teach you things about yourself that you never knew. He can surprise you with his joyful belly laugh. He can change how you think about people with developmental disabilities. When he is singing at the top of his lungs it will make you laugh, or annoy the hell out of you if you're trying to do homework, watch TV, listen to music, have a conversation. He wants you to be happy. As limited as his speech is, he can sing the words to all the songs I've taught him since he was a little boy. If he gets mad at you, he doesn't hold a grudge for very long. He can say "Fuck" at the absolute most appropriate times, something I cannot say about my husband, who uses the word too often for my taste. (A blog post for another day perhaps?)
The thing about Cliff is that you can't know who he is with one accidental meeting at Stop 'n Shop. You've got to give it some time. As I move through my days there will always be someone I run into around town, at the store or the post office or the bank. And more often than not, Cliff will be with me. He is my almost constant companion. On those days, I hope you know that behind my words of explanation and introduction, of excusing and re-posing, lies a sincere wish for you to give my son a chance, to see who he is as a person, not merely his diagnosis. I hope you know that even if he doesn't answer right away, or at all, he appreciates your humanity. He doesn't know the meaning of the word, but he most certainly feels it. And so do I.
When people first meet my son, Cliff, they make a lot of assumptions about him. They expect that he's a "typical" person with Down syndrome. They assume he can talk and have a conversation; they ask him if he likes the Patriots and the Red Sox (or Yankees depending on the state we are in) as if it's the most natural thing in the world to know who they are. (He doesn't) They attempt to connect with him and I think that's so kind. Instead, a lot of the time I end up answering their questions for him, explaining a lot, smiling my head off, excusing his inability to respond to certain questions (and re-posing strangers' questions for him in a way he can understand), and trying to get through an initial meeting without making the other person feel awkward.
But my son is not what you might call typical of people with Down syndrome. He has very limited speech for one thing. He is unable to read or write. He's dependent on other people for most of his wants and needs. He's not the guy who can tell a joke (though he can be a total goofball), independently perform all his tasks at his job, or play a game without someone else doing most of the work. He's not the guy walking around town by himself or getting on a bus alone. That's just how he rolls. I, however, think he's perfect. Naturally.
I can recall the countless meetings I've had over the years while Cliff was a student. All I'd hear was "Cliff is unable to... Cliff can't...Cliff won't...Cliff doesn't know how..." I'd sit there listening to what my son did not have the ability to do, as if I didn't already know. When these meetings were over, I'd feel wrung out like a dishrag, exhausted, depressed, angry. A friend gave me some advice. She said, "Don't let a meeting go by where you don't insist that the teachers, the therapists, or the job coach tells you something positive. What CAN Cliff do? Focus on his strengths, not his weaknesses, and build on those." I never forgot that advice, and from then on, I asked them specifically to tell me something Cliff was able to do, and I think it went a long way towards changing their attitudes about him and the way they chose to teach him.
In the spirit of thinking positively, I will tell you that Cliff can make people smile. He can make you feel like a million bucks with one of his hugs. He has created a family dynamic which focuses on love and understanding and compassion. He can teach you things about yourself that you never knew. He can surprise you with his joyful belly laugh. He can change how you think about people with developmental disabilities. When he is singing at the top of his lungs it will make you laugh, or annoy the hell out of you if you're trying to do homework, watch TV, listen to music, have a conversation. He wants you to be happy. As limited as his speech is, he can sing the words to all the songs I've taught him since he was a little boy. If he gets mad at you, he doesn't hold a grudge for very long. He can say "Fuck" at the absolute most appropriate times, something I cannot say about my husband, who uses the word too often for my taste. (A blog post for another day perhaps?)
The thing about Cliff is that you can't know who he is with one accidental meeting at Stop 'n Shop. You've got to give it some time. As I move through my days there will always be someone I run into around town, at the store or the post office or the bank. And more often than not, Cliff will be with me. He is my almost constant companion. On those days, I hope you know that behind my words of explanation and introduction, of excusing and re-posing, lies a sincere wish for you to give my son a chance, to see who he is as a person, not merely his diagnosis. I hope you know that even if he doesn't answer right away, or at all, he appreciates your humanity. He doesn't know the meaning of the word, but he most certainly feels it. And so do I.
Tuesday, December 21, 2010
Smoke
"When I really worry about something, I don't just fool around.I even have to go to the bathroom when I worry about something. Only I don't go. I'm too worried to go. I don't want to interrupt my worrying to go. ~Holden Caulfield, Chapter 6, The Catcher in the Rye.
When my nineteen-year-old son comes into the house, he brings the unwanted stink of cigarette smoke. I say to him, "Max, you smell awful." His eyes open wide in surprise. But his clothes, his jacket, every pore of his body is tainted with the smell of Marlboros. Does he remember what happened to the Marlboro Man? He's dead. From smoking Marlboros.
I don't pretend to be a paragon of parenthood, but I can safely say Max had all the requisite lessons and warnings about the dangers of smoking. Between home and health class he has all the information he needs. But I'm not fool enough to think he could escape the influence of friends and television and high school, and that's why I think he started in the first place. Damn outside influences.
I caught him once, smoking a cigarette during a college visit when he was in the search phase as a high school senior. He and his friend had gone ahead of my husband and me, and we found them skulking behind a building, drawing a long drag and blowing it out slowly in the manner of kids who imagine they look cool when they light up. I was shocked at this vision, and dismayed. My heart sank. Though it wasn't my fault, I still felt like a failure. What lack of parenting expertise caused my second child to feel compelled to put a cigarette in his mouth and damage his lungs, his teeth, his skin, indeed every cell in his body?
When Cliff was three years old, my husband and I began trying for a baby brother or sister for him. The year progressed and still no pregnancy. I was diagnosed with secondary infertility. The thought that I might not be able to conceive again was incomprehensible. I come from a family of eight children. I wanted a big family too. After two more years of specialists, tests, medication, a minor surgery followed by major abdominal surgery to correct the problem, I became pregnant. All that effort, pain, longing, and single-minded focus finally paid off. When Maxwell James Taylor was born, I was overjoyed. He was, and is, my precious boy.
Staring and staring at him in my hospital room, I reflected on all I had gone through to have him. I had had an emergency C-section and lost a lot of blood. I was white as a ghost. But I didn't care; my son was here! I think back to his cries, the pink, perfect lungs he used to let me know he needed something.
So forgive me if I feel pain at the way he's treating the body God gave him. I would do anything to get him to stop before it becomes so much of an addiction that it will be impossible to quit without immense struggle.
And how funny (ironic!) is it that he religiously works out at a gym? What does he think will happen to all those muscles he's cultivating if his lungs go? Perhaps like most teenagers, he believes himself to be indestructible.
My brother, Tony, at my request, talked to Max last year about not smoking. Tony is a lifelong smoker and he has the crummy heart valves and the decreased lung capacity to prove it. Tony started his family late in life and now, wants nothing more than to be here for his children. Fifty-seven years old and he can't get that particular monkey off his back. So, Max told him he had a plan: he would smoke for the duration of his college years and then quit when he graduated. Such innocence. Or should I say, such ignorance?
And what, really, can I do to make him stop? He is of age to make his own choices, even if those choices suck.
I don't know. To that end, I have added Max's smoking to my ever-lengthening list of worries. Will cigarettes be his undoing in the end? This is when I have to remember the Serenity Prayer. There is nothing else to do.
http://www.thevoiceforlove.com/serenity-prayer.html
When my nineteen-year-old son comes into the house, he brings the unwanted stink of cigarette smoke. I say to him, "Max, you smell awful." His eyes open wide in surprise. But his clothes, his jacket, every pore of his body is tainted with the smell of Marlboros. Does he remember what happened to the Marlboro Man? He's dead. From smoking Marlboros.
I don't pretend to be a paragon of parenthood, but I can safely say Max had all the requisite lessons and warnings about the dangers of smoking. Between home and health class he has all the information he needs. But I'm not fool enough to think he could escape the influence of friends and television and high school, and that's why I think he started in the first place. Damn outside influences.
I caught him once, smoking a cigarette during a college visit when he was in the search phase as a high school senior. He and his friend had gone ahead of my husband and me, and we found them skulking behind a building, drawing a long drag and blowing it out slowly in the manner of kids who imagine they look cool when they light up. I was shocked at this vision, and dismayed. My heart sank. Though it wasn't my fault, I still felt like a failure. What lack of parenting expertise caused my second child to feel compelled to put a cigarette in his mouth and damage his lungs, his teeth, his skin, indeed every cell in his body?
When Cliff was three years old, my husband and I began trying for a baby brother or sister for him. The year progressed and still no pregnancy. I was diagnosed with secondary infertility. The thought that I might not be able to conceive again was incomprehensible. I come from a family of eight children. I wanted a big family too. After two more years of specialists, tests, medication, a minor surgery followed by major abdominal surgery to correct the problem, I became pregnant. All that effort, pain, longing, and single-minded focus finally paid off. When Maxwell James Taylor was born, I was overjoyed. He was, and is, my precious boy.
Staring and staring at him in my hospital room, I reflected on all I had gone through to have him. I had had an emergency C-section and lost a lot of blood. I was white as a ghost. But I didn't care; my son was here! I think back to his cries, the pink, perfect lungs he used to let me know he needed something.
So forgive me if I feel pain at the way he's treating the body God gave him. I would do anything to get him to stop before it becomes so much of an addiction that it will be impossible to quit without immense struggle.
And how funny (ironic!) is it that he religiously works out at a gym? What does he think will happen to all those muscles he's cultivating if his lungs go? Perhaps like most teenagers, he believes himself to be indestructible.
My brother, Tony, at my request, talked to Max last year about not smoking. Tony is a lifelong smoker and he has the crummy heart valves and the decreased lung capacity to prove it. Tony started his family late in life and now, wants nothing more than to be here for his children. Fifty-seven years old and he can't get that particular monkey off his back. So, Max told him he had a plan: he would smoke for the duration of his college years and then quit when he graduated. Such innocence. Or should I say, such ignorance?
And what, really, can I do to make him stop? He is of age to make his own choices, even if those choices suck.
I don't know. To that end, I have added Max's smoking to my ever-lengthening list of worries. Will cigarettes be his undoing in the end? This is when I have to remember the Serenity Prayer. There is nothing else to do.
http://www.thevoiceforlove.com/serenity-prayer.html
Sunday, December 12, 2010
Mess
"Come in. Sit down. Relax. Converse. My house doesn't always look like this. Sometimes it's even worse." ~my mom's refrigerator magnet from 1971
I've just taken a good look around my house and have declared it a disaster area. I'm surprised the Governor of Massachusetts hasn't been called in to make it official. There are dust balls under the furniture, the windows are dirty, everyone's laundry is spilling over out of the hampers. The tidy piles I make of newspapers and catalogs and mail are not so much piles as they are misshapen blobs. While I wouldn't say my house is dirty in the same way that say, the Greyhound Bus station is dirty, I'm mortified when someone comes over, embarrassed at the boxes in the dining room (my new furniture hasn't arrived yet) and at the dog hair embedded in the carpeted stairs. None of the pictures went back up on the walls after they were painted TWO MONTHS AGO. The kitchen floor isn't looking too hot either.
At times like this I get aggravated at everyone who lives in this house, including me. I berate myself for not being one of those parents who made their kids do chores. I never even made them clean their rooms. I'll tell you why. I'm impatient. I can't wait for things to be done. I can do things faster and more efficiently than my husband or my kids. In the years I didn't work, or only worked part-time it was never an issue. After everyone left the house I could clean with no one in my way. Ah,I miss those days. Sort of.
I've been thinking about why my house is in such a state. I promised I'd tell the truth, so here it is: I don't want to clean every minute of my life. I want to watch The Apprentice. I want to sing songs from West Side Story to Cliff and make him laugh. I need a nap. If I'm cleaning, I'm not exercising, or reading a book or talking to my kids. If my house is all clean all the time, I'm not living. When am I supposed to have my tea?
I suppose if things get really bad, I can always hire The Maids to clean the house for me. But that means they'll come in my house and see that it's not clean. So before they come over I'll have to clean up. Oh what the hell. If you come over don't expect perfection. We can have coffee and a few laughs. Just don't give me the white glove test and everything will be just fine.
I've just taken a good look around my house and have declared it a disaster area. I'm surprised the Governor of Massachusetts hasn't been called in to make it official. There are dust balls under the furniture, the windows are dirty, everyone's laundry is spilling over out of the hampers. The tidy piles I make of newspapers and catalogs and mail are not so much piles as they are misshapen blobs. While I wouldn't say my house is dirty in the same way that say, the Greyhound Bus station is dirty, I'm mortified when someone comes over, embarrassed at the boxes in the dining room (my new furniture hasn't arrived yet) and at the dog hair embedded in the carpeted stairs. None of the pictures went back up on the walls after they were painted TWO MONTHS AGO. The kitchen floor isn't looking too hot either.
At times like this I get aggravated at everyone who lives in this house, including me. I berate myself for not being one of those parents who made their kids do chores. I never even made them clean their rooms. I'll tell you why. I'm impatient. I can't wait for things to be done. I can do things faster and more efficiently than my husband or my kids. In the years I didn't work, or only worked part-time it was never an issue. After everyone left the house I could clean with no one in my way. Ah,I miss those days. Sort of.
I've been thinking about why my house is in such a state. I promised I'd tell the truth, so here it is: I don't want to clean every minute of my life. I want to watch The Apprentice. I want to sing songs from West Side Story to Cliff and make him laugh. I need a nap. If I'm cleaning, I'm not exercising, or reading a book or talking to my kids. If my house is all clean all the time, I'm not living. When am I supposed to have my tea?
I suppose if things get really bad, I can always hire The Maids to clean the house for me. But that means they'll come in my house and see that it's not clean. So before they come over I'll have to clean up. Oh what the hell. If you come over don't expect perfection. We can have coffee and a few laughs. Just don't give me the white glove test and everything will be just fine.
Sunday, November 7, 2010
R word
"Our lives begin to end the day we become silent about things that matter." ---MLK
As I stood in line at CVS today, waiting to purchase a few gift cards, the woman behind the counter seemed nice enough. She looked to be about sixty, with short blonde hair, a stylish woman with a heavy Boston accent. I've seen her before. I'm pretty sure she's the woman who assists in the beauty and make-up aisle. When it was my turn, she seemed to me to be out of place behind the register, someone who was filling in because the store was busy with customers. She activated the gift cards, except for one card she couldn't figure out. She stood there, looking from the card to the register, absent-mindedly rubbing the glue off the back of the card as she tried to figure this one card out. Without looking at me, she remarked, "I'm really not a retard. I just haven't done this kind of transaction in awhile."
There was a delay in my brain, something like the delay you see when a TV commentator is interviewing someone in another part of the world, and it takes a moment for the person to respond. I questioned whether I actually heard what I thought I heard. I looked around to meet the eyes of a woman just behind me. She'd heard it too. The shock must have been registered on my face because she slowly shook her head and quietly sighed.
At that moment, my fight or flight response kicked in, but I knew I couldn't act. There were people on line behind me and only one cashier. If I chose that moment to speak my mind, it would have only embarrassed her. This needed to be a teachable moment, but I did nothing. I finished the transaction and walked away.
Before I tell you the rest of the story (you didn't think I'd let that go, did you?), I will tell you that mothers of children with disabilities have to become militant moms. Sometimes the personal becomes the political. But there are times when a situation like this has to be handled delicately.
Let me digress for a moment. A few years ago my husband was sitting around a table of colleagues from work eating lunch. One of the men, who didn't know Ken well, made a remark about people with Down syndrome getting plastic surgery. God knows what brought that up, but the man said something to the effect that plastic surgery wasn't going to help "someone like that. They'll still look retarded." After a very uncomfortable silence on the part of those who do know about our son Cliff, my husband decided to let it go. I asked him how he could possibly walk away and say nothing! He told me that he knew, after lunch was over, that someone would take the man aside and tell him. Ken thought he'd learn the lesson much more effectively that way.
I walked out of CVS heading towards my car. I unlocked the car and got in. My heart was pounding practically out of my chest. For twenty-five years, I have never, ever let something like that comment go without speaking up. Locking up the car, I went back into the store and saw the same long line. I had no plan at that point. Then, I approached a woman towards the back of the store and asked, "Are you the manager?" She answered yes and I took a deep breath. She listened to what had transpired and she saw how one word had made such an impact on me. I told her I didn't want her to reprimand the woman, but to explain to her, and every employee, what is acceptable in the workplace and what isn't. How what you say reflects on who you are, and ultimately, on the business. And how words are powerful, whether you realize it or not.
Who am I? I am part of the resistance movement. A movement that says, you will not use hate speech about my child. Whether you meant any harm or did not mean any harm, you cause harm when you say that word. When you say it, its meaning reverberates out into the world. You may say you are not insulting my child, that it's a word everyone uses, that it doesn't really mean anything. But each time you say it, you reinforce the acceptance of it, and no matter how you spin it, it's hurtful and wrong.
I hope, with all my heart, that the blonde woman in CVS will remember and take to heart what her manager tells her. It's my hope that if she realizes it's not okay to say it at work, it's not okay to say it anywhere. Maybe, just maybe, that understanding will reverberate out into the world instead.
http://www.r-word.org/
As I stood in line at CVS today, waiting to purchase a few gift cards, the woman behind the counter seemed nice enough. She looked to be about sixty, with short blonde hair, a stylish woman with a heavy Boston accent. I've seen her before. I'm pretty sure she's the woman who assists in the beauty and make-up aisle. When it was my turn, she seemed to me to be out of place behind the register, someone who was filling in because the store was busy with customers. She activated the gift cards, except for one card she couldn't figure out. She stood there, looking from the card to the register, absent-mindedly rubbing the glue off the back of the card as she tried to figure this one card out. Without looking at me, she remarked, "I'm really not a retard. I just haven't done this kind of transaction in awhile."
There was a delay in my brain, something like the delay you see when a TV commentator is interviewing someone in another part of the world, and it takes a moment for the person to respond. I questioned whether I actually heard what I thought I heard. I looked around to meet the eyes of a woman just behind me. She'd heard it too. The shock must have been registered on my face because she slowly shook her head and quietly sighed.
At that moment, my fight or flight response kicked in, but I knew I couldn't act. There were people on line behind me and only one cashier. If I chose that moment to speak my mind, it would have only embarrassed her. This needed to be a teachable moment, but I did nothing. I finished the transaction and walked away.
Before I tell you the rest of the story (you didn't think I'd let that go, did you?), I will tell you that mothers of children with disabilities have to become militant moms. Sometimes the personal becomes the political. But there are times when a situation like this has to be handled delicately.
Let me digress for a moment. A few years ago my husband was sitting around a table of colleagues from work eating lunch. One of the men, who didn't know Ken well, made a remark about people with Down syndrome getting plastic surgery. God knows what brought that up, but the man said something to the effect that plastic surgery wasn't going to help "someone like that. They'll still look retarded." After a very uncomfortable silence on the part of those who do know about our son Cliff, my husband decided to let it go. I asked him how he could possibly walk away and say nothing! He told me that he knew, after lunch was over, that someone would take the man aside and tell him. Ken thought he'd learn the lesson much more effectively that way.
I walked out of CVS heading towards my car. I unlocked the car and got in. My heart was pounding practically out of my chest. For twenty-five years, I have never, ever let something like that comment go without speaking up. Locking up the car, I went back into the store and saw the same long line. I had no plan at that point. Then, I approached a woman towards the back of the store and asked, "Are you the manager?" She answered yes and I took a deep breath. She listened to what had transpired and she saw how one word had made such an impact on me. I told her I didn't want her to reprimand the woman, but to explain to her, and every employee, what is acceptable in the workplace and what isn't. How what you say reflects on who you are, and ultimately, on the business. And how words are powerful, whether you realize it or not.
Who am I? I am part of the resistance movement. A movement that says, you will not use hate speech about my child. Whether you meant any harm or did not mean any harm, you cause harm when you say that word. When you say it, its meaning reverberates out into the world. You may say you are not insulting my child, that it's a word everyone uses, that it doesn't really mean anything. But each time you say it, you reinforce the acceptance of it, and no matter how you spin it, it's hurtful and wrong.
I hope, with all my heart, that the blonde woman in CVS will remember and take to heart what her manager tells her. It's my hope that if she realizes it's not okay to say it at work, it's not okay to say it anywhere. Maybe, just maybe, that understanding will reverberate out into the world instead.
http://www.r-word.org/
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