Monday, June 14, 2010
Tuesday, April 13, 2010
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel It's like this . . .
When you are going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several house later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there yo must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy . . . and they 're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very significant loss.
But . . . if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.
c1987 by Emily Perl Kingsley. All Rights Reserved.
When you are going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several house later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there yo must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy . . . and they 're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very significant loss.
But . . . if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.
c1987 by Emily Perl Kingsley. All Rights Reserved.
Monday, February 22, 2010
Letter to Sara
Dear Sara,
I really don't have any brilliant message to impart, but I wanted to touch base and see how you are doing. It meant a lot to me to see you at the wake, but of course there was very little chatting for me there. I can't believe that the funeral was a week ago -- it still feels like five minutes ago to me.
You know, I have so much admiration for women who can do what you do -- spend your talent and energy with patients who mostly don't get better. I mean, I know that they get better for a while, but some of them don't and with patients like Mike I know that you knew from the beginning that he had something that people can't live with for very long. He had such a good year, though, that it must be horribly painful to see that end. I know that it is for me . . . but I wouldn't have given up what we had for that year for anything.
Anyhow, back to you -- thank you for letting yourself befriend Duff (and me). It made the whole process of fighting to have that year so much more human, and the treatments so much more bearable. I know that you don't have to do that, and that most patients don't get to bond up with one person because you just can't let yourself be that open and still do what you do. All I know is that it was a wonderful gift to us, and I am grateful (but sorry for the pain that it caused you). Saying goodbye to you was the beginning of Duff letting go, and I know that you knew that. I just hope that you also know how much genuine affection he had for you. That was his gift in life -- to be able to share himself with so many people that he cared for, and you were certainly one of them.
So thanks again. I am not going anywhere, and I will try to stay in touch but if that doesn't work I just wanted you to know what a difference you made in our liives and how if you don't do anyting else nice this year you can still know that you make the world a bette place just by being yourself. I know that you will soar through school and not be delivering chemo therapy forever. Be happy and stay smiling. I am sending you a picture of himself.
Stay in touch if you want! We are getting a little more normal every day, but things will be different now. Like I tell my kids, though, different isn't better or worse -- it is just different and you make of it what you want.
Love,
Cathie
I really don't have any brilliant message to impart, but I wanted to touch base and see how you are doing. It meant a lot to me to see you at the wake, but of course there was very little chatting for me there. I can't believe that the funeral was a week ago -- it still feels like five minutes ago to me.
You know, I have so much admiration for women who can do what you do -- spend your talent and energy with patients who mostly don't get better. I mean, I know that they get better for a while, but some of them don't and with patients like Mike I know that you knew from the beginning that he had something that people can't live with for very long. He had such a good year, though, that it must be horribly painful to see that end. I know that it is for me . . . but I wouldn't have given up what we had for that year for anything.
Anyhow, back to you -- thank you for letting yourself befriend Duff (and me). It made the whole process of fighting to have that year so much more human, and the treatments so much more bearable. I know that you don't have to do that, and that most patients don't get to bond up with one person because you just can't let yourself be that open and still do what you do. All I know is that it was a wonderful gift to us, and I am grateful (but sorry for the pain that it caused you). Saying goodbye to you was the beginning of Duff letting go, and I know that you knew that. I just hope that you also know how much genuine affection he had for you. That was his gift in life -- to be able to share himself with so many people that he cared for, and you were certainly one of them.
So thanks again. I am not going anywhere, and I will try to stay in touch but if that doesn't work I just wanted you to know what a difference you made in our liives and how if you don't do anyting else nice this year you can still know that you make the world a bette place just by being yourself. I know that you will soar through school and not be delivering chemo therapy forever. Be happy and stay smiling. I am sending you a picture of himself.
Stay in touch if you want! We are getting a little more normal every day, but things will be different now. Like I tell my kids, though, different isn't better or worse -- it is just different and you make of it what you want.
Love,
Cathie
Saturday, December 12, 2009
Wear Sunscreen
Wear sunscreen.
If I could offer you only one tip for the future, sunscreen would be it. The long-term benefits of sunscreen have been proved by scientists, whereas the rest of my advice has no basis more reliable than my own meandering experience. I will dispense this advice now.
Enjoy the power and beauty of your youth. Oh, never mind. You will not understand the power and beauty of your youth until they've faded. But trust me, in 20 years, you'll look back at photos of yourself and recall in a way you can't grasp now how much possibility lay before you and how fabulous you really looked. You are not as fat as you imagine.
Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.
Do one thing every day that scares you.
Sing.
Don't be reckless with other people's hearts. Don't put up with people who are reckless with yours.
Floss.
Don't waste your time on jealousy. Sometimes you're ahead, sometimes you're behind. The race is long and, in the end, it's only with yourself.
Remember compliments you receive. Forget the insults. If you succeed in doing this, tell me how.
Keep your old love letters. Throw away your old bank statements.
Stretch.
Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives. Some of the most interesting 40-year-olds I know still don't.
Get plenty of calcium. Be kind to your knees. You'll miss them when they're gone.
Maybe you'll marry, maybe you won't. Maybe you'll have children, maybe you won't. Maybe you'll divorce at 40; maybe you'll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don't congratulate yourself too much, or berate yourself either. Your choices are half chance. So are everybody else's.
Enjoy your body. Use it every way you can. Don't be afraid of it or of what other people think of it. It's the greatest instrument you'll ever own.
Dance, even if you have nowhere to do it but your living room.
Read the directions, even if you don't follow them.
Do not read beauty magazines. They will only make you feel ugly.
Get to know your parents. You never know when they'll be gone for good. Be nice to your siblings. They're your best link to your past and the people most likely to stick with you in the future.
Understand that friends come and go, but with a precious few you should hold on. Work hard to bridge the gaps in geography and lifestyle, because the older you get, the more you need the people who knew you when you were young.
Live in New York City once, but leave before it makes you hard. Live in Northern California once, but leave before it makes you soft. Travel.
Accept certain inalienable truths: Prices will rise. Politicians will philander. You, too, will get old. And when you do, you'll fantasize that when you were young, prices were reasonable, politicians were noble and children respected their elders.
Respect your elders.
Don't expect anyone else to support you. Maybe you have a trust fund. Maybe you'll have a wealthy spouse. But you never know when either one might run out.
Don't mess too much with your hair or by the time you're 40 it will look 85.
Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.
But trust me on the sunscreen.
(a column in the Chicago Tribune by Mary Schmich, 2005)
If I could offer you only one tip for the future, sunscreen would be it. The long-term benefits of sunscreen have been proved by scientists, whereas the rest of my advice has no basis more reliable than my own meandering experience. I will dispense this advice now.
Enjoy the power and beauty of your youth. Oh, never mind. You will not understand the power and beauty of your youth until they've faded. But trust me, in 20 years, you'll look back at photos of yourself and recall in a way you can't grasp now how much possibility lay before you and how fabulous you really looked. You are not as fat as you imagine.
Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.
Do one thing every day that scares you.
Sing.
Don't be reckless with other people's hearts. Don't put up with people who are reckless with yours.
Floss.
Don't waste your time on jealousy. Sometimes you're ahead, sometimes you're behind. The race is long and, in the end, it's only with yourself.
Remember compliments you receive. Forget the insults. If you succeed in doing this, tell me how.
Keep your old love letters. Throw away your old bank statements.
Stretch.
Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives. Some of the most interesting 40-year-olds I know still don't.
Get plenty of calcium. Be kind to your knees. You'll miss them when they're gone.
Maybe you'll marry, maybe you won't. Maybe you'll have children, maybe you won't. Maybe you'll divorce at 40; maybe you'll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don't congratulate yourself too much, or berate yourself either. Your choices are half chance. So are everybody else's.
Enjoy your body. Use it every way you can. Don't be afraid of it or of what other people think of it. It's the greatest instrument you'll ever own.
Dance, even if you have nowhere to do it but your living room.
Read the directions, even if you don't follow them.
Do not read beauty magazines. They will only make you feel ugly.
Get to know your parents. You never know when they'll be gone for good. Be nice to your siblings. They're your best link to your past and the people most likely to stick with you in the future.
Understand that friends come and go, but with a precious few you should hold on. Work hard to bridge the gaps in geography and lifestyle, because the older you get, the more you need the people who knew you when you were young.
Live in New York City once, but leave before it makes you hard. Live in Northern California once, but leave before it makes you soft. Travel.
Accept certain inalienable truths: Prices will rise. Politicians will philander. You, too, will get old. And when you do, you'll fantasize that when you were young, prices were reasonable, politicians were noble and children respected their elders.
Respect your elders.
Don't expect anyone else to support you. Maybe you have a trust fund. Maybe you'll have a wealthy spouse. But you never know when either one might run out.
Don't mess too much with your hair or by the time you're 40 it will look 85.
Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.
But trust me on the sunscreen.
(a column in the Chicago Tribune by Mary Schmich, 2005)
Sunday, November 22, 2009
Leftover spaghetti recipe
http://alladither.typepad.com/halfassedkitchen/2009/07/spaghetti-frittata.html
Sunday, November 15, 2009
Really stretchy Bind Off
Great for the top of socks, arm warmers, necklines, lacey edges, etc.
K2, slide the left needle into the front of the two stitches on the right needle and knit them together (leaving one stitch on the right needle). K1 one again, and repeat the process until one stitch remains -- pull tail through loop and weave in.
K2, slide the left needle into the front of the two stitches on the right needle and knit them together (leaving one stitch on the right needle). K1 one again, and repeat the process until one stitch remains -- pull tail through loop and weave in.
Friday, October 30, 2009
Moving Mom
For about a week after changing rooms she was more agitated than usual.
"Am I here because I am dying?", she wants to know. "Everyone here is really old and crazy."
How can you say "That is why you are here"? Even if she is not REALLY old, she is increasingly more frail mentally with each passing day. She doesn't need help standing up so much as her brain no longer tells her why you would want to stand up -- or what muscles you would need to do that. She isn't happy or unhappy about her surroundings. She is just slipping slowly, inexoribly into a place where the surroundings don't really matter so much -- as long as she is warm and clean and not hungry. She sleeps not so much from boredom as from the exhaustion of constantly having to try to make sense of every little thing. What day is it? Is it morning or evening? Why are these people all smiling at me? Should I know who these young people are? Didn't I just eat? How did I get these clothes on? Do I have a purse anymore?
"Am I here because I am dying?", she wants to know. "Everyone here is really old and crazy."
How can you say "That is why you are here"? Even if she is not REALLY old, she is increasingly more frail mentally with each passing day. She doesn't need help standing up so much as her brain no longer tells her why you would want to stand up -- or what muscles you would need to do that. She isn't happy or unhappy about her surroundings. She is just slipping slowly, inexoribly into a place where the surroundings don't really matter so much -- as long as she is warm and clean and not hungry. She sleeps not so much from boredom as from the exhaustion of constantly having to try to make sense of every little thing. What day is it? Is it morning or evening? Why are these people all smiling at me? Should I know who these young people are? Didn't I just eat? How did I get these clothes on? Do I have a purse anymore?
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