It's too much.
A friend. A friend. I have a big need and a big pain.
Autism hurts every second of every day. I hate being autistic. And I hate failing to explain why I am hurting.
Sympathy. Sympathy. Someone to give me this.
Wednesday, January 9, 2013
This photo below is a cover photo to a blog entry I made in response to Emily Perl Kingsley's 1987 poem "Welcome to Holland."
Fallujah is a horrible place. It's not Holland.
Fallujah is a horrible place. It's not Holland.
Welcome to Fallujah
I am never asked to describe the experience of first finding out that I shall be raising a child with a disability. People ask what is being done to help my child, but what about the feelings I, as a parent whose whole life is bound with the happiness of my child, had when I found out? I’ll try to help people who have not shared that unique experience understand it, imagine how it would feel. It's like this......
When you're 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 in 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 hours later, the plane is hijacked and lands. The kidnappers come in and say, "Welcome to Fallujah." "Fallujah?!?" you say. "What do you mean Fallujah?? This is a barbarian place where they behead people! 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 Fallujah and there you must stay. The important thing is that they have taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's a different place, and you are on your own here.
So you must survive. You have no control over your child’s destiny. Your child’s future is now not in your hands. Maybe it wasn’t even before, but regardless, you will never, ever, be able to explain to people who went to vacation in Italy how awful you feel in Fallujah.
Everyone you know is busy coming and going from Italy... and you will never know how carefree they felt. The worry lines on your face make you harder inside. 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 very significant loss. You don’t spend your life mourning the fact that you didn't get to Italy; you suffer the torment of captivity in Fallujah and pray for hope. You try to explain why you need sympathy but you get well meaning advice about what you should do.
When you first find out your child has a disability you don’t yet know how bad it is. You hope for the better. You cry and pray. You stop eating and sleeping. You want your child to be healthy and normal. You feel useless. You are devastated. You are jealous. You are in pain. The future is not clear. And you do more tests to find out a diagnosis so you could start to come to grips with a future you don’t want.
You are shattered, disillusioned, hurt. The last thing you need is to have to explain why you need as much sympathy as a parent of a child with an incurable disease.
You find yourself looking for the friends who will cry with you. Those are your true friends. You are sad, and the true friends will ask you about your sadness. They will know that Fallujah is horrible, and that you will be there forever.
Dusha 2009, after Emily Perl Kingsley 1987
When you're 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 in 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 hours later, the plane is hijacked and lands. The kidnappers come in and say, "Welcome to Fallujah." "Fallujah?!?" you say. "What do you mean Fallujah?? This is a barbarian place where they behead people! 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 Fallujah and there you must stay. The important thing is that they have taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's a different place, and you are on your own here.
So you must survive. You have no control over your child’s destiny. Your child’s future is now not in your hands. Maybe it wasn’t even before, but regardless, you will never, ever, be able to explain to people who went to vacation in Italy how awful you feel in Fallujah.
Everyone you know is busy coming and going from Italy... and you will never know how carefree they felt. The worry lines on your face make you harder inside. 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 very significant loss. You don’t spend your life mourning the fact that you didn't get to Italy; you suffer the torment of captivity in Fallujah and pray for hope. You try to explain why you need sympathy but you get well meaning advice about what you should do.
When you first find out your child has a disability you don’t yet know how bad it is. You hope for the better. You cry and pray. You stop eating and sleeping. You want your child to be healthy and normal. You feel useless. You are devastated. You are jealous. You are in pain. The future is not clear. And you do more tests to find out a diagnosis so you could start to come to grips with a future you don’t want.
You are shattered, disillusioned, hurt. The last thing you need is to have to explain why you need as much sympathy as a parent of a child with an incurable disease.
You find yourself looking for the friends who will cry with you. Those are your true friends. You are sad, and the true friends will ask you about your sadness. They will know that Fallujah is horrible, and that you will be there forever.
Dusha 2009, after Emily Perl Kingsley 1987
Iraqi Sunni people chant anti-American slogans as charred bodies hang from a bridge over the Tigris river in Fallujah, west of Baghdad, on Wednesday, 31 March 2004. Gunmen in Fallujah attacked two civilian cars Wednesday that residents said were carrying up to eight foreign nationals. The occupants of the cars were killed and their vehicles were set on fire. Angry crowds dragged the bodies through the streets, dismembered them and hanged some of the mutilated corpses.
Saturday, September 5, 2009
Welcome to Fallujah
I am never asked to describe the experience of first finding out that I shall be raising a child with a disability. People ask what is being done to help my child, but what about the feelings I, as a parent whose whole life is bound with the happiness of my child, had when I found out? I’ll try to help people who have not shared that unique experience understand it, imagine how it would feel. It's like this......
When you're 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 in 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 hours later, the plane is hijacked and lands. The kidnappers come in and say, "Welcome to Fallujah." "Fallujah?!?" you say. "What do you mean Fallujah?? This is a barbarian place where they behead people! 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 Fallujah and there you must stay. The important thing is that they have taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's a different place, and you are on your own here.
So you must survive. You have no control over your child’s destiny. Your child’s future is now not in your hands. Maybe it wasn’t even before, but regardless, you will never, ever, be able to explain to people who went to vacation in Italy how awful you feel in Fallujah.
Everyone you know is busy coming and going from Italy... and you will never know how carefree they felt. The worry lines on your face make you harder inside. 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 very significant loss. You don’t spend your life mourning the fact that you didn't get to Italy; you suffer the torment of captivity in Fallujah and pray for hope. You try to explain why you need sympathy but you get well meaning advice about what you should do.
When you first find out your child has a disability you don’t yet know how bad it is. You hope for the better. You cry and pray. You stop eating and sleeping. You want your child to be healthy and normal. You feel useless. You are devastated. You are jealous. You are in pain. The future is not clear. And you do more tests to find out a diagnosis so you could start to come to grips with a future you don’t want.
You are shattered, disillusioned, hurt. The last thing you need is to have to explain why you need as much sympathy as a parent of a child with an incurable disease.
You find yourself looking for the friends who will cry with you. Those are your true friends. You are sad, and the true friends will ask you about your sadness. They will know that Fallujah is horrible, and that you will be there forever.
Dusha 2009, after Emily Perl Kingsley 1987
When you're 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 in 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 hours later, the plane is hijacked and lands. The kidnappers come in and say, "Welcome to Fallujah." "Fallujah?!?" you say. "What do you mean Fallujah?? This is a barbarian place where they behead people! 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 Fallujah and there you must stay. The important thing is that they have taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's a different place, and you are on your own here.
So you must survive. You have no control over your child’s destiny. Your child’s future is now not in your hands. Maybe it wasn’t even before, but regardless, you will never, ever, be able to explain to people who went to vacation in Italy how awful you feel in Fallujah.
Everyone you know is busy coming and going from Italy... and you will never know how carefree they felt. The worry lines on your face make you harder inside. 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 very significant loss. You don’t spend your life mourning the fact that you didn't get to Italy; you suffer the torment of captivity in Fallujah and pray for hope. You try to explain why you need sympathy but you get well meaning advice about what you should do.
When you first find out your child has a disability you don’t yet know how bad it is. You hope for the better. You cry and pray. You stop eating and sleeping. You want your child to be healthy and normal. You feel useless. You are devastated. You are jealous. You are in pain. The future is not clear. And you do more tests to find out a diagnosis so you could start to come to grips with a future you don’t want.
You are shattered, disillusioned, hurt. The last thing you need is to have to explain why you need as much sympathy as a parent of a child with an incurable disease.
You find yourself looking for the friends who will cry with you. Those are your true friends. You are sad, and the true friends will ask you about your sadness. They will know that Fallujah is horrible, and that you will be there forever.
Dusha 2009, after Emily Perl Kingsley 1987
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