Tag Archives: child brain disorders

Life at home is a war zone

Life at home is a war zone 2 votes

Homes with troubled children are war zones–very different from those with physically-disabled kids.   We can’t make things better for our child with wheelchairs or ramps or other specialized equipment.  We need serious fire power.  This story tells what it’s like to live with our child, seek mental health treatment, and find social and emotional support for ourselves.  It is inspired by, and much quoted from, Emily Perl Kingsley’s “Welcome to Holland,” about having with a son with cerebral palsy.  The original is at the end of this article.

Welcome to the War Zone

I try hard, often unsuccessfully, to describe the experience of raising a child with a brain disorder – to try to help people who have not shared that difficult experience to understand it, to 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 lands.  The stewardess comes in and says, “Welcome to Afghanistan.”  “Afghanistan?!?” you say.  “What do you mean Afghanistan??  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 Afghanistan and there you must stay.

They’ve taken you to a dangerous unstable place full of fear.  You have no way to leave, so you ask for help, and citizens offer to help but you must pay in cash.  Instead of help, they lead you down one blind alley after another.  You are afraid because you are different, you are a target because you stand out.  After spending most of your cash, you can’t ignore it any more–you are in very serious trouble–completely alone in a strange country, surrounded by people who don’t like you.  You won’t be rescued.  You can only think about hiding and praying and holding yourself together.

After a few years of ‘round-the-clock stress and isolation, you make a couple of connections, and arrange an escape across the border.  There are dangers in the next country, but your connections help.  Your escape seems to take forever, yet you finally make it home!  But everyone you know has been busy coming and going to 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,  go away… because the loss of that dream is a very, very significant loss.  But… if you spend your life mourning the fact that you didn’t get to Italy, you may never feel the fulfillment of using your character-building experience to help others escape Afghanistan.

Margaret

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“Welcome to Holland” by Emily Perl Kingsley – http://ourlifeinholland.blogspot.com

“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’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 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 you 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 never have 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 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.”

The Holland story has been used widely by organizations such as NAMI (National Alliance of Mental Illness), as a way to help parents with troubled kids accept their situation when their child is identified as having a brain disorder.  Holland just seems too nice, too peaceful, to relate to our situations.

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