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I'm in Switzerland

It is important to appreciate where you have been and where you are going instead of where you think you should be or where everyone else is. I recently stumbled across a poem given to my mom several times.

Photoo: me sitting at a table with markers in had as though I am planning out what to say to my future self.
My future looks colorful



Emily Perl Kingsley

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 guidebooks 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 guidebooks. 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.

c1987 by Emily Perl Kingsley. All rights reserved.

Photo: me and my assistance dressed up as the sanderson sisters from hocuc pocus.  They are good goofy witches who somehow always find a way to fit in where they don't belong.
We aren't in Holland anymore!

Look what can happen

I am somewhere in between. Anyone who has a child who has a disability has had Welcome to Holland, sent to them by a well-meaning person. The idea is that even though you didn’t end up where you thought you’d be, where you ended up is not so bad. While I can agree that this analogy is valid, it is not necessarily true. Sometimes you end up in between, not quite fitting either destination. What is true is that parents of children with disabilities are parents. Nothing is as they expect it to be. We have all gone to the movies and expected to love the movie only to hate it. We have all gone to a party and expected to have a great time only to end up fighting with our significant other or friend. Parenting a disabled child is no different than parenting a child without disabilities. They all require love, trust, acceptance, and encouragement.

Photo: photo of my family kissing my cheek while am holding my dipolma.  This picture represents what love, trust , acceptance and encourage can do.
Strive for the Impossible

Families are Flexible

Welcome to Holland, lets you believe that you are not where you are supposed to be. When you have a disabled child, you are in Holland instead of Italy and you will stay there forever. It sheds light on the fact that one simple change can have a lasting impact on everything. The beginning of the poem discusses how you made all these plans, read all these, books, and were ready to go where everyone else was going, but ended up in Holland. So is that to say that parents who got to Italy and whose child died in an accident, drug overdose, or murdered, are now in Holland? No, all parents end up in Italy because they are parents. We cannot plan for the unexpected, parenting is being able to adjust, to being flexible, to be adaptable. Isn’t that exactly what parents and families of children with or without disabilities do? Families have to adjust when new siblings arrive, when grandparents die, or even when their parents die. Nothing is as expected, I think that’s why it is called parenthood.

Photo: This is a picture of me and my cousins, each of whom had have a secret battle. this picture represents that just because you are disabled doesn't mean you don't belong
Walk a mile in our shoes.

Value In imperfection

The poem says once I am in Holland I stay there forever. Why? What about when and if another child is born? I’m not saying Holland is a bad place, in my opinion, Holland is a layover a place to collect your thoughts, dreams, and possibilities before you continue on to Italy. When life throws a curveball, like a divorce, does that mean we end up in Holland and have to stay there forever? No, it does not, it means that life is full of unexpected events that we must find a way to handle. Much like families with children with disabilities do. They are thrown into a world where professionals are telling them, there is no hope of a future, and they try to convince parents to fix their children because the professionals see them as broken. Never once do they tell them that they as parents, they can change things, see the imperfection, and roll with it. That just because something isn't perfect doesn't mean it doesn't have value. Isn't it true that imperfections or misprints are what collectors pay big money for?

Photo: I am holding my baby cousin,  This picture represents that we are both in the same place. We found a way to be in both worlds.
Scarlet and Me

Oh the people you will meet

Much like the poem, Welcome to Holland, there are mixed messages, both positive and negative about the disability experience. I think this poem is more about life in general and the twists and turns it takes, not specifically about disability. Holland isn’t a bad place it is just not where you thought you were going and where disability is an isolating experience because you aren’t going to Italy. There are lots of people that are in Holland that you would have never met if you went to Italy. Or that somehow you have to give up all your dreams and expectations and live with that sorrow forever. So is that to say that the parents in Italy, never have to give up the dreams and expectations of their children? No, they have to be flexible, they have to be adaptive, they have to be accepting. So really it sounds like Italy is more like Holland than the poem lets you believe.

Photo: me laughing with my vision teacher who is my forver friend.  Someone who showed me how to see in a world I couldn't see.
My forever first friend. Thank you for showing me the world I couldn't see.

Life is a rollercoaster

I don’t think anyone is really prepared for parenthood, not to mention the twists and turns of life. Life and families can be messy, fun, exciting, emotional but most of all loving. I think parents of children with disabilities don’t give up their dreams, they understand that the unexpected happens and they change their dreams to meet the abilities of the child. They allow their child to create their own dreams, and surpass their own expectations and realities. Isn't that what every parent does? Don’t get me wrong Welcome to Holland is a beautiful poem, but it does not begin to explain the rollercoaster that families of children with disabilities go through. I believe that all parents go to Holland at some point in their lives as parents. As for families of children with disabilities sooner or later they land in Italy.

Video or the Twister Wooden Roller Coaster at Knoebels.

I'm in Switzerland

I have mixed feelings about this poem now that I am able to understand it. I think this poem is not just about what it is like to have a child with a disability. This poem could apply to what life is like for anyone who is different from what is considered normal. I feel that for me I am in neither Holland nor Italy, I’m in Switzerland. I’m not sure where I want to be but I do know one thing. I appreciate where I have been and where I am going and it doesn’t matter if everyone is there. They can come to visit anytime, disability can happen to everyone. What matters is that this is where I am right now.

Thank you for reading until the end!

This is the view from my wheelchair, where miracles can make a difference. Always Strive for the Impossible. Come back next week to see what is on my mind and hear more about my experiences and The View From My Wheelchair.

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