Bottom line, life with a child with severe health problems is a complicated maze to navigate through - especially when there is no treatment and no cure. I don't want to sit at home and feel sorry for ourselves. Actually, I refuse to do that. I want to do everything I can to fight back. And I want to have a good time doing that, and I want to show my children how to smile and embrace the good things about our life - not mourn for where we feel cheated or violated by "the way things were supposed to be". So this morning, as we're getting down to the wire for our planning of A Haunt for a Cure, I came to work and I was walking to Fountain Square to get something from Graeter's for an office celebration. I had gotten an email from the "NF mom's Rock" Facebook page. I read this story, and it hit home for me SO MUCH. It was perfect. here it is:
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'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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. 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, 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."
The pain of that will never, 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.
Written by 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. 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, 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."
The pain of that will never, 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.
Written by Emily Perl Kingsley
I couldn't have said it better myself. With this tragedy, I have been shown what really matters in life. I have an unbreakable bond with my children and my family and friends. I have the most amazing people across the country and the world that are all working with me - together - for a common goal. I never would have known any of these people and they are now my family, I love them and my life is better for going through this journey with them. It still sucks that my baby has to be sick, but he's happy; he has no idea that his struggles are extraordinary. So I feel like I'm doing all the right things.
After I read this story above, while on my walk this morning, I put my phone down and started looking at the beautiful things around me. I walked in the building, walked up to the elevator - and the door just opened up for me, I didn't even push the button. I thought, "this is going to be a great day!" Attitude is 90% of the battle. Our Haunt for a Cure is going to be a great time AND a great success to further the research to find that desperately sought after treatment and a cure to help my sweet boy and all of his friends that suffer alongside him. Welcome to Holland.
Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.
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