Someone in our pediatric liver disease support group, Children's Liver Association for Support Services posted the story below years ago. The story was originally written in 1987 by Emily Pearl Kingsley about having a child with Down Syndrome. However, I find it applicable to having a child with a chronic liver diease. When I created Ashley's website, I posted this story and a short comment on the website. Today, I thought I'd share it here on Ashley's blog.
Many people can relate to this story, not just me. There are so many things in life that we just cannot plan. Having a child with a chronic illness/a disability is life altering but none-the-less a beautiful life. Ashley's birth became the best and worst time of my life but I often say that if having Ashley without biliary atresia/liver disease meant that I would not be her mom, then I am glad she has biliary atresia.
Our road with Ashley has been very different then the road we traveled with her brother, Brad. At least with Brad we went to Italy and were able to see the beauty there. But being in Holland with Ashley is even more beautiful then I could have ever imagined. The tulips, the smile of my little girl, those dimples that melt my heart, the laughter of her and her brother playing on the cobblestone roads of Holland. Life cannot get any better than this. And as long as we are together as a family we are willing to travel down every road Holland has to offer.
We still have a long journey ahead of us in Holland one full of fear, anxiety and stress but the beauty of Holland is still there. The roads here will be bumpy and full of forks but we will manage to work our way through those obstacles. We will experience happy times and times we will forget we are in Holland; but reality always brings us back to the same place; the realization that we will always be in Holland.
Holland isn't bad...it's just different. On occasion Holland becomes even more beautiful when family and friends are there to share in our experience. Will we ever leave Holland? I don't know, I am not sure I want too.
Welcome to Holland
by Emily Pearl 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 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.
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.
A Note from Laurie
Many people can relate to this story, not just me. There are so many things in life that we just cannot plan. Having a child with a chronic illness/a disability is life altering but none-the-less a beautiful life. Ashley's birth became the best and worst time of my life but I often say that if having Ashley without biliary atresia/liver disease meant that I would not be her mom, then I am glad she has biliary atresia.
Our road with Ashley has been very different then the road we traveled with her brother, Brad. At least with Brad we went to Italy and were able to see the beauty there. But being in Holland with Ashley is even more beautiful then I could have ever imagined. The tulips, the smile of my little girl, those dimples that melt my heart, the laughter of her and her brother playing on the cobblestone roads of Holland. Life cannot get any better than this. And as long as we are together as a family we are willing to travel down every road Holland has to offer.
We still have a long journey ahead of us in Holland one full of fear, anxiety and stress but the beauty of Holland is still there. The roads here will be bumpy and full of forks but we will manage to work our way through those obstacles. We will experience happy times and times we will forget we are in Holland; but reality always brings us back to the same place; the realization that we will always be in Holland.
Holland isn't bad...it's just different. On occasion Holland becomes even more beautiful when family and friends are there to share in our experience. Will we ever leave Holland? I don't know, I am not sure I want too.
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