This poem was given to us when Taylor was first born and it makes life with a disabled child make sense to others in the best way possible. I often think I'd love to do a women's retreat with Holland as a theme...complete with GORGEOUS tulips everywhere because there are so many of life's circumstances that could become "Hollands" for us.
Welcome To Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with 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.
Sunday, December 28, 2008
Blind and Seek
"Like one from whom men hide their faces he was despised, and we esteemed him not." Isaiah 53:3
Taylor started her own version of hide-and-seek while "watching" one of Lauren's soccer games this year. The game started after a solid ten minutes of chanting (loudly), "Boring, boring, boring," while sitting in her chair. We've given her all sorts of means to get involved in the game in her own way...pompoms, cheer sticks, bam-bam sticks, etc. This time nothing was killing her boredom.
Taylor decided she wanted to play hide-and-seek. Well, her version went something like this. "Mom, you count. I'll hide." Of course, I had to appease her to keep one eye on the game for Lauren. So off I went counting, and off Taylor went "hiding." When I got to ten and said, "Ready or not, here I come," she squatted down, and yelled, "OK, Mom. Come and find me." I could also hear her saying to herself, "This is a great hiding spot." Little did she know it was literally right in the open of the field. Of course, I would say the usual, "Now, where is that Taylor?" to which she would giggle from her squat.
After playing and watching Lauren at the same time, I got to thinking, this game is like when we are missing something right there in front of us! Sometimes we think we're hiding from God or He's hiding from us, but He's literally right there in the open. He's never hiding though sometimes it feels like He might be far away. We're never able to hide anything from Him. He sees it all. I can imagine Him wanting to say, "Ready or not, here I come," but He'd never do that to us. He always gives us the choice. What's your choice today?
Taylor started her own version of hide-and-seek while "watching" one of Lauren's soccer games this year. The game started after a solid ten minutes of chanting (loudly), "Boring, boring, boring," while sitting in her chair. We've given her all sorts of means to get involved in the game in her own way...pompoms, cheer sticks, bam-bam sticks, etc. This time nothing was killing her boredom.
Taylor decided she wanted to play hide-and-seek. Well, her version went something like this. "Mom, you count. I'll hide." Of course, I had to appease her to keep one eye on the game for Lauren. So off I went counting, and off Taylor went "hiding." When I got to ten and said, "Ready or not, here I come," she squatted down, and yelled, "OK, Mom. Come and find me." I could also hear her saying to herself, "This is a great hiding spot." Little did she know it was literally right in the open of the field. Of course, I would say the usual, "Now, where is that Taylor?" to which she would giggle from her squat.
After playing and watching Lauren at the same time, I got to thinking, this game is like when we are missing something right there in front of us! Sometimes we think we're hiding from God or He's hiding from us, but He's literally right there in the open. He's never hiding though sometimes it feels like He might be far away. We're never able to hide anything from Him. He sees it all. I can imagine Him wanting to say, "Ready or not, here I come," but He'd never do that to us. He always gives us the choice. What's your choice today?
Monday, December 22, 2008
Happy Birthday Jesus!
" 'I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord.' " Luke 2:10-11
MERRY CHRISTMAS!
Christmas is my favorite season of the year...by far! I love the Christmas carols, preparing for Jesus' birthday, shopping for presents, giving presents, EVERYTHING!!! I even love the hustle and bustle (as long as I'm slightly geared up for the longer lines and attitude adjustments I need along the way!).
My favorite memories of Christmas always revolved around looking at the Christmas lights. Obviously, this has absolutely ZERO meaning whatsoever for Taylor. I loved taking Lauren her first two Christmases to my mom's house because in the next neighborhood is one of the greatest displays of neighborhood Christmas lights you can imagine! I got giddy bringing Lauren over there to share in my favorite childhood Christmas memories.
The year we brought Taylor over there, those same giddy feelings turned to great sadness. I have truly had to recreate Christmas memories and bring different senses to the forefront at Christmastime. It is a reminder constantly of keeping Jesus at the center because all the other stuff really doesn't matter...as much fun as it all is!
This year, we have had to realize what is really important as Mike's dad suffered a stroke just two days ago. Christmas is JESUS! It was the greatest reminder of going back to the basics when Lauren and Taylor's first reaction to hearing about Grandpa Russ was, "Well, Mom, we just have to pray." Yes, we have to! What gifts have you been given this Christmas day...and most importantly, have you received the free gift of Jesus Himself? Though we celebrate Christmas but one day each year, He gives Himself to us every day every year!
MERRY CHRISTMAS!
Christmas is my favorite season of the year...by far! I love the Christmas carols, preparing for Jesus' birthday, shopping for presents, giving presents, EVERYTHING!!! I even love the hustle and bustle (as long as I'm slightly geared up for the longer lines and attitude adjustments I need along the way!).
My favorite memories of Christmas always revolved around looking at the Christmas lights. Obviously, this has absolutely ZERO meaning whatsoever for Taylor. I loved taking Lauren her first two Christmases to my mom's house because in the next neighborhood is one of the greatest displays of neighborhood Christmas lights you can imagine! I got giddy bringing Lauren over there to share in my favorite childhood Christmas memories.
The year we brought Taylor over there, those same giddy feelings turned to great sadness. I have truly had to recreate Christmas memories and bring different senses to the forefront at Christmastime. It is a reminder constantly of keeping Jesus at the center because all the other stuff really doesn't matter...as much fun as it all is!
This year, we have had to realize what is really important as Mike's dad suffered a stroke just two days ago. Christmas is JESUS! It was the greatest reminder of going back to the basics when Lauren and Taylor's first reaction to hearing about Grandpa Russ was, "Well, Mom, we just have to pray." Yes, we have to! What gifts have you been given this Christmas day...and most importantly, have you received the free gift of Jesus Himself? Though we celebrate Christmas but one day each year, He gives Himself to us every day every year!
Wednesday, December 17, 2008
Letter to Taylor
The other day I was cleaning out our pantry. Well, I seem to clean out the pantry every time we head to Sam's Club, but this time I actually opened up the journal that had been sitting pretty in that closet for five years. I found this one and only entry.
May 14, 2003
My Dearest Taylor,
You are nearly two months old already, and I am finally getting to write about the beginning of your journey! You will have a letter which announces your birth to everyone which explained the events of that day.
So much has happened to you and with you in these short weeks! You have seen more doctors than we care to mention, but everywhere we go, you're described as "vigorous." That's such a blessing...we wonder if this is an indicator of your personality as it develops. :0)
We also seem to find out that there are so many fewer things "wrong" than we originally thought. More and more positive things are coming from our visits to doctors.
Taylor, you are a blessing, a gift, a special treasure. Your dad and I are so lucky to be your parents. Lauren is so lucky to be your sister. She loves you so much...as we all do, of course! I have to tell Lauren many times each day NOT to kiss you as she would spend the entire day suffocating you. :0) Of course, she does...
The letter was unfinished, and it's the only entry in this large journal. I love living this life out and seeing our "journal" fill with life not just words.
May 14, 2003
My Dearest Taylor,
You are nearly two months old already, and I am finally getting to write about the beginning of your journey! You will have a letter which announces your birth to everyone which explained the events of that day.
So much has happened to you and with you in these short weeks! You have seen more doctors than we care to mention, but everywhere we go, you're described as "vigorous." That's such a blessing...we wonder if this is an indicator of your personality as it develops. :0)
We also seem to find out that there are so many fewer things "wrong" than we originally thought. More and more positive things are coming from our visits to doctors.
Taylor, you are a blessing, a gift, a special treasure. Your dad and I are so lucky to be your parents. Lauren is so lucky to be your sister. She loves you so much...as we all do, of course! I have to tell Lauren many times each day NOT to kiss you as she would spend the entire day suffocating you. :0) Of course, she does...
The letter was unfinished, and it's the only entry in this large journal. I love living this life out and seeing our "journal" fill with life not just words.
More Lessons from the Ocularist
It's been a while since posting, but this message has rung loud and clear in my little brain for a long time. The first time Taylor got her full painted prosthetics, the transformation was unreal! I saw that little girl "complete" on the outside. Those eyes didn't fit perfectly though, and they needed to be readjusted several times a day. We'd look over, and one of Tay's eyes would have moved to where it was pointing toward her nose...and looking straight up toward her forehead...at the same time! Really, it was comical watching how often they would wander and settle in to where those prosthetics felt comfortable.
That reminded me often of how many times a day we need readjusting. Even when we we're trying to live a life guided by God, walking with the Spirit, we're no where near perfect. We may look pretty good at times, but we're always in need of minor adjustments or major overhauls. Just like Taylor needs minor adjustments with those eyes at times, and others it's a start-from-scratch kind of thing.
The beautiful thing about God is that He doesn't care where we're at as long as we're with Him. He'll provide the fine-tuning or major reconstruction if we're open to it. I love knowing that He's working on me all the time, and I don't have to pretend to be anything less or more than what I am today.
That reminded me often of how many times a day we need readjusting. Even when we we're trying to live a life guided by God, walking with the Spirit, we're no where near perfect. We may look pretty good at times, but we're always in need of minor adjustments or major overhauls. Just like Taylor needs minor adjustments with those eyes at times, and others it's a start-from-scratch kind of thing.
The beautiful thing about God is that He doesn't care where we're at as long as we're with Him. He'll provide the fine-tuning or major reconstruction if we're open to it. I love knowing that He's working on me all the time, and I don't have to pretend to be anything less or more than what I am today.
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