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.
Friday, November 28, 2008
Lessons from an Ocularist
"Jesus answered, 'I am the way and the truth and the life.' " John 14:6
Two weeks after Taylor was born, we added John Kennedy to our list of "groupies." He was and still is Taylor's ocularist. When we went to see him for the first time, Mike, Taylor, and I, my mom, and Mike's dad all dressed up for this all-important doctor's visit.
When we got there, we realized, John is definitely NOT a doctor, he is 100% talented artist. We left his office with Taylor's first set of conformers. Those conformers were plastic "things" that had "handles" about 1 1/2 inches long sticking out of Taylor's eye socket area. Those conformers opened up the space in Tay's eye socket and helped grow her forehead and skull area which is shaped by a baby's eye development in utero, specifically the first trimester. To get them in, we laid Taylor on the floor of his carpeted office and forced the plastics into the slits that were supposed to be eyes.
It was a year and a half of conformers and questions that ranged from, "What did you do to your baby's eyes?" to ,"My, what long eyelashes your daughter has!" which we'd get when visiting the convalescent hospital Mike's grandmother was in at the time. After that long time of growing and building Taylor's eye socket area and facial structure, it was time to graduate to prosthetic eyes.
The day Taylor graduated from conformers to prosthetics was the completed picture of the little girl I knew she was from the start. Seeing a “completed” picture on the outside with her prosthetics mirrored the completed image I had always envisioned as her mom. It reminded me a couple of years later of how God created us with "holes" that can only be filled by Him. Just like Taylor’s “holes” were only completed with perfectly fitting prosthetic eyes, God created us with a need and desire that truly can only be fitted with the grace and salvation of a relationship with His Son. Often times we try to make other things, relationships, ideas, volunteering, anything good or bad fit that gap. God sees His children complete, just as I saw Taylor complete, when He becomes our Lord and Savior.
Two weeks after Taylor was born, we added John Kennedy to our list of "groupies." He was and still is Taylor's ocularist. When we went to see him for the first time, Mike, Taylor, and I, my mom, and Mike's dad all dressed up for this all-important doctor's visit.
When we got there, we realized, John is definitely NOT a doctor, he is 100% talented artist. We left his office with Taylor's first set of conformers. Those conformers were plastic "things" that had "handles" about 1 1/2 inches long sticking out of Taylor's eye socket area. Those conformers opened up the space in Tay's eye socket and helped grow her forehead and skull area which is shaped by a baby's eye development in utero, specifically the first trimester. To get them in, we laid Taylor on the floor of his carpeted office and forced the plastics into the slits that were supposed to be eyes.
It was a year and a half of conformers and questions that ranged from, "What did you do to your baby's eyes?" to ,"My, what long eyelashes your daughter has!" which we'd get when visiting the convalescent hospital Mike's grandmother was in at the time. After that long time of growing and building Taylor's eye socket area and facial structure, it was time to graduate to prosthetic eyes.
The day Taylor graduated from conformers to prosthetics was the completed picture of the little girl I knew she was from the start. Seeing a “completed” picture on the outside with her prosthetics mirrored the completed image I had always envisioned as her mom. It reminded me a couple of years later of how God created us with "holes" that can only be filled by Him. Just like Taylor’s “holes” were only completed with perfectly fitting prosthetic eyes, God created us with a need and desire that truly can only be fitted with the grace and salvation of a relationship with His Son. Often times we try to make other things, relationships, ideas, volunteering, anything good or bad fit that gap. God sees His children complete, just as I saw Taylor complete, when He becomes our Lord and Savior.
Off to the Ocularist
What is an ocularist? Why do we even know? (Spell checker doesn't even know!) Sometimes I wonder if I would ever have a clue what an ocularist was if it weren't for Taylor. I probably could have used my Latin/Greek root study sessions for the SAT to figure some of it out, but simply put...the ocularist in our lives is John Kennedy (not related to THE John Kennedy for clarification ;0)
John is the artist who gives Taylor her "look," literally. He is the man who has made Taylor's conformers and prosthetics for the last five years. We just saw him this week, and Taylor has her new look for the time being. It is always a LONG day, and I usually get pretty down the days before anticipating what's to come. It's always unknown, but one thing is known. It's a bit painful for Tay and is extremely long and uncomfortable for both of us.
This time, we took Taylor's eyes out after about an hour. The shock never fades when her eyes first come out. I have to catch my breath, choke back tears, get my composure, and understand fully what this life of ours is. It really is like looking at someone/something else. I know it's Taylor, but I forget just what the real her looks like. Some of our family has seen Taylor without her eyes, but it really is more than most of us can take. Her fake eyes make her socially acceptable and have actually "faked" a bunch of people out!
(One of the moms from preschool who has known Taylor for over 2 years now was in shock last week when I told her about seeing the ocularist. She actually asked me why we had to see such a person. When I told her Taylor was born without eyes, she literally couldn't believe Taylor's eyes were fake. How different from the days when her prosthetics would move all out of place or would fall out. I'd just tell the babysitter or whoever else was with her to "put her eye in a baggie and I'll put it back in when we get back.")
So back to Monday, we finally got Tay's eyes out after hearing the whimpering, "Mommy, please don't," over and over and forcing back the lump in my throat as well as the tears that threatened to fall right over her precious face. Taylor and I headed out while John painted on the new irises (choosing a light blue to match Lauren's eyes) and guessed for pupil placement. We had such a good time enjoying every drive-thru we could find to pass time. We found McDonald's first and had a picnic in the car, Starbuck's next for me, filled the gas tank, and headed back to Eye Design Ocular Prosthetics.
John wasn't quite ready for us as Taylor's eyes weren't totally completed, so we went back out and put my sunglasses on Taylor's face. Then we were able to roam and do a little side shopping without completely stunning people in public! I had asked my prayer groups to pray over the day. When we finally were able to get started putting Tay's freshly painted eyes in, I watched God fully answer my prayers and the prayers that covered my hands as Taylor's new eyes went into their sockets on my first attempt. Yes, I get the honor of guiding those suckers in. (Again, not something you read about in What to Expect...or a Mom's Guide to Anything!) Taylor's new eyes aren't perfectly positioned, and we'll have to be back again in a few months, but to see my little girl "complete" again is something for which I am forever grateful.
John is the artist who gives Taylor her "look," literally. He is the man who has made Taylor's conformers and prosthetics for the last five years. We just saw him this week, and Taylor has her new look for the time being. It is always a LONG day, and I usually get pretty down the days before anticipating what's to come. It's always unknown, but one thing is known. It's a bit painful for Tay and is extremely long and uncomfortable for both of us.
This time, we took Taylor's eyes out after about an hour. The shock never fades when her eyes first come out. I have to catch my breath, choke back tears, get my composure, and understand fully what this life of ours is. It really is like looking at someone/something else. I know it's Taylor, but I forget just what the real her looks like. Some of our family has seen Taylor without her eyes, but it really is more than most of us can take. Her fake eyes make her socially acceptable and have actually "faked" a bunch of people out!
(One of the moms from preschool who has known Taylor for over 2 years now was in shock last week when I told her about seeing the ocularist. She actually asked me why we had to see such a person. When I told her Taylor was born without eyes, she literally couldn't believe Taylor's eyes were fake. How different from the days when her prosthetics would move all out of place or would fall out. I'd just tell the babysitter or whoever else was with her to "put her eye in a baggie and I'll put it back in when we get back.")
So back to Monday, we finally got Tay's eyes out after hearing the whimpering, "Mommy, please don't," over and over and forcing back the lump in my throat as well as the tears that threatened to fall right over her precious face. Taylor and I headed out while John painted on the new irises (choosing a light blue to match Lauren's eyes) and guessed for pupil placement. We had such a good time enjoying every drive-thru we could find to pass time. We found McDonald's first and had a picnic in the car, Starbuck's next for me, filled the gas tank, and headed back to Eye Design Ocular Prosthetics.
John wasn't quite ready for us as Taylor's eyes weren't totally completed, so we went back out and put my sunglasses on Taylor's face. Then we were able to roam and do a little side shopping without completely stunning people in public! I had asked my prayer groups to pray over the day. When we finally were able to get started putting Tay's freshly painted eyes in, I watched God fully answer my prayers and the prayers that covered my hands as Taylor's new eyes went into their sockets on my first attempt. Yes, I get the honor of guiding those suckers in. (Again, not something you read about in What to Expect...or a Mom's Guide to Anything!) Taylor's new eyes aren't perfectly positioned, and we'll have to be back again in a few months, but to see my little girl "complete" again is something for which I am forever grateful.
Monday, November 24, 2008
Pin the Tail
There are always a few things that make me chuckle each time they occur. (I definitely have a bit of a warped sense of humor since delivering Taylor!) One of those times is when "Pin the Tail on Whatever" is one of the main games at a birthday party. I used to cringe when the game would come out. Now I watch the hostesses cringe when they realize Taylor is coming up in line. You can almost watch them thinking, "Uhhhh...do I blindfold her and pretend away the obvious?" or, "Do I mention the obvious and ask Kim if she wants to be blindfolded?"
I've definitely let the time elapse a bit longer at each party and kind of let the situation unfold itself. Depending on the nature of the relationship and how long we've known the hostessing families, I will answer sincerely with a, "Taylor, would you like to wear a blindfold?" or with a wise crack like, "This is one of those games Taylor has an edge in."
It's great to be able to take life a little less seriously once in a while. It's also great that others can chuckle with me in the awkwardness once in a while too.
I've definitely let the time elapse a bit longer at each party and kind of let the situation unfold itself. Depending on the nature of the relationship and how long we've known the hostessing families, I will answer sincerely with a, "Taylor, would you like to wear a blindfold?" or with a wise crack like, "This is one of those games Taylor has an edge in."
It's great to be able to take life a little less seriously once in a while. It's also great that others can chuckle with me in the awkwardness once in a while too.
Saturday, November 8, 2008
A Time for Everything
"There is a time for everything, and a season for every activity under heaven: ..." Ecclesiastes 3:1-8
Blindisms...what are they? Simply put...they're behaviors that blind people exercise to keep themselves stimulated since they don't have the visual input we have. For example, Ray Charles and Stevie Wonder move their head melodically to the music. Little children often push on their eyes. Some kids flap their hands, some rock...Taylor does it all!
We've been working on having Taylor "look" like the other kids in her kindergarten class. Now, that alone sometimes makes me laugh because she has no idea if she looks like the other kids or not, but it's important for her when developing peer relationships... Positive peer relationships. Sooo...for a while now, Lauren, Mike, the extended family, and I have been working on her to eliminate the rocking in particular. It gets a little nauseating for newcomers to watch her rock back and forth endlessly while carrying on a conversation, and we've gotten quite used to it ourselves. Lauren has been playing school with Taylor since last spring to get her used to sitting "criss-cross applesauce" as would be expected this year. Taylor mastered the sitting still at school.
Coming home from school in the first weeks, she would rock endlessly. We would ask her repeatedly to stop rocking and practice like she does at school. One day she was exasperated and declared, "I just have to rock! I don't rock at school, but I just HAVE to somewhere!" What better place than in the comfort of our own home, and everyone else's home as well?
There really is a time and a place for everything. I love learning some of the best lessons from our children. What is it time for you to do?
Blindisms...what are they? Simply put...they're behaviors that blind people exercise to keep themselves stimulated since they don't have the visual input we have. For example, Ray Charles and Stevie Wonder move their head melodically to the music. Little children often push on their eyes. Some kids flap their hands, some rock...Taylor does it all!
We've been working on having Taylor "look" like the other kids in her kindergarten class. Now, that alone sometimes makes me laugh because she has no idea if she looks like the other kids or not, but it's important for her when developing peer relationships... Positive peer relationships. Sooo...for a while now, Lauren, Mike, the extended family, and I have been working on her to eliminate the rocking in particular. It gets a little nauseating for newcomers to watch her rock back and forth endlessly while carrying on a conversation, and we've gotten quite used to it ourselves. Lauren has been playing school with Taylor since last spring to get her used to sitting "criss-cross applesauce" as would be expected this year. Taylor mastered the sitting still at school.
Coming home from school in the first weeks, she would rock endlessly. We would ask her repeatedly to stop rocking and practice like she does at school. One day she was exasperated and declared, "I just have to rock! I don't rock at school, but I just HAVE to somewhere!" What better place than in the comfort of our own home, and everyone else's home as well?
There really is a time and a place for everything. I love learning some of the best lessons from our children. What is it time for you to do?
Thursday, November 6, 2008
All the Colors of a Rainbow
There are a few things that still make me tear up thinking about them...knowing Taylor cannot see them. The parades at Disney are one, lights at Christmastime another, and the beauty of a rainbow a significant third. Rainbows have always been one of my most favorite things to see. Long before I realized it was God's promise He would never flood the earth again, I loved to stare at the "ROY-G-BIV" arch in the sky with my dad. I used to look for the beginning and the end of one bow and hope to find the pot of gold at the end. On the rare occasion I'd see both sides, I'd run toward the "closer" end hoping to find that end of the rainbow and get the promise of gold.
Now, I realize rainbows are just one of those things I'll never really truly be able to explain to Taylor because they are a purely visual phenomenon. I have always been awed by their striking beauty, their magnificence that illuminates the sky and arches through those billowing clouds. They are absolutely stunning! I still can't even try to explain one to her without choking up. (Of course, I can't explain Disney parades either which is why you'll probably find me in sunglasses at each parade no matter what time of day or night that show is at! But there are plenty of other sensory effects at Disneyland to keep her attention!)
Sometimes, I feel the same way about my relationship with God as I do about explaining a rainbow to Tay. It is the most beautiful thing in my life, but to others it's nothing they can relate to. I wish I could explain to others just how awesome and illuminating a relationship with Jesus is, but I also realize no matter how much explaining there is, until they see it and want to experience it for themselves, it really isn't all that beautiful. I also understand that I won't see all the colors and the whole rainbow at once. I get to see parts of the rainbow all the time. It's beautiful all right, but the whole picture will only be complete when I'm face-to-face with the creator of those rainbows and the One who created me.
Now, I realize rainbows are just one of those things I'll never really truly be able to explain to Taylor because they are a purely visual phenomenon. I have always been awed by their striking beauty, their magnificence that illuminates the sky and arches through those billowing clouds. They are absolutely stunning! I still can't even try to explain one to her without choking up. (Of course, I can't explain Disney parades either which is why you'll probably find me in sunglasses at each parade no matter what time of day or night that show is at! But there are plenty of other sensory effects at Disneyland to keep her attention!)
Sometimes, I feel the same way about my relationship with God as I do about explaining a rainbow to Tay. It is the most beautiful thing in my life, but to others it's nothing they can relate to. I wish I could explain to others just how awesome and illuminating a relationship with Jesus is, but I also realize no matter how much explaining there is, until they see it and want to experience it for themselves, it really isn't all that beautiful. I also understand that I won't see all the colors and the whole rainbow at once. I get to see parts of the rainbow all the time. It's beautiful all right, but the whole picture will only be complete when I'm face-to-face with the creator of those rainbows and the One who created me.
Monday, October 27, 2008
Make the Call
"Therefore encourage one another and build each other up." 1 Thessalonians 5:11
Our house yesterday afternoon... four families...6 adults and 7 children...five kids are blind or visually impaired. After having our phone number in their hands for two full years, the connections finally happened. Two of these families had heard about Taylor and our family, had received our phone number, and never quite got around to making the call. The other family had heard of Taylor for over a year as well. How often do we have the number but don't make the call...to God or to those who puts around us?
One exchange yesterday went something like this, "Did you have a lot of trouble keeping track of your son's glasses when he was younger? We could never keep just one pair."
"Oh, for sure. We were always checking to make sure he had them on, or we'd find them in the weirdest places!"
I just had to interject..."Mike and I had similar problems with Taylor, only we weren't checking for glasses, we were making sure she still had both her eyes. Sometimes we'd have to search her crib, the floor to find the one that fell out at night."
We all had a great chuckle and so broke the ice for the first of many future get-togethers. God is so great to give us the right encouragers at just the right time. Sometimes the connections are instantaneous, and others need some nurturing. Our relationship with the Lord is one that is just like our person-to-person relationships. Sometimes it's humorous. Sometimes it's tough and feels a bit distant. Sometimes it's the closest one we've got. All the time, He's got us...do we have Him?
Our house yesterday afternoon... four families...6 adults and 7 children...five kids are blind or visually impaired. After having our phone number in their hands for two full years, the connections finally happened. Two of these families had heard about Taylor and our family, had received our phone number, and never quite got around to making the call. The other family had heard of Taylor for over a year as well. How often do we have the number but don't make the call...to God or to those who puts around us?
One exchange yesterday went something like this, "Did you have a lot of trouble keeping track of your son's glasses when he was younger? We could never keep just one pair."
"Oh, for sure. We were always checking to make sure he had them on, or we'd find them in the weirdest places!"
I just had to interject..."Mike and I had similar problems with Taylor, only we weren't checking for glasses, we were making sure she still had both her eyes. Sometimes we'd have to search her crib, the floor to find the one that fell out at night."
We all had a great chuckle and so broke the ice for the first of many future get-togethers. God is so great to give us the right encouragers at just the right time. Sometimes the connections are instantaneous, and others need some nurturing. Our relationship with the Lord is one that is just like our person-to-person relationships. Sometimes it's humorous. Sometimes it's tough and feels a bit distant. Sometimes it's the closest one we've got. All the time, He's got us...do we have Him?
Friday, October 24, 2008
I Will Walk by Faith
"We live by faith, not by sight." 2 Corinthians 5:7
Night time darkness always seemed to be toughest on me in those early weeks. It was quiet and pitch black, reminding me of the future in store for Taylor. I seemed to have the hardest time then dealing with the negative thoughts, oppressive thoughts, and dark emotions that I had never experienced before. There were fewer distractions at night like Lauren’s needs, doctors’ appointments, phones ringing, etc. to keep me from battling the negative flurries that would seep in. One of these such nights, I was nursing Taylor and the paralyzing thought occurred to me that she would never see her mommy. Taylor would never know what I looked like, would never know how excited I was to see her as soon as I stepped foot into a room (which actually might be a great thing NOW that I think about it!). As I pondered this HUGE idea, tears literally streamed down my face and onto Tay.
As I was silently sobbing over this “discovery,” a total God thought came to mind. Now, I never audibly hear "God" voices, but I know this thought was from the Lord Himself. It was as if He were whispering to me in that darkest of dark discoveries, “Kim, you have never seen me NOR heard me. You have never laid eyes on me, yet you know I am here for you every day. You wake up knowing I will carry you through today. Of course, your daughter will know you. Of course, she will know when you are in the room.” The tears of sadness turned to tears of joy knowing this was absolutely true and how I've lived my life. He knows we walk by faith each day knowing when we need to “hear” from Him, knowing when we need to “see” Him moving in our lives.
There is a song on the radio right now by Jeremy Camp. Some of the lyrics say, "I will walk by faith, even when I cannot see. Because this broken road prepares Your will for me." That is exactly what faith is...believing in what we cannot see. The road is broken for sure, but it has already been paved. I wake up every day trusting God will lead me. It isn't always the way I had hoped or imagined, but I do know I've put my trust in Him. We all live by faith of one form or another. We obviously can't foresee what is to come, but we move forward. I will walk by faith!
Wednesday, October 15, 2008
Reborn
"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." John 3:16
Just as Taylor resisted so firmly making her way into the world, I wonder how many of us are resisting taking steps into a new life with Christ or really allowing Him to lead us where we aren't comfortable. I really thought Taylor would be leaving the comfortable, dark cocoon of my womb and entering into the bright light and excitement of this world. We have a choice… we CAN leave spiritual darkness and be “born” into a new life…a life lighted by the light of Jesus Christ. He is a light that shines brightly in this world. His is a light that carries many through the darkest times. He wants you to trust Him to leave where we’re comfortable and take the chance.
Does it mean all is perfect and problem-free? Ummm...absolutely NOT! But, God wants us to have a relationship with Him and let Him lead us. (That's a tough one to swallow sometimes, well, a lot of the time.) Will everything make sense right away? Of course not, but thankfully, we have time here on earth to figure some of it out.
I often thought there would be other ways to heaven, but if there were, why would God send His only Son to earth from heaven where all is perfect? Not only that, why would God send His only Son knowing that Jesus would be mocked, ridiculed, and put to death? After becoming a Mom, I realized even more so, there could be no other way that a Father would allow His Son to go through such things if there were any other answer. God did that for you and for me. Take a chance, make a choice. Research...God gave us intelligent minds to figure things out for ourselves. He wants you to want Him. He already loves you!
I never imagined Taylor being born into a world of complete darkness. I thought she’d be leaving the darkness as soon as she was born. But let me tell you of the light she brings forth. I realize she may live in the dark but she walks in the Light!
Just as Taylor resisted so firmly making her way into the world, I wonder how many of us are resisting taking steps into a new life with Christ or really allowing Him to lead us where we aren't comfortable. I really thought Taylor would be leaving the comfortable, dark cocoon of my womb and entering into the bright light and excitement of this world. We have a choice… we CAN leave spiritual darkness and be “born” into a new life…a life lighted by the light of Jesus Christ. He is a light that shines brightly in this world. His is a light that carries many through the darkest times. He wants you to trust Him to leave where we’re comfortable and take the chance.
Does it mean all is perfect and problem-free? Ummm...absolutely NOT! But, God wants us to have a relationship with Him and let Him lead us. (That's a tough one to swallow sometimes, well, a lot of the time.) Will everything make sense right away? Of course not, but thankfully, we have time here on earth to figure some of it out.
I often thought there would be other ways to heaven, but if there were, why would God send His only Son to earth from heaven where all is perfect? Not only that, why would God send His only Son knowing that Jesus would be mocked, ridiculed, and put to death? After becoming a Mom, I realized even more so, there could be no other way that a Father would allow His Son to go through such things if there were any other answer. God did that for you and for me. Take a chance, make a choice. Research...God gave us intelligent minds to figure things out for ourselves. He wants you to want Him. He already loves you!
I never imagined Taylor being born into a world of complete darkness. I thought she’d be leaving the darkness as soon as she was born. But let me tell you of the light she brings forth. I realize she may live in the dark but she walks in the Light!
Sunday, October 5, 2008
Blind Faith
" 'One thing I do know. I was blind but now I see!' " John 9:25
“Blind faith.” Now that phrase has a whole new meaning in my life!!! Faith is believing in that which you cannot see. Taylor believes and has faith that everyone willing to help her out is really going to do just that. Even when I fail her, when she bumps into something or trips over a roadblock or a crack in the sidewalk…or one of the millions of toys on the floor...she picks herself up and has faith again that I (or whoever else is helping her) will keep leading her. The difference is, the Lord will NEVER cause us to bump or fall. He is right there to pick us up when we do, and He will guide us every step of the way. It is up to us to take His hand and let Him lead the way. May my faith in the Lord my God be ever so strong that I pick myself back up off the ground, shake off the dirt, and trust Him again.
When I prayed to God for a miracle the day after Taylor was born, I prayed she would have sight. I prayed God would enable her to see. Now, five years later, I see the miracle answered differently than I could ever have anticipated. He didn’t give Taylor new eyes to see, but He did give me new vision and a new perspective through which to see. The miracle is how clearly I can see His hand in all of this. The real miracle is that He opened MY eyes to see the world in a different light.
“Blind faith.” Now that phrase has a whole new meaning in my life!!! Faith is believing in that which you cannot see. Taylor believes and has faith that everyone willing to help her out is really going to do just that. Even when I fail her, when she bumps into something or trips over a roadblock or a crack in the sidewalk…or one of the millions of toys on the floor...she picks herself up and has faith again that I (or whoever else is helping her) will keep leading her. The difference is, the Lord will NEVER cause us to bump or fall. He is right there to pick us up when we do, and He will guide us every step of the way. It is up to us to take His hand and let Him lead the way. May my faith in the Lord my God be ever so strong that I pick myself back up off the ground, shake off the dirt, and trust Him again.
When I prayed to God for a miracle the day after Taylor was born, I prayed she would have sight. I prayed God would enable her to see. Now, five years later, I see the miracle answered differently than I could ever have anticipated. He didn’t give Taylor new eyes to see, but He did give me new vision and a new perspective through which to see. The miracle is how clearly I can see His hand in all of this. The real miracle is that He opened MY eyes to see the world in a different light.
Saturday, October 4, 2008
Coincidences???
"The Lord is my helper; I will not be afraid." Hebrews 13:6
There were so many coincidental occurences those first few days. I've already shared that the Labor and Delivery nurse was a friend's sister-in-law. She was an anchor for me throughout the day. She came to my room to give me a loving embrace and held me for a long time LONG after her shift had ended. Her warmth has never been forgotten. Monica, the NICU nurse called over to Taylor when the drops weren't happening, has long been a friend of Mike's family through church. Another nurse was related to two students in my sixth grade classroom. (I get to teach part-time in Garden Grove School District and still do, thankfully!) The pediatrician on-call happened to have worked with blind children during her teen years in India. Dr. Tandon continues to be a wealth of knowledge for our family! Half the Hudson family was in Florida together, and the other half was in California. (Now, that's crazy to think about given the fact that I am the oldest of eight kids and at NO other time had the four been together in Florida.) The doctors and nurses, the support staff, and our support team each shared our "new life" in their own way. The journey had begun.
Mike and I had our first "get away" without children in that hospital room that night. What a way to spend your first night without children! (And even then, Taylor was brought in every couple of hours!) It was devastating to say the least and nothing like we had planned. I looked in the mirror at one point and truly didn't recognize the woman in the reflection. My eyes were swollen like golfballs, and I had aged ten years in two hours. It was a perfect reflection of how I was feeling on the inside though. I had never understood depression before, but I can honestly say that I felt like the woman in that mirror for a long time though I didn't look quite like that on the outside...Thank Goodness!!!
The best moment was when Lauren came to visit us in the hospital. I felt a wave of relief seeing her huge smile and beaming glow. She jumped right up on the bed next to me. Her comfort was so pure. She had no idea of what was going on except that she was a big sister and got to see Taylor and Mommy. Aaahh, the innocence of babes!
It’s only been five years, but it truly feels like a lifetime ago. So often people want to know how we found out, if we knew before Taylor was born that she would be blind, what it was like to learn the truth of her blindness. So there it is. It was definitely a shock to say the least! Now it’s time to focus on the great gifts I’ve learned because of the life we’ve been given with Taylor.
There were so many coincidental occurences those first few days. I've already shared that the Labor and Delivery nurse was a friend's sister-in-law. She was an anchor for me throughout the day. She came to my room to give me a loving embrace and held me for a long time LONG after her shift had ended. Her warmth has never been forgotten. Monica, the NICU nurse called over to Taylor when the drops weren't happening, has long been a friend of Mike's family through church. Another nurse was related to two students in my sixth grade classroom. (I get to teach part-time in Garden Grove School District and still do, thankfully!) The pediatrician on-call happened to have worked with blind children during her teen years in India. Dr. Tandon continues to be a wealth of knowledge for our family! Half the Hudson family was in Florida together, and the other half was in California. (Now, that's crazy to think about given the fact that I am the oldest of eight kids and at NO other time had the four been together in Florida.) The doctors and nurses, the support staff, and our support team each shared our "new life" in their own way. The journey had begun.
Mike and I had our first "get away" without children in that hospital room that night. What a way to spend your first night without children! (And even then, Taylor was brought in every couple of hours!) It was devastating to say the least and nothing like we had planned. I looked in the mirror at one point and truly didn't recognize the woman in the reflection. My eyes were swollen like golfballs, and I had aged ten years in two hours. It was a perfect reflection of how I was feeling on the inside though. I had never understood depression before, but I can honestly say that I felt like the woman in that mirror for a long time though I didn't look quite like that on the outside...Thank Goodness!!!
The best moment was when Lauren came to visit us in the hospital. I felt a wave of relief seeing her huge smile and beaming glow. She jumped right up on the bed next to me. Her comfort was so pure. She had no idea of what was going on except that she was a big sister and got to see Taylor and Mommy. Aaahh, the innocence of babes!
It’s only been five years, but it truly feels like a lifetime ago. So often people want to know how we found out, if we knew before Taylor was born that she would be blind, what it was like to learn the truth of her blindness. So there it is. It was definitely a shock to say the least! Now it’s time to focus on the great gifts I’ve learned because of the life we’ve been given with Taylor.
Thursday, September 25, 2008
The First Days
" 'Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.' " Joshua 1:9
The first month meant a doctor’s appointment (or two) every single day. Terms like, “ocularist (which the computer always thinks I’ve spelled wrong), developmental pediatrician, occupational therapy, physical therapy (therapy of every kind it seemed!) and surgeon, surgery, CCS, tactile defensiveness, conformers” became our new world. Depression, guilt, and fear seemed to be new encounters for me as I tried to make sense of a “new” life, MY new life.
Really what it meant was grieving the loss of the dreams Mike and I had for our family. It's a feeling I know many others have shared with me once they've experienced a loss of some kind. People asked how we moved on, but to me it felt more like starting over.
While no one could ever have prepared me for the road I would now be on, no one could have prepared me for the outpouring of love our family would receive. It really is easier to give than receive, but there are times in your life when you really must receive if you want to live. The blessings came in all kinds of packages: prayers, meals, cards, phone calls, e-mails, babysitters for Lauren, gifts, flowers...you name it. It came in the form of God, family and friends! Believe me, while the road feels lonely at times, we have always known we are not alone.
The first month meant a doctor’s appointment (or two) every single day. Terms like, “ocularist (which the computer always thinks I’ve spelled wrong), developmental pediatrician, occupational therapy, physical therapy (therapy of every kind it seemed!) and surgeon, surgery, CCS, tactile defensiveness, conformers” became our new world. Depression, guilt, and fear seemed to be new encounters for me as I tried to make sense of a “new” life, MY new life.
Really what it meant was grieving the loss of the dreams Mike and I had for our family. It's a feeling I know many others have shared with me once they've experienced a loss of some kind. People asked how we moved on, but to me it felt more like starting over.
While no one could ever have prepared me for the road I would now be on, no one could have prepared me for the outpouring of love our family would receive. It really is easier to give than receive, but there are times in your life when you really must receive if you want to live. The blessings came in all kinds of packages: prayers, meals, cards, phone calls, e-mails, babysitters for Lauren, gifts, flowers...you name it. It came in the form of God, family and friends! Believe me, while the road feels lonely at times, we have always known we are not alone.
Thursday, September 18, 2008
Delivery Day
"This is the day the Lord has made; let us rejoice and be glad in it." Psalm 118:24
With nine months of a nearly textbook pregnancy completed, March 28, 2003 was set to be one of the most exciting days of my life! I knew I’d be induced with our second daughter at Fountain Valley Regional Hospital in Fountain Valley, CA…where my mom is a nurse in the post-partum ward of the hospital. (That’s the place you go after you’ve brought that “adorable-to-only-the parents” new person into the world and you’re “recovering” from the all-natural birthing process.)
We dropped our older daughter, Lauren… nearly 2 at the time…off at Grandma Bev’s and Grandpa Russ’s for the day. We figured we’d call Bev when the time was close so she could share in Taylor’s arrival. We also figured Mike would be picking Lauren up and having the night at home with her while I shared the first night with Taylor. Things change! Taylor didn’t seem to really want to start her life in the “real world.” I figured, “Second baby…this will go fast!” Labor is nothing fast (except for my mom who had eight kids, and by baby number five… it really was fast!).
Anyway, I was induced and was under great care with my nurse who happened to be a good friend’s sister-in-law. It’s amazing how quickly a delivery nurse can bond with a nearing delivery mom-to-be! And mine was absolutely the kindest, gentlest, most wonderful nurse on the planet. I had no idea just how invaluable she’d become.
Mike and I spent the day “enjoying” our anticipation. The pitosin was dripping, Mike and I were laughing with my mom, the nurses, visiting with family who would stop in, and things were slowly getting ready for Taylor's big arrival. Now, this was child #2 so I knew when to ask for the epidural, and believe me, I wasted no time in taking care of that! My wonderful nurse held me so tenderly. I will always remember just how nurturing she was and how confident I was in her arms. Even with that gigantic belly (well, I was never really gigantic, but I sure felt it!) I easily trusted her.
The day really did seem to go exactly as I thought it would…except of course, I figured I’d be drinking a vanilla milkshake at lunchtime with Taylor comfortably resting in my arms. It was getting closer to delivery time, Taylor giving in to the idea that she was coming out like it or not…into the light as I thought.
Finally, it was time! Two pushes, and Taylor was here! I remember asking Mike over and over, “Isn’t she beautiful, Mike? Isn’t she beautiful?” She had a folded ear and was kind of "different" looking. The thought never occurred to me that anything was seriously wrong. I just thought she looked a little different because of the entry gate into the "real world." I didn’t realize it right away, but she also had a 10-cm umbilical hernia which we later nicknamed Mount Vesuvias. It was gigantic! I remember my mom quietly asking Dr. Fraser, my OB-Gyn, a few questions. It never really dawned on me until much later that my mom was asking the doctor some specific questions, and I do mean MUCH later.
No one quite realized what we were dealing with in Taylor right at her birth.We had no idea what was going on at the time. Taylor’s APGAR scores were in the normal range, and she was screaming loud and clear, “I’m here, people! Now I’m hungry!” What a gift! (I had told myself from the third trimester on that if Taylor wasn’t a nurser, it would be OK for me to do my best and not force the issue.)
That hour in recovery with Taylor was the best gift God could have given us. Mike and I sat in the room enjoying our precious new gift. She came out suckling like no other, and nursing was what I had envisioned it to be. It was actually easy! The bond was instantaneous which I had thought about from early on in this pregnancy. I just didn’t think there would be any possible way to love a second daughter the same way or with the same amount of love I had for Lauren. How wrong I really was!
With nine months of a nearly textbook pregnancy completed, March 28, 2003 was set to be one of the most exciting days of my life! I knew I’d be induced with our second daughter at Fountain Valley Regional Hospital in Fountain Valley, CA…where my mom is a nurse in the post-partum ward of the hospital. (That’s the place you go after you’ve brought that “adorable-to-only-the parents” new person into the world and you’re “recovering” from the all-natural birthing process.)
We dropped our older daughter, Lauren… nearly 2 at the time…off at Grandma Bev’s and Grandpa Russ’s for the day. We figured we’d call Bev when the time was close so she could share in Taylor’s arrival. We also figured Mike would be picking Lauren up and having the night at home with her while I shared the first night with Taylor. Things change! Taylor didn’t seem to really want to start her life in the “real world.” I figured, “Second baby…this will go fast!” Labor is nothing fast (except for my mom who had eight kids, and by baby number five… it really was fast!).
Anyway, I was induced and was under great care with my nurse who happened to be a good friend’s sister-in-law. It’s amazing how quickly a delivery nurse can bond with a nearing delivery mom-to-be! And mine was absolutely the kindest, gentlest, most wonderful nurse on the planet. I had no idea just how invaluable she’d become.
Mike and I spent the day “enjoying” our anticipation. The pitosin was dripping, Mike and I were laughing with my mom, the nurses, visiting with family who would stop in, and things were slowly getting ready for Taylor's big arrival. Now, this was child #2 so I knew when to ask for the epidural, and believe me, I wasted no time in taking care of that! My wonderful nurse held me so tenderly. I will always remember just how nurturing she was and how confident I was in her arms. Even with that gigantic belly (well, I was never really gigantic, but I sure felt it!) I easily trusted her.
The day really did seem to go exactly as I thought it would…except of course, I figured I’d be drinking a vanilla milkshake at lunchtime with Taylor comfortably resting in my arms. It was getting closer to delivery time, Taylor giving in to the idea that she was coming out like it or not…into the light as I thought.
Finally, it was time! Two pushes, and Taylor was here! I remember asking Mike over and over, “Isn’t she beautiful, Mike? Isn’t she beautiful?” She had a folded ear and was kind of "different" looking. The thought never occurred to me that anything was seriously wrong. I just thought she looked a little different because of the entry gate into the "real world." I didn’t realize it right away, but she also had a 10-cm umbilical hernia which we later nicknamed Mount Vesuvias. It was gigantic! I remember my mom quietly asking Dr. Fraser, my OB-Gyn, a few questions. It never really dawned on me until much later that my mom was asking the doctor some specific questions, and I do mean MUCH later.
No one quite realized what we were dealing with in Taylor right at her birth.We had no idea what was going on at the time. Taylor’s APGAR scores were in the normal range, and she was screaming loud and clear, “I’m here, people! Now I’m hungry!” What a gift! (I had told myself from the third trimester on that if Taylor wasn’t a nurser, it would be OK for me to do my best and not force the issue.)
That hour in recovery with Taylor was the best gift God could have given us. Mike and I sat in the room enjoying our precious new gift. She came out suckling like no other, and nursing was what I had envisioned it to be. It was actually easy! The bond was instantaneous which I had thought about from early on in this pregnancy. I just didn’t think there would be any possible way to love a second daughter the same way or with the same amount of love I had for Lauren. How wrong I really was!
Monday, September 1, 2008
Pregnant???!!!
"'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.'" Jeremiah 29:11
It seems that everyone has their “IT” moment…you know the one that changes the course of your life as you’ve known it. For many of us, it’s losing someone so special it’s unimaginable you can ever trudge through life the same again. For others, it’s devastating medical news. It’s...fill in the blank...you name it...
For me, it’s having a blind daughter.
In July of 2002, my husband, Mike, and I had just put in an offer on a new house which would more than double the current mortgage, we were selling our home, and we had a bouncy one-year-old, Lauren, with tons of energy. Life was great!!! Four days into two escrows, I realized I was a little "off" to say the least.
When I got pregnant with our first daughter, Lauren, two years earlier I was off the pill for a couple of months, and we got pregnant within three months. It was such a gift, and I say that knowing there are many couples out there who have had unbearable heartache trying to conceive.
When I found out I was pregnant with our second, Taylor, I was in disbelief. Mike and I “refrained from pregnancy-inducing activities” during the days with any chance of conception. Now, I know something happened on one of the multiple days right after that window (OK...obviously, I know what happened). Within a few weeks I felt nauseus, tired beyond tired, and just overall yucky for a few days. You would think I would have been smart enough to put the pieces together then, but I figured we were just so crazy getting our housing stuff together that my body was just totally worn out. Not quite!
I figured I’d better take the test just to be sure. Positively positive.
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