A small voice broke the silence as I drove. "Mommy, I wanna be a yellow shirt." Before I could say anything, Jeremy continued, "You know, a yellow shirt. A helper for Camp Attitude." Tears rolled down my cheeks as I begin to process what he was telling me. He continued, "I want to help the kids in the wheelchairs. I want to push them around and help with wheelchair races." Somehow, through my tears, I managed to tell him I thought this was his best idea ever.
There is no doubt that Dylan's siblings are exposed to a wide and vast world of special needs. We returned from Camp Attitude several weeks before that. We spent a week around children and adults in wheelchairs, some who are fed through feeding tubes, others who suffer seizures, some who use communication devices, three year old's who use walkers and individuals who have titanium legs (or "robot" legs if you went with Jeremy's description). The kids had attended camp and fully embraced the new individuals they met...wheelchairs and all...but Jeremy caught me completely off guard by what he was telling me.
As a parent, you never know what is going through the mind of your child or what words will escape their lips. Kids are brutally honest. This is the only life that my kids know, yet I think they somehow understand that the world that surrounds them is unique. I want their experiences to leave a positive impression. As a special needs mother, I never know when I might have to take some time to explain a heavy topic with little notice.
Weeks after our camp experience, the kids really had not asked many questions. Greg and Savannah are still very young. We have discussed in depth with Jeremy that all people are created differently but that we were all created by God. Dylan, of course, is oblivious to it all, although I think the "robot" legs made even him take a second glance, which resulted in a "Ooooo, wow!"
There are moments when I worry about my kids and their exposure (or lack of exposure) to various things. For our family, participating in recreational sports is difficult. Little League and nearly all other childhood sports do not fill our Saturdays. It's simply too much for Dylan: the weather, the stimulation...the list goes on and on. We spend more time in controlled, indoor environments: bookstores, libraries and even zoos. It just makes our life a little bit more sane. I would be lying if I didn't tell you that it disappoints me that we don't participate in youth sports. This may not always be the case and I am already beginning to see changes within our family dynamic that may make it possible to do things we haven't been able to do in the past. Only time will tell what the future holds for Dylan and his siblings.
A few days after Jeremy's "yellow shirt" announcement, he did something that amazed me. I never know what to expect when he says, "Mommy, look!" Nine out of ten times he blows my mind. I turned to see Savannah sitting on a small rocking chair. Jeremy had placed the chair on top of a Mickey Mouse Airplane Ride-On toy! It was a "flying wheelchair". Jeremy had come to realize, in his own way, that kids in wheelchairs are often looked at as "uncool". He said, "Mommy, it's a flying wheelchair! I can make flying wheelchairs, like the flying cars, when I grow up, so that the kids in wheelchairs will be COOL!"
Jeremy is my artist, thinker, day-dreamer and little inventor. We all have natural abilities and strengths. There are most-certainly negatives and positives to growing up with a sibling who has special needs. When I look at Jeremy, I see a little boy with a great big heart who sees those like his big brother as God sees them - no different than everyone else in this world.
Sunday, September 19, 2010
Sunday, September 12, 2010
The Ugly Law
Had I been an adult in the 1960's or 1970's, it's likely I would have been arrested on more than one occasion. After watching the movie The Music Within, I sunk deeply into our couch. My mind was racing, my heart aching. Could it really be true? Could someone really be arrested for being ugly and/or disabled or for coming to the defense of someone who was? It couldn't be. I figured that it had to be one of those aspects of a "true story movie" that was loosely based. There was only one way to find out. Time to visit the internet.
I typed in "Music Within Ugly Law" and numerous links popped up. I was hesitant to click any of them. I wanted to know the truth, but there was a part of me that just wanted to keep thinking "This can't possibly be true?!?!" Sadly, and without much effort, I found the information I was hoping I wouldn't find. Beginning sometime in the early 1900's, an individual could be fined and/or arrested if they were found to be ugly by their peers. In places like Chicago, Omaha, Nebraska and Columbus, Ohio, the Ugly Law was clearly stated in their municipal code.
Chicago's Law read as follows: "No person who is diseased, maimed, or mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."
One of the reasons for such a hideous law was that the general public didn't want to deal with those who where disabled or who suffered some other poor, physical condition. If they were "out of sight", the truth of this "ugly" community didn't have to be dealt with.
As difficult as it was to read that this sort of thing existed (and not that long ago) wasn't a huge surprise as I began to ponder it more. I am just in my early thirties, but my exposure to individuals with disabilities and special needs was rare when I was growing up. My underexposure wasn't intentional. Individuals with special needs were not
included in classrooms back then. Organizations that were designed for such groups were in their early, formative years. In June, 1962, Eunice Kennedy Shriver hosted her first summer day camp from the backyard of her own home.
For decades, those with disabilities - especially when it was known at birth - had parents who were urged to place them in institutions. They were told their children would never walk or talk or be of value to society. For those who followed their hearts and kept their children within their family unit, they were often shunned by friends and even family. They feared going out. As I watched this movie, I had a better understanding of why I had not been exposed as a young girl. They were just beginning to emerge into society when I was born. They were finding their footing in a world that was fighting silently to keep them locked up and hidden away.
The existence of the "Ugly Law" disgusts me, yet it was this law that led to the creation of the Americans with Disabilities Law of 1990. Yes, 1990! I had no idea that this law was just twenty years old! We live in a fast-paced, ever-changing world, yet the acceptance of those with disabilities just came in 1990?!
I'm incredibly thankful that I received the privilege of becoming Dylan's mama when I did. But while our society is learning that the life of Dylan is indeed valuable, many still question it. I've witnessed their stares...and I've stared right back! The life my family leads makes some people uncomfortable but I welcome it. It's an opportunity to teach. It's an opportunity to see others be challenged and grow. The process isn't fun, but it's something I would be happy to be arrested for any day, any time.
I typed in "Music Within Ugly Law" and numerous links popped up. I was hesitant to click any of them. I wanted to know the truth, but there was a part of me that just wanted to keep thinking "This can't possibly be true?!?!" Sadly, and without much effort, I found the information I was hoping I wouldn't find. Beginning sometime in the early 1900's, an individual could be fined and/or arrested if they were found to be ugly by their peers. In places like Chicago, Omaha, Nebraska and Columbus, Ohio, the Ugly Law was clearly stated in their municipal code.
Chicago's Law read as follows: "No person who is diseased, maimed, or mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."
One of the reasons for such a hideous law was that the general public didn't want to deal with those who where disabled or who suffered some other poor, physical condition. If they were "out of sight", the truth of this "ugly" community didn't have to be dealt with.
As difficult as it was to read that this sort of thing existed (and not that long ago) wasn't a huge surprise as I began to ponder it more. I am just in my early thirties, but my exposure to individuals with disabilities and special needs was rare when I was growing up. My underexposure wasn't intentional. Individuals with special needs were not
included in classrooms back then. Organizations that were designed for such groups were in their early, formative years. In June, 1962, Eunice Kennedy Shriver hosted her first summer day camp from the backyard of her own home.
For decades, those with disabilities - especially when it was known at birth - had parents who were urged to place them in institutions. They were told their children would never walk or talk or be of value to society. For those who followed their hearts and kept their children within their family unit, they were often shunned by friends and even family. They feared going out. As I watched this movie, I had a better understanding of why I had not been exposed as a young girl. They were just beginning to emerge into society when I was born. They were finding their footing in a world that was fighting silently to keep them locked up and hidden away.
The existence of the "Ugly Law" disgusts me, yet it was this law that led to the creation of the Americans with Disabilities Law of 1990. Yes, 1990! I had no idea that this law was just twenty years old! We live in a fast-paced, ever-changing world, yet the acceptance of those with disabilities just came in 1990?!
I'm incredibly thankful that I received the privilege of becoming Dylan's mama when I did. But while our society is learning that the life of Dylan is indeed valuable, many still question it. I've witnessed their stares...and I've stared right back! The life my family leads makes some people uncomfortable but I welcome it. It's an opportunity to teach. It's an opportunity to see others be challenged and grow. The process isn't fun, but it's something I would be happy to be arrested for any day, any time.
Sunday, September 5, 2010
Empty Nest
I was talking with someone recently when my current pregnancy came up. They said, "Wow, it's gonna be a long time before you have an empty nest!" It's true, but not for the reason you might think .
I don't think about it often, but it is something Rob and I have talked about on and off since becoming special needs parents. Most children are born, grow and leave "the nest". Sometimes they return at various ages and stages for a slew of reasons, but traditionally, the goal is that your child will lead their own life someday in their own home. I pray daily that this will be the case with our children - that they would lead successful, happy lives - on their own.
But we've got Dylan. It doesn't mean we won't have an empty nest someday, but it certainly spices things up. Individuals with Down syndrome attend various levels of higher education, live on their own, hold steady jobs and marry. This surprises people, but it's very true - and absolutely wonderful! Obviously, Rob and I want Dylan to be as independent as possible. Only time will tell.
The funny thing is that there is a part of me that selfishly wants Dylan home when he should be spreading his wings. It's not that I don't want him to grow and be independent - which he does daily - but I also know my red head well. Right now he likes to bolt and refuses to answer our calls when we attempt to find him, but I believe in time that will improve. There are things about him that will not change - and that's a good thing.
I got what I always wanted: a boy first and a girl last (well, what I thought would be my last!) God gave me exactly what I wanted in more ways than I could have ever imagined. Dylan is full of love and very sweet. He loves music. His current crush is Snow White. When Savannah is six, Dylan will be fourteen. I have a hunch that while Dylan will want to hang with his buddies, yet he's also a homebody and will be happy to play dress up with his sister and be Prince Charming when she's playing make believe.
When I think about the baby growing in my belly, it will be ten when Dylan is twenty. Dylan loves to read and I can already picture the two of them reading together. Dylan loves Disney movies and while I'm sure his tastes will mature, my gut tells me he will always have a place in his heart for Disney and all other kid based movies...making good company for his younger siblings!
Dylan continues to grow up daily. I've been sick and asked Dylan if he could pray for me. He said "Uh, yeah". I had no idea what he would say. He tends to say very particular prays for certain things - going to bed, blessing the food, etc. But I was asking him to do something new - pray a new prayer. While I don't recall his exacts words, it went something like this, "God, go to Disneyland, love mommy, mommy sick, feel better and go to doctor, Amen". To be honest, I was shocked. But I was also thrilled. It was another sign of maturity.
Maybe Dylan will attend college. Maybe he won't. I know he'll hold a job, but I have no idea what or where. He might marry, he might not. He might express the desire (and ability!) to leave the nest. If he does, it's going to take everything in me to not clip his wings.
I don't think about it often, but it is something Rob and I have talked about on and off since becoming special needs parents. Most children are born, grow and leave "the nest". Sometimes they return at various ages and stages for a slew of reasons, but traditionally, the goal is that your child will lead their own life someday in their own home. I pray daily that this will be the case with our children - that they would lead successful, happy lives - on their own.
But we've got Dylan. It doesn't mean we won't have an empty nest someday, but it certainly spices things up. Individuals with Down syndrome attend various levels of higher education, live on their own, hold steady jobs and marry. This surprises people, but it's very true - and absolutely wonderful! Obviously, Rob and I want Dylan to be as independent as possible. Only time will tell.
The funny thing is that there is a part of me that selfishly wants Dylan home when he should be spreading his wings. It's not that I don't want him to grow and be independent - which he does daily - but I also know my red head well. Right now he likes to bolt and refuses to answer our calls when we attempt to find him, but I believe in time that will improve. There are things about him that will not change - and that's a good thing.
I got what I always wanted: a boy first and a girl last (well, what I thought would be my last!) God gave me exactly what I wanted in more ways than I could have ever imagined. Dylan is full of love and very sweet. He loves music. His current crush is Snow White. When Savannah is six, Dylan will be fourteen. I have a hunch that while Dylan will want to hang with his buddies, yet he's also a homebody and will be happy to play dress up with his sister and be Prince Charming when she's playing make believe.
When I think about the baby growing in my belly, it will be ten when Dylan is twenty. Dylan loves to read and I can already picture the two of them reading together. Dylan loves Disney movies and while I'm sure his tastes will mature, my gut tells me he will always have a place in his heart for Disney and all other kid based movies...making good company for his younger siblings!
Dylan continues to grow up daily. I've been sick and asked Dylan if he could pray for me. He said "Uh, yeah". I had no idea what he would say. He tends to say very particular prays for certain things - going to bed, blessing the food, etc. But I was asking him to do something new - pray a new prayer. While I don't recall his exacts words, it went something like this, "God, go to Disneyland, love mommy, mommy sick, feel better and go to doctor, Amen". To be honest, I was shocked. But I was also thrilled. It was another sign of maturity.
Maybe Dylan will attend college. Maybe he won't. I know he'll hold a job, but I have no idea what or where. He might marry, he might not. He might express the desire (and ability!) to leave the nest. If he does, it's going to take everything in me to not clip his wings.
Sunday, August 29, 2010
Lifes Little Surprises
Six seemed like a nice, round number. It works well with seating arrangements nearly everywhere: airplanes, Disneyland, restaurants, and of course, our own kitchen table. Jump up to seven and you've got an uneven number. It's definition as an "odd" number is true.
Why all the talk about numbers? Well, we're currently a family of six. Some time in the month of April that will change. We will become a family of seven. That's right. The Lord has chosen to bless us with another one of His precious children! We're genuinely surprised but also incredibly grateful.
As I reflect over the past few days, it's been a whirlwind of activity: a positive pregnancy test, deliberating when to announce the "big news" and thoughts coming from every direction. Rob and I both come from large families and we always knew ours would be on the larger side. A while back, we had toyed with the thought of five, but you could say we didn't want to "play with fire". Three of the four have varying degrees of special needs and we sorta have this mind set: If we have another, all bets are off, so let's not even go there. Plus, kids aren't inexpensive! So it was settled. Four it was. Of course, God had other plans!
So here we are. So many thoughts have consumed us. One particular weighs the heaviest: Will this child be healthy? What is healthy? What is perfect? To be completely honest, I'm scared. Our track record isn't great. Yes, all of the kid's issues have been manageable, but I question how much more we could handle. Yet these are human feelings, not those of Christ. I catch myself and hear Him saying, "Trust in Me and believe in me. Have faith."
I often say the Lord doesn't give us more than we can handle with Him by our side. It's scary, yet so very true. This week I found myself re-reading Hebrews 11:1: "Now faith is being sure of what we hope for and certain of what we do not see." I have no idea how the sweet baby growing inside of me will be presented. It may be a child that, in the worlds eyes, does have perfect health. It may have "perfect health" as defined by God. Between now and the time that "perfect child" is placed in my arms, I am certain of one thing: my faith will be tested. I will attend doctor appointments where I will be told this and that and offered more tests than the average pregnant women. It's part of my life with my medical history. I will agree to take some of the tests. I will elect not to take some. It's a scary road to embark on and Satan will be tailgating me all the way. But I have to keep my eyes on my destination and remember to refuel through prayer and time in God's word every single day.It won't be easy, but I'm aware of who's tailgating me. I have complete confidence that a fender-bender can...and WILL...be avoided!
Why all the talk about numbers? Well, we're currently a family of six. Some time in the month of April that will change. We will become a family of seven. That's right. The Lord has chosen to bless us with another one of His precious children! We're genuinely surprised but also incredibly grateful.
As I reflect over the past few days, it's been a whirlwind of activity: a positive pregnancy test, deliberating when to announce the "big news" and thoughts coming from every direction. Rob and I both come from large families and we always knew ours would be on the larger side. A while back, we had toyed with the thought of five, but you could say we didn't want to "play with fire". Three of the four have varying degrees of special needs and we sorta have this mind set: If we have another, all bets are off, so let's not even go there. Plus, kids aren't inexpensive! So it was settled. Four it was. Of course, God had other plans!
So here we are. So many thoughts have consumed us. One particular weighs the heaviest: Will this child be healthy? What is healthy? What is perfect? To be completely honest, I'm scared. Our track record isn't great. Yes, all of the kid's issues have been manageable, but I question how much more we could handle. Yet these are human feelings, not those of Christ. I catch myself and hear Him saying, "Trust in Me and believe in me. Have faith."
I often say the Lord doesn't give us more than we can handle with Him by our side. It's scary, yet so very true. This week I found myself re-reading Hebrews 11:1: "Now faith is being sure of what we hope for and certain of what we do not see." I have no idea how the sweet baby growing inside of me will be presented. It may be a child that, in the worlds eyes, does have perfect health. It may have "perfect health" as defined by God. Between now and the time that "perfect child" is placed in my arms, I am certain of one thing: my faith will be tested. I will attend doctor appointments where I will be told this and that and offered more tests than the average pregnant women. It's part of my life with my medical history. I will agree to take some of the tests. I will elect not to take some. It's a scary road to embark on and Satan will be tailgating me all the way. But I have to keep my eyes on my destination and remember to refuel through prayer and time in God's word every single day.It won't be easy, but I'm aware of who's tailgating me. I have complete confidence that a fender-bender can...and WILL...be avoided!
Sunday, August 15, 2010
To Bake A Cake
When I asked my son, Jeremy, what kind of cake he wanted for his birthday, he didn't hesitate. "Herbie!" he said as he smiled big. I smiled back...and swallowed hard. For each of the kids birthdays I make their cake. I design it after whatever they are completely and totally in love with at the time. It's a tradition I've created. Jeremy's been obsessed with Herbie (the Love Bug) for over a year and I'm crossing my fingers that the phase ends....soon!
As his birthday approached, I asked him one final time what he wanted. Nothing had changed. I knew this cake was going to take some time and thought. I bought the ingredients and decorations. I did on-line research at my favorite cake website....and yes, it had examples of Herbie cakes, much to my surprise and relief!
When cake-baking day arrived, I was scared. I didn't want to disappoint him. I've often done cupcake-cakes, but knew that wouldn't cut it this time around. It had to be a three-dimensional Volkswagen. That meant multiple cakes, cutting, shaping and strategic icing.
As I began, I thought of Dylan's IEP. In many ways, it's like baking a cake. It takes time and preparation. Lists are made to ensure all ingredients are bought and then a recipe must be followed. I baked and thought of Dylan's IEP and a grin crossed my face. He just started 3rd grade and is off to a great start, but this great start has taken a lot of prep. Then I thought back to his 2nd grade year and I'm sure my brow furrowed a bit. It had been a rough year. We had attempted to get his "cake" just right, but the recipe was off. It was no one's fault. Things just hadn't mixed quite right. There was too much of that, too little of this and the timing was off....creating a half-baked cake at the years end. We had to make a decision. Would we learn from the mistakes that had been made or repeat them? Re-baking isn't fun. It takes time and energy, but sometimes you have to do it in order for something to turn out right.
If I were to describe how it is too raise Dylan, I would say that it is much like baking a cake. You keep trying different recipes until you find one you like. The funny thing is that this year we like chocolate with white frosting but next year it might be white cake with strawberry frosting. We have to be willing to try new "flavors", add extra "filling" now and then and take away a few decorations on occasion in order to see Dylan grow and thrive. This applies to ALL areas (not just his IEP): discipline, entertainment, what he eats - you name it!
There are times when this whole cake baking thing is just down right miserable. Slaving over a stove non-stop isn't a pleasant feeling and washing all of the bake ware is tedious, not to mention the non-stop trips to the store to try something new, in hopes that the correct ingredient will finally be found. Fortunately, I'm just a cook in the kitchen who is overseen by the greatest chef I will ever know. Yes, I have to figure out which ingredients to combine, but if I'm going to His great cookbook daily, He will lead me and guide. He helps me think outside the box. He shows me ingredients I may not have considered before. And in the end, He sees the entire menu. It will taste amazing and the temperature will be perfect!
As his birthday approached, I asked him one final time what he wanted. Nothing had changed. I knew this cake was going to take some time and thought. I bought the ingredients and decorations. I did on-line research at my favorite cake website....and yes, it had examples of Herbie cakes, much to my surprise and relief!
When cake-baking day arrived, I was scared. I didn't want to disappoint him. I've often done cupcake-cakes, but knew that wouldn't cut it this time around. It had to be a three-dimensional Volkswagen. That meant multiple cakes, cutting, shaping and strategic icing.
As I began, I thought of Dylan's IEP. In many ways, it's like baking a cake. It takes time and preparation. Lists are made to ensure all ingredients are bought and then a recipe must be followed. I baked and thought of Dylan's IEP and a grin crossed my face. He just started 3rd grade and is off to a great start, but this great start has taken a lot of prep. Then I thought back to his 2nd grade year and I'm sure my brow furrowed a bit. It had been a rough year. We had attempted to get his "cake" just right, but the recipe was off. It was no one's fault. Things just hadn't mixed quite right. There was too much of that, too little of this and the timing was off....creating a half-baked cake at the years end. We had to make a decision. Would we learn from the mistakes that had been made or repeat them? Re-baking isn't fun. It takes time and energy, but sometimes you have to do it in order for something to turn out right.
If I were to describe how it is too raise Dylan, I would say that it is much like baking a cake. You keep trying different recipes until you find one you like. The funny thing is that this year we like chocolate with white frosting but next year it might be white cake with strawberry frosting. We have to be willing to try new "flavors", add extra "filling" now and then and take away a few decorations on occasion in order to see Dylan grow and thrive. This applies to ALL areas (not just his IEP): discipline, entertainment, what he eats - you name it!
There are times when this whole cake baking thing is just down right miserable. Slaving over a stove non-stop isn't a pleasant feeling and washing all of the bake ware is tedious, not to mention the non-stop trips to the store to try something new, in hopes that the correct ingredient will finally be found. Fortunately, I'm just a cook in the kitchen who is overseen by the greatest chef I will ever know. Yes, I have to figure out which ingredients to combine, but if I'm going to His great cookbook daily, He will lead me and guide. He helps me think outside the box. He shows me ingredients I may not have considered before. And in the end, He sees the entire menu. It will taste amazing and the temperature will be perfect!
Sunday, August 8, 2010
Scar or Souvenir?
I filled the tub with warm water and slowly undressed my infant daughter. As I put her into the tub, I knew the time had come. It had been a solid six weeks and the bandage was beginning to peel away. I had been putting this moment off. She was off all medications and slowly putting on weight. This was the last thing that needed to be done. I knew I would be relieved in the end, but in that moment, I was anxious.
She was content - smiling and splashing her little hands in the soapy water. I started to peel back the tape and gauze and it practically fell off. I looked down at her chest and took a deep breath, exhaling slowly. I had no idea what to expect. I stared intently, slowly running my finger along the thin, long line with a purplish tint. They had stitched her sternum but only taped the surface incision, which had surprised me. The purple seemed dark against the fair skin it surrounded. I was told it would fade and appear more white over time.
Tears rolled down my cheeks. I was so incredibly thankful. She was "PINK"! The doctors were confident that this would to be the only incision she would ever have to bare, although there was no guarantee. But it was there - for life. As I bathed her, running the washcloth down her chest, I heard Him: "It's not a scar, it's a souvenir." I froze. I understood instantly. How could I have been so blind? All this time it had been referred to as a "scar", which is thought of as a bad thing. But it wasn't just a scar - it was a souvenir.
She had been born with an imperfect heart. In order to live a full life, she had needed surgery, which would leave her with a "scar" that she would carry forever...and in a fairly obvious place. I wrapped her in her towel. As I dressed her, I leaned down and kissed her "souvenir". Just moments before I was looking at it, unsure of how to describe how I felt. Now all I could see was beauty. It is a reminder of His faithfulness. It is a reminder of His constant hand on our life - her life - now and forever. It is a reminder of His healing touch. It is a SOUVENIR.
It has been well over a year since I first saw her souvenir. It has faded and has indeed become a long, thin white line...just as promised. During the summer, I notice it more....when she's in her swimsuit, wearing tank tops or in a sweet summer dress. I make no attempt to hide it. On occasion, others notice it. It has become a bridge to share the greatness of the Lord with others. In time she will ask about it. I look forward to that. I look forward to sharing how amazing our God is and how He chose her to be a testament to His ever present glory and power.
She was content - smiling and splashing her little hands in the soapy water. I started to peel back the tape and gauze and it practically fell off. I looked down at her chest and took a deep breath, exhaling slowly. I had no idea what to expect. I stared intently, slowly running my finger along the thin, long line with a purplish tint. They had stitched her sternum but only taped the surface incision, which had surprised me. The purple seemed dark against the fair skin it surrounded. I was told it would fade and appear more white over time.
Tears rolled down my cheeks. I was so incredibly thankful. She was "PINK"! The doctors were confident that this would to be the only incision she would ever have to bare, although there was no guarantee. But it was there - for life. As I bathed her, running the washcloth down her chest, I heard Him: "It's not a scar, it's a souvenir." I froze. I understood instantly. How could I have been so blind? All this time it had been referred to as a "scar", which is thought of as a bad thing. But it wasn't just a scar - it was a souvenir.
She had been born with an imperfect heart. In order to live a full life, she had needed surgery, which would leave her with a "scar" that she would carry forever...and in a fairly obvious place. I wrapped her in her towel. As I dressed her, I leaned down and kissed her "souvenir". Just moments before I was looking at it, unsure of how to describe how I felt. Now all I could see was beauty. It is a reminder of His faithfulness. It is a reminder of His constant hand on our life - her life - now and forever. It is a reminder of His healing touch. It is a SOUVENIR.
It has been well over a year since I first saw her souvenir. It has faded and has indeed become a long, thin white line...just as promised. During the summer, I notice it more....when she's in her swimsuit, wearing tank tops or in a sweet summer dress. I make no attempt to hide it. On occasion, others notice it. It has become a bridge to share the greatness of the Lord with others. In time she will ask about it. I look forward to that. I look forward to sharing how amazing our God is and how He chose her to be a testament to His ever present glory and power.
Sunday, August 1, 2010
House Upon A Rock
The doors swung open. The music started to play and the congregation rose to their feet. I started to walk forward. I glanced to the right and into the eyes of the man who holds the honor of holding me first. My gaze shifted to the left, to another wonderful man who had entered my life a bit later, making the life of my mom and I complete. I linked my arms in theirs and proceeded forward. As I walked, my gaze met his. He was tall and handsome. He was waiting for me, just as I had been waiting for him. In a single moment, two great men who loved me dearly entrusted me to another man.
Remember to remember. Those were the words I kept repeating in my mind throughout the ceremony. Someone close had shared them with me (and it seemed like an odd thing to say), but in that moment I understood: Soak it in! So much had led up to this day: preparation, anticipation and pure excitement. This day would come and go, just like any other day. It wouldn't last forever. In the years to come it's clarity would fade. I stared at his sunburned face and smiled. I would always remember that sunburn. There was no doubt about it.
The candles were finally lit, even with the air conditioner blowing strong. I heard giggles. Maybe four little girls were too many, but I couldn't bear to leave anyone out! We knelled. We took communion. We were giving our marriage to Him. As we kneeled, whispering to one another, the sweetest voice sung in the background. The song itself was not anything extraordinary, just a simple prayer about what we hoped our marriage would be....
Remember to remember. Those were the words I kept repeating in my mind throughout the ceremony. Someone close had shared them with me (and it seemed like an odd thing to say), but in that moment I understood: Soak it in! So much had led up to this day: preparation, anticipation and pure excitement. This day would come and go, just like any other day. It wouldn't last forever. In the years to come it's clarity would fade. I stared at his sunburned face and smiled. I would always remember that sunburn. There was no doubt about it.
The candles were finally lit, even with the air conditioner blowing strong. I heard giggles. Maybe four little girls were too many, but I couldn't bear to leave anyone out! We knelled. We took communion. We were giving our marriage to Him. As we kneeled, whispering to one another, the sweetest voice sung in the background. The song itself was not anything extraordinary, just a simple prayer about what we hoped our marriage would be....
Household of Faith by Steve Green
Here we are at the start committing to each other
By His word and from our hearts
We will be a family in a house that will be a home
And with faith we'll build it strong
We'll build a household of faith
That together we can make
And when the strong winds blow it won't fall down
As one in Him we'll grow and the whole world will know
We are a household of faith
Now to be a family we've got to love each other
At any cost unselfishly
And our home must be a place that fully abounds with grace
A reflection of His face
On July 24, 2010, we celebrated eleven years of marriage. We have shared tears of joy and those of sorrow. We have fought and we have kissed. Most importantly, we have built a house upon a rock....the rock of Christ. He is the center of our marriage.
Marriage is not easy and I often think of ours as a series of books. The number of books in the series is dependent on how hard we are willing to work at it. Some volumes will be full of love and excitement while others will be full of trials and tribulations. At the end they read something like, "....too be continued" rather than "....happily ever after." That is not a bad thing, it just means we are living in reality.
The book entitled "Dylan" was an essential volume in our series. Shortly after his birth, the same person who told me "Remember to remember" also told me that Dylan would "make or break" our marriage. I thought that was a horrific thing to tell a mother at the time, but as the years have passed, the truth has revealed itself. Marriage is hard. It takes effort - daily - to ensure its existence. Some days are easier than others. Add a special-needs child into the mix and everything magnifies itself.
We are not perfect, but we have kept faith in our heavenly father, the base of our marriage. When we do begin to trip and fall and wonder what's going on, we realize we were not turning to Him first. We have faced strong winds and even some hurricanes, but our home is weathering the storm. There are some loose nails and the paint needs to be touched up now and then, but we make repairs when we see these things happening. We get on our knees and pray. We open the word ask Him to show us what to do and how to do it. Some things are done quickly with just a few quick swings of a hammer, other things need to be stripped, sanded down and refinished.
Our house enjoys the summer breeze but we also know that more winds will come - and go. During breezy times we store up on supplies so that we can face the storms that await us. We enjoy still, blue skies and when we see the clouds forming, we know our house is built upon a rock. If we're keeping our foundation up to date, our house will stand the test of time.
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