Monday, November 29, 2010

Special Education

We made the decision to bring Sweet G home after I observed a day in the life of G in a public school setting. He was so drastically different there than he is at home. He sat slumped in his chair, detatched and unengaged to the world around him. I don't want it to seem like it was all bad because it wasn't. He was loved by everyone in that school and he loved them in return. However, children aren't sent to school to be loved, they are sent to get an education. Was G getting an education? Yes. Was he getting everything he needed to succeed? No. In a public school setting he is only one of hundreds. His needs are unlike the needs of any child that has ever stepped into the doors of that school.

Schools are designed for the masses. If everything about your child is typical then public school is a great place for them to be. The problem is that a large percentage of students are not "typical". Educators do the best they can with what they are given. The problem is that we as Americans don't put a high enough value on our children's education. Schools were already underfunded when the recession hit and sent shock waves through the educational system of our country. Teachers were cut, class size was increased, legislatures met and raised class size even more, programs were cut, schools were closed, and some systems cut the school year by 20 days. That is four weeks of school!! They are supposedly making up that time by lengthening the school day. Really? Do you think that extra 15-30 minutes a day for year will be as effective as 20--7 hour days? If you do I have some swamp land I'd like to sell you. Kids can only take in so much in one day. When it gets close to the end of the day they start to shut down. I know because I spent the last two years in elementary schools watching it happen.

Add learning disabilities to the problems I mentioned and you will see what an impossible situation our schools are in. In my opinion, special educators are not given enough training to be effective. All you have to do to teach special ed is have a degree in education and take a test over special education. I know several people personally who took the Special Ed GACE and all of them passed it easily. In our entire bachelor's program we were only required to take ONE special education class. One. We didn't meet every week and covered every major disability.

Let's put this into perspective. Say you buy an airplane and it begins to sputter and jerk everytime you start down the runway. It just won't make it off the ground. You have a friend who is a mechanic, a pretty good one. He reads (or halfway reads) a book about airplanes. He listens to someone describe airplanes once a week for about 8-10 weeks. The book tells him how to identify all kinds of airplanes by their special characteristics. The book does NOT tell him anything about how to fix an airplane. He takes a test on airplane identification and passes it with flying colors. Do you let him work on your plane? Remember, he is an automobile mechanic. Both machines have engines. They both have wheels, seats, steering wheels, seat belts, windshields, and radios. Would you trust him? Do you feel he would be qualified to diagnose and repair the engine? I don't know about you but I just wouldn't trust his skills. Lives are at stake. The risk is too high for mistakes to be made.

That is why we brought Sweet G home. The risks were too great that he would fall through the cracks. We will soon see a Neuropsychologist in Atlanta who will perform tests to find out what is going on from the time information enters Sweet G's eyes travels through his brain and back out his mouth. There is a light at the end of the tunnel. It is getting brighter everyday. I am already seeing huge improvements in his reading. He spelled several three letter words last week when I called them out to him which is huge!! We are making progress slowly but surely and we are having fun together while doing it. I love me some homeschooling!!
I guess it finally got dark enough because in the words of Ralph Waldo Emerson "When it is dark enough, you can see the stars." And tonight my sky is full of them.

Special Education

We made the decision to bring Sweet G home after I observed a day in the life of G in a public school setting. He was so drastically different there than he is at home. He sat slumped in his chair, detatched and unengaged to the world around him. I don't want it to seem like it was all bad because it wasn't. He was loved by everyone in that school and he loved them in return. However, children aren't sent to school to be loved, they are sent to get an education. Was G getting an education? Yes. Was he getting everything he needed to succeed? No. In a public school setting he is only one of hundreds. His needs are unlike the needs of any child that has ever stepped into the doors of that school.

Schools are designed for the masses. If everything about your child is typical then public school is a great place for them to be. The problem is that a large percentage of students are not "typical". Educators do the best they can with what they are given. The problem is that we as Americans don't put a high enough value on our children's education. Schools were already underfunded when the recession hit and sent shock waves through the educational system of our country. Teachers were cut, class size was increased, legislatures met and raised class size even more, programs were cut, schools were closed, and some systems cut the school year by 20 days. That is four weeks of school!! They are supposedly making up that time by lengthening the school day. Really? Do you think that extra 15-30 minutes a day for year will be as effective as 20--7 hour days? If you do I have some swamp land I'd like to sell you. Kids can only take in so much in one day. When it gets close to the end of the day they start to shut down. I know because I spent the last two years in elementary schools watching it happen.

Add learning disabilities to the problems I mentioned and you will see what an impossible situation our schools are in. In my opinion, special educators are not given enough training to be effective. All you have to do to teach special ed is have a degree in education and take a test over special education. I know several people personally who took the Special Ed GACE and all of them passed it easily. In our entire bachelor's program we were only required to take ONE special education class. One. We didn't meet every week and covered every major disability.

Let's put this into perspective. Say you buy an airplane and it begins to sputter and jerk everytime you start down the runway. It just won't make it off the ground. You have a friend who is a mechanic, a pretty good one. He reads (or halfway reads) a book about airplanes. He listens to someone describe airplanes once a week for about 8-10 weeks. The book tells him how to identify all kinds of airplanes by their special characteristics. The book does NOT tell him anything about how to fix an airplane. He takes a test on airplane identification and passes it with flying colors. Do you let him work on your plane? Remember, he is an automobile mechanic. Both machines have engines. They both have wheels, seats, steering wheels, seat belts, windshields, and radios. Would you trust him? Do you feel he would be qualified to diagnose and repair the engine? I don't know about you but I just wouldn't trust his skills. Lives are at stake. The risk is too high for mistakes to be made.

That is why we brought Sweet G home. The risks were too great that he would fall through the cracks. We will soon see a Neuropsychologist in Atlanta who will perform tests to find out what is going on from the time information enters Sweet G's eyes travels through his brain and back out his mouth. There is a light at the end of the tunnel. It is getting brighter everyday. I am already seeing huge improvements in his reading. He spelled several three letter words last week when I called them out to him which is huge!! We are making progress slowly but surely and we are having fun together while doing it. I love me some homeschooling!!
I guess it finally got dark enough because in the words of Ralph Waldo Emerson "When it is dark enough, you can see the stars." And tonight my sky is full of them.

Sunday, November 21, 2010

Spiraling

This past week brought experiences into my life that I could never imagined I would ever have to face; an unspeakable allegation against someone I love dearly, the quick and subtle attack of another loved one who disagreed with something I said in love, and the deafening silence that comes when something taboo bursts into your life unannounced.
I have felt stunned, confused, brokenhearted, angry, ashamed, hurt, betrayed, forgotten and alone. There is an overwhelming desire building in me to begin running until the pain goes away, but there is no place I can go that the pain does not follow me. It is always there lurking in the shadows of the shame that surrounds me waiting for a chance to wrap its chilly fingers around my heart; squeezing until all life has been crushed in it's icy grip.

Of all things Thanksgiving is this week. This time of year has been the hard for me for the last 18 years and honestly I don't feel very thankful at this very moment. Yes, I know I do have lots of things to be thankful for but right now it is hard to see through the thickness of the fog engulfing me. The situation has me on a terrifying emotional roller coaster. It is as if life is moving by at lightning speed yet slowly creeping along at the same time. I have lost all sense of time and space. I feel that I am spiraling out of control and fear the crash that will put a stop to my dissent.

The good thing is that I am moving through emotions quickly and I am bound to move on to a less painful one as soon as I can begin to dig my way out of this pit of depression holding me captive.

Spiraling

This past week brought experiences into my life that I could never imagined I would ever have to face; an unspeakable allegation against someone I love dearly, the quick and subtle attack of another loved one who disagreed with something I said in love, and the deafening silence that comes when something taboo bursts into your life unannounced.
I have felt stunned, confused, brokenhearted, angry, ashamed, hurt, betrayed, forgotten and alone. There is an overwhelming desire building in me to begin running until the pain goes away, but there is no place I can go that the pain does not follow me. It is always there lurking in the shadows of the shame that surrounds me waiting for a chance to wrap its chilly fingers around my heart; squeezing until all life has been crushed in it's icy grip.

Of all things Thanksgiving is this week. This time of year has been the hard for me for the last 18 years and honestly I don't feel very thankful at this very moment. Yes, I know I do have lots of things to be thankful for but right now it is hard to see through the thickness of the fog engulfing me. The situation has me on a terrifying emotional roller coaster. It is as if life is moving by at lightning speed yet slowly creeping along at the same time. I have lost all sense of time and space. I feel that I am spiraling out of control and fear the crash that will put a stop to my dissent.

The good thing is that I am moving through emotions quickly and I am bound to move on to a less painful one as soon as I can begin to dig my way out of this pit of depression holding me captive.

Thursday, November 18, 2010

The Tapestry

I see a beautiful tapestry lovingly crafted stitch by stitch. Along the way as the artist is creating the piece things happen that damage the beautiful needlework. The first stain comes when it is laid carelessly onto a table with a splash of soda. A second when someone picks it up with soiled hands. The third time it slips out of the sewing basket it rests in and onto the floor where it lies unseen until someone steps on it. Many little accidents happen to this tapestry during the extended time that it takes the creator to complete the work. When the tapestry is finally finished and the last stitch is tied off the creator lovingly picks up the tapestry and washes away the evidence of all those things that lessened it's beauty.

The tapestry is used. Years pass and it begins to fade. There are places where the stitching has been worn away by hands that couldn't resist touching its magnificent surface. The edges have frayed in several areas due to circumstances that have torn away at it's beauty.

Finally the tapestry is folded, tucked away in a box and stored in the attic. Time passes as the tapestry lays forgotten until someone decides to clean the attic. The box is discovered. As the box is opened the beauty of the tapestry is revealed. Dust covers it's surface. Time and heat from the attic have faded it's once brilliant colors. The person who found it is immediately taken with its beauty and they quickly take it to be repaired. When the restorer looks at the piece He says, "This is a masterpiece. To repair it would take away from it's value. Changing just one stitch or tear would totally deminish it's worth. The value of a piece like this is in it's age and with the passing of time things are going to happen that change it from it's original state. Those things don't mean that the tapestry isn't beautiful. For if you look at the whole tapestry instead of looking so closely at the few flaws you will appreciate the precision work of the creator and the intricacy of the entire piece. No, it is not what it was at the beginning. It has been loved and touched by many and that gives it all the more valule."

Life is like that tapestry. It is woven over time. We have many experiences and are touched by countless people along the way. We are loved and give love in return. Things happen throughout our lives that tear away at our edges and at times we fear that we are damaged beyond repair. When we focus on one event over all the others we begin to loose hope and feel that all is lost. We have to step back and look at the big picture, the entire journey. It is imperative that we trust that our Creator knows what He is doing.  Only when we humble ourselves and lay at His feet can He begin to work. If we do, He will pick us up, clean away the sin, hold us lovingly in His hands and resume the work of completing His masterpiece.

The Tapestry

I see a beautiful tapestry lovingly crafted stitch by stitch. Along the way as the artist is creating the piece things happen that damage the beautiful needlework. The first stain comes when it is laid carelessly onto a table with a splash of soda. A second when someone picks it up with soiled hands. The third time it slips out of the sewing basket it rests in and onto the floor where it lies unseen until someone steps on it. Many little accidents happen to this tapestry during the extended time that it takes the creator to complete the work. When the tapestry is finally finished and the last stitch is tied off the creator lovingly picks up the tapestry and washes away the evidence of all those things that lessened it's beauty.

The tapestry is used. Years pass and it begins to fade. There are places where the stitching has been worn away by hands that couldn't resist touching its magnificent surface. The edges have frayed in several areas due to circumstances that have torn away at it's beauty.

Finally the tapestry is folded, tucked away in a box and stored in the attic. Time passes as the tapestry lays forgotten until someone decides to clean the attic. The box is discovered. As the box is opened the beauty of the tapestry is revealed. Dust covers it's surface. Time and heat from the attic have faded it's once brilliant colors. The person who found it is immediately taken with its beauty and they quickly take it to be repaired. When the restorer looks at the piece He says, "This is a masterpiece. To repair it would take away from it's value. Changing just one stitch or tear would totally deminish it's worth. The value of a piece like this is in it's age and with the passing of time things are going to happen that change it from it's original state. Those things don't mean that the tapestry isn't beautiful. For if you look at the whole tapestry instead of looking so closely at the few flaws you will appreciate the precision work of the creator and the intricacy of the entire piece. No, it is not what it was at the beginning. It has been loved and touched by many and that gives it all the more valule."

Life is like that tapestry. It is woven over time. We have many experiences and are touched by countless people along the way. We are loved and give love in return. Things happen throughout our lives that tear away at our edges and at times we fear that we are damaged beyond repair. When we focus on one event over all the others we begin to loose hope and feel that all is lost. We have to step back and look at the big picture, the entire journey. It is imperative that we trust that our Creator knows what He is doing.  Only when we humble ourselves and lay at His feet can He begin to work. If we do, He will pick us up, clean away the sin, hold us lovingly in His hands and resume the work of completing His masterpiece.

Tuesday, November 9, 2010

Hello World

It astounds me how easily it is for people to get sidetracked and forget what living is really all about. I am no different than the next person and over and over again I find that I have somehow lost the true meaning of life. Then something comes along to open my eyes and help me refocus on the most important things in life. Today I found myself in that place and the following video "Hello, World" by Lady Antebellum was what it took to change my perspective. (Before starting the video scroll to the bottom of this page and pause the music player.)

http://www.youtube.com/v/5HXw3EIQoZk?fs=1&hl=en_US

In the long term it doesn't matter how well our phonics lesson went on one specific day, if we completed all I had planned for math, or if my house ever gets completely organized, clutter free, and spotless clean. The thing I need to focus on is living a life focused on God, loving others, and being aware of how God wants to use me. I am a Child of God, a wife, a mother, a daughter, a sister, an aunt and a friend. God placed me exactly where He wanted to use me. He sent me the exact spouse that I needed and the two children that he wanted me to mother. He knew the struggles we would face and empowers me to meet each challenge that comes my way.
So, even though I didn't feel well today and failed to accomplish the things that I felt were important I did spend quality time with my little boy, tell my husband that I love him dearly, and regain the perspective on life that I believe God desires me to have. So, hello world.

Hello World

It astounds me how easily it is for people to get sidetracked and forget what living is really all about. I am no different than the next person and over and over again I find that I have somehow lost the true meaning of life. Then something comes along to open my eyes and help me refocus on the most important things in life. Today I found myself in that place and the following video "Hello, World" by Lady Antebellum was what it took to change my perspective. (Before starting the video scroll to the bottom of this page and pause the music player.)



In the long term it doesn't matter how well our phonics lesson went on one specific day, if we completed all I had planned for math, or if my house ever gets completely organized, clutter free, and spotless clean. The thing I need to focus on is living a life focused on God, loving others, and being aware of how God wants to use me. I am a Child of God, a wife, a mother, a daughter, a sister, an aunt and a friend. God placed me exactly where He wanted to use me. He sent me the exact spouse that I needed and the two children that he wanted me to mother. He knew the struggles we would face and empowers me to meet each challenge that comes my way.
So, even though I didn't feel well today and failed to accomplish the things that I felt were important I did spend quality time with my little boy, tell my husband that I love him dearly, and regain the perspective on life that I believe God desires me to have. So, hello world.

Blooming

Just when I think Sweet G's personality has completely blossomed he takes on a whole new level of energy, imagination, and spunkiness that proves me wrong. I can't express how much he has changed in the last year; it is truly amazing.

When he first started to school at 3 years old I would try to get him to tell me about his day while we were driving home. Most of the time he could not tell me anything or at least anything that made sense to me. He didn't have the verbal skills necessary to tell me about his day. This was a big concern for me because T came into this world communicating. Really, T did talk early and was speaking in full sentences by 15 months old. By 18 months old he could hold his own in a debate. Seriously. There was such a huge difference and it worried me and made me feel so isolated from G's world.

Everything has come slow for our Sweet G. He didn't take his first steps until he was 2 years old and then it was with a walker. He has yet to take an independent step or even stand independently. I think he could stand unassisted if he weren't such a scaredy cat. However, he is brave in so many other ways. He endures the endless stretching, being strapped into a stander, sitting happily on the sidelines watching others play sports when he would love to be out there playing. He is a fighter and a lover.

Lately he has taken to calling me Karen. No, my name isn't Karen. He doesn't know anyone named Karen. Except for the robotic wife of Plankton on the cartoon SpongeBob Squarepants. He sings songs to me calling me his wife, Karen. He begs me to talk to him in my "computer" voice and giggles uncontrollably when I accommodate his wishes. He pleads for me to sleep with him every night recently because "I haven't been getting enough loving, Momma." Yeah, we all know that one is true. That's the problem, he is adored.

Recently we were sitting in the parking lot of one of the home improvement stores in town. We had bought him a Dr. Pepper at Wal-Mart to bribe him into sitting quietly in the car with me while J could run into the store. It isn't that he wanted to go in the store. He didn't want to even be in the parking lot. But the Dr. Pepper did the trick and he was sitting sipping his wonderfully delicious Dr. Pepper while I made a phone call to my sister. In the middle of my conversation with her I hear his little voice say, "Uh, oh it's splashing, it's splashing." That is not what you want to hear from your child who has just started drinking a 20 ounce soft drink. I turned to see him sitting in his seat, eyes wide open in panic, trying to get a hold on the now upside down Dr. Pepper. I figure at this point there is no reason to get excited or in a hurry. So, I hang up the phone and get some paper towels that are kept in the car and get out to walk around the car to his door.

As I walk around the back of our van I notice a river of golden brown liquid flowing through the parking lot. I follow it back to its source and am mortified that it is coming from our van. "It can't be," I said to myself. However when I opened the door to the van I only find a small trace of the sticky liquid has actually landed inside the car. Somehow, miraculously the drink had been aimed at the exact angle necessary to shoot it directly into the crack at the bottom of the door. There were only a few drips and splashes as evidence of the mishap. I was amazed. J however, wasn't as understanding or astonished as I was. He is concerned with the liquid that ran down into the track of the door. It will be quite interesting to figure out how to remove it. Maybe I should just give Sweet G a 20 ounce bottle of water and see what happens. Who knows maybe the mess will take care of itself.

Blooming

Just when I think Sweet G's personality has completely blossomed he takes on a whole new level of energy, imagination, and spunkiness that proves me wrong. I can't express how much he has changed in the last year; it is truly amazing.

When he first started to school at 3 years old I would try to get him to tell me about his day while we were driving home. Most of the time he could not tell me anything or at least anything that made sense to me. He didn't have the verbal skills necessary to tell me about his day. This was a big concern for me because T came into this world communicating. Really, T did talk early and was speaking in full sentences by 15 months old. By 18 months old he could hold his own in a debate. Seriously. There was such a huge difference and it worried me and made me feel so isolated from G's world.

Everything has come slow for our Sweet G. He didn't take his first steps until he was 2 years old and then it was with a walker. He has yet to take an independent step or even stand independently. I think he could stand unassisted if he weren't such a scaredy cat. However, he is brave in so many other ways. He endures the endless stretching, being strapped into a stander, sitting happily on the sidelines watching others play sports when he would love to be out there playing. He is a fighter and a lover.

Lately he has taken to calling me Karen. No, my name isn't Karen. He doesn't know anyone named Karen. Except for the robotic wife of Plankton on the cartoon SpongeBob Squarepants. He sings songs to me calling me his wife, Karen. He begs me to talk to him in my "computer" voice and giggles uncontrollably when I accommodate his wishes. He pleads for me to sleep with him every night recently because "I haven't been getting enough loving, Momma." Yeah, we all know that one is true. That's the problem, he is adored.

Recently we were sitting in the parking lot of one of the home improvement stores in town. We had bought him a Dr. Pepper at Wal-Mart to bribe him into sitting quietly in the car with me while J could run into the store. It isn't that he wanted to go in the store. He didn't want to even be in the parking lot. But the Dr. Pepper did the trick and he was sitting sipping his wonderfully delicious Dr. Pepper while I made a phone call to my sister. In the middle of my conversation with her I hear his little voice say, "Uh, oh it's splashing, it's splashing." That is not what you want to hear from your child who has just started drinking a 20 ounce soft drink. I turned to see him sitting in his seat, eyes wide open in panic, trying to get a hold on the now upside down Dr. Pepper. I figure at this point there is no reason to get excited or in a hurry. So, I hang up the phone and get some paper towels that are kept in the car and get out to walk around the car to his door.

As I walk around the back of our van I notice a river of golden brown liquid flowing through the parking lot. I follow it back to its source and am mortified that it is coming from our van. "It can't be," I said to myself. However when I opened the door to the van I only find a small trace of the sticky liquid has actually landed inside the car. Somehow, miraculously the drink had been aimed at the exact angle necessary to shoot it directly into the crack at the bottom of the door. There were only a few drips and splashes as evidence of the mishap. I was amazed. J however, wasn't as understanding or astonished as I was. He is concerned with the liquid that ran down into the track of the door. It will be quite interesting to figure out how to remove it. Maybe I should just give Sweet G a 20 ounce bottle of water and see what happens. Who knows maybe the mess will take care of itself.

Monday, November 8, 2010

Surgery's Dark Valley

Since getting Sweet G's diagnosis of Cerebral Palsy 6 + years ago we have been aware that he would most likely someday face surgery. When children have big growth spurts at around 2, 4, 6 years old they are at risk for developing contractures (fancy word for bones grow faster than muscle and tendons) causing them to loose range of motion in their joints.Last week we made a trip to the neurologist thinking we would schedule Botox injections. But the doctor feels that it may be time for orthopedic surgery. We still have to go see the Orthopedic Surgeon to see what he thinks but I find myself becoming fearful. We have tried to keep Sweet G stretched regularly but after our last doctor's visit I can't help feeling that I didn't do enough; didn't give it my all.
I stopped by during G's physical therapy last week to see what his therapist thinks about his treatment and she agreed that it may be time for surgery. When I asked her how bad it is going to be she said, "It won't be easy, but we will get through it." Code words for it is going to be 3-6 weeks of living hell.

I absolutely love G's doctors and especially his therapists that have treated him over the years. His therapists have been friends, encouragers, confidants, shoulders to cry on, cheerleaders, and our only guidance in dark and scary times. They seem to know just what to say and how to say it so that I can accept whatever it is we are about to face. God has blessed us with the best of the best and I am so thankful for each of them.

On the same day I talked to his PT I also talked to his Speech Therapist about this strange new speech issue that G is having. I was not sure if it was a phase he was going through which he thought was cute or if it was something we should be concerned with. When I asked her she said that she had noticed it and had talked to his other therapist who all were concerned. She also talked to G about what is happening and feels that he is not aware of what he is doing so it isn't intentional. Yet another hurdle for us to face.

I know that God is in control. He allowed G to have the condition that he has to the exact extent that he is affected by it. He could have much more involvement or much less involvement. Either way I think it would somehow be easier. But God put him right smack in the middle. G has so much possible potential yet so many limitations. He is affected in all parts of his body, his legs being the most affected. He can eat but is at risk of choking. He has use of his hands but does not have the fine motor skills necessary for writing. He can walk but it will probably never be a functional means of mobility for him in most situations. His speech is affected and scores only slightly below normal on a good day.

Middle of the road. It is a good place to be but it is also a very hard place to be. It reminds me of the Christian walk. God wants us to walk on the narrow path He has placed us on. Sounds easy enough but we have weak flesh that draws us to the edge of the path giving us the desire to take another way. It would be easier to live without temptation and walk unaffected by the struggles of life, or even to be completely disobedient and go in the direction we want doing what feels good at the time. But as Christians we must walk down the middle of the road. God will not remove our temptations and I personally am not willing to just walk away. So, as hard as it is we walk down the middle of the road, keeping our eyes on Jesus knowing that He is in control. When things are scary like they are now I can't take my eyes off my Jesus for fear I will fall.  I just keep walking and trust that He who holds the world in His hands is able to lead us through this journey called Cerebral Palsy.

G's favorite song right now is "We Will Remember". Our choir sang it for him today after he requested it from the soloist, the pastor, and finally the music minister. I love the whole song but here is a short exerpt that fits where I am in my walk tonight.
When we walk through life's darkest valleys

We will look back at all You have done

And we will shout our God is good

And He is the faithful one
Thank you Lord for walking with us through the valleys of life.

Surgery's Dark Valley

Since getting Sweet G's diagnosis of Cerebral Palsy 6 + years ago we have been aware that he would most likely someday face surgery. When children have big growth spurts at around 2, 4, 6 years old they are at risk for developing contractures (fancy word for bones grow faster than muscle and tendons) causing them to loose range of motion in their joints.Last week we made a trip to the neurologist thinking we would schedule Botox injections. But the doctor feels that it may be time for orthopedic surgery. We still have to go see the Orthopedic Surgeon to see what he thinks but I find myself becoming fearful. We have tried to keep Sweet G stretched regularly but after our last doctor's visit I can't help feeling that I didn't do enough; didn't give it my all.
I stopped by during G's physical therapy last week to see what his therapist thinks about his treatment and she agreed that it may be time for surgery. When I asked her how bad it is going to be she said, "It won't be easy, but we will get through it." Code words for it is going to be 3-6 weeks of living hell.

I absolutely love G's doctors and especially his therapists that have treated him over the years. His therapists have been friends, encouragers, confidants, shoulders to cry on, cheerleaders, and our only guidance in dark and scary times. They seem to know just what to say and how to say it so that I can accept whatever it is we are about to face. God has blessed us with the best of the best and I am so thankful for each of them.

On the same day I talked to his PT I also talked to his Speech Therapist about this strange new speech issue that G is having. I was not sure if it was a phase he was going through which he thought was cute or if it was something we should be concerned with. When I asked her she said that she had noticed it and had talked to his other therapist who all were concerned. She also talked to G about what is happening and feels that he is not aware of what he is doing so it isn't intentional. Yet another hurdle for us to face.

I know that God is in control. He allowed G to have the condition that he has to the exact extent that he is affected by it. He could have much more involvement or much less involvement. Either way I think it would somehow be easier. But God put him right smack in the middle. G has so much possible potential yet so many limitations. He is affected in all parts of his body, his legs being the most affected. He can eat but is at risk of choking. He has use of his hands but does not have the fine motor skills necessary for writing. He can walk but it will probably never be a functional means of mobility for him in most situations. His speech is affected and scores only slightly below normal on a good day.

Middle of the road. It is a good place to be but it is also a very hard place to be. It reminds me of the Christian walk. God wants us to walk on the narrow path He has placed us on. Sounds easy enough but we have weak flesh that draws us to the edge of the path giving us the desire to take another way. It would be easier to live without temptation and walk unaffected by the struggles of life, or even to be completely disobedient and go in the direction we want doing what feels good at the time. But as Christians we must walk down the middle of the road. God will not remove our temptations and I personally am not willing to just walk away. So, as hard as it is we walk down the middle of the road, keeping our eyes on Jesus knowing that He is in control. When things are scary like they are now I can't take my eyes off my Jesus for fear I will fall.  I just keep walking and trust that He who holds the world in His hands is able to lead us through this journey called Cerebral Palsy.

G's favorite song right now is "We Will Remember". Our choir sang it for him today after he requested it from the soloist, the pastor, and finally the music minister. I love the whole song but here is a short exerpt that fits where I am in my walk tonight.
When we walk through life's darkest valleys

We will look back at all You have done

And we will shout our God is good

And He is the faithful one
Thank you Lord for walking with us through the valleys of life.

Wednesday, November 3, 2010

Yeah Baby it was a Great Halloween

Halloween has become a fun and important event at our house over the past 6 years. With Sweet G requiring his wheelchair in order to trick or treat we decided to be creative and incorporate it into his costume each year. I can't take full credit for the idea. I found a beautiful YouTube video of a young girl with Cerebral Palsy years ago. I was mesmerized by her gorgeous smile and the pure joy radiating from the faces of the people surrounding her in the video. I watched it countless times for inspiration and cried tears of fear and joy and hope every time. There were many different scenes in the video when this little girl would be inside a riding toy or what I thought them to be. While watching it one day I noticed something that I never had before. The toys were not toys at all they were Halloween costumes that covered her wheelchair. A chariot for Cinderella, the Yellow Submarine, a Volkswagen bus. I was so inspired by this family and the love they have for their child. Her name is Alex and she is now a young woman. I found this out by following her dad's YouTube page. I emailed him and asked about the Halloween costumes and he graciously found and sent me pictures of all the costumes he could. That was the start of our tradition of creating costumes for G's chair to complement the costume he is wearing.
He has been a hippy in a Volkswagen bus, a drummer with a complete drum set, the Good Humor Ice Cream Man, Frankenstein in his Haunted House, and this year he chose to be Moby in the Morning. This is the third time he has chosen what he wanted to be and I must admit it was adorable. He went through the neighborhood broadcasting the "Moby in the Morning at Night Show (his own words)." He sang as we walked along and said "Yeah Baby" at least a hundred times. It was a great Halloween. And just in case you wondered he kept his treats inside his turntable. The bag thing is always a problem so I came up with the idea of attaching a box to his desk to hold his treats. It worked like a charm. And now without further adieu I give you my little Moby in the Morning:
 
Posted by Picasa

Yeah Baby it was a Great Halloween

Halloween has become a fun and important event at our house over the past 6 years. With Sweet G requiring his wheelchair in order to trick or treat we decided to be creative and incorporate it into his costume each year. I can't take full credit for the idea. I found a beautiful YouTube video of a young girl with Cerebral Palsy years ago. I was mesmerized by her gorgeous smile and the pure joy radiating from the faces of the people surrounding her in the video. I watched it countless times for inspiration and cried tears of fear and joy and hope every time. There were many different scenes in the video when this little girl would be inside a riding toy or what I thought them to be. While watching it one day I noticed something that I never had before. The toys were not toys at all they were Halloween costumes that covered her wheelchair. A chariot for Cinderella, the Yellow Submarine, a Volkswagen bus. I was so inspired by this family and the love they have for their child. Her name is Alex and she is now a young woman. I found this out by following her dad's YouTube page. I emailed him and asked about the Halloween costumes and he graciously found and sent me pictures of all the costumes he could. That was the start of our tradition of creating costumes for G's chair to complement the costume he is wearing.
He has been a hippy in a Volkswagen bus, a drummer with a complete drum set, the Good Humor Ice Cream Man, Frankenstein in his Haunted House, and this year he chose to be Moby in the Morning. This is the third time he has chosen what he wanted to be and I must admit it was adorable. He went through the neighborhood broadcasting the "Moby in the Morning at Night Show (his own words)." He sang as we walked along and said "Yeah Baby" at least a hundred times. It was a great Halloween. And just in case you wondered he kept his treats inside his turntable. The bag thing is always a problem so I came up with the idea of attaching a box to his desk to hold his treats. It worked like a charm. And now without further adieu I give you my little Moby in the Morning:
 
Posted by Picasa