"Just keep soaking him in the presence of Jesus."
We were at a wedding and a woman from church came up to Mariana who was holding Victor. This woman began praying over Victor. She said, "I just feel the presence of Jesus so real right here." And then she told us to just keep soaking him in the presence of Jesus.
So that's what I try to do. One way I do this is to have worship music playing in the room where he is.
Victor may not have sight but we are praying that he has vision.
Thursday, February 27, 2014
Saturday, February 22, 2014
The saga continues
There is a part of Victor's story that I haven't shared much. Maybe I've hoped it would not be a reality if I ignored it. Maybe I just didn't want to see it in print or hear the words plainly spoken. It is this: The condition that has caused Victor's vision loss is also associated with a number of other medical conditions including, but not limited to, seizures, endocrine issues including stunted growth, mental retardation, and behavior issues such as aggression and over eating.
The ophthalmologist prepared us with dire warnings of all of these. Thankfully the endocrinologist has so far been less concerned. An initial exam, bloodwork, and his statement that these secondary issues are only present in 20% of the cases have helped to suppress the fear and worry. However, there are other concerns. It is apparent, and was as early as Victor's first bottle in the NICU, that he does not have a shut off valve when full. He will eat until you stop feeding him and I've had to do my own trial and error to determine how much to feed him. Further, the neonatal follow-up clinic is concerned because his head circumference is growing at a much slower rate than his height and weight.
In my humble opinion, Victor has suffered enough and I don't think any of us need anything else to deal with for a long time. But I learned a long time ago that my opinion isn't always the best one when orchestrating lives in the universe. There's a much larger picture, a battle being fought, and lives in the balance. I know I'm much better off placing this in much larger, more capable hands.
I am asking, begging, God to spare Victor from any other physical or mental hardship. I ask you to ask for the same thing.
We thank you.
2 Corinthians 4: 17-18 “For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”
The ophthalmologist prepared us with dire warnings of all of these. Thankfully the endocrinologist has so far been less concerned. An initial exam, bloodwork, and his statement that these secondary issues are only present in 20% of the cases have helped to suppress the fear and worry. However, there are other concerns. It is apparent, and was as early as Victor's first bottle in the NICU, that he does not have a shut off valve when full. He will eat until you stop feeding him and I've had to do my own trial and error to determine how much to feed him. Further, the neonatal follow-up clinic is concerned because his head circumference is growing at a much slower rate than his height and weight.
In my humble opinion, Victor has suffered enough and I don't think any of us need anything else to deal with for a long time. But I learned a long time ago that my opinion isn't always the best one when orchestrating lives in the universe. There's a much larger picture, a battle being fought, and lives in the balance. I know I'm much better off placing this in much larger, more capable hands.
I am asking, begging, God to spare Victor from any other physical or mental hardship. I ask you to ask for the same thing.
We thank you.
2 Corinthians 4: 17-18 “For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”
Wednesday, February 19, 2014
Understanding, part 3
Yesterday was the third, and final, installment in our unit on understanding blindness.
We talked about sports that would be available to a visually impaired person and how others might be modified. We learned about goalball which is a sport specifically for the visually impaired. You can see it played here.
Next, each child was assigned the name of a person who is visually impaired. Options might be Louis Braille, Fanny Crosby, Helen Keller, Morris Frank (and/or Buddy, the dog), Ray Charles, or Erik Weihenmayer. They were given an assignment to research their person and to create a poster presentation for the group. The posters were to answer the following questions:
1. Tell us something about your person's childhood, including how and when he/she went blind.
2. Tell us something about your person's adulthood.
3. What is your person known for?
4. If you could choose 5 descriptive words for your person, what would they be?
5. What does this person's life teach you?
6. If your person's life was made into a movie, what would you call it?
7. What is one quote from your person that you found interesting?
The children also included 3 pictures of their person and used a stylus to "write" their person's name in Braille.
The presentations were interesting and informative and we all learned that blindness doesn't have to stop someone from pursuing a dream.
Finally, we took some of Victor's board books and added textures, 3-D objects, and braille to make them more enjoyable for him.
We talked about sports that would be available to a visually impaired person and how others might be modified. We learned about goalball which is a sport specifically for the visually impaired. You can see it played here.
Next, each child was assigned the name of a person who is visually impaired. Options might be Louis Braille, Fanny Crosby, Helen Keller, Morris Frank (and/or Buddy, the dog), Ray Charles, or Erik Weihenmayer. They were given an assignment to research their person and to create a poster presentation for the group. The posters were to answer the following questions:
1. Tell us something about your person's childhood, including how and when he/she went blind.
2. Tell us something about your person's adulthood.
3. What is your person known for?
4. If you could choose 5 descriptive words for your person, what would they be?
5. What does this person's life teach you?
6. If your person's life was made into a movie, what would you call it?
7. What is one quote from your person that you found interesting?
The children also included 3 pictures of their person and used a stylus to "write" their person's name in Braille.
The presentations were interesting and informative and we all learned that blindness doesn't have to stop someone from pursuing a dream.
Finally, we took some of Victor's board books and added textures, 3-D objects, and braille to make them more enjoyable for him.
Wednesday, February 12, 2014
Victor goes to kindergarten
No, he's not a child prodigy.
No, we didn't risk his immune system malfunctioning by taking him into the germ incubator called kindergarten.
But Eden's book about Victor has gone where Victor can't.
Two of Eden's books were bought Sandra, Eden's director from The Sound of Music. The books flew
all the way out to California where they were welcomed by Sandra and her grandsons. Yesterday
Sandra took one if those books into her grandson's kindergarten class and read it to the children.
When she finished the book and finally revealed to the children that Victor is blind, one little girl said, "But look at the the stuff his family does with him!" Sandra told the children that we will raise him to view his blindness as a minor inconvenience in his life, admitting that this may be over their heads, but it amazed their teacher.
Thank you, Sandra. I am convinced that adults must teach children to value life, all life. It starts with learning the value of ourselves. There are so many ways to instill this in our children. This is not blindly (pun intended) praising our children for everything imaginable. This does not necessitate participation trophies for everyone. It does mean we purposefully and diligently tell children, our own and those with whom we come in contact, that they are treasured just for being them. Write it down in a special note. Speak it to them. Often. Our children need to know that they were created by the God of the universe with love and thought and purpose.
It can't stop with valuing self; we also must teach our children to value others, to see every human being as a treasured person, also created by the God of the universe with love and thought and purpose. We need to first model this to our children before we can try to teach it to them. Our words to and about others and our actions toward them, will speak louder than any lecture. We need to talk about what the world values and compare it to what God values. We need to help our children understand that we all have the need for love and attention and to feel valued. Bullies won't bully if they know they are
treasured. Kids won't make fun of another child if they truly understand that all people, big and small, are made by God for a purpose. I know it's not as simple as that but if we can start that process by taking Victor to kindergarten, I'm all for it.
You are valuable. You are treasured. You are important. Believe it? You need to. Now take that message to one other person today. And another tomorrow... And the day after that...
No, we didn't risk his immune system malfunctioning by taking him into the germ incubator called kindergarten.
But Eden's book about Victor has gone where Victor can't.
Two of Eden's books were bought Sandra, Eden's director from The Sound of Music. The books flew
all the way out to California where they were welcomed by Sandra and her grandsons. Yesterday
Sandra took one if those books into her grandson's kindergarten class and read it to the children.
When she finished the book and finally revealed to the children that Victor is blind, one little girl said, "But look at the the stuff his family does with him!" Sandra told the children that we will raise him to view his blindness as a minor inconvenience in his life, admitting that this may be over their heads, but it amazed their teacher.
Thank you, Sandra. I am convinced that adults must teach children to value life, all life. It starts with learning the value of ourselves. There are so many ways to instill this in our children. This is not blindly (pun intended) praising our children for everything imaginable. This does not necessitate participation trophies for everyone. It does mean we purposefully and diligently tell children, our own and those with whom we come in contact, that they are treasured just for being them. Write it down in a special note. Speak it to them. Often. Our children need to know that they were created by the God of the universe with love and thought and purpose.
It can't stop with valuing self; we also must teach our children to value others, to see every human being as a treasured person, also created by the God of the universe with love and thought and purpose. We need to first model this to our children before we can try to teach it to them. Our words to and about others and our actions toward them, will speak louder than any lecture. We need to talk about what the world values and compare it to what God values. We need to help our children understand that we all have the need for love and attention and to feel valued. Bullies won't bully if they know they are
treasured. Kids won't make fun of another child if they truly understand that all people, big and small, are made by God for a purpose. I know it's not as simple as that but if we can start that process by taking Victor to kindergarten, I'm all for it.
You are valuable. You are treasured. You are important. Believe it? You need to. Now take that message to one other person today. And another tomorrow... And the day after that...
Tuesday, February 11, 2014
Understanding, Part 2
Whoops, a whole week has gone by. I could lie and say that it was on purpose so that I could go right from our first lesson on blindness into the second lesson, but that would be lying. So I won't. No excuses.
Anyway, this morning we continued our journey into better understanding Victor's world. I was excited when one child sat down and said, "I'm excited to find out what we're going to do today!" We started by talking about the word VALUE and placing value on people, all people. I shared a post from one of my favorite blogs, a post where the mother of several children with special needs shares how God taught her the value of all life.
We then broke into two groups to practice using our senses to discern what's around us. Half of us tried to identify the scent on a cotton ball (soy sauce, coconut extract, almond extract, vanilla, and lemon). The other half played Memory with Victor's textured bean bags. Remember all that fabric that people gave me to make Victor's Quilt of Many Textures? His vision therapist had the great idea to use the remaining fabric to make bean bags, two of each, so that Victor can use them to play a Memory type game. That's exactly what we did. Isaac discovered that depending on the fabric, the beans inside made different sounds and he relied on that sense more than his sense of touch. He got them all correct!
Our next part of the lesson was on Braille and we started with a movie about Louis Braille and how at age 16 he invented the reading and writing system still used today, in many languages, all over the world. We were fascinated by the simplicity of the code, yet struggled with the degree of difficulty in actually reading and writing with it. Each child put the letters of their name in order (last week we outlined the letters with puffy paint), then practiced forming the letters by using tennis balls and baseballs in muffin tins and finally they wrote their names on paper using the Braille chart.
A few months ago, we studied bats together so it was great to find this video of a blind teenager who uses echolocation to successfully maneuver with the use of a cane or by holding his arms out to make his way. Amazing!
Tune in next week for Part 3 of Understanding.
Anyway, this morning we continued our journey into better understanding Victor's world. I was excited when one child sat down and said, "I'm excited to find out what we're going to do today!" We started by talking about the word VALUE and placing value on people, all people. I shared a post from one of my favorite blogs, a post where the mother of several children with special needs shares how God taught her the value of all life.
We then broke into two groups to practice using our senses to discern what's around us. Half of us tried to identify the scent on a cotton ball (soy sauce, coconut extract, almond extract, vanilla, and lemon). The other half played Memory with Victor's textured bean bags. Remember all that fabric that people gave me to make Victor's Quilt of Many Textures? His vision therapist had the great idea to use the remaining fabric to make bean bags, two of each, so that Victor can use them to play a Memory type game. That's exactly what we did. Isaac discovered that depending on the fabric, the beans inside made different sounds and he relied on that sense more than his sense of touch. He got them all correct!
Our next part of the lesson was on Braille and we started with a movie about Louis Braille and how at age 16 he invented the reading and writing system still used today, in many languages, all over the world. We were fascinated by the simplicity of the code, yet struggled with the degree of difficulty in actually reading and writing with it. Each child put the letters of their name in order (last week we outlined the letters with puffy paint), then practiced forming the letters by using tennis balls and baseballs in muffin tins and finally they wrote their names on paper using the Braille chart.
A few months ago, we studied bats together so it was great to find this video of a blind teenager who uses echolocation to successfully maneuver with the use of a cane or by holding his arms out to make his way. Amazing!
Tune in next week for Part 3 of Understanding.
Thursday, February 6, 2014
Understanding
"Feels like..."
"Oh, I know what it is."
"What is it?"
"I think it tastes better when I'm not seeing it."
"Mom, my pants are wet. I mean, the bottom part of my pants are wet."
"Mommy, I don't have my plate."
"Can you feel it?"
If you had been at our house for snack on Tuesday morning, you would have heard these comments, questions, and more. Along with another family, we are learning about several different life challenges like blindness, deafness, the physically handicapped, autistic, etc. Born from a desire to have the children experience some of life from Victor's point of view, blindness is our first stop.
This week we learned about how the eye works and some of the things that can go wrong to cause visual impairment.
We experienced eating a variety of foods while blindfolded; pouring our own cup of water, eating pudding, opening a single serve bag of chips before eating, and a pancake with syrup. It may have been the craziest combination of foods we've ever had a one sitting but the items were chosen with different tasks in mind.
I was happily surprised that each of the children agreed to participate with very little peeking. They experienced spilled water and syrup that only flavored a tiny corner of the pancake because the child couldn't figure out how to guarantee full coverage. They had sticky fingers and messes to clean up. But they all dove right in with a willingness to be uncomfortable to better understand Victor's uncomfortableness. And we talked about what dining might be like for him.
If you want to help your child understand what life will be like for Victor as he grows older, I'd love to share my lesson plans with you. You could also prepare a meal for your family to eat while blindfolded. Our vision therapist told me that sleep masks work best as blindfolds and we found them to be great for this purpose.
And then we let the kids watch a video of themselves eating while blindfolded. How fun to laugh at ourselves and to learn from some of our mistakes.
We also watched these youtube videos about blindness which you and your children might find helpful or interesting:
4 Tips You Can Learn From Blind People
Seeing Through the Lens
And then, completely of her own accord, Eden wrote this poem which shows her empathy toward those who struggle due to challenges they cannot control:
I Wish They Would See by Eden King, Age 9
I wish they would see that they're not
much different from me.
They play games
And like some of the fames.
I wish people would see that they're not
much different from me.
They play in the sun
And have fun!!!!
I wish they would see that they're not
much different from me.
They have some fun
and run run run
I wish they would see that they're not
much different from me
I am me they are them
What would the world be if they would see?
"Oh, I know what it is."
"What is it?"
"I think it tastes better when I'm not seeing it."
"Mom, my pants are wet. I mean, the bottom part of my pants are wet."
"Mommy, I don't have my plate."
"Can you feel it?"
If you had been at our house for snack on Tuesday morning, you would have heard these comments, questions, and more. Along with another family, we are learning about several different life challenges like blindness, deafness, the physically handicapped, autistic, etc. Born from a desire to have the children experience some of life from Victor's point of view, blindness is our first stop.
This week we learned about how the eye works and some of the things that can go wrong to cause visual impairment.
We experienced eating a variety of foods while blindfolded; pouring our own cup of water, eating pudding, opening a single serve bag of chips before eating, and a pancake with syrup. It may have been the craziest combination of foods we've ever had a one sitting but the items were chosen with different tasks in mind.
I was happily surprised that each of the children agreed to participate with very little peeking. They experienced spilled water and syrup that only flavored a tiny corner of the pancake because the child couldn't figure out how to guarantee full coverage. They had sticky fingers and messes to clean up. But they all dove right in with a willingness to be uncomfortable to better understand Victor's uncomfortableness. And we talked about what dining might be like for him.
If you want to help your child understand what life will be like for Victor as he grows older, I'd love to share my lesson plans with you. You could also prepare a meal for your family to eat while blindfolded. Our vision therapist told me that sleep masks work best as blindfolds and we found them to be great for this purpose.
And then we let the kids watch a video of themselves eating while blindfolded. How fun to laugh at ourselves and to learn from some of our mistakes.
We also watched these youtube videos about blindness which you and your children might find helpful or interesting:
4 Tips You Can Learn From Blind People
Seeing Through the Lens
And then, completely of her own accord, Eden wrote this poem which shows her empathy toward those who struggle due to challenges they cannot control:
I Wish They Would See by Eden King, Age 9
I wish they would see that they're not
much different from me.
They play games
And like some of the fames.
I wish people would see that they're not
much different from me.
They play in the sun
And have fun!!!!
I wish they would see that they're not
much different from me.
They have some fun
and run run run
I wish they would see that they're not
much different from me
I am me they are them
What would the world be if they would see?
Tuesday, February 4, 2014
THAT neighbor, too?
Thankfully, not everyone has a neighbor like that. You know, the cranky, rude, curmudgeon in that house right next to yours. But some of us do. And some of us have. Do you have to love that neighbor? How do you love that neighbor?
We had one of those. His name is Rob and he's still there. We are not. Rob is a rather large man with a very sweet, quiet wife. She spoke to us only if Rob wasn't around; he spoke to us only when he was threatening us as in, "Keep your *^$%^&** kids off my property," and "Don't get your *&%#@$^&* lawn mower on my side of the line." And when I say line, I mean line. Rob actually pounded two stakes into the ground to mark the corners of our property and then he strung a line between the two. It made it extremely difficult for us to make sure we mowed all of our property without taking the mower over the line (and he would know as he always made sure to stand right next to it while we mowed, towering over the poor soul pushing the mower, menacingly daring someone to go a millimeter over the line. Heaven forbid if we had ever accidentally split that line with the mower. If he happened to be home from work when the children and I were playing in the driveway or waiting for the bus at the end of it, he'd stand right there, just over his line, glowering at us. One morning we woke up to find our pet rabbit dead and bloody, never confirmed but suspiciously not-from-natural causes. On several occasions he threatened to break our kids' *$#^*#@* legs, once standing outside our front door yelling at John while I herded the kids into a separate room and closed the door. On those occasions, we called the police. In fact, the neighbor on the other side of Rob, a very tiny postal worker with a heart of gold, caring for his ailing mother, also called the police after Rob pushed him. Apparently, he got too close to the line on that side of the property.
Rob is clearly mentally ill. At least that's the only way my mind can wrap around a person such as that. We called the police when our children were so clearly threatened. But the rest of the time? That was my dream home, to be my forever home, and Rob was the only negative aspect of living there. We talked with our children about loving Rob even though we didn't like what he was doing. We reminded them often to keep their play and toys far away from the dividing line. We tried to serve him in ways that didn't put our lives in danger. If he was home, we shoveled snow just to the line. If he wasn't, we shoveled the whole sidewalk around his property. When we delivered cookies at Christmas, we left his at the door rather than wait until we knew he was home. We also prayed for Rob. We prayed that God would change his heart, that Rob would see our desire to do good. We prayed for our safety. And in full disclosure, I often prayed that Rob would get a job transfer and need to move to another city, far, far, away. Instead, God gave us the nudge that we should move our family to another job, another part of the state. But Rob is still there. When we drive our kids past the old house, we often see that infamous vehicle in the driveway, the one that brings feelings of dread all over again. I am thankful to know that there is another family still living in the neighborhood who regularly prayer walk the block and include Rob and his wife in their prayers.
So, yes, loving our neighbor in the general sense means we need to love the unlovable and our enemies, and the same applies to our actual neighbors, too.
We had one of those. His name is Rob and he's still there. We are not. Rob is a rather large man with a very sweet, quiet wife. She spoke to us only if Rob wasn't around; he spoke to us only when he was threatening us as in, "Keep your *^$%^&** kids off my property," and "Don't get your *&%#@$^&* lawn mower on my side of the line." And when I say line, I mean line. Rob actually pounded two stakes into the ground to mark the corners of our property and then he strung a line between the two. It made it extremely difficult for us to make sure we mowed all of our property without taking the mower over the line (and he would know as he always made sure to stand right next to it while we mowed, towering over the poor soul pushing the mower, menacingly daring someone to go a millimeter over the line. Heaven forbid if we had ever accidentally split that line with the mower. If he happened to be home from work when the children and I were playing in the driveway or waiting for the bus at the end of it, he'd stand right there, just over his line, glowering at us. One morning we woke up to find our pet rabbit dead and bloody, never confirmed but suspiciously not-from-natural causes. On several occasions he threatened to break our kids' *$#^*#@* legs, once standing outside our front door yelling at John while I herded the kids into a separate room and closed the door. On those occasions, we called the police. In fact, the neighbor on the other side of Rob, a very tiny postal worker with a heart of gold, caring for his ailing mother, also called the police after Rob pushed him. Apparently, he got too close to the line on that side of the property.
Rob is clearly mentally ill. At least that's the only way my mind can wrap around a person such as that. We called the police when our children were so clearly threatened. But the rest of the time? That was my dream home, to be my forever home, and Rob was the only negative aspect of living there. We talked with our children about loving Rob even though we didn't like what he was doing. We reminded them often to keep their play and toys far away from the dividing line. We tried to serve him in ways that didn't put our lives in danger. If he was home, we shoveled snow just to the line. If he wasn't, we shoveled the whole sidewalk around his property. When we delivered cookies at Christmas, we left his at the door rather than wait until we knew he was home. We also prayed for Rob. We prayed that God would change his heart, that Rob would see our desire to do good. We prayed for our safety. And in full disclosure, I often prayed that Rob would get a job transfer and need to move to another city, far, far, away. Instead, God gave us the nudge that we should move our family to another job, another part of the state. But Rob is still there. When we drive our kids past the old house, we often see that infamous vehicle in the driveway, the one that brings feelings of dread all over again. I am thankful to know that there is another family still living in the neighborhood who regularly prayer walk the block and include Rob and his wife in their prayers.
So, yes, loving our neighbor in the general sense means we need to love the unlovable and our enemies, and the same applies to our actual neighbors, too.
Monday, February 3, 2014
Love your neighbor
One of the basic foundations of the Christian faith is, "Love your neighbor." We teach our children to follow these words and are very careful to model this mandate as well. We spend a lot of time showing them that this doesn't mean neighbor neighbor, but giving them a broad definition of neighbor as anyone with whom you come in contact.
Somewhere along the way we forgot that neighbor can still mean neighbor. We got so busy telling ourselves that neighbor means the homeless in the closest city, and the immigrants without family, and even the starving children a continent away that we forgot the people who live next to, across from, and two doors over. Our neighbors.
When we moved here 10 years ago, we didn't plan to stay. The move was so fast that in buying a home we were just looking for a suitable available building; we didn't have time to research neighborhoods, schools, and communities. We just picked the best of the options given to us, packed up, and moved. But it didn't take long to realize that God had placed us right where He wanted us. And moving again seemed so daunting and labor intensive that we haven't visited that thought in years.
That doesn't mean that we wouldn't love more land (chickens? yes!) or more kitchen counter space (it's better not to look around so as to avoid coveting) or more square footage (more bedrooms, anyone?) but we have replaced desire with love for our neighbors. Maybe someday God will call us to move but for now, we're here for a reason.
Recently I invited several friends who love their neighbors well to come into my parenting class to talk about how they put this love into action. As one of them so aptly reminded us, "These are your people," and that's how I want to remember my neighbors. Yes, these are my people, this is where God planted us, so we will serve those planted around us.
Get your shovels, kids, we've got some work to do!
Somewhere along the way we forgot that neighbor can still mean neighbor. We got so busy telling ourselves that neighbor means the homeless in the closest city, and the immigrants without family, and even the starving children a continent away that we forgot the people who live next to, across from, and two doors over. Our neighbors.
When we moved here 10 years ago, we didn't plan to stay. The move was so fast that in buying a home we were just looking for a suitable available building; we didn't have time to research neighborhoods, schools, and communities. We just picked the best of the options given to us, packed up, and moved. But it didn't take long to realize that God had placed us right where He wanted us. And moving again seemed so daunting and labor intensive that we haven't visited that thought in years.
That doesn't mean that we wouldn't love more land (chickens? yes!) or more kitchen counter space (it's better not to look around so as to avoid coveting) or more square footage (more bedrooms, anyone?) but we have replaced desire with love for our neighbors. Maybe someday God will call us to move but for now, we're here for a reason.
Recently I invited several friends who love their neighbors well to come into my parenting class to talk about how they put this love into action. As one of them so aptly reminded us, "These are your people," and that's how I want to remember my neighbors. Yes, these are my people, this is where God planted us, so we will serve those planted around us.
Get your shovels, kids, we've got some work to do!
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