He walked in the room with book in hand. "Mom, I think we should all read chapters 6 and 7 and then we should talk about what it means for Victor." He placed the book on the table in front of me.
I smiled. "Do you know this is the same book I was reading with the younger kids when Eden decided to pray her specific prayer?" He didn't.
So we all took our turns reading the selected portions of The 40 Day Prayer Challenge by Mark Batterson. For some of us, it was a second reading but a good review. The theme of these two chapters is tangible faith. If you are praying for something, do something to signify your faith.
And then we came together to talk about it. If we believe that we are to pray for Victor's sight (and we do), then what are we going to do to represent our faith? We decided to buy him a Bible, not a Braille Bible, but a written version, believing that some day he will read it. Several of us in our immediate family and a dear friend as well, keep hearing the number "16" and Eden, in true faith, has suggested a date, June 1 (Of 2029? Who knows?). Oh, how I'd love for Victor to have a driver's license!
There could be all kinds of theological discussion about whether or not we should ask for Victor's sight. We believe we should. We believe that our loving Heavenly Father desires to give good gifts to His children. We know that He longs for each one of us to be healed and whole. We also believe that good can come out of any circumstance and that often it is in our weakness that He is most glorified. How do we reconcile the two, seemingly opposing beliefs? We don't need to. That's not our job. We know that Victor will be healed. Period. Whether that happens here on earth or in Heaven is not for us to decide or worry about. We ask, we believe in God's goodness no matter the answer to our request, and we watch God get the glory in everything.
Please don't get me wrong, this is not to say that we don't have days, even moments, of grief over Victor's blindness. This is a club I did not ask to join. But I could plan out every single moment of every single day and still God's ways are not my ways. My full trust is in His ways. Some people have placed their faith only in that which they can explain. How sad because there's so much that cannot be explained or rationalized. And what do you do when that which you've rationalized and planned, falls apart on itself? Putting my faith in a loving God who wants the best for me, One who has the whole universe in His hands, sounds far more comforting to me.
God is good. All the time. All the time. God is good. Amen.
Tuesday, January 28, 2014
Monday, January 27, 2014
Vote for Victor
Another shameless plug. Because it's my blog and I can do that.
Vote for Victor in the WonderBaby FB Cover Photo Contest!
Because he's so cute and we love him so much. Vote today and again tomorrow. Share this link with your friends.
WonderBaby is a website devoted to education for the families of visually impaired children. We have learned so much from them already.
And if you promise to vote you can read this update on our little man.
Victor is happy, happy, happy. He loves all of life...
...except Cheerios.
...and his hat.
...and peas (but I'm not such a fan myself).
Vote for Victor in the WonderBaby FB Cover Photo Contest!
Because he's so cute and we love him so much. Vote today and again tomorrow. Share this link with your friends.
WonderBaby is a website devoted to education for the families of visually impaired children. We have learned so much from them already.
And if you promise to vote you can read this update on our little man.
Victor is happy, happy, happy. He loves all of life...
...except Cheerios.
...and his hat.
...and peas (but I'm not such a fan myself).
Saturday, January 25, 2014
Disappointment
"Pleeeeeasseee, can I have one of those loom things to make bracelets?"
"But, Mom, it's the role I always dreamed of. I don't know why I didn't get it."
"She keeps pushing me away and it hurts."
"The lies she has told are spreading."
"There are three things going on that weekend and I don't know which one to choose. No matter what I do I'm going to miss out on something."
It's hard to watch my children face disappointment. I want to take it away. There are times when I am the source of that disappointment (as in the case of those silly loom bracelet making things and my steadfast household ban, due to the amount of junk already in the house, two girls who need to learn the art of cleaning up after themselves, and the knowledge that this fad will pass just as quickly as other money making ploys in the past) and I could take that disappointment away with a simple change of mind. But I remain firm. Other situations are caused by factors outside my control. I could try to step in and manipulate and argue for my child. I hold my tongue. There are times when I can do nothing, even if I wanted to do so. Instead, I pray.
So why don't I give my children everything they want and more? Well, for one, it's not financially possible. But even if it was, I hope that I would still make the same choices. My children are going to face disappointment in life and there will be times I can't do anything to take it away. I pray that they learn this lesson now. I also want them to learn where to take their disappointments; God is ready to hear their sorrow and to redeem it. For now, the sadness comes from a friend who has wronged them but someday that may be an employer. Today, she doesn't get a role she wants (actually, she was 10 when the above scenario happened) but someday that might be not getting a first college choice or the death of a dream career. Right now a plan gone awry, thwarted by unfair circumstances might seem like the end of the world but someday it might be an unexpected diagnosis. Lessons learned in disappointment today will not only teach coping skills for the future but will also grow them into the person God wants them to be. I also want my children to experience disappointment because this is where we learn empathy and compassion for others.
But there are times my Mommy Heart aches as much (sometimes more) as my child's heart does. I find myself asking God, Why? And in those moments I need to remind myself that I don't want to teach my children entitlement and happiness. I want to teach them empathy, faith, and joy. It is in our disappointments that we grow the most. It is in reaching out to God when we don't understand, that we learn faith. It is in learning that life isn't all roses and "going my way" that we learn joy despite circumstances.
So rather than jump in and fix it for them, I will stand with them. I will listen. And as the days go by and the time is right, I will teach them what I really want them to learn. Together, we will decide if there is a course of action which should be taken. If they need to speak to someone, together we'll choose the words that need to be said and how it should be said. I will be the encourager from afar when it comes time to do that, however. Learning to question, debate, and stand up for yourself is best done by yourself, not by Mom.
Kids, this is my prayer for you. And you can find me sitting here on my hands and holding my tongue so that I don't jump in and try to fix it.
I will not jump in and try to fix it. I will not jump in and try to fix it...
"But, Mom, it's the role I always dreamed of. I don't know why I didn't get it."
"She keeps pushing me away and it hurts."
"The lies she has told are spreading."
"There are three things going on that weekend and I don't know which one to choose. No matter what I do I'm going to miss out on something."
It's hard to watch my children face disappointment. I want to take it away. There are times when I am the source of that disappointment (as in the case of those silly loom bracelet making things and my steadfast household ban, due to the amount of junk already in the house, two girls who need to learn the art of cleaning up after themselves, and the knowledge that this fad will pass just as quickly as other money making ploys in the past) and I could take that disappointment away with a simple change of mind. But I remain firm. Other situations are caused by factors outside my control. I could try to step in and manipulate and argue for my child. I hold my tongue. There are times when I can do nothing, even if I wanted to do so. Instead, I pray.
So why don't I give my children everything they want and more? Well, for one, it's not financially possible. But even if it was, I hope that I would still make the same choices. My children are going to face disappointment in life and there will be times I can't do anything to take it away. I pray that they learn this lesson now. I also want them to learn where to take their disappointments; God is ready to hear their sorrow and to redeem it. For now, the sadness comes from a friend who has wronged them but someday that may be an employer. Today, she doesn't get a role she wants (actually, she was 10 when the above scenario happened) but someday that might be not getting a first college choice or the death of a dream career. Right now a plan gone awry, thwarted by unfair circumstances might seem like the end of the world but someday it might be an unexpected diagnosis. Lessons learned in disappointment today will not only teach coping skills for the future but will also grow them into the person God wants them to be. I also want my children to experience disappointment because this is where we learn empathy and compassion for others.
But there are times my Mommy Heart aches as much (sometimes more) as my child's heart does. I find myself asking God, Why? And in those moments I need to remind myself that I don't want to teach my children entitlement and happiness. I want to teach them empathy, faith, and joy. It is in our disappointments that we grow the most. It is in reaching out to God when we don't understand, that we learn faith. It is in learning that life isn't all roses and "going my way" that we learn joy despite circumstances.
So rather than jump in and fix it for them, I will stand with them. I will listen. And as the days go by and the time is right, I will teach them what I really want them to learn. Together, we will decide if there is a course of action which should be taken. If they need to speak to someone, together we'll choose the words that need to be said and how it should be said. I will be the encourager from afar when it comes time to do that, however. Learning to question, debate, and stand up for yourself is best done by yourself, not by Mom.
Kids, this is my prayer for you. And you can find me sitting here on my hands and holding my tongue so that I don't jump in and try to fix it.
I will not jump in and try to fix it. I will not jump in and try to fix it...
Thursday, January 23, 2014
It started with a baby
Note: This is a blatant plug. And I am not ashamed.
This is Eden.
This is Eden with her new book, It Started with a Baby by Eden King (of course).
This is a page in Eden's new book about her little brother.
This is another.
This is Eden and Linus, looking to see who will be next in line for an autographed copy of Eden's new book. Actually, it was a photo fail because all Linus wanted was the apple that HopeAnne was eating in the corner while we took the picture. Let nothing go to waste, they say, not even a digital photo.
But seriously, who could resist such a wonderful paperback picture book? Just $20, autographed for free, and for every book bought, a portion is donated to the Victor Adoption Fund (you knew that was coming, didn't you?). A Valentine's gift? Thinking ahead to your Easter baskets?
In Eden's own words (from the Author's Page):
"I wrote this story so that younger and older people could know the power of prayer."
Come on, you know you want one...
This is Eden.
This is Eden with her new book, It Started with a Baby by Eden King (of course).
This is a page in Eden's new book about her little brother.
This is another.
This is Eden and Linus, looking to see who will be next in line for an autographed copy of Eden's new book. Actually, it was a photo fail because all Linus wanted was the apple that HopeAnne was eating in the corner while we took the picture. Let nothing go to waste, they say, not even a digital photo.
But seriously, who could resist such a wonderful paperback picture book? Just $20, autographed for free, and for every book bought, a portion is donated to the Victor Adoption Fund (you knew that was coming, didn't you?). A Valentine's gift? Thinking ahead to your Easter baskets?
In Eden's own words (from the Author's Page):
"I wrote this story so that younger and older people could know the power of prayer."
Come on, you know you want one...
Wednesday, January 22, 2014
Five teens now
Andrew
Jesse
Mariana
Shoun...
...and today, Isaac!
Count 'em, that's 1...2...3...4...5 teenagers in our home. I prefer 5 toddlers but I'll keep my teens. If I have to have 5 teens, I'd choose these five.
Isaac, our teddy bear. Innocent, compassionate, thoughtful, helpful, these are words that describe Isaac.
He's been a wonderful big brother to Victor; always willingly helping out multiple times during the day.
Eh, that broken arm wasn't a great part of his last months before 13, but it's behind him now.
Happy 13th to Isaac! My prayer for him is found in these words:
For this reason, ever since I heard about your faith in the Lord Jesus and your love for all the saints, I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe. Ephesians 1:15-19a
Jesse
Mariana
Shoun...
...and today, Isaac!
Count 'em, that's 1...2...3...4...5 teenagers in our home. I prefer 5 toddlers but I'll keep my teens. If I have to have 5 teens, I'd choose these five.
Isaac, our teddy bear. Innocent, compassionate, thoughtful, helpful, these are words that describe Isaac.
He's been a wonderful big brother to Victor; always willingly helping out multiple times during the day.
For this reason, ever since I heard about your faith in the Lord Jesus and your love for all the saints, I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe. Ephesians 1:15-19a
Tuesday, January 21, 2014
Trouble
The little man is all over the place now, sometimes rolling, but mostly propelling himself backwards on his back, pushing off with his feet, doing a semi-gymnastics bridge every now and then.
He can rapidly get himself in and under places. Apparently the bottom of the crib is rather tasty.
And for a moment I can forget that he is blind and can rejoice in the normalcy of a child making trouble for himself. How fun movement can be!
He can rapidly get himself in and under places. Apparently the bottom of the crib is rather tasty.
And for a moment I can forget that he is blind and can rejoice in the normalcy of a child making trouble for himself. How fun movement can be!
Sunday, January 19, 2014
Nine months
Poor Mr. Victor. He is so loved by his sisters. Maybe too much. I think he could do without their sharing of the headbands.
He definitely was not impressed with the headband turned sleep mask.
9 months old now! His corrected age is 5 1/2 months and looking at him as a visually impaired almost 6 month old, he is doing great!
He can sit for a few seconds by himself and he is finally rolling over in both directions. His favorite place to be now is the Johnny Jump-up. He not only holds his bottle himself but he can maneuver it into his mouth on his own.
He is still the happiest baby. He loves routine and has trouble sleeping when his routine gets disrupted or when he's in a new location but he remains happy regardless.
And he has remained oh-so-healthy! With several colds going around our house and tons of stuff going around the community (including whooping cough - yikes!), Victor has not even had a sniffle. When most healthy babies would have a perpetual snotty nose, our little fighter has had nothing at all! Miraculous!
He definitely was not impressed with the headband turned sleep mask.
9 months old now! His corrected age is 5 1/2 months and looking at him as a visually impaired almost 6 month old, he is doing great!
He can sit for a few seconds by himself and he is finally rolling over in both directions. His favorite place to be now is the Johnny Jump-up. He not only holds his bottle himself but he can maneuver it into his mouth on his own.
He is still the happiest baby. He loves routine and has trouble sleeping when his routine gets disrupted or when he's in a new location but he remains happy regardless.
And he has remained oh-so-healthy! With several colds going around our house and tons of stuff going around the community (including whooping cough - yikes!), Victor has not even had a sniffle. When most healthy babies would have a perpetual snotty nose, our little fighter has had nothing at all! Miraculous!
Friday, January 17, 2014
Confusion, disappointment, and hope
Confusion.
God, didn't you say he would be victorious?
It's not fair. He's gone through so much and come so far.
Disappointment.
The doctor says there's no sight and nothing he can do.
God, didn't you say he would be victorious?
It's not fair. He's gone through so much and come so far.
Disappointment.
The doctor says there's no sight and nothing he can do.
Hope.
Did he just focus on my face?
Did he squint when we moved into the sunlight?
And there's nothing wrong with each emotion we feel in the process of hearing and accepting news that we didn't expect; a journey we didn't plan to take. To get stuck in confusion or disappointment or anger, that would be wrong. To take them to God and place them in His powerful hands, that is just fine. And all the while He is looking at us with love, crying with us in our disappointment and confusion, and smiling at our faith, trust, and hope - no matter how small. We see life through our lenses, not through God's, and He knows that. He looks at us, His creation, and as always, it is good.
But at the same time we're told to ask and so we ask. And as we ask, we hope. And when we allow ourselves to hope, we might again be disappointed or confused and the cycle starts again. Each time, however, we find ourselves a bit closer to God's peace, true faith in His plans, and joy in whatever comes.
Whatever your disappointment. Whatever your confusion. Whatever makes you grieve right now, know that there is hope!
Psalm 25: 2-4, Amplified Bible
2 O my God, I trust, lean on, rely on, and am confident in You. Let me not be put to shame or [my hope in You] be disappointed; let not my enemies triumph over me.
3 Yes, let none who trust and wait hopefully and look for You be put to shame or be disappointed; let them be ashamed who forsake the right or deal treacherously without cause.
4 Show me Your ways, O Lord; teach me Your paths.
Thursday, January 16, 2014
Playing together
The family that plays together,
Stays together.
Or something like that.
This is what I say over and over as we meet-and-greet with folks after a concert. And I mean it.
There are 10 of us in one household. We come from many different backgrounds but even those who share similar genes are like night and day in their interests, passions, and gifts. We find ourselves going in many different directions, exploring the talents we've been giving and finding the direction God has planned for each of us. Playing concerts is what brings us together.
I believe this togetherness is essential for a family. It certainly doesn't mean you all need to start learning to play an instrument but what is it that defines you as a family? What is it that brings you all together to do something you enjoy on a regular basis? How can you combine an interest or gift that you share? Using it to bless others is a bonus.
-Maybe it's family game night? Friday night pizza and games, anyone?
-Serving in a soup kitchen once a month?
-Yearly mission trips together?
-Serving your neighbors together by raking in the fall, shoveling in the winter, sprucing up the yard in spring, and mowing in the summer?
-Entertaining another family's children on a regular basis? Providing a night out for a family with a special needs child, adopted children, or a single parent home?
-Making meals together? Making extra to share with those who need a pick-me-up?
And the family that plays or cooks or serves or entertains together,
Stays together.
Or something like that.
1 Corinthians 10:31
So whether you eat or drink or whatever you do, do it all for the glory of God.
-
Stays together.
Or something like that.
This is what I say over and over as we meet-and-greet with folks after a concert. And I mean it.
There are 10 of us in one household. We come from many different backgrounds but even those who share similar genes are like night and day in their interests, passions, and gifts. We find ourselves going in many different directions, exploring the talents we've been giving and finding the direction God has planned for each of us. Playing concerts is what brings us together.
I believe this togetherness is essential for a family. It certainly doesn't mean you all need to start learning to play an instrument but what is it that defines you as a family? What is it that brings you all together to do something you enjoy on a regular basis? How can you combine an interest or gift that you share? Using it to bless others is a bonus.
-Maybe it's family game night? Friday night pizza and games, anyone?
-Serving in a soup kitchen once a month?
-Yearly mission trips together?
-Serving your neighbors together by raking in the fall, shoveling in the winter, sprucing up the yard in spring, and mowing in the summer?
-Entertaining another family's children on a regular basis? Providing a night out for a family with a special needs child, adopted children, or a single parent home?
-Making meals together? Making extra to share with those who need a pick-me-up?
And the family that plays or cooks or serves or entertains together,
Stays together.
Or something like that.
1 Corinthians 10:31
So whether you eat or drink or whatever you do, do it all for the glory of God.
-
Wednesday, January 15, 2014
Dinner scene
Most of the time we are able to eat dinner together, all of us (minus the college student) around the very large dinner table. The one my parents thought I was crazy for requesting as a wedding gift but they gave us the one with "boards to seat 13" anyway. Handmade in Lancaster County by Amish men running around the shop in their bare feet. The one that caught Chuck Rhodes' eye when doing his TV special and around which he asked us to sit and "act natural" for the camera. Thanks, Mom and Dad. See, I knew what I was requesting way back then.
We have a journal on the table where we list both blessings and prayer requests. As we were making additions the other night, one child wanted to add to the prayer page, "Help me to stop lying."
As I wrote that on the next line, another child said, "Me, too."
And a few seconds later a third piped up, "Yeah, me, too."
At this point I was picturing the dinner scene in The Sound of Music (the original movie, thank you) when one by one most of the children are hit with guilt and they start crying.
Jesse must have been thinking along the same lines because he was next to speak, "Is this confession time?"
The family that prays for help with lying together,
Stays together.
Or something like that.
We have a journal on the table where we list both blessings and prayer requests. As we were making additions the other night, one child wanted to add to the prayer page, "Help me to stop lying."
As I wrote that on the next line, another child said, "Me, too."
And a few seconds later a third piped up, "Yeah, me, too."
At this point I was picturing the dinner scene in The Sound of Music (the original movie, thank you) when one by one most of the children are hit with guilt and they start crying.
Jesse must have been thinking along the same lines because he was next to speak, "Is this confession time?"
The family that prays for help with lying together,
Stays together.
Or something like that.
Saturday, January 11, 2014
FAQ
There are certain questions that we are asked on a regular basis so I will answer them here for others who may be wondering the same things.
What is Victor's background or ethnicity?
On his birthmother's side he is 4th generation Mexican. She told us a lovely story about her grandmother and how she arrived in the United States. It is a story to cherish and to share with Victor when he is older.
How old is he now?
Victor will be 9 months old on Monday but since his due date was July 26, his corrected age is 5 1/2 months.
How much does he weigh?
Last week he was 16 lb. 8 oz. He's very solid and compact. He loves to eat!
What is he doing these days?
Victor is behind his peers in most developmental areas. Sometimes it's hard to know if he's behind because he was born so early or if it's because he is blind. So many early developmental stages are vision motivated. For example, when asked at the doctor's office if Victor picks his head up when he's on his stomach, we don't know if his lack of ability to do so is because he has weak neck muscles or if it's because there's no reason for him to lift his head when there's no visual motivation to do so. In PT we are working on sitting and rolling over. He rolls belly to back but not the other way around. He practices sitting on the floor with our legs around him for support, in a small laundry basket, in the Boppy pillow, in the corner where the two sofas come together, anywhere we can! He is getting much stronger and can sit for a short time by himself. Last night he did so for several minutes which is a huge praise! His favorite activity is jumping. Any time he's in a standing position, he will jump. If you're holding him, look out, it's an arm workout! He is very verbal, trying to get as much in between the rest of the family members as he can. He is also very loud, especially when he's happy.
What can he see?
We won't really know the answer to this for a long time. There are times that we think he can see light and dark but his ophthalmologist says no. So maybe we just want to see a reaction.
Victor's blindness is from all the oxygen given to him as a preemie, right?
No! Victor's blindness is not related to his prematurity at all. He has a condition called septo optic dysplasia or bilateral optic nerve hypoplasia. As the eye doctor said, we will never know why it happened but it likely would have happened even if he had been born full term. Retinopathy of prematurity is the name for vision conditions due to prematurity and the amount of oxygen given to a newborn. When we came home from the NICU we were still waiting for this condition to regress (what you want) and that is why Victor had bi weekly visits with the ophthalmologist. It was because of these exams that Victor's vision loss was identified so early. If Victor had not been tortured by these exams on a regular basis, we would not have known that his optic nerves were not as they should be. Because we found out so soon, we were able to start him with vision therapy very early.
Can his blindness be corrected?
No. Your optic nerves either work or they don't. There is nothing to be done for them.
What does he do in vision therapy?
A lot of what happens in therapy is parent instruction. The special education teacher in me loves this part. I sometimes feel guilty that I enjoy this so much. I love learning how to teach him to use what he does have, his hearing and sense of touch mostly. We also talk about the future, orientation and mobility, schooling, activities, etc. She brings various toys and objects that make noise, have a different feel, or introduce him to new smells. And we talk, talk, talk. "Victor, Mommy is coming in your room now. Here I am. Here is your hand. I'm holding your hand. This is your right hand. Now I'm going to change your clothes. I'm taking your right hand out of your shirt. Now I'm going to take your left hand out. Now over your head...." No one likes to be surprised by having things happen to them without warning!
When will he learn to sign?
When the vision therapist told me that people were going to ask this question, I didn't believe her. But she was right. People do confuse the blind with the deaf so if you were thinking this question, don't feel bad. Maybe it's because people hear the word "blind" and automatically think of Helen Keller who was both blind and deaf. She did need to learn to sign. Victor, however, is blind but not deaf. As far as we can tell, he hears just fine. And if you've been around him, you know that there is absolutely nothing wrong with his vocal chords. He should be able to speak just fine. He will have many other difficulties in life, but speaking should not be one of them.
Other questions are not so easy to answer and will take us time to know him and his strengths and weaknesses better and to seek God's will for him. Will he be musical? How will we navigate Sunday School and other group activities? Where will he go to school? What kinds of technology will he need or use?
We do know this: God has plans for Victor just like He does for you. Those plans are all for Victor's best. They will grow him into the victorious adult God promised he would be. And all the glory goes to God!
****If you or your children are looking to understand blindness better, Tommy Edison has some great videos on youtube and most of them are family friendly. Just type in his name and you'll see many interesting topics: Can blind people draw? How blind people cook food alone. Etc.
What is Victor's background or ethnicity?
On his birthmother's side he is 4th generation Mexican. She told us a lovely story about her grandmother and how she arrived in the United States. It is a story to cherish and to share with Victor when he is older.
How old is he now?
Victor will be 9 months old on Monday but since his due date was July 26, his corrected age is 5 1/2 months.
How much does he weigh?
Last week he was 16 lb. 8 oz. He's very solid and compact. He loves to eat!
What is he doing these days?
Victor is behind his peers in most developmental areas. Sometimes it's hard to know if he's behind because he was born so early or if it's because he is blind. So many early developmental stages are vision motivated. For example, when asked at the doctor's office if Victor picks his head up when he's on his stomach, we don't know if his lack of ability to do so is because he has weak neck muscles or if it's because there's no reason for him to lift his head when there's no visual motivation to do so. In PT we are working on sitting and rolling over. He rolls belly to back but not the other way around. He practices sitting on the floor with our legs around him for support, in a small laundry basket, in the Boppy pillow, in the corner where the two sofas come together, anywhere we can! He is getting much stronger and can sit for a short time by himself. Last night he did so for several minutes which is a huge praise! His favorite activity is jumping. Any time he's in a standing position, he will jump. If you're holding him, look out, it's an arm workout! He is very verbal, trying to get as much in between the rest of the family members as he can. He is also very loud, especially when he's happy.
Yes, his shirt says, "King me." :)
What can he see?
We won't really know the answer to this for a long time. There are times that we think he can see light and dark but his ophthalmologist says no. So maybe we just want to see a reaction.
Victor's blindness is from all the oxygen given to him as a preemie, right?
No! Victor's blindness is not related to his prematurity at all. He has a condition called septo optic dysplasia or bilateral optic nerve hypoplasia. As the eye doctor said, we will never know why it happened but it likely would have happened even if he had been born full term. Retinopathy of prematurity is the name for vision conditions due to prematurity and the amount of oxygen given to a newborn. When we came home from the NICU we were still waiting for this condition to regress (what you want) and that is why Victor had bi weekly visits with the ophthalmologist. It was because of these exams that Victor's vision loss was identified so early. If Victor had not been tortured by these exams on a regular basis, we would not have known that his optic nerves were not as they should be. Because we found out so soon, we were able to start him with vision therapy very early.
Can his blindness be corrected?
No. Your optic nerves either work or they don't. There is nothing to be done for them.
What does he do in vision therapy?
A lot of what happens in therapy is parent instruction. The special education teacher in me loves this part. I sometimes feel guilty that I enjoy this so much. I love learning how to teach him to use what he does have, his hearing and sense of touch mostly. We also talk about the future, orientation and mobility, schooling, activities, etc. She brings various toys and objects that make noise, have a different feel, or introduce him to new smells. And we talk, talk, talk. "Victor, Mommy is coming in your room now. Here I am. Here is your hand. I'm holding your hand. This is your right hand. Now I'm going to change your clothes. I'm taking your right hand out of your shirt. Now I'm going to take your left hand out. Now over your head...." No one likes to be surprised by having things happen to them without warning!
When will he learn to sign?
When the vision therapist told me that people were going to ask this question, I didn't believe her. But she was right. People do confuse the blind with the deaf so if you were thinking this question, don't feel bad. Maybe it's because people hear the word "blind" and automatically think of Helen Keller who was both blind and deaf. She did need to learn to sign. Victor, however, is blind but not deaf. As far as we can tell, he hears just fine. And if you've been around him, you know that there is absolutely nothing wrong with his vocal chords. He should be able to speak just fine. He will have many other difficulties in life, but speaking should not be one of them.
Other questions are not so easy to answer and will take us time to know him and his strengths and weaknesses better and to seek God's will for him. Will he be musical? How will we navigate Sunday School and other group activities? Where will he go to school? What kinds of technology will he need or use?
We do know this: God has plans for Victor just like He does for you. Those plans are all for Victor's best. They will grow him into the victorious adult God promised he would be. And all the glory goes to God!
****If you or your children are looking to understand blindness better, Tommy Edison has some great videos on youtube and most of them are family friendly. Just type in his name and you'll see many interesting topics: Can blind people draw? How blind people cook food alone. Etc.
Thursday, January 9, 2014
Blessings in all sizes
Some blessings come in a small bag full of coins, a little girl's desire to donate the contents of her piggy bank to Victor's adoption fund.
Some blessings come from a friend at the door with a thoughtful note and a check, putting a large dent in Victor's adoption expenses. A blessing from a family that understands diagnosis and the changing of dreams for your child.
Big or small and all the ones in between, I thank God for the blessings and how He remembers me, little old insignificant me. Every need is satisfied. Every blessing a miracle of love.
Some blessings come from a friend at the door with a thoughtful note and a check, putting a large dent in Victor's adoption expenses. A blessing from a family that understands diagnosis and the changing of dreams for your child.
Big or small and all the ones in between, I thank God for the blessings and how He remembers me, little old insignificant me. Every need is satisfied. Every blessing a miracle of love.
Tuesday, January 7, 2014
Baby it's cold outside
-1 in the 'burg today. Okay, that's cold. Keeping in mind that cold is relative, though, I know that there are plenty of folks in the US and around the world who have been "enjoying" those temps or lower for months already.
Lots going around on Facebook today; kids happy to have off school for cold weather, parents scrambling to find childcare because their kids are off school, and us older, wiser folks lamenting the days gone by when school didn't get canceled unless you truly could not get the buses out in the streets even with their chains on.
Just to say I did so, let me reminisce a bit. I remember when... I attended Christian school and was forced to wear a skirt or dress but on the cold days we could wear pants under our dresses for added warmth (and, I always thought, modesty on the playground). It made such a lovely fashion statement and I'm sure it was the forerunner to today's leggings and long shirts or dresses. Yes, it was cold at the bus stop but with our pants and boots and coats and hats and scarves and layers upon layers we actually survived while waiting. Go figure. Sometimes, our parents drove us to the bus stop to wait in a warm car. More often, they dressed up in their own layers and walked with us. As we got older, they just stood at the door in the warm house and watched us go.
The Good Doctor, who walked to school, fondly remembers these cold days as well. You know the old story, uphill both ways, always in the snow, and always barefoot to boot. Well, he did walk to school. I don't think the uphill both ways is true though because we all know there are no hills in Indiana.
It's a shame our litigious society has brought us to a place where school officials must make "life or death" decisions to close schools not just for closed or icy roads but for high winds and/or "low" temperatures. It's also a shame that our American ideal of comfort above all else leads us to believe we need to be spared a little windchill or the threat that it might possibly snow a little later in the day.
Here at the King house we took advantage of the Facebook posts and lovely sunny day at home to once again talk about entitlement and serving others. Every circumstance is an opportunity for teachable moments. Sometimes the school districts hand them to us on a silver platter. Here's a brief synopsis:
It's cold. Too cold? Who decides? Why were decisions made as they were? Are there people who live in colder conditions? Where? How do they function?
Who might be most affected by the cold temperatures in this area? We came up with the homeless, those whose power might go out, those working outside like the trash collectors and mail carriers.
What could families have done if school would have been in session? Kids could have layered up, parents could have driven them to school or to the bus stop, parents who were working could have made other arrangements with neighbors or friends to take their kids, or again, layer up.
And then we asked ourselves, Where should the body of Christ be?
We should not be complaining about circumstances. We should remember that there are others who are in worse circumstances than us and then see what we can do to relieve someone else's suffering.
If it's cold and school is in session, we can pick up other children and drive them to school or to the bus stop. This would help out families whose parents need to work early and who can't drive their children. But this also means we need to know our neighbors and reach out to those around us so that others will feel comfortable allowing their children to ride with us or to be picked up by us.
If we know of a family that doesn't have the money for proper cold weather gear, we can direct them to local organizations that help out (ie. Wildcat Foundation), or we can share our outgrown or extra clothes, or even buy them what they need.
As a stay-at-home family we need to be willing to volunteer our home and our time so working parents have a place to send their children when school is canceled. We decided this might not be a good idea for us this year since Victor has a suppressed immune system, but it is something we want to think more about for next year.
And thanks to a reminder from our friend, Amy, we reached out to our mail carrier on this very cold day. We put a few packets of Eden's famous hot chocolate in the mailbox with a note thanking him for his service to us no matter the weather. We heard conflicting reports on whether or not mail carriers are allowed to accept gifts but we are thankful that whether or not he could, he did.
As always, we reminded ourselves of two important truths:
1. It's not about me.
2. I need to be willing to be uncomfortable so that others are comfortable.
All in all, a good day if I do say so myself.
Lots going around on Facebook today; kids happy to have off school for cold weather, parents scrambling to find childcare because their kids are off school, and us older, wiser folks lamenting the days gone by when school didn't get canceled unless you truly could not get the buses out in the streets even with their chains on.
Just to say I did so, let me reminisce a bit. I remember when... I attended Christian school and was forced to wear a skirt or dress but on the cold days we could wear pants under our dresses for added warmth (and, I always thought, modesty on the playground). It made such a lovely fashion statement and I'm sure it was the forerunner to today's leggings and long shirts or dresses. Yes, it was cold at the bus stop but with our pants and boots and coats and hats and scarves and layers upon layers we actually survived while waiting. Go figure. Sometimes, our parents drove us to the bus stop to wait in a warm car. More often, they dressed up in their own layers and walked with us. As we got older, they just stood at the door in the warm house and watched us go.
The Good Doctor, who walked to school, fondly remembers these cold days as well. You know the old story, uphill both ways, always in the snow, and always barefoot to boot. Well, he did walk to school. I don't think the uphill both ways is true though because we all know there are no hills in Indiana.
It's a shame our litigious society has brought us to a place where school officials must make "life or death" decisions to close schools not just for closed or icy roads but for high winds and/or "low" temperatures. It's also a shame that our American ideal of comfort above all else leads us to believe we need to be spared a little windchill or the threat that it might possibly snow a little later in the day.
Here at the King house we took advantage of the Facebook posts and lovely sunny day at home to once again talk about entitlement and serving others. Every circumstance is an opportunity for teachable moments. Sometimes the school districts hand them to us on a silver platter. Here's a brief synopsis:
It's cold. Too cold? Who decides? Why were decisions made as they were? Are there people who live in colder conditions? Where? How do they function?
Who might be most affected by the cold temperatures in this area? We came up with the homeless, those whose power might go out, those working outside like the trash collectors and mail carriers.
What could families have done if school would have been in session? Kids could have layered up, parents could have driven them to school or to the bus stop, parents who were working could have made other arrangements with neighbors or friends to take their kids, or again, layer up.
And then we asked ourselves, Where should the body of Christ be?
We should not be complaining about circumstances. We should remember that there are others who are in worse circumstances than us and then see what we can do to relieve someone else's suffering.
If it's cold and school is in session, we can pick up other children and drive them to school or to the bus stop. This would help out families whose parents need to work early and who can't drive their children. But this also means we need to know our neighbors and reach out to those around us so that others will feel comfortable allowing their children to ride with us or to be picked up by us.
If we know of a family that doesn't have the money for proper cold weather gear, we can direct them to local organizations that help out (ie. Wildcat Foundation), or we can share our outgrown or extra clothes, or even buy them what they need.
As a stay-at-home family we need to be willing to volunteer our home and our time so working parents have a place to send their children when school is canceled. We decided this might not be a good idea for us this year since Victor has a suppressed immune system, but it is something we want to think more about for next year.
And thanks to a reminder from our friend, Amy, we reached out to our mail carrier on this very cold day. We put a few packets of Eden's famous hot chocolate in the mailbox with a note thanking him for his service to us no matter the weather. We heard conflicting reports on whether or not mail carriers are allowed to accept gifts but we are thankful that whether or not he could, he did.
As always, we reminded ourselves of two important truths:
1. It's not about me.
2. I need to be willing to be uncomfortable so that others are comfortable.
All in all, a good day if I do say so myself.
Friday, January 3, 2014
On Christmas Eve day in the afternoon
I kind of got sidetracked from my Christmas Eve recap. That whole gift of a visit from a great friend just got me all befuddled.
Anyway, gifts ended and it was time for the traditional family brunch where everyone helps. Cinnamon rolls are a given. Everyone helps to make and everyone helps to clean up.
Game time is next. This year we started with a family funny book contest. I went through all those books where I've written the cute and curious things the kids have said and I made them into a contest. Andrew won. See, Andrew, it appears as if there are times when being the oldest is a help not a hindrance.
How would you do with this sampling from our quiz (answers at the end of the post)?
3. Who was watching football on TV with Daddy and said, “Look, Philistines!”
We also played Left-Center-Right but instead of playing with chips to be passed around, each child started with 10 pieces of their favorite candy. We played in rounds of 3 minutes and at the end of each round you could place a piece of your remaining candy into a bag to be kept.
And we couldn't forget the yearly race to finish a task. Last year it was a small Lego building set. This year it was a puzzle. It was funny to watch how each personality approached puzzle making. All those puzzles get donated to other children in the weeks to come.
This year we added Christmas caroling to the neighbors to our day's activities. Since we moved here 10 years ago, 5 neighbors have lost a spouse. Two of these deaths occurred this year, one of them just before Christmas. It was good to spend a portion of our day spreading the blessing of Christmas. I hope this is a tradition that continues.
What are your Christmas traditions?
*Answers to the quiz questions: The questions go in order from oldest to youngest, Andrew, Jesse, Mariana, Shoun, Isaac, Eden and HopeAnne
Anyway, gifts ended and it was time for the traditional family brunch where everyone helps. Cinnamon rolls are a given. Everyone helps to make and everyone helps to clean up.
Game time is next. This year we started with a family funny book contest. I went through all those books where I've written the cute and curious things the kids have said and I made them into a contest. Andrew won. See, Andrew, it appears as if there are times when being the oldest is a help not a hindrance.
How would you do with this sampling from our quiz (answers at the end of the post)?
1. Who thought the angels in the Christmas story said, “Behold,
I bring you good movies.”
2. Who enjoyed watching the toasts at a wedding so much that
he/she said, “I want to be a toaster when I grow up?”
3. Who was watching football on TV with Daddy and said, “Look, Philistines!”
4. Who said, “I’m a poet and didn’t even figure it out yet,”
erroneously assuming this rhymed like the real saying.
5. Who saw an inflatable mummy at Halloween and said, “Look,
Mommy, it’s the man Jesus brought out.”
6. Who watched The Sound of Music and described it this
way: Mom, they have seven
children…There was a lady who was a Mun, or something like that. She was always late and she never got
to pray so her punishment was that she had to help this family that has 7
children.”
7. Who called shorts, “Legs-sticking-out”?
We also played Left-Center-Right but instead of playing with chips to be passed around, each child started with 10 pieces of their favorite candy. We played in rounds of 3 minutes and at the end of each round you could place a piece of your remaining candy into a bag to be kept.
And we couldn't forget the yearly race to finish a task. Last year it was a small Lego building set. This year it was a puzzle. It was funny to watch how each personality approached puzzle making. All those puzzles get donated to other children in the weeks to come.
This year we added Christmas caroling to the neighbors to our day's activities. Since we moved here 10 years ago, 5 neighbors have lost a spouse. Two of these deaths occurred this year, one of them just before Christmas. It was good to spend a portion of our day spreading the blessing of Christmas. I hope this is a tradition that continues.
What are your Christmas traditions?
*Answers to the quiz questions: The questions go in order from oldest to youngest, Andrew, Jesse, Mariana, Shoun, Isaac, Eden and HopeAnne
Thursday, January 2, 2014
Going out of business
It was cold and windy and the man was bundled up as tightly as he could be. He stood by the road holding his Going Out of Business sign. We felt him staring at us as we drove into the fast food restaurant just feet from his advertising spot.
My heart went out to him. Not in a "let's adopt him" sort of way but in a "no one grows up saying they want to stand along a busy road in the middle of winter holding a sign" kind of way.
We talk about serving others. We talk about being Jesus' hands and feet. We ask God to show us how we can shine His light through us. "Let's buy him a sandwich."
The Good Doctor wasn't sure he had heard me correctly.
"What?"
I said, "Let's buy him a sandwich. Before we leave, I think we should take him some lunch."
So we did. And as we drove away, I saw him digging into that bag and enjoying his simple lunch.
The prayer running through my head was not just for my children to catch the joy of serving, but for that man to catch a glimpse of the One who loves Him no matter what. The One who is proud of him just for being him.
My heart went out to him. Not in a "let's adopt him" sort of way but in a "no one grows up saying they want to stand along a busy road in the middle of winter holding a sign" kind of way.
We talk about serving others. We talk about being Jesus' hands and feet. We ask God to show us how we can shine His light through us. "Let's buy him a sandwich."
The Good Doctor wasn't sure he had heard me correctly.
"What?"
I said, "Let's buy him a sandwich. Before we leave, I think we should take him some lunch."
So we did. And as we drove away, I saw him digging into that bag and enjoying his simple lunch.
The prayer running through my head was not just for my children to catch the joy of serving, but for that man to catch a glimpse of the One who loves Him no matter what. The One who is proud of him just for being him.
Wednesday, January 1, 2014
One word
And here we are, another year down, another year older.
My good friend, Kym, is excellent at keeping me accountable. She sent me an email a few days ago:
"Got a word picked out for 2014? When you look back at 2013 where do you see your word?"
It's a good thing I have Kym because I have to be honest, it's been a long time since I thought about my word for 2013. I took a look back at my January post of a year ago to reread what I had written. My word was renewing and my first thought was that I significantly lost the battle for renewing in 2013.
But then I read the verse I had chosen:
Therefore, I urge you, brothers and sisters, in view of God's mercy, to offer your bodies as a living sacrifice, holy and pleasing to God - this is your true and proper worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is - His good, pleasing, and perfect will. Romans 12: 1 - 2.
and the first word of the final sentence caught my eye: then
Then what? Then you will be able to test and approve what God's will is - His good, pleasing, and perfect will.
2013, for me, was about renewing so that I could be better prepared to test and approve what God's will is. We certainly tested and approved God's will and it was undeniably good, pleasing, and perfect.
So what is my word for 2014? I initially tossed around several options. It didn't take long for me to settle on a word, less. As Kym says, I "wore" it for a few days and decided it definitely fits. In the simplest sense, I could do with a bit less physically - changing some bad eating habits developed living alone and then with a new baby in the house, simplifying the "stuff" around me, making better choices in where I spend my time and energy. Spiritually, I want to live my life focusing less on me, and more on Christ.
The Message says it like this:
"This is the assigned moment for him to move into the center, while I slip off to the sidelines."
This year, I desire to allow Christ center stage while I slip farther off to the sidelines.
I'm excited already!
Has God given you a word for 2014?
My good friend, Kym, is excellent at keeping me accountable. She sent me an email a few days ago:
"Got a word picked out for 2014? When you look back at 2013 where do you see your word?"
It's a good thing I have Kym because I have to be honest, it's been a long time since I thought about my word for 2013. I took a look back at my January post of a year ago to reread what I had written. My word was renewing and my first thought was that I significantly lost the battle for renewing in 2013.
But then I read the verse I had chosen:
Therefore, I urge you, brothers and sisters, in view of God's mercy, to offer your bodies as a living sacrifice, holy and pleasing to God - this is your true and proper worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is - His good, pleasing, and perfect will. Romans 12: 1 - 2.
and the first word of the final sentence caught my eye: then
Then what? Then you will be able to test and approve what God's will is - His good, pleasing, and perfect will.
2013, for me, was about renewing so that I could be better prepared to test and approve what God's will is. We certainly tested and approved God's will and it was undeniably good, pleasing, and perfect.
So what is my word for 2014? I initially tossed around several options. It didn't take long for me to settle on a word, less. As Kym says, I "wore" it for a few days and decided it definitely fits. In the simplest sense, I could do with a bit less physically - changing some bad eating habits developed living alone and then with a new baby in the house, simplifying the "stuff" around me, making better choices in where I spend my time and energy. Spiritually, I want to live my life focusing less on me, and more on Christ.
John 3:29-30 The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete. He (Christ) must become greater; I must become less.”
The Message says it like this:
"This is the assigned moment for him to move into the center, while I slip off to the sidelines."
This year, I desire to allow Christ center stage while I slip farther off to the sidelines.
I'm excited already!
Has God given you a word for 2014?
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