"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...
Saturday, January 25, 2014
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...
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.
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.
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.
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