January 30, 2012
January 27, 2012
Family Update
It has been a long while since I have provided an update on our family. Considering that was one of the original purposes of the blog, I feel compelled to continue so you will know how to pray for our family {and we cherish those prayers}.
Aaron has adjusted to the routine of teaching at a different school this year and is greatly enjoying it. It does mean a longer commute but he says it is definitely worth it. He also continues to paint frequently on the side. God has blessed Aaron with extra work so that we can pay the many bills that are related to a growing family and a child with special needs.
Grant began attending a special needs class three days a week at a local public school in September. He loves it and is thriving. His teachers say he is very good at following directions, enjoys circle time, and continues to progress. They also report that he daily melts their hearts with his smile and his "puppy-dog cute" eyes. He can now say a couple more words - including Mommy and Daddy. It is a sweet melody to our ears.
We are waiting on an appointment to have Grant assessed (again) for autism. Lord willing, with an autism diagnosis, Grant will qualify for more therapy which he greatly needs. This is a significant prayer request for us.
Wesley is as rambunctious as ever. He is the perfect combination of "fun-loving goofy" and determination. He attacks every challenge with a smirk on his face and flourishes. While it may be early to determine this, he seems to have a very strong will. And I love it. It can be difficult to parent him at times but I am praying that Wes will have a tender heart for his brother (and others), that he will grow in wisdom and love, and have the strength to help his brother when the time comes.
Wesley is definitely on the small side and we are praying that he will continue to eat well and grow.
I {Karen} am enjoying the blessing of watching God work in my family's life and in my own life. I still experience an array of emotions but have discovered the sweet joy and peace that accompanies being thankful in and through all things. I have had the honor of sharing about Fragile X Syndrome and our story through some writing and speaking engagements... it has been a delight of my heart.
Now to the King eternal, immortal, invisible, the only God, be honor and glory forever and ever. Amen. 1 Timothy 1:17
Aaron has adjusted to the routine of teaching at a different school this year and is greatly enjoying it. It does mean a longer commute but he says it is definitely worth it. He also continues to paint frequently on the side. God has blessed Aaron with extra work so that we can pay the many bills that are related to a growing family and a child with special needs.
Grant began attending a special needs class three days a week at a local public school in September. He loves it and is thriving. His teachers say he is very good at following directions, enjoys circle time, and continues to progress. They also report that he daily melts their hearts with his smile and his "puppy-dog cute" eyes. He can now say a couple more words - including Mommy and Daddy. It is a sweet melody to our ears.
We are waiting on an appointment to have Grant assessed (again) for autism. Lord willing, with an autism diagnosis, Grant will qualify for more therapy which he greatly needs. This is a significant prayer request for us.
Wesley is as rambunctious as ever. He is the perfect combination of "fun-loving goofy" and determination. He attacks every challenge with a smirk on his face and flourishes. While it may be early to determine this, he seems to have a very strong will. And I love it. It can be difficult to parent him at times but I am praying that Wes will have a tender heart for his brother (and others), that he will grow in wisdom and love, and have the strength to help his brother when the time comes.
Wesley is definitely on the small side and we are praying that he will continue to eat well and grow.
I {Karen} am enjoying the blessing of watching God work in my family's life and in my own life. I still experience an array of emotions but have discovered the sweet joy and peace that accompanies being thankful in and through all things. I have had the honor of sharing about Fragile X Syndrome and our story through some writing and speaking engagements... it has been a delight of my heart.
Now to the King eternal, immortal, invisible, the only God, be honor and glory forever and ever. Amen. 1 Timothy 1:17
January 25, 2012
Finding joy in the color gray
For days a drizzly fog settled on our backyard. Its grayness seemed to seep into our home.
The boys were restless from getting over lingering colds while the steady rain built a barrier that kept them inside the house.
Helplessness was pulling hard on the ever constant tug-of-war my attitude has when I watch my oldest son struggle with his sensory issues.
I began to recount why we were all justified in feeling cranky, but stopped short. What does that help?
It is during times like this I must pause to count my blessings.
Shelter from the weather, warm food to satisfy our hunger, books to read, laughter, grace, extra work for my husband so we can pay the bills, the letter of encouragement from a church member, supportive friends and family...
During the long days indoors, Grant frequently flipped through a photo album of his first year while pointing to and saying Papa, Mama, Daddeee, or Mommeee [translation: Grandpa, Grandma, Daddy, or Mommy] ...Music to my ears.
Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:16-18
The boys were restless from getting over lingering colds while the steady rain built a barrier that kept them inside the house.
Helplessness was pulling hard on the ever constant tug-of-war my attitude has when I watch my oldest son struggle with his sensory issues.
I began to recount why we were all justified in feeling cranky, but stopped short. What does that help?
It is during times like this I must pause to count my blessings.
Shelter from the weather, warm food to satisfy our hunger, books to read, laughter, grace, extra work for my husband so we can pay the bills, the letter of encouragement from a church member, supportive friends and family...
During the long days indoors, Grant frequently flipped through a photo album of his first year while pointing to and saying Papa, Mama, Daddeee, or Mommeee [translation: Grandpa, Grandma, Daddy, or Mommy] ...Music to my ears.
Wesley is often ready to step in and provide comic relief.
A book about baseball read over and over to one of baseball's youngest fans...
...Which reminded him to go and get his beloved baseball glove.
Ready... Set... Go! Percy and Thomas raced across our kitchen floor. I forget the tally, but Thomas usually won while Percy liked to veer to the right.
When, at last, the rain passed, the boys were more than eager to escape the confines of the house.
Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:16-18
January 23, 2012
Every life has purpose
In keeping with my post yesterday on Sanctity of Human Life Sunday, I'd like to share a short film with you called The Butterfly Circus. Please take a few minutes out of your day to watch this inspiring and beautiful masterpiece.
http://www.youtube.com/watch?v=p98KAEif3bI
And now a little more about Nick Vujicic... {grab a few tissues}
http://www.youtube.com/watch?v=Tl58qufXfYk
In God's eyes, every life has purpose!
The greater the struggle, the more glorious the triumph. {The Butterfly Circus}
http://www.youtube.com/watch?v=p98KAEif3bI
And now a little more about Nick Vujicic... {grab a few tissues}
http://www.youtube.com/watch?v=Tl58qufXfYk
In God's eyes, every life has purpose!
January 22, 2012
You have granted me life...
That smile. Those eyes. He looks at me and signs the letter "L". He is saying Love to me. My whole body beams with joy as I sign I love you in response.
My son, Grant, has Fragile X Syndrome. Among many symptoms, he has a low IQ. He is young, but currently he is testing at around 75. That means he is mentally impaired. It has been nearly a year since his diagnoses and I still cannot say those words without choking up and fighting back tears.
Mixed in with those hot tears is the desperate hope that others will see my son as I see him.
Grant was designed and woven together by the Creator.
My husband and I chose Grant's name because we liked how it sounded, but later during my pregnancy I read Job 10:11-12 and it was established as our meaning for Grant's name.
http://www.youtube.com/watch?v=kPF1FhCMPuQ
My son, Grant, has Fragile X Syndrome. Among many symptoms, he has a low IQ. He is young, but currently he is testing at around 75. That means he is mentally impaired. It has been nearly a year since his diagnoses and I still cannot say those words without choking up and fighting back tears.
Mixed in with those hot tears is the desperate hope that others will see my son as I see him.
Grant was designed and woven together by the Creator.
My husband and I chose Grant's name because we liked how it sounded, but later during my pregnancy I read Job 10:11-12 and it was established as our meaning for Grant's name.
You
clothed me with skin and flesh, and knit me together with bones and
sinews.
You have granted me life and steadfast love, and your care has preserved my spirit.
Job 10:11-12 ESV
You have granted me life and steadfast love, and your care has preserved my spirit.
Job 10:11-12 ESV
Grant is a gift, a treasure. He has been granted to us to love, instruct, and point towards Christ.
Today is Sanctity of Human Life Sunday.
Today is Sanctity of Human Life Sunday.
I am here - Grant is here - to tell you that every life is worth keeping.
In God's eyes, every life has purpose.
Please take a few minutes to meet Gianna Jessen:
In God's eyes, every life has purpose.
Please take a few minutes to meet Gianna Jessen:
http://www.youtube.com/watch?v=kPF1FhCMPuQ
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works; my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them. Psalm 139:13-16 ESV
January 20, 2012
trading broken cisterns for living water
Sitting in my living room I hear the winter rain drumming outside.
The pattern of the rain drops soothes me as I pull a blanket close around me.
I am filled with comfort and contentment.
It has been almost one year since I received the phone call that forever changed my life's direction.
That phone call began my journey of wandering through the desert of pain, sadness, anger, bitterness, and hopelessness. I was forced to abandon my broken cistern and search for water.
My people have committed two sins: They have forsaken me, the spring of living water, and have dug their own cisterns, broken cisterns that cannot hold water. Jeremiah 2:13
Along the way I encountered many guides who helped me find my way to the living water. The body of Christ surrounded my family and held us close. I felt the presence of God as I resolved to praise His name through the storm.
In the beginning, I struggled to let go of my pride and receive comfort. But there is little room for pride when you are being refined. I finally allowed comfort to rain on me.
My cistern is filling with pure, wonderful water. I have been comforted. I have been loved on. I have filled my heart with the truth.
I am tempted to sit here a while longer. It feels good. But I have had my time to rest.
God comforts us not to make us comfortable but to make us comforters. ~ John Henry Jowett
It is time to continue my journey. The tough days are not behind me. No, there are many more to come. But I have tasted the water of life and I must tell others of it and share my comfort.
The pattern of the rain drops soothes me as I pull a blanket close around me.
I am filled with comfort and contentment.
It has been almost one year since I received the phone call that forever changed my life's direction.
That phone call began my journey of wandering through the desert of pain, sadness, anger, bitterness, and hopelessness. I was forced to abandon my broken cistern and search for water.
My people have committed two sins: They have forsaken me, the spring of living water, and have dug their own cisterns, broken cisterns that cannot hold water. Jeremiah 2:13
Along the way I encountered many guides who helped me find my way to the living water. The body of Christ surrounded my family and held us close. I felt the presence of God as I resolved to praise His name through the storm.
In the beginning, I struggled to let go of my pride and receive comfort. But there is little room for pride when you are being refined. I finally allowed comfort to rain on me.
My cistern is filling with pure, wonderful water. I have been comforted. I have been loved on. I have filled my heart with the truth.
I am tempted to sit here a while longer. It feels good. But I have had my time to rest.
God comforts us not to make us comfortable but to make us comforters. ~ John Henry Jowett
It is time to continue my journey. The tough days are not behind me. No, there are many more to come. But I have tasted the water of life and I must tell others of it and share my comfort.
January 18, 2012
Slowing Down
It has been a time of sickness in our house.
The boys' energetic play has been downgraded to a more subdued tone.
While wiping runny noses, soothing sore throats, and trying to ease coughing fits hasn't been fun, it has been nice to slow our pace.
...To take a "time out" and simply rest.
...To stop and read a few more books and cuddle on the couch.
... To push aside the chaos and find joy in the calm.
Have you been able, even for just a few minutes, to find time this week to slow down?
For God alone, O my soul, wait in silence,
The boys' energetic play has been downgraded to a more subdued tone.
...To take a "time out" and simply rest.
...To stop and read a few more books and cuddle on the couch.
... To push aside the chaos and find joy in the calm.
Have you been able, even for just a few minutes, to find time this week to slow down?
For God alone, O my soul, wait in silence,
for my hope is from him.
He only is my rock and my salvation,
my fortress; I shall not be shaken.
On God rests my salvation and my glory;
my mighty rock, my refuge is God.
Psalm 62:5-7 ESVHe only is my rock and my salvation,
my fortress; I shall not be shaken.
On God rests my salvation and my glory;
my mighty rock, my refuge is God.
January 16, 2012
Bittersweet
I hold my breath as I lay a new puzzle before Grant. While matching is one of his many strengths, anything demanding fine motor skills is one of his biggest weaknesses. I show him how to hold the magnetic "fishing rod" to pick up the pieces.
I guide his hand as he grasps the rod. He is excited at first. He wants to do it. I watch his eyes dart around the puzzle board. I can tell he is figuring it out. Together we pick up a couple pieces and then I release my grip. It is time for him to figure out how to do the puzzle on his own.
He tries. He tries really hard. But Grant's unsteady hands won't do what he wants them to do and he begins to cry. With soothing words of encouragement and guidance, I urge him to keep trying.
But Grant has had enough. He is extremely frustrated and the crying turns into a small meltdown. I step back and take a couple deep breaths to keep my composure. Puzzle pieces lay scattered on the floor. I pull Grant close and hug him tightly.
"I love you, Grant. I am so proud of you for trying the puzzle. I know you are frustrated but you cannot throw your toys."
After he calms down and signs "sorry", we put the pieces back into place and I plan another time for Grant to work on the puzzle. I don't know how long it will take until Grant masters the puzzle but I know I will need to be very patient.
Then, after all the pieces were back in place, Wesley, Grant's younger brother, excitedly scooted over to the puzzle. Without any instruction, he picked up the stick. After less than thirty seconds he figured out how to maneuver the fishing rod. It took just another minute before he completed the "fishing expedition".
I smiled and clapped for Wesley. I am so proud of him. But inwardly I am taken aback. I have been reminded of Grant's severe developmental delays once again.
I fight hard not to compare Grant with other children while we are at a store, at church, or on a play date. Now I will have to fight that battle at home. To win the battle I must keep my focus on my blessings. My heart must remain in a state of thankfulness. I must remember that God is in control and I have a wonderful inheritance.
A couple days later...
After snack time and some sensory input, we tried the puzzle again.
At first Grant tried to pick up the pieces by holding the magnetic bar directly on the fish.
But then, after a minute of trying....
...He did it!!
I know the picture above is blurry but it shows Grant "fishing" the puzzle piece correctly for the first time. I love his big smile. He is so proud. And we are so proud of you, Grant!
Never give up.
The following quote has been floating around on Facebook the past couple of weeks. While it was originally said about Fragile X carriers, I think it applies to many special needs parents:
Most [Fragile X] premutation carriers whom the teacher encounters will be the mothers of children affected by FXS. These mothers are remarkable for their insight and strength in finding interventions that can help their children. They are called carriers because they carry a specific gene they pass on to their children. I call them carriers because they carry all the hopes and dreams possible for... their children. They carry their fears, anxiety, struggles, defeat, and pain. They are capable of carrying the joy of success and the disappointment of developmental delays all at the same time. They carry a favorite toy, an old picture or a funny cap to bring comfort and security wherever they go. They carry mental ammunition to their school placement staffings and strategies for treatment. They carry the strength to defy all odds and march on with fortified courage and unconditional love. These are the carriers I know.
~ by Doctor Randi Hagerman, Medical Director of the MIND Institute and Professor and Endowed Chair in Fragile X Research
I guide his hand as he grasps the rod. He is excited at first. He wants to do it. I watch his eyes dart around the puzzle board. I can tell he is figuring it out. Together we pick up a couple pieces and then I release my grip. It is time for him to figure out how to do the puzzle on his own.
He tries. He tries really hard. But Grant's unsteady hands won't do what he wants them to do and he begins to cry. With soothing words of encouragement and guidance, I urge him to keep trying.
But Grant has had enough. He is extremely frustrated and the crying turns into a small meltdown. I step back and take a couple deep breaths to keep my composure. Puzzle pieces lay scattered on the floor. I pull Grant close and hug him tightly.
"I love you, Grant. I am so proud of you for trying the puzzle. I know you are frustrated but you cannot throw your toys."
After he calms down and signs "sorry", we put the pieces back into place and I plan another time for Grant to work on the puzzle. I don't know how long it will take until Grant masters the puzzle but I know I will need to be very patient.
Then, after all the pieces were back in place, Wesley, Grant's younger brother, excitedly scooted over to the puzzle. Without any instruction, he picked up the stick. After less than thirty seconds he figured out how to maneuver the fishing rod. It took just another minute before he completed the "fishing expedition".
I smiled and clapped for Wesley. I am so proud of him. But inwardly I am taken aback. I have been reminded of Grant's severe developmental delays once again.
I fight hard not to compare Grant with other children while we are at a store, at church, or on a play date. Now I will have to fight that battle at home. To win the battle I must keep my focus on my blessings. My heart must remain in a state of thankfulness. I must remember that God is in control and I have a wonderful inheritance.
The Lord is my chosen portion and my cup; You hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance. Psalm 16:5-6
. . . . . . . . . . . . . . . . . . . . . .
A couple days later...
After snack time and some sensory input, we tried the puzzle again.
At first Grant tried to pick up the pieces by holding the magnetic bar directly on the fish.
But then, after a minute of trying....
...He did it!!
Never give up.
. . . . . . . . . . . . . . . . . . . .
The following quote has been floating around on Facebook the past couple of weeks. While it was originally said about Fragile X carriers, I think it applies to many special needs parents:
Most [Fragile X] premutation carriers whom the teacher encounters will be the mothers of children affected by FXS. These mothers are remarkable for their insight and strength in finding interventions that can help their children. They are called carriers because they carry a specific gene they pass on to their children. I call them carriers because they carry all the hopes and dreams possible for... their children. They carry their fears, anxiety, struggles, defeat, and pain. They are capable of carrying the joy of success and the disappointment of developmental delays all at the same time. They carry a favorite toy, an old picture or a funny cap to bring comfort and security wherever they go. They carry mental ammunition to their school placement staffings and strategies for treatment. They carry the strength to defy all odds and march on with fortified courage and unconditional love. These are the carriers I know.
~ by Doctor Randi Hagerman, Medical Director of the MIND Institute and Professor and Endowed Chair in Fragile X Research
January 13, 2012
Awake!
My eyes opened quickly this morning as I heard my children calling for me. I am ready for a new day. Like a flower stretching its petals from a bud, I feel my heart beginning to open and reach for the sunlight.
There is an intense pull to praise my God. Through the dark nights and rainy days He has been faithful. His steadfast love has been undeniable.
I will continue to lean on Him as I navigate through this season of healing and change, but I now carry with me a great feeling of hope.
Praise be to the One who leads the way!
My heart, O God, is steadfast, my heart is steadfast; I will sing and make music.
Awake, my soul! Awake, harp and lyre! I will awaken the dawn.
I will praise you, Lord, among the nations; I will sing of you among the peoples.
For great is your love, reaching to the heavens; your faithfulness reaches to the skies.
Be exalted, O God, above the heavens; let your glory be over all the earth.
Psalm 57:7-11 NIV
This post was written as part of Five Minute Friday.
On Fridays around these parts we stop, drop, and write. For fun, for love of the sound of words, for play, for delight, for joy and celebration at the art of communication. For only five short, bold, beautiful minutes. Unscripted and unedited. We just write without worrying if it’s just right or not.
Check it out and join us!
There is an intense pull to praise my God. Through the dark nights and rainy days He has been faithful. His steadfast love has been undeniable.
I will continue to lean on Him as I navigate through this season of healing and change, but I now carry with me a great feeling of hope.
Praise be to the One who leads the way!
My heart, O God, is steadfast, my heart is steadfast; I will sing and make music.
Awake, my soul! Awake, harp and lyre! I will awaken the dawn.
I will praise you, Lord, among the nations; I will sing of you among the peoples.
For great is your love, reaching to the heavens; your faithfulness reaches to the skies.
Be exalted, O God, above the heavens; let your glory be over all the earth.
Psalm 57:7-11 NIV
. . . . . . . . . . . . . . . . . .
This post was written as part of Five Minute Friday.
On Fridays around these parts we stop, drop, and write. For fun, for love of the sound of words, for play, for delight, for joy and celebration at the art of communication. For only five short, bold, beautiful minutes. Unscripted and unedited. We just write without worrying if it’s just right or not.
Check it out and join us!
January 11, 2012
Bath Time, Baseball and a Bucket
This year I'm all about treasuring. In fact, I'm pretty sure that is going to be a big part of my life... treasuring the "little things". To me, those little things have become very significant.
Bath time! Say those words and two very excited little boys will race up the stairs.
Wesley is a boy of many expressions. Many expressions.
It looks like he is saying "no pictures please!" but he is actually waving and saying "hi!" : )
Grant is a shower boy. Well, truthfully, he enjoys baths and showers equally but sticking him in the tub with his brother is a recipe for frustration. So Wes gets a bath while Grantdances jumps and sings yells joyfully in the shower.
I've said it many times already - Grant loves baseball. This past Christmas he received baseball cards, several baseball books and a baseball "blooper" DVD from his Uncle Mark. Grant is a huge fan. (Trivia question: Can you guess who the baseball player is on the TV?)
Grant also loves jumping. Jumping and baseball.
And here Wesley is sitting on the couch noshing on grapes and getting a kick out of watching Grant jump with excitement over baseball. Very entertaining.
Wesley definitely knows how to create his own fun. All day he was carrying his favorite toys in the red bucket until he decided to put it over his head and run blindly around the house. Boys...
Oh give thanks to the LORD, call upon His name; make known His deeds among the peoples. Sing to Him, sing praises to Him; speak of all His wonders. Glory in His holy name; let the heart of those who seek the LORD be glad. Psalm 105:1-3 NASB
. . . . . . . . . . . . . . . . . . . .
Bath time! Say those words and two very excited little boys will race up the stairs.
Wesley is a boy of many expressions. Many expressions.
It looks like he is saying "no pictures please!" but he is actually waving and saying "hi!" : )
Grant is a shower boy. Well, truthfully, he enjoys baths and showers equally but sticking him in the tub with his brother is a recipe for frustration. So Wes gets a bath while Grant
I've said it many times already - Grant loves baseball. This past Christmas he received baseball cards, several baseball books and a baseball "blooper" DVD from his Uncle Mark. Grant is a huge fan. (Trivia question: Can you guess who the baseball player is on the TV?)
Grant also loves jumping. Jumping and baseball.
And here Wesley is sitting on the couch noshing on grapes and getting a kick out of watching Grant jump with excitement over baseball. Very entertaining.
Wesley definitely knows how to create his own fun. All day he was carrying his favorite toys in the red bucket until he decided to put it over his head and run blindly around the house. Boys...
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