Red Letter Living

Family Update

2012-01-27T15:35:00.000-05:00

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

Finding joy in the color gray

2012-01-25T06:30:00.000-05:00

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, instead, 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

Every life has purpose

2012-01-23T08:50:00.000-05:00

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.

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!

You have granted me life...

2012-01-22T06:30:00.000-05:00

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.

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

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.

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:

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

trading broken cisterns for living water

2012-01-20T10:55:00.000-05:00

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.

Slowing Down

2012-01-18T09:05:00.000-05:00

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,

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 ESV

Bittersweet

2012-01-16T08:10:00.000-05:00

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.

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

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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.

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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

Awake!

2012-01-13T08:00:00.000-05:00

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

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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!

Bath Time, Baseball and a Bucket

2012-01-11T06:30:00.000-05:00

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.

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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 ~~dances~~ 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

Cease Striving

2012-01-09T15:30:00.000-05:00

As the word Amen slipped from my mouth, closing my quiet time, my gaze drifted to the woods in my backyard. I caught myself staring at the tall grass swaying in the winter breeze and my eyes filled with tears. I am embarrassed to say that I have been very emotional the past few days. I feel like that grass being tossed around by my windy emotions.

I have allowed the demands of life and my own expectations to get the best of me, causing me to become very vulnerable to anxiety, disappointment, and hurt. Frankly, rather than seeking God's approval, I have put too high an emphasis on man's approval.

I am ready to begin another chapter in my life and I sense a calling, but I have no direction. I tried to pave my own way but it proved futile.

And so I am hitting the pause button. I am releasing my own expectations and allowing myself to be still.

Oh the joy of letting go! How good it feels to simply sit and allow God to speak.

Cease striving and know that I am God; I will be exalted among the nation, I will be exalted in the earth. Psalm 46:10

Dear restless heart, be still; don't fret and worry so;

God has a thousand ways His love and help to show;

Just trust, and trust, and trust, until His will you know.

Dear restless heart, be still, for peace is God's own smile,

His love can every wrong and sorrow reconcile;

Just love, and love, and love, and calmly wait awhile.

Dear restless heart, be brave; don't moan and sorrow so,

He hath a meaning kind in chilly winds that blow;

Just hope, and hope, and hope, until you braver grow.

Dear restless heart, repose upon His breast this hour,

His grace is strength and life, His love is bloom and flower;

Just rest, and rest, and rest, within His tender power.

Dear restless heart, be still! Don't struggle to be free;

God's life is in your life, from Him you may not flee;

Just pray, and pray, and pray, till you have faith to see. by Edith Willis Linn

This is how I roll

2012-01-04T07:00:00.000-05:00

{Wordless Wednesday}

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And here begins a very random collection of [non-Christmas] photos from December...

A Minnesota Farm Christmas {2011}

2011-12-31T10:00:00.000-05:00

Every year we look forward to visiting the family farm. It is quite a trip for a family with young children - especially for our son with Fragile X Syndrome - but we are always rewarded with big blue skies, wide open spaces and warm fellowship when we arrive.

What a joy it is to gather treasures with loved ones we see so rarely.

The trip...

Wesley on his tippy-toes, desperate to see some planes through the airport window

Within minutes of the airplane taking off, the boys settled down for a nap.

After landing it was another 2.5 hour car ride as we traveled deep into the Minnesota farmland.

Grandpa and Wesley immediately bonded while we stopped to get something to eat.

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Around the farm...

A familiar view to the south... In the distance, in the glint of the sun's ray, you can see the local granary. I have many fond memories of riding along with my dad in the truck while he hauled corn during harvest.

A couple straggling pods of soy beans left to bask in the winter sun...

Wesley loved the little piglet. If he had a choice he would have taken it for his own. Perhaps, someday, he will have his own "Wilbur" like I did when I was a girl.

These chickens were actually at my cousin's farm. They were pecking around the cars as we were leaving the big family meal and it was a scene I had to capture.

Like a peacock displaying its plumage, the sky paraded a grandeur of colors each morning during our stay.

Grandpa giving Grant one of many rides on the ATV

My hubby... such an attractive, hard-working man. :) I am thankful I married a man who does not hesitate to jump into any farm chore. There was a time when I would shy away from my farm roots but now I cherish them. I adore that my husband loves the farm-girl who will always be a part of me.

Meet "Shadow"... the kitten trotted closely behind Wesley whenever he was out exploring the farm.

Old Sammie silently watching over the farm

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Christmas celebrations...

In our family, which is of German Mennonite decent, Zwieback has always been a essential part of a holiday meal. Naturally I am bias, but I truly think my mom and Grandma Penner make the best Zwieback around.

After Christmas dinner, the family gathered outside for a pick-up game of baseball.

Everyone was very kind to allow Grant plenty of time to bat

Grant got a hit! Run, Grant, RUN!

Gathered around the table at the big Penner family Christmas dinner we sang "Doxology" as the blessing for our meal - a family tradition.

Sweet Grossmutter {German for Grandmother} enjoyed laughing with Wesley. To know her is to know a kind woman with a tender heart for God.

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A snow-less winter wonderland...

I was a little sad we didn't experience a white Christmas. As I strolled down a country road listening to the familiar and comforting sound of my feet crunching against the gravel, I wondered what possible images of beauty I could find when all around me was veiled in brown. It didn't take long before I learned that God can reveal His splendor through any hue.

For you shall go out in joy and be led forth in peace;

the mountains and the hills before you shall break forth into singing,

and all the trees of the field shall clap their hands.

Isaiah 55 :12

Loved, Forgiven, Carried...Blessed

2011-12-24T08:00:00.000-05:00

Bless the LORD, O my soul, and all that is within me,
Bless His holy name!
Bless the LORD, O my soul, and forget not all His benefits,

Who forgives all your iniquity,
Who heals all your diseases,
Who redeems your life from the pit,
Who crowns you with steadfast love and mercy,
Who satisfies you with good so that your youth is renewed like the eagle's.

Psalm 103:1-5

Remembering the beloved gift from above as we treasure all that we have been blessed with...

Merry Christmas!

Treasure

2011-12-19T07:00:00.000-05:00

Woven through my heart are the little joys that complete my days. A syndrome I used to think could only be a curse has revealed beauty so intense it takes my breath away. I have learned to see the treasures that only hardship can produce.

Navigating this holiday season is different for us - a family with a special needs child. I struggle to explain the pain that accompanies the realization that we will always have to do things a little differently. Loud noises, changes in routine, surprises, and even boisterous salutations can be instruments of anxiety for our oldest son.

I can't help but to think of Mary and how she had to adjust her expectations. Birthing her first child far from home in a stranger's smelly stable couldn't have been part of her childhood dreams. Rather than getting caught up in the less than perfect scenario, she cherished the beauty that could have only come from such a situation.

But Mary treasured all these things, pondering them in her heart. Luke 2:19

This Christmas season I have released my expectations of what the holidays must look like for our family. Aaron and I have taken it upon ourselves to discover different ways to make the joy of Christ's birth real for our children. Like opening a beautifully wrapped gift, we eagerly anticipate the traditions our family will call our own as the boys grow older and we determine what Grant can handle.

For now I will treasure what I can...

~ Instead of hearing my oldest son, who at age three still cannot talk, yell in excitement over Christmas decorations, cookies or presents, I treasure watching him quietly listen to the Christmas story read by Daddy.

~ Instead of watching Grant rip open presents, because of his lack of understanding and struggling fine motor skills, I treasure his joy in throwing the wrappings in the air and hearing him laugh.

~ Instead of listening to Grant sing happy birthday to Jesus, I treasure watching him take his brother's hand as Aaron prays to thank God for our blessings.

There is so much to treasure.

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Baking Christmas cookies together was great fun. Aaron guided Grant's hands to cut out shapes of stars and Christmas trees while Wesley insisted on using the bell cookie cutter.

Letting go of my need to control each step, I allowed the boys to put the final touches on their cookies.

Naturally, one must try a cookie to make sure they turned out OK...

The boys enjoyed running through the rows of Christmas trees at a local farm. The sound of their laughter perfectly fit the mood of the season.

Merry Christmas!

The little things

2011-12-14T07:00:00.000-05:00

Oh the sweet nuggets of joy that fill my day...

Wesley trying on Daddy's shoes

Grant pouring through books, closely studying each page

Watching the boys as they play nicely and seeing their kinship grow

My little black shoes from the bargain bin that always make me feel a little pretty - even when paired with sweat pants

A text from Mom to let me know she cares

Sweet words from my hubby written on a sticky note for me to find

...These are a few of my favorite things.

Sensory Boxes & Button Fine-Motor Game

2011-12-12T13:50:00.000-05:00

{Indoor Activities}

My boys love to play outside. We relished the long, mild autumn months and played outside as much as possible. One of the wonderful things about the great outdoors is that it is easy for Grant to get his much needed sensory input. Swinging, climbing and sliding down the play set, t-ball, water play, rolling around in the grass, throwing leaves up in the air, and going on long, meandering walks were fabulous pieces of his sensory diet.

But now that cold weather and shorter days are here to stay for a while, I decided to restock our indoor sensory boxes.

I chose to go with pasta and dried kidney beans this time around. After adding a bunch of miscellaneous toys from around the house, it became a great new center of entertainment.

Wesley can contently play with the sensory box for long periods at a time. Grant, on the other hand, can sometimes handle the full sensory box - if seated at the table with a weighted vest. But other times it is too much for him and he'll start getting a little aggressive and throw the items - sensory overload. If I feel that is going to be the case, then I will have him sit at the table with a smaller version of the sensory box and work through it with him.

I made another sensory box filled with a larger ratio of softer items including fussy pom-poms, cotton balls, foam blocks, and feathers.

Grant and Wesley know shapes and are close to knowing most colors but they are far from recognizing letters and numbers. I saw the foam items in the baby bath section at Target and thought they would be great for numerous activities. The foam "splash cards" are also a great tool for working on Grant's (and Wesley's) verbal skills. I like to hide a couple foam items in the sensory box and talk about them while we play.

One of the things the doctors drilled into us when we visited the Duke Fragile X Clinic was to place a significant focus on strengthening Grant's fine motor skills (on top of his other therapies). Using a yogurt container and cutting a slit in the lid to slide buttons through is a great fine-motor activity.

Rotating and lining up the button, while keeping a steady hand, is a challenge for Grant. But he is getting better every time we practice!

I found this idea on Pinterest and had to copy it. The boys love to get their hands on our wipes container and pull out all the wipes. So, over the weekend, I got some scrap material, cut it up and put it in one of our old containers. The boys think it is great fun and I don't get upset over seeing our wipes scattered across the floor.

Follow Me... I know the way

2011-12-09T06:50:00.000-05:00

We sat quietly together. We were on a date but neither one of us made a move to leave the security of our car. We had just discovered that we were pregnant with our second child. While the news had come as a bit of surprise, what accented the shock was the realization that something might be very wrong with our first-born son.

The future we had mapped-out so carefully was quickly becoming very uncertain.

I became consumed by fear. I could hardly eat or sleep. At night I would wake up crying and the crying would turn into panic attacks. In response, Aaron would reach over, rub my back, and say a prayer out loud.

As we sat in the car, watching families leave the ice cream shop, Aaron took my hand and firmly spoke, "I was waiting until now to tell you about a dream I had last night."

"For some reason, I was back at college. I was walking through my dorm building when I realized it was on fire. I tried to find my way out but each way was blocked by more fire. I found myself down in the basement surrounded by flames. Just as I was about to give up, Jesus stepped forward. I told him I was lost and he said, 'Follow Me.'

I argued that I had tried every way possible but he simply said, 'Follow Me... I know the way.'

Then I woke up."

Aaron went on to say, "We are going to go through tough times but we just need to follow Christ. He already knows how our story is going to play out. He knows the way."

That dream and my husband's words comforted me greatly. The past couple of years have been more difficult than any descriptive word can convey, but the peace provided by our Savior has shone through our darkness and continually lights the way.

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul. Psalm 143:8

I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you. Psalm 32:8

Bringing up boys

2011-12-07T06:00:00.000-05:00

{Embracing Boyhood}

Little Boys

author unknown

Little boys come in all shapes and sizes,
Shy and adventurous, full of surprises,
With misshapen halos and mischievous grins,
Small dirty faces, and sweet, sticky chins.

They'll keep you so busy, and yet all the while
Nothing can brighten the world like their smile.
And no greater treasure has brought homes more joy
Than a curious, active, and lovable boy!

Bumps and bruises are a natural result of rough-and-tumble play...

A beloved baseball bat that is swung a hundred times a day...

Don't forget the skinned knees and muddy jeans that mark rambunctious play...

And yet there is always room for sweet snuggles and cuddles with loved ones who are here to stay.

That Little Boy of Mine

written by Robert Southey

Two arms that hold me tight
Two eyes that shine so bright
Two lips that kiss goodnight
That little boy of mine

No one will ever know just what his coming has meant
Because I love him so - he's something heaven has sent

He's all the world to me
He climbs upon my knee
To me he'll always be
That little boy of mine

More than tremors

2011-12-06T07:30:00.000-05:00

He was used to working with his hands; hands that were calloused by years of dedication to their trade. The work performed by those hands produced such quality that it attracted the attention of the military (for specialty contracted projects) and the respect of those who worked around him. He was good at what he did. For many years his hands had been the tool that provided for his family.

But now those hands were beginning to shake.

My Uncle Paul (my father's brother) was officially diagnosed with Parkinson's disease in 2006. He wasn't surprised. His father had lived many years with the same diagnosis. The symptoms came on gradually but steadily.

First the shaking was slight enough that he could figure out ways to complete his specialty welding tasks. But over time the shaking grew too severe to accomplish the intricate projects assigned to him. He had no choice but to relinquish his welder and walk away from his job years earlier than planned.

He began to take medicine for Parkinson's. But something was off. He was feeling worse. Thinking it was because of dosage issues, my Uncle Paul took himself off of all medication and, interestingly, felt much better. This greatly puzzled his doctor who began to dig deeper for clues.

Then came my son's diagnosis of Fragile X Syndrome in February 2011. As I began to investigate this syndrome that would forever change the course of my family, I uncovered facts concerning carriers. I read about a syndrome Fragile X carriers can have - Fragile X-associated tremor/ataxia syndrome (FXTAS). The symptoms matched my uncle's symptoms.

Fragile X–associated tremor/ataxia syndrome (FXTAS) is an “adult onset” neurodegenerative disorder, usually affecting males over 50 years of age. Females comprise only a small part of the FXTAS population, and their symptoms tend to be less severe. FXTAS affects the neurologic system and progresses at varying rates in different individuals. (FXTAS.org)

Symptoms in males (provided by FXTAS.org):

Both the type and severity of FXTAS symptoms vary among individuals. Some will have multiple symptoms that progress rapidly, others few symptoms that remain mild over many years. The most common symptoms in males are:

“Intention” or “action” tremor (trembling hands that occur when one reaches for something or is otherwise using one’s hands. The tremor is not as noticeable at rest).
Balance problems, called “ataxia,” which might result in occasional or frequent falls or the need for the person to hold on to a railing or cane.
“Parkinsonism,” which can include general shaking of body parts, muscle rigidity, a shuffling gait and slowed speech.
Cognitive/intellectual decline, including short-term memory loss, loss of math or spelling skills, difficulty making decisions, and other intellectual functions.
Numbness or burning of the hands and feet (neuropathy).
Low blood pressure (orthostatic hypotension).
Personality or mood changes, which might include increased irritability, outbursts of anger, and inappropriate or impulsive behavior not typical of or consistent with the person’s previous personality.
Difficulty with organizing, planning, anticipating, and carrying out of everyday life tasks and activities (“executive function skills”).
Difficulty learning new tasks.
In advanced cases, loss of bowel or bladder control, impotence (autonomic dysfunction).
Specific findings on a brain MRI called “increased signal intensity in the middle cerebellar peduncles (MCP) sign”. These findings are evident to neuroradiologists (radiologists with additional expertise in neurological conditions).
Click here to see video of patient attempt at drawing a spiral; left and right hands.
Click here to see video showing balance and gait problems

Symptoms in Females (provided by FXTAS.org):

Females can experience the same neurological symptoms as males, but almost always with less severity. Most affected women have some degree of tremor and/or ataxia. While the psychiatric and mood disorders are also less frequent in females, they are at higher risk for anxiety and depression in general. Additional symptoms affecting some females include:

Fibromyalgia and/or generalized muscle pain
Thyroid disorders, usually hypothyroidism
Seizure disorders

I contacted my father who passed along the information. In March 2011 my uncle was tested for the Fragile X premutation and the results came back positive.

Uncle Paul is taking things in stride. He has always been an upbeat man, strong in his faith, and is handling this as well as anyone can. He continues to stay active by doing some small farming. He currently is on medication for a couple symptoms (restless leg syndrome and stiffness/arthritis) and has an appointment in March 2012 to re-evaluate medication options.

All photos in this post were provided by the family

For more information on Fragile X associated tremor/ataxia syndrome (FXTAS) please visit FXTAS.org.

For more information on Fragile X Premutation, please read the carrier {Fragile X Premutation}.

The stuff of memories

2011-12-03T03:47:00.001-05:00

I hear laughter in the next room and I quietly sneak to the doorway, hoping they had not heard me. I am not ready to reveal my presence. I watch my two sons play nicely together - an occasion not out of the ordinary but still a treasure.

Today has been a good day, full of sweet memories to savor and store away. No doubt there will be day when I will need to draw from the cistern of joyful memories to help me cope; a day when the symptoms of Fragile X Syndrome wage a relentless battle on my older son, Grant.

I continue to silently watch as my younger son, Wesley, moves from his place of play to retrieve a toy Grant had dropped. Knowing it is one of his favorites, Wesley returns the toy to his brother's hands.

That is my Wesley... so thoughtful and caring. I pray daily that he will continue to have a tender heart for his brother and wisdom to shoulder the responsibility that comes with having a sibling with special needs.

I am about to step into the scene to praise Wesley but stop short.

The scene continues to unfold as Grant smiles with gratitude over the returned toy then kisses Wesley softly on head. At three years of age, Grant cannot yet talk but he still finds a way to show his love.

That is my Grant... so full of joy and affection for others. His dimpled smile can light up the darkest places of my heart.

My mind is quickly snapped-out of its daydreaming state as I hear the two boys wrestling on the floor. The time for me to step in has arrived.

Ahh, yes. Brothers.

a time for everything...

2011-11-30T07:00:00.000-05:00

I found myself caught up in the hustle and bustle of the weekend and realized I hadn't been taking pictures of our time together with Aaron's family. So I grabbed the camera and captured some moments while the boys were playing outside.

The Thanksgiving holiday weekend hosted beautiful weather - crisp, sunny mornings followed by mild afternoons. What perfect weather for playing outdoors!

Grant associates Grandma and Grandpa Mayes' house with three things: Grandma and Grandpa (of course), Henry the dog, and basketball. It takes about fifteen seconds for him to exit the car, locate the ball, and direct the closest adult to "shoot".

Our beloved Henry is getting up there in years. Yet he still tolerates a lot when the boys come to visit.

. . . . . . . . . .

Since I mentioned Henry, I have to sneak in a couple pictures of our own sweet "Sadie-kitty". She is so patient with the boys - even when she is getting her tail pulled. Both boys have learned the valuable lesson of "being gentle" with her.

. . . . . . . . . .

The weekend left a fingerprint of happy exhaustion.

The cold weather has finally been ushered in and the leaves have begun their final act of descent. The bare trees announce that it is time to prepare for winter. I reluctantly concede. I feel as if my heart has already been laying dormant in mourning and I am ready for spring. I seek a new chapter but I cannot force it. Just like the seasons, it will come. I know it will. I cannot yet see the light at the end of the tunnel but I can faintly feel its warmth.

...All in good time.

For everything there is a season, and a time for every matter under heaven:
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace. Ecclesiastes 3:1-8

Unwrapping Christmas Joy

2011-11-28T10:10:00.000-05:00

{Meditate on the Meaning}

It's amazing how a sight, smell, or sound can instantly transport a person back in time. One whiff of fresh-baked bread and I am in my mother's kitchen as a girl anticipating the first bite of homemade goodness.

Sunday afternoon, as I was unpacking Christmas decorations, I was reminded how heavy my heart was last year. It was as if I could feel the weight of my sadness all over again. I caught myself staring at the ornaments recounting my desperate emotions. With embarrassment I must admit that I didn't want anything to do with Christmas. Instead, I nursed my pain as I watched others joyfully experience the traditions that accompany the holiday - traditions my oldest son, because of his many symptoms, cannot handle.

I was angry that my life wasn't as I had planned it to be. And the holiday season seemed to escalate all my emotions. While my feelings of pain were valid, it didn't help that I focused only on my own situation and struggles and not on the purpose of the holiday. I will not let it happen again.

I want to celebrate the birth of the baby that marked the fulfillment of so many prophecies.

I want to rejoice in the very Word of God coming to earth to share the good news and save us.

So, this week I am going to mediate on the following scripture...

In the beginning was the Word, and the Word was with God, and the Word was God. He was in the beginning with God... And the Word became flesh and dwelt among us, and we have seen his glory, glory as of the only Son from the Father, full of grace and truth. John 1:1-2, 14

But you, O Bethlehem Ephrathah, who are too little to be among the clans of Judah, from you shall come forth for me one who is to be ruler in Israel, whose coming forth is from of old, from ancient days. Micah 5:2

For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Isaiah 9:6

Already, as I relive God's gift to me through those words, I feel my spirit lift.

{...full of grace and truth... ruler... Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace...}

Please join me as I rejoice over the promise of a Savior fulfilled.

Gratitude

2011-11-23T00:48:00.001-05:00

Gratitude has a new depth of meaning for me this Thanksgiving holiday.

I have discovered that it is both an action and a state of being.

     Gratitude is what protects my heart against the ugly bitterness that threatens to destroy me.

     It ushers me to a place of peace, hope, humility and joy.

     It turns my focus to the things I once considered little and reveals their beauty.

With renewed perspective I look around me and wonder, How can I not be grateful?!?

As I review the past few months, I choose to dwell on the good. The year has been heavy with heartache, loss, and immense strain... But to focus on that would be unjust for the year has also been rich in beauty and joy.

To my family who tirelessly supports us in every way imaginable... thank you.

To my friends who stand beside us and have shouldered my many tears... thank you.

To my husband who has cast aside his own dreams and works harder than anyone I know... thank you.

To the many who love Grant and patiently work with him... thank you.

To my Savior who lovingly leads the way... thank you.

Therefore, as you received Christ Jesus the Lord, so walk in him, rooted and built up in him and established in the faith, just as you were taught, abounding in thanksgiving. Colossians 2:6-7

Just me

2011-11-18T14:45:00.001-05:00

I had another eye-opening/self-realization/humbling experience this week.

It was kind of like the time I caught a reflection of myself in the polished elevator door while leaving the doctor's office a couple months ago. At first glance, everything appeared to be in place - hair, clothes, makeup... wait... I gasped at something I saw and ran to my car. I yanked the rear-view mirror towards myself and took a closer look at my face.

Again I gasped in horror. Oh dear. I felt my whole face turn hot with embarrassment.

That morning, while I had been hastily getting ready for the appointment, I smeared some extra concealer under my eyes, attempting to hide the effects of sleep deprivation. But, for some reason, I had forgotten the important step of dabbing the concealer into my skin.

So, for 30 plus minutes I talked with my son's neurologist about some very important things while patches of white were plastered under my eyes (think football players with those black patches they put under their eyes to protect them from the sun - only with cream-colored patches... that was me). Lovely. (Though, I'm guessing the doctor and everyone else I came in contact with never noticed the dark circles under my eyes. I suppose you could say "mission accomplished" in that regard.)

Earlier this week some special attention was brought to a blog post I had written and I was elated to say the least. A steady stream of e-mails related to the post began to drop into my in-box. I was giddy as I began to open and read them. Soon my mood became more serious as I digested one heart-felt testimony after another. Each one touched me so intensely that I had to take several emotional breaks.

These sincere people were sharing their personal stories with me. They related with me, encouraged me, applauded me, and others shared their pain with me. I began to feel embarrassed.

What if they could see the real me? The me that still struggles with fear and fights feelings of doubt.

The experience was like taking another look in the mirror and seeing, once again, I am full of flaws. I am inadequate. I am not worthy.

Then God hit me with a response that quickly put me in my place.

No, you aren't worthy... but I am. This is for My glory - remember?

Of course. Seriously, when will I learn that this is not about me?!

Instead it's about my patient and faithful God who uses the many {just me}s in this world for His glory.

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 2 Corinthians 4:7

...Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9

the whisper of a dandelion

2011-11-16T07:00:00.000-05:00

Recently I prayed that God would open my eyes to see the circumstances that surround me through His eyes.

... to see beauty and joy throughout the trials of this world.

A piece of me expected a great conversion. But just like Elijah {1 Kings 19}, I experienced God's glory in a way I didn't expect...

As my youngest son and I went for a walk, I was hoping to capture an image that would encompass beauty. I became increasingly frustrated with each snapshot I took - none of them held fast the thoughts I wanted to express.

Then my son stooped to pick a dandelion...

A weed we often despise and discard reminded me of the attention to detail God gives everything - in the mighty and in the least of these.

It was a reminder to take notice and enjoy the little things God provides me every day.

You are on the path of My choosing. There is no randomness about your life. Here and Now comprise the coordinates of your daily life. Most people let moments slip through their fingers, half-lived. They avoid the present by worrying about the future or longing for a better time and place. They forget that they are creatures who are subject to the limitations of time and space. They forget their Creator, who walks with them only in the present.

{Excerpt from Jesus Calling by Sarah Young, page 128}

You will seek me and find me, when you seek me with all your heart. Jeremiah 29:13

And behold, the Lord passed by, and great and strong wind tore the mountains and broke in pieces the rocks before the Lord, but the Lord was not in the wind. And after the wind an earthquake, but the Lord And after the earthquake a fire, but the Lord was not in the fire. And after the fire the sound of a low whisper. And when Elijah heard it, he wrapped his face in his cloak and went out and stood at the entrance of the cave. And behold, there came a voice to him and said, “What are you doing here, Elijah?” 1 Kings 19:11-13