Friday, December 27, 2013

Quotable Quotes

I often worry about my kids becoming ungrateful, or indifferent to the blessings of Christmas.  Thankfully, that situation has yet to arise, and they are still captivated by the magic of receiving packages full of surprises.  Clayton is always glad to receive, but he isn't able to articulate his excitement quite like Jackson.  Jackson's words were definitely some that I don't want to forget.
When opening his long awaited red yo-yo:  "YEEEEESSS!  This is the BEST DAY EVER!!"

(Take note of gangsta Clayton in the background . . . )  :)

As he lay in bed facing Clayton (just after I removed his new glasses with windshield wipers), Clayton sneezed.  As I helped Clayton with a kleenex, Jackson looked at me matter-of-factly:  "See, Momma, that's why I needed to wear my glasses with the windshield wipers."  

Christmas morning:
"It just keeps getting better and better, Momma!"  

"Santa has cool stuff."

"This is the BEST DAY EVER!!!"

"This is the WORST. DAY. EVER."  (Why, Jackson?)  "Because we have to wait for everything to charge."  :(

And as we began another game on the new WiiU, "Let's do this thing!"

(I guess he considers himself an old pro after just 24 hours of Wii).  

I'm sure there are some that I'm forgetting, but one thing's for sure--Jackson was one happy boy this Christmas, and he couldn't help but infect others with the excitement of opening gifts packaged especially for him.  

Monday, December 16, 2013

A Brother's Questions

I can remember when I found out I was pregnant with Jackson.  One of my main struggles was that he would never know his brother.  That he would never realize what an impact Shawn had made on our lives.  I was so wrong.


Daily this child speaks of his brother.  It's not as if I discuss Shawn that much, it's just that when I do speak of him, I suppose it makes a giant impact on Jackson's heart.  So many questions that he is trying to find answers to.  And even in his own way, Jackson mourns the loss of his older brother.  

Where is my brother?

Is Shawn in Heaven?

Can Shawn come down and play with me?

Will I be able to play with Shawn in Heaven?

When is Shawn going to come down?

I want Shawn to come down from Heaven!

How old is Shawn?  

But how old is he in Heaven?  

We will see Shawn in Heaven?

When can we go to Heaven?

I admit that these questions leave me a little baffled at times.  I certainly don't know all of the ins and outs of life in Heaven and how long we will all live here on earth before joining Shawn in Heaven.  

I suppose this talk of his brother who died has also influenced Jackson's proximity to death itself.  He is very concerned that Brian or I will die without him.  :(  I hate that his little four year old mind wrestles with these worries.  

I find strange comfort in some other conversations that we've had about Shawn . . . Jackson has told us repeatedly about being "in the boat with Shawn" and that Shawn wanted to hold him.  He has also insisted in other instances that "Shawn wants to hold me!"  I have no idea where this boat incident comes from (a dream?), but I find comfort in knowing that Jackson has somehow figured out that even from Heaven, his big brother Shawn loves him.  Loves him and wants to hold him.  

Friday, November 22, 2013

No One is Immune

Yesterday, Clayton had dental work done in the operating room--a routine procedure for him.  Routine except that for the first time in ten years, Clayton had to see a dentist other than Dr. Koonce, who happens to be The Best Pediatric Dentist Ever.  He is on medical leave, and we are missing his sweet spirit; and this momma was a bit anxious about dealing with a new doc.  My fears were unfounded, as it turned out, because the new Dr. Dentist was very pleasant and great to work with.  
He officially won our hearts when he got TEARY-EYED while simply recounting his report from the procedure.  He had only known Clayton for a couple of hours, and even he wasn't immune to how special this little boy is.  He eventually cut our conversation short because he got misty eyed a second time talking about how taking care of patients like Clayton helps him sleep well at night. :)  It seems Clayton impacted yet another life, simply by being Clayton.

Wednesday, October 09, 2013

Evidence of Growth

I think I've mentioned before that it hasn't always been roses for Brian and me.  We've had plenty of dark days in our marriage, but our commitment has kept us going.  Our foundation of faith carried us through even when we felt like running far, far away.  It has been with those dark days that our spiritual growth has occurred--kind of a "behind the scenes" growth that you don't even really know is happening.  And after I got off the phone with Brian yesterday, I just couldn't help but praise the Lord in amazement.  I had called him needing reassurance and prayer for something and I ended up getting one of the best spiritual pep talks ever!  I didn't have to call my preacher.  Didn't have to call a Christian mentor.  Didn't have to call one of the "church ladies."  I simply called my husband.  My life partner.  The one created especially for me by the Lord Himself.  

This change didn't happen by accident.  We have intentionally immersed ourselves in a family of believers who have continually uplifted and prayed for us.  We've done the "Christian thing" even when the last thing we felt was "Christ-like."  We have intentionally chosen to leave some things that we loved behind, simply because they weren't God-honoring or His will for our lives.  Moreover, God is still pruning us as individuals and as a partnership.    

We are by no means perfect.  There is still A LOT of refining still to take place, but thank God He has brought us this far!  I can't wait to see what the next ten years will bring in our relationship--we've come a long way and we're ready to travel even further.   

Wednesday, September 25, 2013

He Can't Help Himself

During VBS, Jackson's inner-drummer couldn't be contained.  So while all the other kids did the motions to the songs, Jackson drummed.  

Friday, September 20, 2013

Read the Chart

One of the first things we do every single time Clayton checks into the hospital is tell every new attending doc, resident, med student, and nurse his medical history.  Fortunately, I have most of this written down in a form that was put together for us by the Medical Home Clinic we attend.  When I'm particularly tired of going over the details of the last ten years, I usually just hand over that set of papers for them to read themselves.  

I understand that Clayton isn't the only patient at ACH.  I understand that doctors and nurses can't remember everyone who comes across their path, along with the medical history of that child.  But for the life of me, I DO NOT understand why they can't take even a small glimpse at his history in the chart before they visit us for the initial time.  WHY is it all typed into the computer if no one ever takes the time to read it?  My main issue comes when we show up on the floor and we are treated as if we've never been to the hospital before.  HELLO?  My son is in a wheelchair.  Surely you can see that he has a history of medical issues?  And even if you couldn't see that, you would know it with a simple glance at his past medical history, which is there for all to see when you pull up his name in the computer.  

Instead we have things like this happen (after we've been in-patient for more than 12 hours):  resident comes in and asks if he is eating and drinking as normal.  READ THE CHART.  Of course he is eating and drinking as normal, because he is tube fed and I am still feeding him as usual.  :/  

Has he had any seizures or episodes?  READ THE CHART.  I've told everyone we've spoken to that he doesn't normally have seizures that we can see, we are here to see if we are missing something while he is asleep.  Of course we won't even know the answer to that now because the doc insisted on ordering that he be checked on each hour throughout the night, which meant that he DIDN'T sleep.  Which pretty much cancels out any possible results we would have gotten from the EEG. 

Nurse comes in (a nurse that has cared for Clayton many times in the past, mind you):  I've got his medication.  Oh, I guess I need a slip-tip for his g-tube . . . (staring at Clayton like a monkey staring at a math problem).  Again, how is this news that he has a g-tube when you have cared for Clayton multiple times and you have the chart right in front of you??  

I've discussed this issue with some of the doctors that we deal with the most, and they agree that for "frequent fliers" there are several breakdowns in communication.  Almost all of the medical staff in the NICU and PICU go above and beyond in making parents feel "at home" as much as it can be possible. They are the best at recognizing the journey families with chronically ill children are on.  But for some reason, that feeling does not exist on the floor.  This was why the "Medical Home Clinic" was started in the first place, but that was over five years ago, and I haven't seen that much improvement in streamlined care for the frequent fliers.  

I admit that my irritability level goes way up just being at the hospital, but it would be nice if some of the medical staff would go out of their way to read Clayton's history and recognize a family that has been down this road a bazillion times, and treat us as such. 

Rant over.  :/ 

Wednesday, August 28, 2013

Why I Still Go to the Cemetery

When Shawn died, I knew that his soul was immediately in the presence of our God.  I instinctively knew that his body had simply been an earthly vessel that was temporary to this life.

But that didn't stop me from loving that physical body . . . one of the three little bodies that is a unique combination of the love that Brian and I share.  
Even in the beginning of my grief, I never made it a habit to visit the cemetery often.  The intellectual part of my being couldn't rationalize spending much of any time at his graveside, and my faith still holds that he is with the Father.

But then there are those days.  Those days when the momma in me needs to mother him.  Needs to do something for him!  Just as I do the small things for Clayton and Jackson, the mother in me craves to do those tasks for Shawn.   But there are no tasks to be done.

No shirt collar to be turned down.  

No mouth to be wiped.  

No boo-boo to kiss.  

No high-five to be given after a job well done.  

No "I love you's" passed in conversation.  

Just nothing.  

Simply put, he doesn't need me where he is at.  He is with the Almighty Caretaker of the universe!

But his momma needs him.  Needs to care for him in the physical ways that mommas do.  I was so desperate in the early years.  I literally pictured myself digging the grave up just so I could hold and touch him one last time.  Just one last "let me make sure you're okay before I leave you on your own" moment. 

I'm certainly past those desperate moments these days, but my idle hands still must do.

For eight years, my Grandmother faithfully renewed the flowers on Shawn's grave.  I asked her in the very beginning to be my stand in because emotionally I simply couldn't handle the task. However, a couple of years ago I felt like I was finally ready to take on the job of keeping his flowers refreshed.  I cried the whole time I was in Hobby Lobby buying the flowers.  But once I was done, I felt a renewed sense of spirit.  I polished his marker and cleaned up the neglected ones around it.  And every few months, I repeat the same little routine.  A time when I can reflect while I let my hands do a mother's work.  

Saturday, August 10, 2013


Some people see miracles happen instantaneously.  We've been lucky enough to watch a miracle slowly unfold daily before our very eyes.  I distinctly remember at least three occasions when doctors sat us down for "the talk" about Clayton.  "He's getting worse."  "This is as bad as we've seen."  "There's nothing else we can do for him."  "You need to prepare yourself."  We needed to prepare ourselves alright.  Prepare ourselves for a life with an extraordinary little boy who is a daily witness to God's power in each of us.  

For ten years, he has defied the odds and blossomed in spite of his condition and diagnoses.  
And to that, I say "Praise God!," and a very Happy Birthday to Clayton!  












 But those who hope in the Lord
    will renew their strength.  They will soar on wings like eagles;    they will run and not grow weary,    they will walk and not be faint.
Is. 40:31

Friday, July 26, 2013

A Week in the Life of a Boy

Jackson's had a rough week.  It started last Thursday when he was in timeout and this BB like object "jumped from the carpet and into his ear."  It was a miracle to say the least.  A miracle that warranted a visit to the doctor to get it removed.  

Then on Wednesday, after been told countless times to stop running in the house, he ran smack dab into the door facing (easy to do when you're wearing a hat over your eyes).  Within minutes of the collision, he had a knot on his forehead that popped out at least an inch and a half.  
And then to top it all off, that very same night, he got what I hope is his first and last motorcycle burn.  I'm sure you're all of aware of that elusive muffler burn that happens so often when riding (I've got a scar myself to show my familiarity with it).   
Fortunately, he bounces back quickly and doesn't let crazy stuff like this get him down.  UNfortunately, I see a lot more of these incidents in our future . . . these stories are reminiscent of stories I've heard from Brian's childhood, so I get the feeling we have a lot more to come.

Friday, July 19, 2013

Photo Friday

Since I haven't shared Jackson's birthday photos, I figured better late than never.  I know there are some of you out there that don't care when I post them, as long as you get to see this precious little face. :)

I had a little bit of mom guilt because I accidentally bought the trick candles.  He was more than a little frustrated that he couldn't get those candles out!

The present for both Jackson and for our FAMILY:  quieter drums!  He had a real set of drums that almost drove us batty--we are thankful that we have gained a little bit of our sanity back with the volume control on these electronic drums!
 Kids had a blast!
 The birthday boy taking his turn driving:
Cutest little four year old ever!

Monday, July 15, 2013

When Grief Brings Silence

There comes a point in extreme crisis when the silence becomes deafening.  Clayton was still in the NICU when that moment came for me.  I sat in the ACH cafeteria watching the interstate traffic, and I realized that I had absolutely nothing to say to my God.  And the silence reverberating back was just as poignant.  It was like this big black hole between the two of us, and I couldn't step forward for fear of falling into it.  It was a scary realization.   I didn't know how to deal with my anger and grief over Shawn's death.  I didn't know how to pray for Clayton.  I was literally stuck in this chasm of wanting to pray, but not having anything to say to the Father.  Day after day, I repeated over and over, "Lord, you know my heart."  I depended on others to intercede more specifically on our behalf.  I simply didn't have the words to pray.

 ". . . for I know that through your prayers and God’s provision of the Spirit of Jesus Christ what has happened to me will turn out for my deliverance."  (Philippians 1:19)

What of this "black hole?"  Is it a good thing to have such a silence between us and God?  After years of reflection, I think it was indeed a necessary part of my grieving.  I heard a song just this last week with the lyric, "God is big enough for the whys."  And you know what?  He's big enough for the silence as well!  He is the Almighty; but he is also Abba . . . Father.   This is the same Father who watched as His newly created man chose disobedience.  The Father who watched time and again as His people chose to depart from Him.  The Father who watched His Son die horrifically on a cross. . .

He is truly "acquainted with grief!"  (Isaiah 53:3)

If anyone is familiar with A Change in Plans, it is our Father in Heaven, whose entire plan for this world was wrecked by sin.  And as He watches us live out life after The Fall, I can't help but think He grieves anew each time one of His children is hurting.  This wasn't His plan--wasn't His design!  The resulting hurts of this world must grieve His heart!  "The Lord said, 'I have indeed seen the misery of my people in Egypt, I have heard them crying out . . . and I am concerned about their suffering.'" (Exodus 3:7)  Moreover, the God-Man Himself was grieved when His friend Lazarus died:  "When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled . . . Jesus wept . . ." (John 11:33-35)

I think it is because of this "acquaintance with grief" that the Father knew we would require a supernatural helper to speak on our behalf.   When we have no words for prayer, when we know not how to utter our needs, "the [Holy] Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.  And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will."  (Romans 8:26-27)  Because of this intercession, we can rest knowing the Father is still working for our good, even when we don't know how to express our need.  

For me, the silence was a time of renewing.  It was as if the Lord was sitting across the room from me, quietly waiting for me to join Him at His table once again.  The important key was that I didn't choose to get up and walk away from Him for good.  After months of silence, I began to slowly utter prayers of thanksgiving, and even prayers on behalf of others.  It was those small basic prayers that eventually led me back to a true conversation with God, a conversation that was deeper than ever before.  And almost ten years later, I have come full circle as I intercede in prayer for the needs of others.

These full circles?  That's the way the Lord works in our lives.  Nothing is without purpose.  Even a period of silence and heartache can yield a renewed hope and resolve.  A resolve to live for Him, and a resolve to bring others into His arms.  

Tuesday, July 02, 2013

Take Me to The King

I created this slideshow soon after our 2013 Prayer Encounter.  Our congregation's journey into corporate prayer has come full circle--our people are better for it, and we see God working in marvelous ways.  
Only at His feet can we find true comfort and rest.  I pray that you, dear blog reader, regularly seek Him out.  

Monday, July 01, 2013

In Which We Say Goodbye

Well, it's 11:30 on Sunday night and the last thing I need to be doing is blogging (although a few of you out there are probably glad to see some signs of life on the ole' blog).  I've got a photo session tomorrow, invoices to send, and photos to edit.  And yet here I sit, trying somehow to give voice to my thoughts on the day that is almost over.  And instead of voice, all I have is tears.   

Today was our pastor's last day at our church.  He has pastored our church for the last 17 years and pastored Brian and me for the last 12 of those.  Yes, pastors come and go from churches.  They move around in ministry and congregations survive, just as ours will.  But as any significant life change does, this day has me reflecting on years passed.  Under Pastor Tim's leadership, Brian and I have grown both deeper and wider in our spiritual walk.  And he has taught us that the "preacher" can also be your dear friend. 

My tears have flowed freely tonight.  Yes, it is because I will miss our teacher and our friends.  But mostly it is simply because my mind keeps going back to The Day My World Changed.  I keep going back to that horridly uncomfortable room we said goodbye to Shawn in.  There we sat with our dead baby, shocked with the magnitude of the situation.  A handful of friends and family came in and out as we tried to share his little body with our loved ones.  The last to come in was Pastor Tim.  He sat with us as we held our first born.  Funeral Talk.  Our Baby is Dead Talk.  Then slowly it moved to Anything Talk.  Anything to keep from having to get up and hand Shawn back to the nurse.  I remember Tim graciously took photos of the three of us.  A mother.  A father.  A baby.  Photos that will always be burned in my memory, as they embody every emotion I've ever felt as a human being.  You just never forget the person that is present for that moment in your life.  And while we've had countless joyous times with Tim and Jamie, my heart has been stuck in that little room for most of the day.  

Tim and Jamie have been present during so many of our trials, tribulations, and celebrations.  A new chapter begins for us as we learn to navigate these moments without our friends physically at our side.  We will miss their words of encouragement and bent ears, but we are thankful they will still be by our sides in spirit as we travel on in this journey called life.  

Monday, June 03, 2013

Four Years Old

Happy Birthday to my baby, Sweet Jackson.
Truth be told, he isn't quite the baby anymore . . . he pretty much wants to do most things on his own and his own way; but when he wakes in the morning, and it's just us two, I love hearing the words, "Momma, I want you to hold me."  So we snuggle for a bit each morning before we get up to greet the day.  :)  I'm hoping he won't grow out of the habit of needing his momma to hold him anytime soon.  

Tuesday, May 28, 2013

I'm Sensing a Pattern

2006:  Tuesday after Memorial Day.  Clayton had his first seizure.  It was one of the scariest moments of my life.  He had another one a couple of months after that that scared us just as equally, if not more.  It was the second one that officially put him in the "has seizures" category.

2010:  Friday before Memorial Day.  (My birthday)  Clayton woke in the night with seizure activity.  Doctors treated it as a shunt malfunction; but knowing what we know now, and the debacle that unfolded after his shunt was "fixed," it was most likely a seizure just like those in 2006.

2013:  Friday before Memorial Day.  Clayton fell asleep around 10:30/10:40.  Jackson and I were both laying in the bed with him.  Sometime before or around 11:00, Clayton's left arm shot up and I immediately started asking him if he was alright.  When I got no response I realized something was very wrong.  I'm pretty sure I knocked a sleeping Jackson out of the bed running to get Brian, who was across the house.  :(  By the time we got the lights on and figured out what was happening, Clayton was in a full tonic-clonic seizure.  It waned for just a bit as the firefighters arrived, and Clayton was able to slightly respond to them by nodding his head in response to their questions and directives.  It only lasted a couple of minutes though, as he began seizing again as we all watched.  It wasn't quite as physically violent the second time, but still just as disturbing.  Watching his eyes become completely lifeless as they darted back and forth was almost too much to take.  

Clayton's seizure continued for almost two more hours.  After two doses of Valium, two doses of Ativan, and a thousand extra milligrams of his regular seizure medicine, he finally started coming out of it, just in time to fight the nurses as they started a second IV.  I hated that he was fighting them (for their sake), but boy was I glad to see that personality emerging under the fog that he was in!

We had a great experience in the ER (is that an oxymoron?), and the nurses and doctors we dealt with were extremely diligent in their care of Clayton and on explaining more in-depth the seizure phenomenon.  (Since it looks as if, indeed, Clayton does have a full blown seizure disorder, given his history, we were full of questions).

As of yesterday afternoon, Clayton was finally starting to smile just a bit more often than we had seen the whole weekend.  He is still pretty drained, and although he thinks he wants to do something, once he gets into it, he realizes his body just doesn't have the strength to carry through.  I'm hoping another day off from therapy today will give him the extra rest he needs to get back into the swing of things.

And in the meantime, what the heck does he have against Memorial Day weekend?!  It's almost cyclical the way these have happened . . .

2006:  2 3/4 years after brain injury
2010:  4 years since last seizure
2013:   3 years since last seizure

It's almost as if his growth pattern includes having a major seizure as a rite of passage into the next phase?  But then again, I wonder if we've missed any since he has begun sleeping more and more often through the night by himself.  At any rate, I'm not much on coincidences, and you can guarantee that this time next year, I'll be on guard more than ever!!

Friday, May 17, 2013

Baseball Season

Clayton played his first "game" with the Conway Braves last week.  I use the term "game" loosely because to be honest, it was anything but that.  :(  I suppose we were spoiled by The Miracle League with their more organized program!  (The only reason we decided to play with the Braves is to avoid the drive to Little Rock and to play with other kids Clayton sees daily).  

Clayton spent most of his time worrying about entertaining the crowd.  He couldn't run the bases without turning around every few feet and waving or yelling to someone (my Grandmother in particular).    And when he came into home, he wouldn't move out the way!  He wanted to sit there and wave and smile at the crowd!

There were some big differences between the Miracle League and the Braves.  With the Miracle League, the kids play an actual game with multiple innings.  Each kid is given a chance to hit from several pitched balls, and the parents are told to stay in the stands and watch the show.  With the Braves, we just kind of showed up, walked onto the field, and then they started letting the kids bat.  Clayton's "team" batted twice through, and then moved to the field for the other team's turn to bat.  After that it was over.  There were parents and siblings wandering around the field the whole time, so it was a bit chaotic in my mind.  Clayton had a blast, so it really shouldn't matter, but this mom likes a little organization in her extra-curricular activities.  :)  Not to mention, it would give the kids a better idea of how an actual game runs.  
Clayton's helper was super--He chased Clayton all over the field, trying to get him to go the right direction!

It doesn't matter how unorganized things are, nothing beats seeing Clayton "running" home, even if he did take several detours to get there!

Wednesday, May 08, 2013

Gymnast [Almost]

Jackson has been doing gymnastics for about a year and a half now.  It's no surprise that he's naturally good at it, given his Daddy's gym history;  however, I wasn't expecting him to take it so seriously.  For the last year, he has been in a preschool class, and as most preschool activities go, they do a lot of kiddie interaction to make it fun.  That fun includes a song and "dancing" every class.  Jackson will have absolutely nothing to do with the dancing.  He basically sits in the corner until the music is over and then he is up and at 'em when the serious gymnastics starts at the different stations.  The one day his teacher finally talked him into getting up and participating, he had some freak fall and fell and busted his lip, which pretty much guaranteed he was definitely not going to try it again!

At any rate, because of his serious nature about the whole thing, and because his upper body strength is so good, his teachers say that once he gets his cartwheel down (which, shall we say, needs A LOT of work!), he can move up to the invitational class, which means he can finally move past the kiddie dancing and songs which he cares nothing about anyway! 

Monday, April 29, 2013

His Happy Place

We all know that Clayton's life is a miracle.  But here's the great thing--Clayton knows it too!  He has heard us testify to God's work in his body, and God's work in our lives.  Moreover, I'll go so far to say that I think he feels it as well.  There is no denying the Holy Spirit abides in and around him.  Everywhere we go, people are caught up in his infectious happiness and genuine love for life.  The smile on his face is truly contagious.  And with this sweet spirit surrounding him,  it's no wonder that his favorite place is in God's house!  

In general, Clayton isn't very particular about which church we go to, just as long as we are going to a church.  (Every day I am asked "church?" at least a dozen times).  But like most of us, Clayton thrives the most on his home turf.  Our church has become Clayton's happy place:  when there, he is in his element.  And since the arrival of his power chair, his "social life" at church has literally blossomed.  In fact, I can't remember the last time he sat with Brian and me, or my parents for that matter!  Most services, he just sets out on his own once we arrive (he parks himself at the door to greet people first thing), and then he tracks down his favorite people to sit with as the service begins. (Notice the required hand holding for said favorite person in middle photo below).  

You can just sense the freedom he feels in his power chair . . . if people are standing, he raises his chair up so that he is "standing" as well (see first set of photos).  And if there is an altar call of any type, the first thing you hear is the beep of his chair being turned on, followed by Clayton making his way to the front.  
He often asks the people around him to "pray for me" or "pray for {insert name of person on his mind}".  But as of late, I think he is finding his niche as a budding prayer warrior!  He is seeking others out at the altar, and being quieter (not near as many "pray for's").  Maybe he is contemplating in his own mind what needs to be prayed for and having those conversations with God himself! 
 His sixth sense about what is going on around him is uncanny.  There isn't a doubt in my mind that he has had lots of dialogue with God over the years . . . maybe now he not only speaks on his own behalf, but for others as well.    

Friday, April 26, 2013

Employee of the Month

Well, yesterday's post was just a hint of what was to come in today's post . . . This past Tuesday was Clayton's latest venture in the performing arts.  As usual, he kept us entertained!

This semester's play was based on the television show "Undercover Boss."  The star of the show was a senior this year, and this play was his baby and creation.  Clayton was a part of the Customer Service team and was deemed "The Employee of the Month."  His first line was supposed to be him introducing himself, but he ended up saying "my tooth hurts."  And during the last scene, he just plain did his own thing!

I've pieced together his parts in the play:

Haley was his helper this year, and she should have been awarded a medal for how well she handled Clayton's random talk and driving!  She was the master at improvisation and did a fantastic job helping Clayton.  :)

It's definitely always an adventure with the ACTS, Jr. crew!!!

Thursday, April 25, 2013


For the one or two blog readers I still have out there, I promise new blog material is coming . . . here is a preview of what one post might include:  
Don't abandon me yet, I have lots on my mind and a ton of photos to share . . . the trick is finding the time to write it all out!

Thursday, March 21, 2013

Carry Over

Jackson is like any little brother.  He looks up to and wants to be like Clayton.  I love this about him.  He sees no disability, he just sees an older brother that he wants to emulate.  Most of the time, these things aren't an issue.  For example, at a birthday party with horses, he had to ride the horse that Clayton usually rides during lessons and had to ride with Clayton's teachers, even though he is plenty capable of riding alone.  I wish he would have done it by himself, but letting him ride like Clayton wasn't a big deal, so why not let him do like his big brother?  

But issues are developing from this little pattern.

Eating.  If we are all eating together, Jackson usually balks at eating.  I used to chalk it up to his three year old hard head, and maybe that's half of it.  The other half is "Clayton's not eating."  He has given me this excuse on more than one occasion, and I've also noticed that if we are eating without Clayton, he eats much better.  He is a smart kid, so I've explained multiple times why Clayton isn't eating and that someday he will. Not long after one of these conversations, Jackson got busy trying to hook Clayton's feeding tube up to his own belly button.  :/  

Walking.  If we are out and about, Jackson can rarely walk because his "legs hurt."  I've always attributed this up to a whiney three year old.  And most of it probably is.  But now he has decided he can't get out of the car on his own anymore.  He sees Brian and me carry Clayton in and out of the house each time, and now he has decided he can't get out without one of us carrying him.  Of course, we do our best not to encourage it and many times I've just walked in the house and left him in the van to show him I'm not going to carry him everywhere, but I can see that he wants that little bit of extra attention Clayton is getting--again, I've explained to him that Clayton would walk in a heartbeat if he could . . . it works in the moment and gets him out of the van, but the next time out, we have to go through the whole thing again. 

The "momma-waits-on-me-hand-and-foot" attitude.  I mentioned a while back that when Clayton calls, we come running.  This has come from years of him being immobile and the fact that he simply can't come to us, so we always come to him.  And we almost always bring what he requests.  This is changing to some extent with Clayton using the power chair, but he isn't the best driver in the world and sometimes it's just best for us to cover the ground instead of him.  :)  I guess Jackson has watched this for three and a half years and decided that this is the way the world works.  He will sit in one spot and call, call, and then yell for me to come running, instead of just walking through the house to find me.  "MOMMAAAAA!!!!"  His need is usually very minor and/or he just wanted to tell/ask me something.  I do my best to keep from reinforcing it, but every time I help Clayton, I do it again.  I don't want him to feel like I do more for Clayton than I do for him, but to a three year old, it probably looks like it.

I don't think there is a real answer except to keep explaining the differences to him, but in the meantime, I'm pretty much tired of him expecting the royal treatment as we all do his bidding!

Friday, February 22, 2013

In Motion

I always share plenty of still images from the events in our lives, but I'm doing my best to capture more video these days.  There's nothing like looking back on your babies in actual motion and voice to take you back to that very moment.  I didn't do a lot of video at the concert the other night, but I did capture just a snippet of Clayton as "Shoutin' Time" started and just before Dean came down to sing with him.  You can see how much Clayton enjoys the music by watching this short clip.  I only wish he had been singing along as well so you could hear his sweet voice!

Monday, February 18, 2013

The Hoppers Come to Town

Clayton finally got to cash in on his gift from Santa Claus by attending a concert by the well-known southern gospel group, The Hoppers.  He is a huge fan of the whole family, but especially of Kim.  Unfortunately, she was sick and on doctor-ordered bed rest.  Clayton was a bit disappointed when I told him, but he was happy to see another of his favorites, Taranda Green, filling in.    
OF COURSE, Clayton had to check out the bus before we ever went in.  When I told him whose bus it was, he tensed up and couldn't even drive his chair it made him so nervous!  It's funny watching him enter this stage of being shy and getting embarrassed.  I hate it for him, but at the same time love it because it's a "normal" childhood thing that most kids go through.  We love seeing signs of "normal" around here!

The music was absolutely fantastic and I'm always amazed at the energy and spirit that these folks we watch pour into each and every show.  Their music and voices are definitely anointed, and some of their songs give me chills each and every time I hear them.  
Clayton was very embarrassed when meeting Ms. Connie, but he was excited about the DVD that Dean had given him!
Clayton enjoyed all of the music, but Dean coming down to sing "Shoutin' Time" with him was by far the highlight of the night.  Clayton was just about to jump out of his chair he was so excited!  He was so emotional that the poor child eventually started crying!  I don't think he knew what to do with himself, he was so happy.  :)  

I'm thinking these small concerts in churches that southern gospel artists do are definitely the way to go for Clayton.  We've now had two great experiences in these venues and I'm thinking the more intimate atmosphere is perfect for Clayton.  

Can't wait to see who's coming to town next.  :)