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.  

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!!

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!

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! 

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.    

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!!!

Preview

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!