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!

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!

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!

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.  :)

Happy :Heart: Day!

I'm planning on spending the day with my main valentine and my two little valentines.  I hope you are with the people you love as well.  :)

In Which I Am Changing

I'm not recognizing myself lately.  It's like there's a whole new person under this same old skin.  It hit me today that the answers to prayers said long ago are finally coming to fruition.  I lived so long in anger, bitterness, and sadness, that I guess I got used to living in that place.  I got used to crying out in prayer for God to change me, with no real change in my heart to show for it.  

"Help me to be Christ-like in all things, dear Lord!", while reacting in rage to even the smallest of inconveniences or disagreements.

"Help me help others, God!", all the while barely able to get out of bed some mornings, weighed down by my own sadness.

"Help me have a forgiving spirit, Lord!" when I was top notch at grudge holding and silent treatments.

"Help me to witness to your love and for your Kingdom, God!", while only allowing my belief in Jesus Christ to be fully exposed in "safe" company.

But it's as if a snowball started rolling downhill some time in the recent past.  I'm thinking the first snowflakes gathered together on the day Jackson was born.  It hasn't been roses since that day, but I do think that his birth was the beginning of healing in many ways for me.  And in the past year or two, I've literally taken myself by surprise with calm, reflective reactions to things that would otherwise break me.  Heck, before the holidays, I ran into the lady who was my partner in disaster, and before I could help myself I was actually nice to her and wished her a Merry Christmas!  The old me would have done all things possible to ignore and retreat after the fiasco I had been through with her!

I'm not anywhere near perfect, but I can feel The Potter molding His clay each day.  I once reacted to most stressful situations/events in fear, anger, and self-righteousness.  I now find myself becoming empathetic and forgiving, wanting to love and uplift, instead of judge and tear down.  I find myself becoming bolder for my Christian faith and beliefs, worrying not what the world says.  It's as if I'm living with a stranger, while really not at all.  It's the person I've prayed He would help me become.  The person He has been calling me to be!

Much work is left to be done in this spirit of mine.  Many days the old me rears it's ugly head.  But as my heart evolves, my priorities are changing and my life's goals become clearer.  I mean, seriously?!  Do I want to spend my life being mad?  Jealous?  In despair?  Fearful?  What kind of life would that be?  And what kind of witness to God's faithfulness?  Do I want the legacy of Shawn's death and Clayton's disabilities to be that it made their mom a bitter and sad woman?  NO.  NO.  NO.  With God's help I am choosing that their legacy be a mom who persevered.  A mom who ministered.  A mom who forgave.  And a mom who began choosing to see the good first instead of the bad.  With God's help, I'll be able to forge ahead with new attitude and perspective, not leaving room for regrets, judgement and indecision.  

Thanks for the song, Mom.  :)

It's {Still} The Little Things

When Jackson was a few months old, I posted about how foreign it was to do the "normal" things for him, when I was used to climbing obstacles to do some of the most basic things with Clayton.  Three and a half years later, those moments still occur daily.  

I've prayed a very specific prayer over the years:  one day I would wake up to Clayton walking into my bedroom to wake me up.  What a joy that would be to see him coming for me on his own two feet!  But alas, if he cries out in the night, we go to him since that prayer has yet to be answered.   I've continued that same pattern with Jackson, perhaps spoiling him a bit, simply because I'm used to jumping up and at 'em as soon as I hear a whimper on the monitor.  So when I was laying in bed the other night watching television and I heard strange noises, I thought the dog was having some crazy nightmares as she lay in the room with me.  I was literally taken aback when I looked over to realize the sounds were little feet coming into my room!  Jackson walked up to the bed, threw back the covers, jumped right in, and went fast asleep almost immediately.  I just lay there flabbergasted.  Wow is all I could think.  So this is how the rest of the world does it??  Just the whole thought of him waking up in his own room, deciding to navigate through the dark house, and then helping himself to the comfort of momma's bed blew me away.  It's so simple, yet so strange in our little world!

A Brother's Prayer

I pray with Jackson every night.  Last Thursday night was the first time I heard this:

"God?"

"I ask you to please help Clayton walk." 



Gulp.  

"From the lips of children and infants you have ordained praise and strength . . ."  Psalm 8:2

Paying it Forward

It's been over nine years since Shawn and Clayton were born.  Somedays it seems like yesterday, but on most days, my memories unfortunately grow more distant and random.  And while the details of our stay in the NICU have grown fuzzy, the love and support we received from family, friends, and even strangers is still fresh in my mind.  At times I am moved to tears when I recall the lengths people went to in order to help us survive the first year of Clayton's life.  

I've always known that I wanted to reach out to other parents who find themselves unexpectedly in the NICU instead of enjoying a healthy baby at home.  How and when that would happen was not so clear.  Before now, I simply wasn't ready.  As recent as three years ago, if I would hear about an acquaintance with a hospitalized child, my heart went out to them, but I avoided embracing the common ground I had with them.  I didn't want to live in those memories at the time.  Not to mention I just plain get tired of discussing medical issues with people!  But alas, God brought me full circle when a friend of mine recently gave birth to a preemie at 24 weeks gestation.  

When her baby girl was born and began fighting for her life, I grieved for my friend (and maybe again for myself anew).  To know that her family would have to face the struggles we faced was an overwhelming thought.  Although I grieved, I also had this resolute feeling inside me:  IT'S TIME TO PAY IT FORWARD.  All the prayers, gifts of resources, gifts of time, and simple kindnesses that had been done on our behalf could never be repaid to the doers of those deeds, but I can pass on those kindnesses to others who find themselves immersed in the NICU life.  

And so, I paid it forward.  I visited the hospital last week to take photos of my friend, her husband, and their precious baby girl.  I had my game face on, but I still broke when I stepped foot in Pod 7 where Clayton was discharged from.  Yes, it was hard.  But it wasn't near as hard as my friend has it now as she leaves her baby in the care of others each night.  If she can do that, then I can certainly hold back my own memories long enough to get to know her baby and photograph her family.  

With that, it begins.  Now that I've proven to myself that I can handle being in that environment, I will continue to reach out to other NICU parents and offer the gift of professional photography (something I would have loved to have had as a NICU parent!).  I trust that God will lead me to other families who need the voice and eye of someone who has been in their shoes.  

A New Year, Another Birthday!

New Year's Day always means a birthday celebration around here!  Happy Birthday to Brian!!  

Merry Christmas!

Still The Lamb

Time cannot change Him, and ages do not time Him . . . He is STILL saving, He is STILL coming . . . He is STILL the LAMB OF GOD!

Ladies' Man

It doesn't matter where Clayton goes,  he seems to have a knack for wrapping the ladies right around his finger.  It was no different with his helper for his play.  Kori (hoping I'm spelling that right) was a little worried at the first practices when Clayton wasn't very interactive.  She quickly learned that he was just taking it all in, because when he finally decided to participate, he went all out.  He spent most of his time trying to flirt with her (those little cartoon hearts were beating out of his chest when he was with her),  and ALL of the time trying to make her laugh.  He can't wait to see her next semester for their next adventure in the performing arts! 

Stole the Show

This was Clayton's first year to participate in ACTS, Jr:

 ACTS Jr. is a unique, creative program designed to integrate children ages 7-17 with and without disabilities together through the use of performing arts. Led by occupational therapists, occupational therapy students, and youth volunteers from the community, this program is unique to Arkansas. ACTS Jr. has touched the lives of numerous children and families in Central Arkansas since 2005.

We've looked forward to his debut play for the last few weeks, as they've met each week for practice.  He was given just a couple of lines to say, and as I expected, he ended up doing his own thing instead.  It really didn't matter, because he'll do anything to get a laugh, and that is exactly what he did!

For a little background on the play (the kids help write the entire script!):  Four local shops were chosen to be highlighted and Rhea Lana's consignment shop was one of them.  This was Clayton's group.  For our friends that aren't local, Rhea Lana's is a huge biannual consignment sale for moms.  It's become so big that there are several locations across the state.  Enter Clayton.  He was the engineer of the train that went to some of these locations to pick up items to be sold.  He was supposed to clear the items and then say "All Clear! Welcome Aboard!"  But as you'll see, he didn't exactly do that.  (You'll have to ignore the laughter from his mom during the video--I couldn't help myself.) :)  
 The entire play was an absolute blessing!  Seeing so many kids overcome their disabilities to play their parts is so inspiring.  I can't wait until their spring show and what's in store for Clayton in the performing arts realm!

Happy Halloween!

I suppose it's appropriate that my blog is raised from the dead on the spookiest day of the year.  :/  I really do think about my blog (lots of topics run through my head daily), but between mommy duties , photographer duties, and all other duties in between, it's getting left in the dust.  I promise to my three blog readers that are left that I'll try to do better in the coming weeks.  :)

What do you think about Captain Hook?  He watches Jake and the Neverland Pirates on Disney but he wasn't too impressed with the good guy costume of Jake.  Captain Hook's accessories were much more appealing, so Captain Hook it was!

 Only one problem with being Captain Hook, though . . . self injury while using one's own hand!

Clayton, of course, was a good guy policing the neighborhood.  At the Fall Festival, he literally looked like he was on patrol the whole evening, weaving in and out of the crowd.  

Hope everyone has a safe and happy holiday tonight--I think between these two, I can consider myself safe and sound!

Think About Such Things

Clayton's love for music always shines on Sundays when the kids lead worship.  He may not be able to do all the motions with them, but there is no doubt he knows the motions and every single word!

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.  Phil. 4:8

Wordless Wednesday

Guitar Man

Most of you know that Jackson is becoming quite the guitar and ukulele player.  You can see that his guitar (once Clayton's) has the finished rubbed off of it from play.  He pretty much plays solid for at least an hour a day, usually more.  He's getting pretty good for a three year old, if I do say so myself!  

So when we went to Bentonville this past weekend and didn't take along his instruments, I think he had a bit of withdrawal.  We saw a lot of groups playing around the town square and he was mesmerized--literally chomping at the bit to get in there and play with them!

This meant that as soon as we got home, he ran in the house and grabbed his guitar and his "bucket" to sit on.  He spent the rest of the evening serenading the neighborhood with all that he had learned by watching the others.  

 He's had the rhythm part down for a while, and now he's added two chords to his repertoire.

Look for him on the next season of American Idol!