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! 

In the Genes

Over the last few months, I have noticed a big change when lifting Clayton.  HE IS GETTING BIGGER.  Doesn't take a rocket scientist to know this is happening over time, but this latest spurt of growth has happened very quickly.  Prior to this summer, he had been on the same caloric intake for about three years.  But given what we think were some low blood sugar episodes that randomly happened in the afternoons, I decided to increase that amount just a bit, hoping to help his body keep his glucose level regulated.  And then, BAM!  Here come the pounds!  

You don't see it much in this photo, but he has put on plenty of weight around his middle (standard for chair-bound folks).  And since we were at the doctor yesterday (for other things), I had them get a good weight and height so we would know exactly where he was on the growth chart.  For starters, he has gained 11 pounds since this time last year.  That's a big weight change for a little guy his size!  For weight at his age, he is at the 35th percentile.  For height at his age, he is at the .06th percentile.  As in POINT O SIX--as in LESS THAN ONE.  This means his weight for height is in the 93rd percentile!  (He weighs more than 93% of other nine year olds his height).  A little chunky to say the least!!  I'm going to be seeing a nutritionist next week at one of his appointments and you can bet I'm going to be asking her how I need to adjust his diet.  I realize that he is going to grow, but I need him to grow UP, not OUT!  I hate to regulate his eating, but a person who is a total lift has to maintain some sense of healthy body weight/height ratio so that his lifters can actually keep lifting!

At any rate, 99.4% of all nine year old boys are taller than Clayton.  Given his paternal gene pool, I don't think anyone is surprised.  :)

NILMDTS

I mentioned last year that one of my goals as photographer was to eventually give back to my community by serving as a photographer for Now I Lay Me Down to Sleep.  This goal is still never far from my mind.  I still have a few technical things to become proficient at (such a high stress situation will demand me knowing my equipment inside and out), and I've got to prepare myself emotionally for actually putting my name out there as a volunteer.  Time will bring these things, but in the meantime, I continue to sing the praises of this wonderful organization.  The gift these photographers give to parents is absolutely priceless.  In some instances, a literal "lifetime" of images is given to the grieving parents of these children.  

When I saw this video, I knew I had to share--I want to keep telling the world how important it is (not disrespectful or shameful) to photograph these little ones who will never have those regular milestone moments photographed as they grow up.  My photos of Shawn (even if they are just snapshots) are precious to me--proof that he lived and breathed and touched those around him.  

The last family featured in this tribute is the family of Teegan.  Her mom had just signed on as a photographer for NILMDTS and would have never guessed that her first session for them would be her own baby.  

~There is only one beautiful child in the world, and every parent has it~

The Year of the Extra-Curricular Activity

With the dawn of this school year, we have added a few new things to our weekly agenda.  We have our work cut out for us when it comes to keeping up with this new schedule.  In addition to our regular school activities and Clayton's therapy, Clayton is now attending an art class and "acting" class (more to come on this later--it is a program run by occupational therapists).  He also has his regular hippotherapy and church activities to keep up with (including Bible quizzing).  I'm hoping his stamina holds up to all this running around and long days ahead, because I feel like these new arenas will push him out of his comfort zone in a good way.

The art class has already met twice and it has been quite the ordeal getting Clayton to participate.  His helper just graduated from O.T. school and she is getting a crash course in sensory issues!  The first week Clayton gagged several times because another child was using glue.  The second week he was supposed to draw lines and it was a battle since he doesn't like the feel of the crayons in his hand.  You can see that she got him to connect the dots after much begging and [eventually] bribing.  

Jackson must have looked lonely because the teacher is letting him participate as well.  He didn't have any trouble putting his artistic vision down on paper.  (I just wish he would quickly pass out of this fake smile phase he is in!!)

**sorry for poor iphone pics--maybe I'll take my big girl camera to the class before the semester is over.  :)

Family

Clayton's speech therapist often has students interning with her each semester.  And when Clayton meets these new therapists, he immediately turns into The Most Perfect Little Speech Student Ever.  (It doesn't always last throughout the whole semester!).  Yesterday, when Ms. Adrienne introduced him to her new helper, she asked him to introduce himself.  He obliged by telling her his name (and even how to spell it), told her all about Ms. Adrienne's family, and even told her about his own family.  His mom, his dad, and his brother Jackson, and his brother Shawn.  He told her that Shawn was real sick.  

People often ask me if Clayton knows.  I guess they want to know if he really gets it . . . if he gets the whole story.

I think in his own special way he does.  When he woke up on the morning of the 28th, he immediately asked me to take him to the hospital.  He has NEVER woken up with that request!  I asked him if he had dreamed about the hospital and he simply nodded yes.  I think he is more in tune to his history and the miracles therein than we could ever fathom.  

So when you see our family photo, you might only see four people.  But Shawn is there.  His imprint is on the story of our lives, and his spirit weaves in and around us always.  And our love for him radiates as we choose to honor him by moving forward in life.  Love that Clayton definitely understands.

**Photo courtesy of Mandy Haber Photography.  Thanks, Mandy!!

On the Beach, On the Go

The main reason we headed to Gulf Shores this year was so that Clayton could use the beach power chairs we found there for rent.  He could use some more training on the driving (they drive a little differently than his regular chair), but all in all, it was definitely a great thing--our backs especially appreciated it.  He is simply to big to carry very far, and definitely if you are walking in sand!  I did a little videoing of him driving so that I could share for others who are interested in trying them out:

You'll have to excuse the video quality--my videography skills are lacking!

Even The Hard Things

I still remember sitting in the pump room.  It was the early morning hours of the 28th and I had been by Shawn's bedside since around five that previous afternoon.  The doctors urged me to take a break, assuring me Shawn was stable enough for me to be gone for a short time.  I reluctantly went, knowing my body needed the release, also aware that Clayton needed me to keep making milk.  It was the first time I had been alone since being told my baby would die.  I sat there in the quiet of the room, listening to the ho-hum of the breast pump.

Making milk for babies who were too sick to even contemplate eating.

Making milk for a baby who wouldn't be alive in just a few short hours.  

And as much as I held onto the faith that God could heal him at any moment, I started visualizing my son's funeral.  How in the world do you go about planning a funeral for your child?

The one you just welcomed into the world?

The one you haven't even gotten to know yet?

And to this day, the devil plays tricks on me.  Tells me that since I dared to go there in my mind that night, my faith cracked, and in turn the Lord allowed Shawn to die.  Talk about mind games!  I guess as a parent, you just wonder over and over "WHAT COULD HAVE I DONE DIFFERENTLY?"  I look back at those moments and wonder if the Lord thought I was giving up?  I suppose it was the same battle I fight with Clayton's healing, just on a more acute level.  

I cycle through this emotional guilt and then my brain puts on the brakes--I KNOW the Lord works in higher ways than this!  As my friend Karen reminded me:  "Romans 8:28 is STILL IN THE BOOK."  All things, [even the hard things] are working together for the good of His people!  And what a celebration it will be when we see the good of sufferings like these revealed!    

I guess my time alone that night/morning was what you'd call a gut-check.  I could either simply collapse under the emotional weight of it all, or I could go make the most of what I had been given.  I had to trust the Lord would carry us through.  I left that pump room determined to love on my son as much as possible in the time I still had with him.  And that is what I did.  

Back to [Home] School

Yesterday, we started back on our school routine with a new student in tow.  This will be our first year to officially include Jackson in our "classroom."  Last year I let him participate if he was interested, but didn't force the issue.  But with his interest in reading and letters/numbers growing, I thought it was the perfect time to add him into the mix. 

He was pretty excited to get his own notebook and have his own lesson.  I let Clayton "help" Jackson with his lesson, and then in turn Jackson got to "help" Clayton with his lesson.  Neither one is very motivated to do their work for their own sake, but both are very eager to help the other!  Our lessons went very well and we had a ton of fun with some new songs we learned.  We're looking forward to a great year of learning!

Gone Fishin'

Brian did a tiny bit of fishing with the boys while in Gulf Shores, which I suppose inspired him to take them to the lake this week to let them experience freshwater fishing.  He spent most of his time working on the equipment, baiting, cutting, untangling, etc., but it totally paid off because both boys were able to walk away saying they had caught fish.  

Their lines had several hooks on them, so both of them were lucky enough to even catch two fish at once. I'm glad we weren't depending on them for sustenance though, because these fish were a little on the small side!  

Seriously though, doesn't every little boy need pics like this?  I just love it.  :)

Playmates

Jackson and Whitney are like peas and carrots.  When all of the kids are together, they just seem to pair off together more often than not.  And when left to their own devices, they could play together for hours.

They just kind of did their own thing while on vacation--playing in the sand, playing in the water, playing with trucks, or making music with the guitar--they seemed to entertain each other to no end.  The only problems occurred when one of the other kids tried to interrupt their games and play.  Things didn't bode well for Drew and Heidi who always seemed to disrupt the harmony Jackson and Whitney had going on!

Vacation 2012

Last year, we had an awesome vacation, which I suppose is the reason everything seemed to go wrong on this year's trip!  We stayed in a not so well kept condo, (I'll spare you the details on the dirt we found), the beach was dirty and full of stinky seaweed, the water was full of stingers from what we guessed was broken up jellyfish?, Josh and Nicole's room had no hot water for the first few days, Mom and Dad's room had plumbing issues, the parking was atrocious, it rained and stormed constantly, and my mom ended up in the emergency room almost all of one of the nights we were there.  

So while some sing the praises of Gulf Shores, we were all ready to get the heck out of dodge when it was time to leave Saturday!  We made the most of it, and I wouldn't have wanted to laugh about all the craziness with any other group of people, but I really don't want to have another trip like that for a while!

Nine Years Old!

Happy Birthday to Clayton!  Our world is brighter because God has blessed us with this beautiful child.  I pray he has a long and full life ahead of him!

On Fifteen Years

Today, Brian and I celebrate fifteen years of marriage.  (And when I say celebrate, I mean we simply kiss and say "Happy Anniversary", both hoping for a trip marking our milestone within the next year).   I really can't believe that we're old enough to have been married that long, but as I get to say now, "I'm pushing forty", which means the other numbers in my life are bound to get larger as well!

We. were. kids!  Looking back at these photos, we really had no idea what was in store for us.  All we knew was that we were in love and we couldn't bear to be apart not one minute longer!  So the two became one, and we've journeyed long and hard together over these years of marriage.  Who knew that within those first six years we would endure the death of a parent and then the death of a child?  And following those years, we have endured the illnesses and disabilities of another child . . . the grief, anger, sadness, and loss nearly overtook our relationship, but I'm glad to say we've come out on the other side.  Stronger. Unified. Dedicated.      

I love him.  "I am my beloved's and my beloved is mine . . ."

To the Zoo

On our many trips to Memphis over the last couple of years, we've heard so many people rave about the zoo there.  And since we had some extra time on this latest trip, we decided to check it out for ourselves.  As usual, the boys made it an interesting activity.  Clayton spent the entire time watching the trams/trains that traveled throughout the zoo.  He couldn't drive his chair for watching, and once they went by, he wanted to follow them, regardless of where we were actually headed.  (You can see that he was watching yet another one go by in the picture above).  I think Jackson enjoyed his trip--he mainly wanted to climb the gates and fences to get up close and personal with the animals.  He was also very distracted by the many fountains in the zoo.  We didn't realize you could bring your bathing suit and enjoy the water.  So many kids played in the fountains while Jackson looked on with a sad face because his mean old momma wouldn't let him jump in with his clothes on!  

I did find something out though.  While I'm not some maniac animal rights activist, I really don't enjoy the zoo.  It just seems so wrong to see a grizzly bear or polar bear while standing in 100 degree weather.  :/  Not to mention the fact that ever since Brian and I practically ran into a grizzly out in the wild (maybe I'll blog that story soon!), it just seemed a little anti-climatic to see one restricted to a certain amount of space.  

Despite my misgivings about the contrived habitats, we had an awesome afternoon as a family.  The boys were worn out from the fun and activity and Brian and I enjoyed every minute of our uninterrupted time with them.  

Imagination Station

We've got a new addition to our homestead:

I knew something was up when Brian showed up earlier than normal one afternoon with a trailer load of cardboard and lumber.  And he wasn't home an hour before this fort was completely constructed!  Of course the boys immediately fell in love with it and with that, Jackson immediately locked Clayton into "jail."  

Then they all decided to take a turn locked in jail!  (I think Brian was having just as much, if not more fun than the boys are!

 Jackson was having a hay-day exploring and climbing.

And at one point, this "seating area" turned into his stage for an impromptu concert.  You just have to love the unlimited possibilities of a creative imagination.  :)

Clayton even got to do his favorite thing:  "watch traffic," although there isn't much traffic happening in our backyard.  

It's basically been a work in progress from that day on--Brian has already waterproofed the cardboard roof and sides and has cleared out a "parking area" in the back.  My boys are pretty lucky their daddy hasn't lost his sense of imagination himself.  :)

So far, it's been a house, a jail, and a fort.  I'm thinking they definitely look like a couple of outlaws daring the outside to take them on.  

Good Reports

Clayton had two checkups in Memphis last week.  First doc we saw was his orthopedist.  Clayton's left hip is still slightly out of socket, but in general his x-ray looks the same as a year ago, which is definitely good news!  Also, while his spine does bend while he is seated, it is still flexible enough to go back to the straight position when he is lying down.  We are coming up on the next big growth spurt for him, and this is when it can get hairy for a non-ambulatory child.  All those spastic muscles will be pulling on his bones as they grow, so we will have to take good care to keep him in different positions and stretched well.  I pray his body handles the next few years of growing well.

We also saw his neurosurgeon.  His MRI was unchanged, which is another round of good news.  We discussed Clayton random afternoon episodes of crashing.  I had decided that he was having hypoglycemic spells, and she agreed that this could be possible.  She also suggested that it could be a low pressure headache from too much drainage from the shunt and/or from a bit of dehydration.  She said that almost all of her patients who deal with low pressure headaches find they come in the afternoon.  We'll see the next time it happens . . . if water helps it go away, then we'll know it was just a dehydration issue that led to a low pressure headache (low pressure due to not enough spinal fluid in his brain).  If that doesn't work and some juice or sugar water does, then we'll know it's low blood sugar.  I actually had his PCP order a blood test for the sugar, we just haven't made it to the lab after fasting for eight hours yet.  I hope to get that done this week and it might shed some light on the issue.  

All in all, two painless doctors appointments with happy doctors is what I'd call a win-win!

[God is] In The Details

Clayton had his yearly checkups with his orthopedic and neurosurgeon doctors in Memphis this week.  And since the appointments were on back to back days, we went all in and decided to make a family getaway of it.  Part of that trip would include a visit with Brian's cousin, who moved with her family to the Memphis area recently.  We knew Rosalind was near-term pregnant, but we still wanted to get together with her and her husband and kids.  But when her daughter came down with a high fever virus, we reluctantly cancelled our plans to visit, since we can't risk Clayton getting sick.  

We had a painless experience at our first appointment on Wednesday and spent the afternoon at the Memphis Zoo.  Meanwhile, Rosalind was busy going into labor across town!  When we realized she was in the hospital, we knew we should visit.  We figured the hospital was downtown, so we decided we might have to wait until late Thursday afternoon after Clayton's appointment.  On a whim Thursday morning, I decided to check the GPS to see where the hospital was located.  And guess what?  It was RIGHT NEXT DOOR to Clayton's clinic way out in Germantown.  Brian and I knew that was our sign that we should move up our visit.   

Rosalind said she immediately started crying when Brian walked in.  When you're having a baby far away from home, and you can't  have your mom with you, I'm certain any familiar [as in family] face is a welcome sight.  We had a great (but short) visit with Chris and Rosalind.  (Baby was too sick for us to see and had to be moved to the NICU).    I'm sad that our kids didn't get to play together, but I am so happy we were there for this moment in Rosalind's life.  We are definitely not her mom and dad, and definitely not her sister and brother, but I hope that Brian being there was enough of a pinch hit to give Ros and Chris a feel for home on their fourth (!) baby's birthday.  

I'm doing my best to recognize God's hand in the details of my life.  I admit that in some things, I'm a little blind to His work, and struggle to gain His perspective.  But when I do recognize His orchestration of the details, I want to be quick to thank Him--this visit is one such circumstance where it was obvious He was working behind the scenes to make sure Rosalind had a hug from home on this special day.  

No Limits

I've taken many of photo of Clayton in his eight years, and this one has to be in the top five of my favorites.  You can't beat the sunsets on Mt. Nebo, and you can't beat seeing Clayton conquer more terrain, both literally and figuratively.  

He brought me out into a spacious place; He rescued me because He delighted in me.

Psalm 18:19

Decompressing

Last week was emotionally heavy.  I can't even say that I'm fully out of the funk as of yet, but I am continuing on with daily life (even though most hours don't go by without me wondering "What are they doing in Heaven today?")  When I get into these melancholy moods, my first instinct is to circle the wagons and surround myself with those I'm closest too.  And while that usually includes extended family and some best friends, this weekend I went even farther than that . . . I really just wanted to spend time with my husband and babies boys.  

So that is just what I did.  We stayed around the house all day Saturday and basically decompressed from the week.  Sunday, we took off on a road trip and ended up on the top of a mountain taking pictures at sunset.  

There is no where I'd rather be than with these three guys.