Memorial Day Weekend 2012

Brian was so inspired by Dennis's headcam, that he just had to go out and get one for himself.  Here's a little music video I put together with some of his footage from this past weekend: 

Can't wait until the next weekend of fun!!

Motorcycle Ride: The Video

I'm so glad our friend Dennis wore his head cam for Clayton's motorcycle ride!  If you listen closely, you can hear Clayton laughing and squealing most of the trip . . . we are so thankful that others love spoiling Clayton with fun as much as we do.  :)

Weekend of Fun

Memorial Day is always a great way to start off the summer.  And with my birthday being in late May, it's always a bonus when it falls on the actual holiday.  We spent our days this weekend with family and friends at the lake and poolside.  Great times and lots of fun in the sun!  Can't ask for a better way to spend our days off!

Memorial Day Weekend

In memory of those who have served, and fought the good fight . . .

I have never been able to think of the day as one of mourning; I have never quite been able to feel that half-masted flags were appropriate on Decoration Day.  I have rather felt that the flag should be at the peak, because those whose dying we commemorate rejoiced in seeing it where their valor placed it.  We honor them in a joyous, thankful, triumphant commemoration of what they did.  ~Benjamin Harrison

Poser

I am thankful that Jackson is willing to let me take his picture now, but I often wonder about his choice of poses.  

Looking the Part

We've been spending a considerable amount of time at the ballpark lately, watching my nephew play some good baseball.  Clayton absolutely loves the excitement and watching all of the people.  But he couldn't just show up and not look the part . . . gotta have the hat (like any good ballplayer would), gotta have the necklace (which is *the* going thing for ballplayers these days), and of course he had to have the tape under his eyes to block the sun.  He may not be able to play regular league ball, but he isn't going to let that stop him from looking like a ballplayer--he's definitely NOT a benchwarmer!  :)

Motley Crew

Growing up, my cousin were my best playmates.  I'm glad this is becoming true for my own kids as well.  

(You see that Jackson was "helping" me by telling Clayton to look at the camera . . . forever bossy--wonder who he gets that from?)

 Heidi wasn't left out.  She chose to do her own thing, which is quintessential Heidi, of course!

Two-Wheelin'

This child.  

This child has so many people that love him.  And because of those people, he gets to do all sorts of fun and interesting things.  It blows my mind how generous people are with their time and resources when it comes to Clayton, but it reminds me time and time again how special he really is.

Dennis and Terry are some of those people.  They ride Harleys and Clayton has been able to sit on Dennis's bike, but he hasn't gone for a ride, simply because his particular motorcycle doesn't have the seat that could support Clayton.  But Dennis was determined to get Clayton a ride "around the block" (as Clayton always puts it), so he took it upon himself to hook Clayton up with one of his biker buddies.

Steve didn't even know Clayton, but he took time out of his schedule last night to come by the church and give Clayton a ride on his "mokercycle" as Clayton says.  :)  Clayton was all smiles and squealing with delight as they pulled out of the alley--he was having a blast!

 waving, of course!

Dennis videoed the ride (that's a pretty neat contraption on his helmet, eh?)--I hope to share that video soon . . . but I couldn't help but go ahead and share these pics of one very happy boy.  Thank you, Terry, Dennis, and Steve for making Clayton's day--and in Clayton's words:  "do again sometime??"

My short video as they are arriving back:

Boy Stuff

When Brian has his trailer out back, I can guarantee one activity that Jackson and Clayton will be involved in:  backing up.  Whether it be in the gator or the power chair, they have to back up in order to "hook up" to the trailer.  

And Jackson has discovered the trailer is good for something else as well--something to hit that he won't be in trouble for hitting.  Since he has reclaimed his baseball toys, he has decided that hitting anything and everything in his path is fun.  Of course this causes me much unrest, because I'm constantly taking the bats away or punishing him for hitting something other than a ball.  

But the trailer seems pretty indestructible when put up against a plastic or foam bat, so I let him have it when we're outside.  

 It's so funny to watch them and their little boy ways.  Not to mention watching them play together.

You've Come a Long Way, Baby

Clayton's O.T. has figured out how to use his love of home movies to motivate him.  She videoed him today as he went through his feeding therapy.  He is very into watching himself on the screen, so he got to do so on the phone's screen while it was actually taping him, and then again when she played it back for him.  

It is in absolute miracle how far he has come.  This is the child who at one year old would nearly gag at the sight of others eating soft foods like the yogurt he licks on here.  His oral aversion was so severe, he couldn't even stand to have his own hands near his mouth.  What an answer to prayer to see him touching  foods to his tongue!  He has come so far--I'm hoping at this rate, he'll be able to eat a bite or two of cake on his sixteenth birthday!

Relaxing in the Backyard

It has been gorgeous here the last couple of days.  And with any pretty weather, we always head outside.  In my mind, I always envision the little tykes playing in my immediate view while I read or simply daydream.

NOT.

Instead, I am on constant guard and mainly herd duty.  I understand this is a mom's job, but not even for two minutes am I allowed to sit quietly.  With Clayton's newfound freedom and Jackson's general rebelliousness, it is all I can do to keep them in check--I know anyone within ear shot thinks I am a nut if they listen long enough!  Instead of sitting, I run around trying to make sure both the chair and the gator and their drivers stay in my immediate view (and of course, neither is in the same spot at the same time!)

"Clayton, stay in our yard."

"Jackson, don't drive on the trailer."

"Clayton, stay in our yard."

"Jackson, stay where I can see you."

"Jackson, what shoes are you supposed to wear in the mud? Get your boots on!"

"Clayton, STAY in our yard."

"Jackson, you can't pull the trailer!"

"Jackson, get back here!  I don't care if you're chasing the bird!"

"Clayton, GET BACK IN OUR YARD!"

"Jackson, leave the bird alone!"

"Clayton, do not drive your chair through the mud."

"Clayton, get away from the mudhole!"

"Jackson, you cannot pull the trailer."

"Clayton, get off their porch and come back into our yard."

"Clayton, don't run over Katie!"

"Jackson, stop chasing the bird with the gator!"

"Clayton, if you don't get back into our yard, you're getting out of the chair."

"Jackson?  Where's Jackson?!"

"Clayton, get away from their window."

"Jackson, LEAVE THE TRAILER ALONE!"

"Clayton, you have GOT to stay in our yard!"

"Whew.  I'm relaxed . . . now let's go in."

Evaluate This

When Clayton was a baby, I devoured his annual evaluation reports as soon as they showed up in the mail.  I searched for signs that my child was normal in any area, was "like" other children his age.  But as the years have passed, I've figured out that while necessary for proving to insurance he needs services, these evaluations really mean nothing in the whole scheme of Clayton's progress.  And that is just it:  CLAYTON IS MAKING PROGRESS!  THIS is the only thing we should be concerned with.  In his world, progress comes slow and never like that of another child his age.  According to tests, he is still like a six month old in some areas.  If I dwell on details like that, I could easily get overwhelmed with the negativity. Instead we all choose to think back to the times when Clayton didn't hardly speak.  When Clayton couldn't unfist his left hand.  When Clayton was on continuous feed because his gut was so weak.  Talk about progress!  Clayton has never had to use the electronic talker that was ordered for him, is starting to randomly use his left hand without prompting, and "eats" four meals a day while licking all over different foods.  Not to mention the fact that Clayton's first wheelchair was the chair of a child that would never be able to sit up on his own, or even interact with people, and now he drives a power chair!  So many improvements in more areas than I can name.  No test can ever show most of these . . . and with that in mind, this last year's reports went in the filing cabinet without even a second glance.

Which brings me to this past Monday.  We had to see one of Clayton's main doctors for a routine checkup, and part of that routine was a psychological evaluation.  Doctors do these things because that's what they do.  But it was a joke.  And Clayton knew it was a joke!  I spent 10 minutes explaining to the doctor that Clayton learns best IN CONTEXT.  If he doesn't see a purpose, he doesn't do it.  He doesn't think abstractly.  She must not have been listening because she started in on him with her "puzzles" (don't puzzles normally have pieces?).  She had a flip chart with patterns and shapes and Clayton was supposed to finish the patterns and/or find the missing shape.  Yeah, right.  He talked about Jackson, talked about all the southern gospel singers he listens to, talked about Katie (the dog), did everything but concentrate on her paper.  She was getting frustrated, and he was laughing.  

Then she pulled out a ball. 

doc:  "What is this Clayton?"

Clayton:  "Jackson"

doc:  "Can you tell me what I've got?"

Clayton:  "Katie"

doc to me:  "Doesn't he know what this is?"

me: "YES"  

Again, she didn't get it.  Clayton doesn't identify things for identifying sake.  If he wants a ball, then he asks for it.  If he is telling a story about a ball, then he says it.  But he didn't need the word, so he didn't want to say it . . .

doc to me:  "Does he know his birthday?"

me:  "yes, Clayton tell her your birthday"

Clayton:  "August 29th"

me:  "Clayton, tell her your birthday"

Clayton:  "August 19th" 

and then he started laughing again . . . when we got to my parent's house to pick up Jackson, I was telling them about what a comedian Clayton was during his test and how he basically ignored the lady.  My dad asked Clayton "no jokes aside, when is your birthday?"  And of course, Clayton answered correctly then.  

But I think this exchange sums up his attitude about the whole test thing in general:

me:  "Clayton, tell her your address"

Clayton: silence

me:  "Clayton, tell her what your address is"

Clayton: "xxxxx street"  

me:  "can you tell her what town we live in?"

Clayton: [with emphasis]  "YOU know it, YOU tell her."

CLASSIC.  

Then I was the one doing the laughing!

Loves Towing

These boys just can't get enough of the mud.  And Jackson isn't the only one. Clayton has been attempting (successfully when we aren't watching) to take his power chair right through the same mud holes that Jackson plows through.  Unfortunately, that doesn't work too well with a chair that he has to also use in the house, so we've been trying to limit the amount (and deepness) of the mud he runs through . . . in the meantime, we've found something he likes to do almost as much:  towing Jackson out of the mud!

That little power chair of his makes the perfect wench vehicle and both boys LOVE the whole process of getting the ties and things hooked up and ready to go. In fact, I could swear that Jackson gets stuck on purpose, just so Clayton can come rescue him out of yet another mud hole!

Easter!

 “Why are you looking among the dead for someone who is alive?

  He isn’t here!

 He is risen from the dead!"

Luke 24:5b-6

In Which They Play Together

Since we've had so much mud in the backyard lately, Jackson become a little obsessive about making sure everything gets "washed" constantly.  Can't imagine where he'd get that OCD quality?? [ahem]  At any rate, I have no idea what they were discussing while Jackson played in the water  and "washed," but it seemed to be a pretty involved conversation.  :)  And Clayton didn't even flinch when Jackson started getting the water on him as well.  

The Little Choir That Could

Our choir may not be huge, and we may not all be well-versed in music theory, but let it never be said that we don't know how to raise our voices in praise to the living God!

LORD, how many are my foes! 

How many rise up against me!

Many are saying of me,

“God will not deliver him.”

But you, LORD, are a shield around me,

my glory, the One who lifts my head high.

I call out to the LORD, 

and he answers me from his holy mountain.

I lie down and sleep; I wake again,

because the LORD sustains me.

I will not fear though tens of thousands

assail me on every side.

Psalm 3:1-6

Loves Mud

I love my boys, but I simply do not get this fascination with the mud and the muck.

I think if left to his own devices, he would play in these puddles 24/7.

And I could watch him just about that long as well.  

Because while the girl in me doesn't get it, I still love watching him explore the world and pretending all sorts of fun things while he tromps through the yuck!

Closing A Chapter

When Clayton was born, he was not breathing.  The NICU staff resuscitated him and immediately ventilated him for his breathing.  That was just the beginning of a very long road with Bronchopulmonary dysplasia (BPD).  We were told he would battle this lung disease his entire life.  And while the battle did rage on for years, it was when Clayton was around five years old that a doctor looked at his chest x-ray and declared there was absolutely no sign of lung disease!  

At first we kept the oxygen around for the "just in case" moments.  In the past when Clayton got a small cold or was dealing with allergies, he needed just a tiny bit of help keeping his oxygen saturations up.  But as time went on, those instances were rarely happening.  And since it had been so long since Clayton had used the oxygen, his pulmonologist told me two years ago he was not going to renew the prescription for the oxygen.  Factor in the [non]-communication between doctor-hospital-TEFRA, and two years later we still had about ten oxygen tanks in our garage and an oxygen concentrator machine as well.  I could have pushed the issue long before now, but to be honest, I kind of liked having them around as a comfort thing.  I always thought of the "what-if" moments like his seizures he has had when he decides not to breathe.  [EEK!]  But you know what?  Today when they called to ask if we needed any refills (why they called month after month, I don't know), I thought to myself, "self?  today is the day we just let it go!"  Apparently the company still had not gotten the message that the doc is okay with it, so I had to sign my life away for doing this "against medical advice."  (This as the guy wipes the cobwebs off the tanks as he loads them in the truck . . .)

So there it is.  Another chapter closed in Clayton's book of life.  One we thought would drone on forever, and here it is getting killed off in the second season!  We will live in faith that we won't have the "just in case" moments to deal with and we will pray that his lungs continue to function normally!

Thank you, Lord!   

Jackson: A Photo Essay

Clayton is the lucky owner of both an iPad and iPod.  Clearly, he can't use them both at once, so while he prefers the iPad, Jackson gets to use the iPod for [limited] amounts of time.  This makes for some interesting viewing later on.  He has recorded at least 25 ten second movies and has become somewhat of an expert maneuvering around YouTube finding videos of trash trucks and trucks and ATVs stuck in the mud.  And when he's not busy with videos, he is quite the little photographer.  So here is just a taste of what I found on Jackson's camera roll when I uploaded the files . . . this might be an overshare, but I've culled them down considerably!

self-portrait:

 the office:

 ceilings and floors are a common theme:

lots of backseat photos as well:

he even used natural lighting on this one:

 change in perspective:

 Clayton, of course:

the T.V.:

Christmastime:

 his guitar:

a photo downloaded off my blog (yes, he knows how to do that because he does it on the iPad regularly):

toys:

 lots of pics taken while I'm inside picking Clayton up from therapy:

 and on the way home:

 laying in Momma's bed:

pic downloaded from a game:

Daddy on FaceTime:

 Clayton and Katie:

 the ever-present cup (I like his composition here!):

 his dinner (ugh--his food photography could use some help):

 Momma talking on the phone:

 Clayton, again:

 one of his toothbrushes:

 the cup again:

 his new rain boots (he made a production of getting this pic):

 I'm sensing a theme in the self-portraits:

 beside the desktop:

 beside the laptop:

 last one on the roll, taken yesterday:

So there you go.  A peek into the world of Jackson.  You never know--this may be the beginning of a budding career in photography!