Photo Friday

". . . So we have stopped evaluating others from a human point of view. At one time we thought of Christ merely from a human point of view. How differently we know him now!  This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!"

2 Corinthians 5:16-17 (NLT)

Saying Goodbye

  I have been extremely blessed to have all four of my grandparents to live this long and for them to be able to stay involved in my life.  But today I say goodbye to one of them and will sing at my Maw-Maw's funeral.  It will be tough to do emotionally, but it will be a pleasure to honor her memory with my voice.  

Weep Not!

My Maw-Maw passed away on Saturday evening after a long battle with a horrible debilitating neurological disease.  She had been house bound for many years and bound to the bed for at least two years.  It was a struggle to watch her suffer, but we now rejoice in the fact that she rests with her Savior!

What a blessing the promise of Heaven is to us!  

The Fine Line of Faith

I've been struggling lately.  Struggling emotionally, that is.  I don't know if it was the prayer conference, my birthday, Jackson's birthday, or the combination of the three, but I've been stuck going in circles inside my head for at least a couple of weeks.  So many things rolling around in my mind . . . so many battles, memories, and plans undone . . . 

I'll start with one of the biggies:  

Pastor Maria Durso preached a sermon that really made me analyze this faith thing, and how it pertains to my perspective on Clayton's healing.  I *DO* believe that God could heal Clayton in an instant if he wanted.  And I have people reminding me weekly that they are still praying for Clayton to walk, and still praying for his complete healing.  And I've prayed so earnestly that one day my little boy will simply get up out of the bed and walk into my room to greet me in the morning!  But I suppose that while I believe God CAN, sometimes I think he just isn't going to.  That this is Clayton's path in life, and this is how it will be.  But then I beat myself up thinking God is just waiting for me to give up that ghost, knowing that the healing is right around the corner.  And then once I do, only then will Clayton take his first step.

Like I'm the one that's holding things up.

Mother's guilt:  it's a beautiful thing . . . 

NOT.  

Either way, I feel like I'm failing.  Believe this is God's way for Clayton, and I've given up believing in healing.  Believe he will be healed any moment, and I've failed to accept the way things are for us daily.  It's like there is this fine line in between, this tightrope that I should walk, the constant state of faith that says, "God's timing is perfect.  Each day of trial is completely in God's will.  Each moment of Clayton's physical infirmities is divinely ordained, and the moment he is relieved of them will be the exact moment he is ready for it."  Faith that says, "Whatever path God chooses, it is the perfect path for Clayton."

Easier said than done, but that doesn't mean I won't be constantly striving for this ideal.  I will still depend on those reminders each week from others that God is working, and He is working on Clayton's behalf!  

Father, may you give me the grace to accept each day as a gift from you.  Provide me with a new energy and strength to deal with the day to day stressors of having a physically disabled child.  Grant me a kingdom and eternal perspective that makes both the waiting endurable and the anticipation exciting.  We are waiting on bended knees for the great miracles You have in store for Clayton!

I pray in the Name of Jesus Christ.  

Birthday Week

Since Jackson's birthday fell during the prayer conference at church, we decided to wait until this past weekend to have his official birthday party.  This meant that he got to celebrate virtually all week.  Sunday, he ate with his cousins.  Monday, my grandparents visited with a gift.  Tuesday, our friend Janet came by with a gift, and on Thursday, some more friends came by with yet another gift.  It all rounded out with a gymnastics party on Saturday.  He had a blast despite the fact that only one guest showed up.  All the visits during the week were a consolation when considering the extremely small crowd at the party.  

For Jackson, the party was right where he was--no need for crowds of people when you can entertain yourself like this!

And we couldn't get home fast enough for him to take Clayton for a spin in his new wheels:

I'm just waiting to see what kind of trouble these two get into with a new hot rod on their hands!

Right at Home

Clayton was in his element this past weekend as our church hosted our annual prayer conference.  And as usual, he quickly attached himself to a buddy and obsessed over being with her the entire time.  For this weekend, the focus of his affection was Ms. Leisa, who is one of many of our friends who dotes on his every whim and basically helps spoil him rotten.  (Who doesn't?!)  He helped her greet guests before each session, and to say he had a blast doing this job is a gross understatement.  He LOVED anticipating the arrival of each person, from watching them drive into the parking lot, to the point of shaking their hand as they entered the building.  

Clayton is right at home in our church services and events.  And it's no wonder!  These people have nurtured, loved, and indulged his every wish as long as he has lived.  They have prayed and supported us through all the trials of his life, and they have rejoiced in his triumphs.  Clayton is smart enough to know that this congregation is full of some of his biggest fans and closest companions, both child and adult.  We are grateful for friends who have made a comfortable and welcoming atmosphere for Clayton, and we're thankful his "home away from home" is indeed God's house.

Happy Birthday to My Baby!

He may be turning three today, but in this Momma's heart, he is still considered my baby boy.  :)  

On this, his third birthday, Jackson is smarter than ever, and too clever for his own good.  He whispers "I love you, Momma" one minute, then defiantly states his independence on random tasks the next.  He worries Clayton to death by crawling into his personal space, and definitely misses Clayton if he is not around.  Jackson confidently and correctly identifies letters in all the places we see them.  He hits balls that are pitched to him, and he "plays" the keyboard, guitar, and drums.  He still spends most of his time outside riding the John Deere Gator, but is spending more and more time honing his baseball skills.  He is a big boy in almost all ways except for not being potty trained and still being in love with his sippy cup (his comfort item, to say the least).  And when he isn't showing his "me! me! me! toddler side," he is absolutely the most precious child---a pure bonus, if you will, for this Momma who was scared to death to try pregnancy again.  

Happy Birthday, dear boy . . . I pray daily that you grow into a Godly young man, and that you enjoy every positive opportunity that crosses your path.  

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!