I Never Imagined

Moving Up

2012-02-17T00:00:00.000-06:00

One of the great features of Clayton's new power chair is the elevator feature. In his manual chair, he is relegated to one height--and with lots of tables and surfaces, it's not always the right height. And while it is great for tables in general, this new up/down feature is great for giving him a new perspective on many tasks.

He was more than excited the other night when I asked him to "help" me with the dishes. He worked and worked putting things in the sink and then taking them back out again.

He even tried his hand at drying a bit!

When I told him I wanted to take his picture, he was glad to grin for me. He was pretty proud of himself. We just take so much for granted--it has probably been years (since he was itty bitty) since he was raised up to the sink to peek in. So just getting to see what a sink even looks like was new to him! Long after I was done, I let him just hang out at the sink and explore. He's got a lot of learning to do about the environment above his normally three feet height.

He eventually got bored though. Told me he had to wash himself next!

Love Bears All Things

2012-02-14T17:00:00.001-06:00

I wasn't going to do a blog post today. Mainly because I never know what cheesy thing to actually say on holidays like this. But as I've thought about my valentine--my husband, my friend--all I keep coming back to is Paul's first letter to the Corithians.

Love bears all things, believes all things, hopes all things, endures all things.

I Corinthians 13:7

Things have not always been easy in our marriage. In fact, we were in active marriage counseling when our twins were born early. Our counseling sessions were abruptly stopped for obvious reasons, and about a year after surviving all of the trauma surrounding Shawn's death and Clayton's health, our counselor declared us graduates--heck, if we could make it through those stresses, surely we could handle the everyday stresses of marriage, right?

I'd like to say life was a bowl of cherries from that point on, but of course it hasn't been. The stress of having what we thought was our future ripped out from under us was a lot to bear. But you know what? Our love has endured. More importantly, our commitment to each other in Christ carried us when we didn't exactly feel the love for each other. This foundation in Christ bore the load for us when together we were almost crushed by life's circumstances.

A lot of changes have been taking place over the last couple of years, especially in me personally. It is with these changes that a deeper peace is beginning to evolve in our relationship. In spite of it all, we have survived together. We bear together, we believe together, we hope together, and we endure together.

I love you, Brian, and I'm glad you're my valentine.

Photo Friday

2012-02-10T00:00:00.002-06:00

May they always journey together . . .

Guess What Happens Today?

2012-02-09T00:00:00.001-06:00

You get to see my new website!

Just click on the pic above for a closer look at what I've been working on lately!

A Photo Story

2012-02-07T00:00:00.001-06:00

So Nicole and I attempted the impossible the other day: capture a photo with all six kids looking in the general direction of the camera.

We once again proved it is impossible.

And as you'll notice, the principal offenders are my sons. Jackson was having a grand old time singing and talking, and eventually getting his cousins' attention. And then of course he slammed his head against that rock behind him.

This meant that even after comfort from Momma, he was sobbing and screaming.

It was torture, you know.

By the time he had calmed down, even the dedicated poser Drew was pretty much done with the photo sitting.

In the end, I'm considering myself lucky to have gotten this cute shot of Clayton and Taylor.

To Each His Own

2012-02-02T00:00:00.002-06:00

This is Jackson "riding his bike." I'm hoping he'll clue in soon that the seat is meant to be sat on and the pedals are meant to be pushed. But for now, he seems pretty content "riding" like this.

Oh, Brother

2012-01-31T00:00:00.000-06:00

1980-something

My brother and I both didn't start singing publicly until our adult years. And we didn't start singing together until just a couple of years ago. We did a couple of ditties at his previous church and they went well, but never did I get emotional about it.

We sang together this past weekend and while I listened to my brother belt out his part, I couldn't help but get teary. I don't know what the difference was this time--maybe a combination of things: our families are closer than we've ever been; we now worship together at the same church home; a sweet spirit present while we were singing; and an awesome song with a simple, but very true message. Whatever it was, I was nearly bursting with pride while listening to Josh sing his heart out. Is the song technically perfect? No. We had a few minor hiccups that could be polished with more practice. But I don't think those things even mattered, because the spirit of God was definitely present.

I couldn't ask for a sweeter time--singing with my brother while he and my husband play accompaniment. I hope you enjoy listening as much as we love doing it. :) (And if you listen closely you can hear Clayton singing along as well!)

All His

2012-01-26T00:00:00.007-06:00

It's official! Clayton is now the owner and driver of his very own power chair! He has been looking forward to this day for so long, he was grinning from ear to ear the whole time the DME rep was here. In fact he insisted on waiting by his window a full two hours before the rep was even scheduled to arrive . . . he is definitely patient and persistent!

I was afraid he would forget all of his training in the loaner chair we had months ago, but he is already remembering to be careful and is doing his best to avoid the many obstacles in our house. The toughest obstacle will be that one named Jackson, who has in fact forgotten all about the safety rules we had with the loaner chair. He is going to require a breaking in period for sure since he can't help but explore the ins and outs of this machine with so many parts and gadgets attached. I just hope we can keep him from losing a toe in the meantime!

We haven't even had the chair 24 hours, and Clayton is already the master of his own movements (what a freeing concept!). He has been roaming around, digging through drawers and venturing to spots he normally doesn't get to go (my closet, for example). And while it's a little cumbersome keeping him out of trouble, I say "go to it!" It's about time he was able to explore his own home without someone else restricting his every move!

Scary

2012-01-18T00:00:00.001-06:00

So have you heard about Amelia? If not, her mother tells the latest in their story right here.

I have to admit that even though Clayton has never been deemed "mentally retarded," he is "developmentally delayed," and as a special needs parent, this scares me to death. It's not a "big and bad" insurance company that's telling Amelia no to a life-saving operation. It's the doctor(s) who is indeed charged with keeping her alive! Please tell me I'm not the only one who sees the irony in this?

I couldn't put my finger on just why this rubbed me the wrong way (child needing a transplant put aside), but when I read Katy's post, I found myself nodding in agreement the whole way through. I'm like her--I've seen a whole host of people in my life who were [supposedly] of normal intelligence whose "quality of life" wasn't near that of Clayton's! Talk about someone who is living! And he is enjoying every minute of it! How many of us would be able to say we enjoy life as much as Clayton if we were suddenly limited by his disabilities? I don't know if I could . . .

At any rate, as a parent of child with Cerebral Palsy, it is frightening what may lie ahead in the world of medical care and our ability to access it affordably. Just another reason I'm praying diligently for a miracle in Clayton's health.

ETA: I just read a few of the comments on Amelia's mom's post. Had to stop. Absolutely. Incredible. I was reminded that yes, some people really do feel like kids with any "defect" don't count and should be done away with as soon as possible! God help them if they ever become the parent or grandparent of a child with disabilities.

Photo Friday

2012-01-13T00:00:00.001-06:00

I say

"train? again?"

He says

"the camera? again?"

I guess we all have our favorite toys.

Think He Doesn't Know? He KNOWS!

2012-01-11T00:00:00.001-06:00

Clayton has recently rediscovered his iPad. Or maybe I should put it this way: Clayton can now play with his iPad without Jackson taking it away constantly. (So glad that stage is over!) There is one difference this time around though--he has discovered YouTube. He used to just mess around with apps, email, and the web in general. But now he's figured out he can go straight to YouTube and watch pretty much any Gaither song ever recorded.

So yesterday morning, he was busy listening to a variety of songs (he is like his Uncle Josh, who never gets to the end of any song before moving onto the next one). I heard the piano introduction to an old hymn I wasn't familiar with and then I heard Clayton immediately singing along with the words. I didn't clue into the words at first, I was just wondering how he knew the song since it's not one we have on DVD, and as far as I know, he's never seen it on T.V. Then I actually listened as he played the song a second time:

On that resurrection morning
When all the dead in Christ shall rise
I'll have a new body
Praise the Lord, I'll have a new life!

Sewed in weakness, raised in power
Ready to live in Paradise
I'll have a new body
Praise the Lord, I'll have a new life!

Chorus:
I'll have a new home of glory eternal
Where the redeemed of God shall stand
There'll be no more sorrow
No more pain, there'll be no more strife
Yes, raised in the likeness of my Savior
Ready to live in Glory Land
I'll have a new body
Praise the Lord, I'll have a new life!

What a hallelujah morning when the
last trump of God shall sound
I'll have a new body
Praise the Lord, I'll have a new life!
Graves all bursting saints all shouting
Heavenly beauty all around
I'll have a new body
Praise the Lord, I'll have a new life!

I don't know. Maybe he's heard it with my mom. But I don't know when since this is such an old taping. And if he has, it couldn't have been but once or twice. All I know is he knew exactly what that song was about and while many of the Gaither people in the video were having to use hymnals to remember the words, Clayton sang right along like he'd heard it a thousand times.

Clayton knows. Clayton KNOWS! He knows the promise that awaits him!!

But those who hope in the LORD

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint!

Isaiah 40:31

Move Forward, Move Upward

2012-01-09T00:00:00.000-06:00

"Faith is progressive. Faith never gets into a bad situation and says, 'I'm just going to sit here and die. It's over.' Faith never stands in the desert, having a pity party with everything drying up around it. You walk by faith. You don't stand still, drowning in your misery. When you get in a wilderness, you keep walking; you keep going forward even if you are only making an inch of progress with each step. When you get into battles, you have to keep saying, 'I will move forward.'" ~Jentezen Franklin, "Fasting"

This passage resonated with me as I read this weekend. I felt compelled to share it with my blog readers. Thankfully, I am not in the "desert" at the moment. But maybe someone out there needs to read these words today . . . just keep on keeping on--walk with and towards the Lord, and the reward will come.

These were all commended for their faith, yet none of them received what had been promised, since God had planned something better for us so that only together with us would they be made perfect. Hebrews 11:39-40

Photo Friday

2012-01-06T00:00:00.001-06:00

Someone had a birthday this week, and for some reason he was feeling generous on that day . . . Brian never wants to pose for me, but as we spent a few hours out of town *alone* for his birthday this past weekend, he was in an agreeable mood!

I'm just hoping he doesn't get too upset when he realizes I've posted it here. I think those might have been his last words on the subject: "be careful about posting those online . . ." Well, honey, I'm being careful. Careful to post a good one, that is!

So even though we celebrated his birthday, I walked away feeling like I'd received a gift too. A willing model goes along way to make me happy these days!

The Train Trance

2012-01-04T00:00:00.000-06:00

One of the nearby libraries hosted a model train exhibit over the holidays. I'm not sure why people associate trains with Christmas, but for some reason, the two always go together! We went with some friends of ours, and as usual all the kids were hypnotized by all of the inner workings of the models.

I call it the "train trance." I see it a lot these days!

Loved that at this exhibit, the kids were allowed to work the controls.

I just like looking at all the miniature stuff. Almost makes me want to sit down with my brother and play with some Hot Wheels like we did as kids!

See. There it is again.

The train trance.

Big Boy Bike

2011-12-28T00:00:00.000-06:00

Up until now, Jackson's "bike" has actually been a tricycle. Santa Claus changed all of that with the delivery of a big boy bike made for Jackson. He was pretty excited once the sleep wore off and he realized it was just his size.

The trick is going to be getting him to actually pedal. Right now, he is into only putting on the brakes or foregoing riding altogether and walking beside the bike instead of riding! I have a feeling by this time next year, though, he'll be an old pro!

Christmas Morning

2011-12-26T00:00:00.001-06:00

My sweet boys on Christmas morning 2011. They are normally late sleepers, so I had to wake them up extra early in order to enjoy Santa's gifts before we went off to church. This meant for the first thirty minutes we were in the living room they were having trouble focusing on what was actually happening! You can tell by the zombie-look on Clayton's face that he wasn't even awake yet when I started snapping these photos!

As an aside, they are holding two of the SEVEN trains they received between the two of them this year. They are set to go when it comes to railroading for the next year!

Merry Christmas!

2011-12-25T00:00:00.000-06:00

Wishing everyone a magical Christmas and peace throughout the coming year!

Prank Caller

2011-12-20T00:00:00.000-06:00

Clayton has a new favorite past time: swiping people's phones. Most kids these days are wanting phones so they can play games. Not Clayton. He goes straight to the contact list and starts calling people!

He thinks it is absolutely hilarious to call all of these (usually) random strangers! As for the person on the other end? I'm sure confusion abounds when they get a call from a little boy who only laughs hysterically. He loves it even more if he hangs up on them and immediately calls them back. Talk about a regular prank caller!

It doesn't help that he has a few people who indulge him this pleasure. He has several ladies at church wrapped around his finger and they just let him call and call and call on their phones. I'm sure their friends thank them repeatedly for having to participate in this little game. :)

Ring the Bells

2011-12-19T00:00:00.000-06:00

At the beginning of the school year, the Sunday School classes at church were promoted as usual. There was only one small problem with that--basically, Jackson's whole class was promoted and left him behind to a virtual solo existence in the toddler class. Before his friends were promoted, he loved Sunday school; afterwards, not so much. So after a few Sundays of trying to figure out what to do, he was invited to the preschoolers class on a trial basis. And except for the not being potty trained part, I think he's fitting right back in with his old buddies. He may be a tad bit shorter than the rest of them, but he definitely hangs tough in all of their play. :)

From all reports, he was really getting into the singing and bell ringing in the practices leading up to their performance, but at the dress rehearsal on Saturday, all he did was stand on the stage and chew on his fingers. He didn't do much more during the actual performance on Sunday. He just stood, stared, and chewed as the rest of the kids sang and did their motions. Thankfully though, he decided to participate in the bell ringing song, and it was of course, the most precious thing ever (spoken like a true Mother, right?). All things considered, I was just happy to not have a repeat of last year's performance!

Artists at Work

2011-12-13T00:00:00.001-06:00

We're having to be creative around here in order to get everyone's (read: Jackson's) energy fully spent in a day. With it being quite chilly outside, I'm not particularly wanting to spend hours in the backyard playing while our teeth chatter. But even before it got cold, we had several days of rain that just about made us go stir crazy.

Brian decided to make the garage the new play area and this seemed to satisfy both boys. Mainly because Daddy decided they would get to "paint" with all of his supplies. The great thing about this painting was that it didn't involve paint! Brian just poured some water in some bowls and both Jackson and Clayton went to work painting on their cardboard boxes.

Another bonus? Clayton was getting all kinds of sensory therapy. He won't do this type of activity for his O.T. In therapy, he gets weirded out by the liquid and the brushes. But for Daddy, there seems to be no problems . . . funny how it works that way.

Of course it always helps to have Jackson along to motivate him. Watching Jackson at a task always seems to push Clayton to have his turn at whatever fun is to be had.

I have to say, though, that Jackson seemed to be taking his creation quite seriously. Who knows? We might have a mini-Picasso on our hands!

Faith of a Child

2011-12-09T00:00:00.001-06:00

For many years, Clayton has repeated with us as we pray before meals: "God is great. God is good. Let us thank Him for our food." Only in the last couple of weeks has he ventured on his own into the conversation of prayer. His prayers are very topic appropriate, and very age-appropriate. But above all, they will make you think . . .

"Father,

Thank you for my sandwich.

Thank you for my chest muscles.

Amen."

Chest muscles aside (don't ask, it's a long story!), the striking part is this: Clayton remembers to give thanks for a sandwich that he isn't even able to eat yet. Talk about another dose of perspective! We are told to pray, and to be thankful to God even before the blessing comes. Clayton's life has put him on the fast-track of believing without seeing--it takes most of us a lifetime to get to that point!

Be cheerful no matter what; pray all the time; thank God no matter what happens. This is the way God wants you who belong to Christ Jesus to live.

1 Thessalonians 5:16-18

LiteGait Demo

2011-12-05T00:00:00.000-06:00

Clayton is one of the hardest cases the therapists at his clinic have ever dealt with. They have all been at a standstill of ideas for a couple of years now as he has seemed to reach a plateau on progress in gross motor skills. This is why we were all excited for him to try out a new piece of equipment at the clinic: the LiteGait. Clayton was chosen to demo it with the rep from the company and by the end of her "session" with him, he was walking easily on the treadmill, doing about 60% of the work himself!

It took a lot of trouble shooting to figure out what setup would be best for Clayton. The rep ended up taking his AFO's (ankle/foot orthotics) off, taping his left leg for better position, and eventually adding another therapist for better control. After all these tweaks, Clayton got into a smooth rhythm of walking with their help.

Most of my video is of her trying to figure out what would work best for Clayton. I didn't video much of his actual walking. By the end of the session, he had walked 300 ft. YAY!

This machine is going to be great for Clayton! For one, his therapist basically has another set of hands to help her with the positioning of his upper body, which means she can concentrate on helping him with his legs and feet. It can be used for more than just walking activities, even sitting to standing practice. Not to mention the impact it will have on his endurance!

Our physical therapy goals for Clayton are simpler than ever these days. We would simply love for him to be strong enough to help us transition him from one place to another. I'm hoping this equipment will help build those muscles he needs to help us help him.

In Which We Stretch

2011-12-02T00:00:00.001-06:00

Or more appropriately, "in which Clayton's legs stretch . . . ."

In order to battle Clayton's ever-present spasticity, we've added yet another weapon to our already over-flowing arsenal of equipment. Welcome the knee-imobilizers. These little babies replaced his rather wimpy (in comparison) leg splints that he used to sleep in. Their job is to straighten his legs, and in turn stretch the hamstrings.

Since Clayton is more or less in a sitting position with his hips and legs in a 90-90 degree position most of the time, his hamstrings are getting harder and harder to stretch out into a complete standing position. In fact, it is impossible for him to stand completely straight up. The pain from the inflexibility is finally getting to him and is increasingly hindering his physical therapy. And since his growing body is starting to interfere with his ability to stand in his stander, he must be stretched in another way. He is supposed to wear these immobilizers all night long (can you imagine sleeping in these things??) and during the day if possible while sitting on his bed or stretched out on the couch. We are supposed to get his leg as straight as possible, but as you can see from the pictures, it just isn't happening yet. Hopefully with more time, his legs will loosen up a bit.

For now, I consider us off to a good start. He has slept one full night in them and tolerated them for a few hours on a couple of afternoons. He's been a lot better patient than most of us would be if our legs were in these monsters!

Just Like Duh

2011-11-28T00:00:00.002-06:00

He insisted on dragging the chair in for the picture. He had to be sitting in his chair just like big brother.

Blessed Are Those Who Mourn

2011-11-21T00:00:00.001-06:00

Our choir sang for a memorial service at ACH yesterday. This is the second time we've done it for them. The first time we sang was a couple of years ago and Brian and I both were overcome with emotion. So while I knew what was coming, the grief still crashed into me like a tidal wave. Everyone would have understood if I had bowed out, but I always feel this yearning to reach out to other parents, even if it means wading through my grief once again. And although I'm emotionally drained from the entire program, I feel like opening that wound is a small price to pay if it means even one newly bereaved parent was comforted in that place.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort. 2 Corinthians 1:3-7 (NIV)

I'm still amazed though, how the "stages of grief" cycle in and out of my life, none in the right order, some repeating themselves over and over. There is no rhyme or reason as to what brings on certain feelings or memories, but I'm learning more and more how to just let the feelings flow out of me through the tears. Eventually the tears are dried by the Heavenly Father . . . dried as I am reminded of the promise of Heaven.

Blessed are those who mourn, for they will be comforted . . . Matthew 5:4 (NIV)

On The Homeschooling Front

2011-11-17T00:00:00.001-06:00

Last year we really struggled to get through our school year. It was a year of adjustment for both Clayton and me, and a year of constant growth and exploration for Jackson. And while adjustment is still taking place and Jackson will never stop "exploring," this year seems to be much easier on us all, with actual learning taking place once again. One major thing that has changed is my overall approach to Clayton's learning. For the first two years, I was dead set on him learning to read using the phonics approach, simply because as a learner myself, it seems the most intuitive. But after two years of butting my head against the wall and Clayton only recognizing the letters in his name and no others on a regular basis, I finally realized it might help if I teach him HIS way instead of mine!

Clayton is a listener and an observer. It dawned on me that I should focus on sight words instead of the sounds of the actual letters in each word. DUH! It also dawned on me that reading may be a long way down the road for Clayton and maybe I should focus on just keeping his attention for more than five minutes at a time before I tackle his reading of an entire book! So with those things in mind, I purchased the "My Baby Can Read" series and went back to unit studies (the approach I used during his kindergarten year). The MBCR stuff was fun for him at first, but quickly got old and boring. I wish I would have started him on it four years ago instead of waiting until now. Jackson has learned two words so far though: "hi" and "elephant." :) I still haven't totally given up on it for Clayton, but we have taken a break from it for now.

The change back to unit studies has been fantastic. And while I've used other resources in the past, so far this year I've used all my material from Hands of a Child. We started the year off studying trains (since both boys are completely fascinated by them), did a unit on horses, and now we are studying the history behind Thanksgiving. I am only using about a third of the material in the studies I've purchased, and we take about four times as long as planned with a study. But with lots of repetition and interactive learning, Clayton is definitely retaining the information better than years past. Without even being prompted, he told his speech therapist yesterday that the pilgrims came on the Mayflower. So awesome! Definite progress in his ability to learn and relate information!

Miraculous

2011-11-14T00:00:00.000-06:00

A miracle happened this weekend. Jackson willingly posed for me as I tried out my new lens.

My busy two year old looking intently into the camera lens on purpose? And Act of God indeed!

Photo Friday

2011-11-11T00:00:00.000-06:00

So I really wanted to blog about something interesting this week, but my mind is just blank right now . . . I've been living and breathing photo sessions and loving every minute of it. My favorite sessions are seniors and this past weekend I got to shoot a senior session at a beautiful, yet rustic, location. Brooklyn is the cousin of Abby and like her cousin, she was totally into the session. We had a lot of fun capturing some great images!

Runaway Songwriter

2011-11-08T00:00:00.001-06:00

I took my eyes off Jackson for maybe a minute the other day. After an extensive search, I found him out back in the trailer, singing to his heart's content. It was a new song he had written . . . one about "Brian pulling the trailer with the Rhino." (See previous post for Rhino reference). Have a listen to this gift of creativity for yourself. =)

He gets it from me.

Okay, maybe a teensy bit from Brian, but 90% from me. :)

Family Ride

2011-11-03T00:00:00.001-05:00

Saturday was a rare day in that we had absolutely nothing planned. This meant a day of fun spent together! We decided to take the Rhino up north for our first family trail ride adventure. I have to admit that I was a little skeptical about getting rid of the four wheeler and replacing it with the Rhino. Skeptic no more! This vehicle is absolutely perfect for the four of us and I'm sure many more days in it are ahead of us.

We thought that after the rain last week we would be able to spot some pretty waterfalls. I was armed and ready with my camera, but all I got was a dry creekbed. Nothing but a sign telling us where the falls would actually be if we hadn't had such a dry summer! So much for scenic photography . . .

Jackson was the offical map reader. Kept asking for his "book." He's got such a good sense of direction, he could even direct us while reading it upside down. :)

Ten Gallon Hat

2011-11-01T00:00:00.001-05:00

For Halloween this year, Clayton was a cowboy through and through. From his ten gallon hat to his goat-ropin' boots, he was dressed just right for sittin' in the saddle all day. I thought he looked quite spiffy, but the best part was how excited he got while we were in the store looking at everything. Once he saw himself in the mirror with the hat on, there was no removing the ear to ear grin on his face! He was chatty-cathy the entire shopping trip. He couldn't wait to get out the door to show everyone his new hat and boots!

CHOO-CHOO!

2011-10-31T00:00:00.001-05:00

In my totally biased opinion, Jackson was the cutest kid at the church's Fall Festival this year. What do you think???

Woman of Faith

2011-10-26T00:00:00.000-05:00

One of the sermons that Pastor Maria preached at the Prayer Conference still has me thinking. It touched on one of the great ironies of my life and the baggage that I carry around.

[I am telling this story with complete humility . . .]

Faith. It's one of my spiritual gifts. After the last service of the conference two complete strangers came up to me (at separate times) to tell me what a great "woman of faith" I am. They could just "see it in my face." I just "radiate" with love for the Lord. And I have had many comments left on this blog during trying times about how "strong" I am, how in awe people are of me and how I handle it all. So after the other night and those two ladies, I got in the van and just cried. Seriously? If people only knew the REAL me! The REAL me struggles daily to keep my path straight. To remember to lean on Him and not myself. To keep my anger in check. To reign in my jealousy. To not totally drown in sadness!!!

I have lived a truly special life. I have always felt unique and "chosen" in a way. But along with that feeling comes extreme self-doubt when I fall by the wayside. It's so amazing how I can feel so confident in some ways and then turn around and feel so cowardly on the inside. Just shows you how the devil works on your deepest insecurities! He can pick out the smallest thing, bring it to my attention, and then BAM!, I've blown it into a full-fledged attack of complete despair. But even in my despair, the one thing I'm sure of is My God. Totally, completely, utterly unsure of myself--but totally reliant on Him. And maybe that's what saves me every time. When I'm in the pit, I always choose to look back up. To look back up full into my Father's face and remember that He does indeed love me as far as the east is to the west! He loves me despite my weakness, loves me despite my shortcomings. He wants me to forget all that extra baggage, and MOVE ON. Move on FULL IN HIS GRACE AND MERCY!

Maybe it is this continual choice to get back up and dust the devil's dirt off of me that makes me a "woman of faith." He has never forsaken me, so I will continue to shout and sing his praises, letting his light shine bright enough to carry me through still another day.

These are the things I go over and over,

emptying out the pockets of my life.

I was always at the head of the worshiping crowd, right out in front,

Leading them all, eager to arrive and worship,

Shouting praises, singing thanksgiving—

celebrating, all of us, God's feast!

Why are you down in the dumps, dear soul?

Why are you crying the blues?

Fix my eyes on God—soon I'll be praising again.

He puts a smile on my face.

He's my God.

When my soul is in the dumps, I rehearse everything I know of you,

From Jordan depths to Hermon heights, including Mount Mizar.

Chaos calls to chaos, to the tune of whitewater rapids.

Your breaking surf, your thundering breakers crash and crush me.

Then God promises to love me all day, sing songs all through the night!

My life is God's prayer.

Sometimes I ask God, my rock-solid God,

"Why did you let me down? Why am I walking around in tears,

harassed by enemies?"

They're out for the kill, these tormentors with their obscenities,

Taunting day after day,

"Where is this God of yours?"

Why are you down in the dumps, dear soul?

Why are you crying the blues?

Fix my eyes on God—soon I'll be praising again.

He puts a smile on my face.

He's my God.

(Psalm 42:4-11 The Message)

Abbreviated Recap

2011-10-24T00:00:00.001-05:00

Exhausted! That is the only word for describing me at this moment. Last Tuesday, we set out for Fort Worth to attend the Crossroads Tabernacle Prayer Conference. And after basically a 72 hour prayer and worship marathon, we drove home this weekend to another spirit-filled service at our home church. It was such a blessing to have been led by Corey Jones and Michael and Maria Durso. Maria is probably the most dynamic speaker I have ever heard. The Holy Spirit is all over her messages--almost free flowing out of her. Not to mention that her and her husband are probably the two most knowledgable people on the scriptures that I've ever met. All three pastors gave more incredible insight on the importance of prayer this year--I'm completely sold out to to this view of being in continual conversation with God. I'm just praying my fleshly tendencies will be able to keep up with the deal . . . and while it may take me all week to recover from the crazy schedule we kept, I wouldn't trade the experience for anything!

40/52 Vintage

2011-10-17T08:15:00.000-05:00

So behind on posting these . . .

Fence Row

Pretty much everything out at Ms. Toby's qualifies as "vintage!"

Birthing a Business

2011-10-13T00:00:00.000-05:00

Do you remember when Jackson was born and I had no time to blog? Well, it seems the blog has moved to the bottom of the list of things to do once again. Although I haven't given birth to a live baby, I'm still busy--this time it is a business that is up and coming, and constantly evolving. Lately I've been scheduling sessions, proofing photos, and taking an online class. My free time has been eaten up, but I'm loving every minute of the creative process. One of my big decisions has been to officially "do business as" Photography by Ashley Smith. I still identify with the brand of "I Never Imagined," but I decided it was time to put my big girl panties on and just go all in . . .

And to think this is only the beginning . . . exciting things (and beautiful images) still to come!

Taking the Good With the Bad

2011-10-07T00:00:00.000-05:00

Yesterday was a strange day. Nothing crazy happened, but I felt like my emotions were being pulled from one extreme to the other. When I picked up Clayton from physical therapy, I could tell his therapist had something on her mind as she followed us to the car. As we began to talk, my tears started to form behind my sunglasses. (And of course, Clayton started reacting in his always-tuned-in-to-mom's-every-emotion way). Reesha has told me on more than one occasion that Clayton has them stumped. "He's a hard case," she once said. Uh-huh. Exceptionally hard!

She reported that lately his hamstrings are so extremely tight that Clayton is near tears during some of his exercises in P.T. This means something. Clayton's pain tolerance is such that he has always been able to hang tough with all of his P.T. exercises. From a P.T. standpoint, they are doing everything they know to do to help Clayton's spasticity. From a medical standpoint, doctors are offering no other viable options (read: ones that we will agree to). Any option we've been given up to this point would negatively affect his trunk, which even on good days, he has trouble controlling enough to sit up. Meanwhile, his legs are getting harder to "straighten" (he can't actually straighten them out anymore), and he has a partial hip subluxation on his left side. He hasn't made real progress in P.T. in a couple of years, which means The Powers That Be will want to cut it off if that happens for a couple of more years. It is so scary to think that he has made as much progress as he is going to make . . .

I think one of the reasons I get so weepy is that once again, we are having to adjust our expectations. And even though he is eight years old, for the past few years, we have found ourselves discussing more and more his deteriorating level of function. Can you imagine hitting the height of your physical functionality at about 5 years old? I can't even type how angry that makes me feel for my son!!!! We used to talk about the few things he COULD do physically, and even on that short list, some of those things are already being marked off. Breaks my heart!!!

*****************************************

I had a long drive to the doctor for Clayton's G.I. appointment to digest all of this information. I cried my silent tears on Clayton's behalf while he sang and talked in the backseat, ignoring my sad mood. (Thankfully!) We went into the doctor's office with no real expectations--just there for a check up, when really she hasn't done much for Clayton in the last couple of years. When we finally saw her, I knew she was going to cut the cord once and for all. She declared that after eight long years, her work with Clayton was finally done! So after beginning with a tiny and very sick preemie, sending him on the road of rapid weight gain, and then finally weight loss, she was instrumental in helping Clayton arrive at a healthy and very average weight for an eight year old boy. Average numbers sound like A+'s when you are the parent of a severely disabled child!

Our relationship with Dr. G.I. has been a close one--we used to see her quite often and our visits have always ended with hugs. Such a milestone to have Clayton declared a "graduate," but I was sad to say goodbye to this lady who had guided my every move on feeding my tiny baby. I was so overwhelmed with all of his feeding issues when she entered our lives. She was a calm, reassuring and very authoritative voice--a voice I trusted from our first visit with her. But she is right. Her job is long done, and Clayton has more fun things to look forward to than G.I. checkups! His "gut" is still sensitive and his bowel is still both weak and strong (depending on the day and his spasticity), but all of these are essentially non-issues these days--issues we have learned to work around in our day to day lives. So after all of these years, his G.I. graduation is definitely a praise-worthy event!

******************************************

So there it is. The recurring theme of our lives. Taking the good with the bad. Continual blessings despite heartaches over a regular sense of loss. Many of those blessings have come in the form of outright supernatural miracles performed on Clayton's behalf. And guess what? It will take another one of those miracles to help Clayton's legs. A miracle straight from Heaven.

Stepping Things Up

2011-10-05T00:00:00.001-05:00

For several months, Christina focused on simply riding the horse with Clayton. Getting him used to the horse, stretching his legs, forcing him to use his abdominal muscles, etc. It was slow going, but definitely needed in order to get Clayton totally adjusted to the saddle.

But in these last few weeks, she's started to push him. Pushing his balance, pushing his abs, and pushing his comfort zone. It's been interesting to watch the transition! And while any stranger passing by wouldn't think there was anything to these exercises, as his mother, I think it's pretty exciting!

So many complex things happening with his body in an entirely different environment. An environment that he can actually continue to excel in--how cool would it be if he could become proficient enough in balance and coordination to let the horse be his legs in different settings?! Gives me goosebumps to think about the possibilities . . .

I don't think he gets that these skills could open doors for him. All he knows is at the end of his lesson, if he's done well, he gets a ride with Ms. Toby on the four wheeler.

If that's what gets him motivated, then ride, baby, ride!

Hide and Go Seek

2011-10-04T12:00:00.000-05:00

Jackson is all about hiding and finding--has been since he was mobile. And the reasons he's so good at it is because he is incredibly patient and not scared of the dark! He'll hide in any nook and cranny and wait quietly until you indeed find him out.

It is interesting though, how sometimes he thinks he is hidden, but isn't really. :)

Know why he was hiding on this day? I had my camera out! My camera immediately puts my kids on strike and sends Jackson on a journey to find a hide out . . . I still managed to get his cute smile as I made eye contact with him. He always greets me with an "I FOUND YOU, MOMMA!"

Yes you did, sweet boy. :)

39/52 Man vs. Nature

2011-10-03T00:00:00.004-05:00

And this most recent week's theme was easy for me:

Reigning the River

The lock and dam near my house. Perfect example of man's attempt to tame nature.

38/52 The Eyes Have It

2011-10-02T00:00:00.000-05:00

Yikes! I'm behind! I've been taking photos, but I've been seriously lacking at getting them processed and posted . . . here is my photo of the week for last week, when the theme was all about the eyes:

Peeking

Jackson loves to hide, but sometimes his curiosity gets the better of him and he comes out of hiding to see what's going on without him.

The Other Bicyclist

2011-09-28T00:00:00.003-05:00

We had another avid biker with us at last Friday's event.

He was supposed to stay with the preschool group, but somehow kept showing up at the stations meant for the big kids.

He was thrilled when my friend let him try out the "balance bike" for toddlers.

I think I might know what needs to be in Santa's sack of toys this Christmas. :)

Bike Rodeo

2011-09-26T00:00:00.003-05:00

Friday morning our homeschooling group had our first ever "Bike Rodeo." The owners of the local bike shop are actually members of our group, and they, along with the bicycling advocacy group of our town, hosted this "safety skills" event for all our our kids. I wasn't sure how Clayton would fit into this picture, but we loaded up his bike and showed up ready to go. It turned out fabulous! (Photo disclaimer: ignore Brian's lovely work attire!)

The kids were each checked in and given a card with a list of stations to visit, with tasks to complete at each station. The first station involved a safety inspection of Clayton's bike and helmet--I'm happy to say that except for low tires, Clayton's bike passed inspection. :)

The next station involved learning to do a "power start," and then stopping at a stop sign. Clayton didn't exactly get off to a power start, but he did pedal almost the whole way by himself and stopped right at the stop sign. He was too excited at this first station--I think it finally dawned on him that he was getting to REALLY participate in this event!

The next station involved weaving through tennis balls and avoiding obstacles. With a little help, he was able to pass with flying colors!

The other stations were all about learning to watch for traffic and avoiding the bigger obstacles. One station was called "Demon Driveway," which most know describes our driveway to a tee . . . he learned to look left and right and even learned the hand signals for turning left and right.

Clayton was all smiles all morning. Each time we've mentioned the Bike Rodeo since, he simply says, "DO AGAIN!" Brian and I were elated that he was able to fully engage in this activity. No sitting on the sidelines this time! It was wonderful!!

Parade: Behind the Scenes

2011-09-22T00:00:00.000-05:00

The annual Fair Parade was this past Tuesday and as usual, there was plenty of hustle and bustle in downtown. I've never taken Clayton to the parade simply because I think it would be sensory overload for him. The sirens at the beginning plus the big crowds would probably unnerve him, which would in turn send me into a tizzy! So instead of enjoying the actual parade, we went for a little behind the scenes action. Ms. Toby invited Clayton to come visit her and her crew in the park while they waited with their horses and did all their preparations for judging.

Clayton and Jackson both were excited and nervous being around all the horses, wagons, and trucks. One minute they were laughing and living it up, and the next they were crying! I had to hold Jackson the entire time, but I was determined to get some pics of Clayton interacting with Ms. Toby and Ms. Christina (who he rides with most of the time).

Toby didn't know it, but she was doing some sensory therapy when she asked Clayton to help her with her makeup. It was a struggle to get him to work with the brush and loose powder, but he only gagged once and even managed to get one side of her face done. :)

He was a happy boy when Christina showed up. And even though she had lots to do in a short amount of time, she let Clayton take a short ride anyway. It's little things like this that make me put stars by her name in my book!

It was hard to concentrate on the horse though, with so many trucks and trailers to watch . . .

Hmmm . . . maybe someday Clayton will be able to ride alongside them in the parade--wouldn't that be cool?!

He'll need to work on this part though:

If he's on the horse very long by himself, he starts to do "the lean!"

37/52 Momentous Moment

2011-09-17T00:00:00.001-05:00

Baby Steps

Jackson harasses Katie relentlessly. The only reason she even pays any attention to him is because she usually gets bites of his snacks, as he leaves a trail when eating. But other than that, she doesn't have the time of day for him. Doesn't stop him from trying though! He is constantly trailing behind her, hugging on her, hitting, and grabbing, totally oblivious to her growls. So last weekend when she let him sit close and even touch her for a couple of minutes, it was definitely a MOMENTOUS MOMENT!

Wade in the Water

2011-09-15T00:00:00.000-05:00

My friend Karen said something the other day that resonated with me. She was referring to how different people deal with tragedy and trauma each in their own way.

"Some people need to wade through it and some need to find a bridge."

I'm definitely a wader.

Splash, splash.

A Little Bit of Fishing

2011-09-14T00:00:00.000-05:00

We went to a birthday party on Sunday where everyone fished. Great and refreshing idea for a kid's party! It's just too bad it turned hot again--those fish weren't biting at all. Still, it gave Clayton a chance to try his hand at holding the pole on his own and even reeling in the line with a bit of help.

As usual, his attention was more than divided--the trucks and cars driving made it hard for him to concentrate on catching any fish.

Jackson stayed still for about two minutes. Long enough to reel in the line one time. He didn't seem too interested in fishing as a leisure activity!

36/52 A Thirst For Knowledge

2011-09-12T00:00:00.002-05:00

Anytime, Anywhere

One of the best aspects of homeschooling is the freedom to "school" in any setting, at any given time. Since I've had trouble keeping Clayton focused while Jackson is around, I have to steal away the moments when Jackson is otherwise occupied and use them to Clayton's educational advantage. This means schooling on a crazy schedule for now, but whatever works, right?

This photo was taken on Saturday. We had been camped out in the garage watching the traffic at Clayton's request. When Jackson went down for a nap, I took the moment and ran. Out came the books and teaching materials! And in this case, those materials included a book about trains---Clayton is fascinated by trains these days and it only makes sense to explore all aspects about them for his first unit study of the year!

Remembering

2011-09-11T00:00:00.001-05:00

Shooting Towards a Purpose

2011-09-08T00:00:00.006-05:00

The first time I was introduced to the world of photography (the world of shooting in "manual" mode, that is), Brian was behind the camera. He was a film shooter of course, and he had me intrigued with the options of stepping into the creative side of photography. During that summer of 1996, he tried his best to explain the ins and outs of the exposure triangle, but I suppose my love sickness got in the way of me actually taking all the information in . . . so although I continued to use his fancy SLR cameras, I had no idea what I was really doing with them, nor did I realize the potential of shooting manually.

Fast forward to August 2003. The night Shawn was dying. Thankfully, I had quickly gotten into the habit of carrying our camera and rolls of film every trip into the NICU, and I had it that night. We snapped photos of the last hours with our son in what would otherwise be known as horrible lighting and photographic conditions. It didn't matter--we wanted to freeze those moments in time so that we could have them forever. The importance of us having our camera with us that night really hit home when we were taking care of Shawn after he actually passed. The nurse urged us to enjoy these moments and take as many photos as we wanted, both for our sake and for Clayton's in the future. She offered the use of the NICU camera and my mouth dropped open. It was a polaroid.

Let me repeat.

In the year 2003, all they had to offer parents who had suddenly lost their child was a polaroid camera.

Can you imagine if the only pictures you had of your child were one or two snapshots taken with a polaroid camera?

Some of those infant deaths happen so quickly (we luckily had a few hours to prepare), that many parents don't have a chance to use anything other than what is available at the hospital. It really bothered me that many parents walked away with just these couple of snapshots of their sweet baby.

In the months afterward, it bugged me to no end that our pictures of Shawn after death (the only ones that show his face without the ventilator tubing) showed the discolorations brought on by the infection and many medications that were injected into him. Moreover, I regret every. single. day. not taking photos of him at the funeral home when all of that had been removed and his precious body was just that of a beautiful baby.

It was in 2005 that I started scrapbooking, and I became immersed in the world of memory keeping. I was exposed to mother after mother who not only created beautiful art with paper, but took some pretty inspiring photos of their children to boot. I started getting just a bit more serious about my pictures. We bought our first digital camera and I went to town snapping photos. It was also around this time that I became aware of the national organization, Now I Lay Me Down to Sleep. At the time, they had no members in Arkansas and I had the fleeting thought that maybe one day I could perform that service for parents who had or would suffer infant loss. But I knew that I was no where near good enough to volunteer. It was just a seed of an idea that was planted in my mind.

In 2009, I decided, in my usual fashion, that anything worth doing is worth doing right. We upgraded our camera and I was determined to learn all there was to know about shooting manually. I've learned so much over the past two years--constant study and practice has continued to help me improve my photos. The cool thing is, I've just touched the tip of the iceberg! The world of possibilities is endless when it comes to creating beautiful photos. And as my skills have improved, that little kernel of an idea--of helping NILMDTS--has begun to sprout.

It was just last week that I was reminded of how much I want to help parents in this way. I learned of two infant deaths, one stillbirth and one just hours old. Oh, how I wish I could have been there to document the few hours these families had with their angels! Not only document it, but document it with more than just snapshots--document it with beautiful family photos that would truly be timeless!

I have such a long way to go. A lot to learn about shooting in low lights and becoming confident enough in myself to offer my services. Not to mention being emotionally ready for the onslaught of memories I would relive each time I shot one of these sessions. But in my mind, I keep thinking what's wrong with a few tears and remembering such a special time in our life . . . especially if it means I'm capturing that special moment for another family?

So it is with this as one of my goals I continue to push myself. Push towards becoming better and better with using my camera as my tool--my tool to capture priceless memories for not only the living, but the dying as well.

And who knows? Maybe you have come to the kingdom for such a time as this and for this very occasion . . . Esther 4:14b

35/52 Lazy

2011-09-03T00:00:00.000-05:00

Stacks

It's not that I'm lazy per se, but these stacks of papers on my desk always seem to fall to the bottom of the to-do list . . . eventually I get fed up with the clutter and put it all in its place; but about half the time, this is exactly what my desk looks like. Not very attractive, I know!

Photo Friday

2011-09-02T00:00:00.003-05:00

Well, I'm moving right along in my adventures in photography and this week I had the opportunity to shoot photos of this beautiful young lady! Abby was a perfect model and I could tell she was enjoying the experience as much as I was . . . maybe we'll get to do it again soon!

Didn't take long for her inner supermodel to start shining through!

When she changed into her cheer clothes, I started having flashbacks to my many years of cheering. When she started to actually do a cheer, I just laughed inside--I'm sure my entire family remembers "fondly" me cheering constantly, no matter the time or location!

Unfortunately, by the time we moved downtown, we were quickly running out of light. I was able to snap this gem before it was completely dark though . . . so glad we didn't quit before I was able to capture her like this!

Who Knew?

2011-08-31T00:00:00.000-05:00

I bought a remote for my camera last week and if I had known how much the boys were going to love it, I would have bought one long ago! (Wait . . . boys? remote? Of course they love it!) We had the best time smiling and cheesing for the camera with no one behind it. They thought it was hilarious! Guess I'll start shooting the pictures like this from now on if it means getting a genuine smile from them!

In Heaven

2011-08-28T00:00:00.004-05:00

Joy pulsated through me as I looked around, and at that moment I became aware of a large crowd of people. They stood in front of a brilliant, ornate gate. I have no idea how far away they were; such things as distance didn't matter. As the crowd rushed toward me, I didn't see Jesus, but I did see people I had known . . . their presence seemed absolutely natural.

They rushed toward me, and every person was smiling, shouting, and praising God. Although no one said so, intuitively I knew they were my celestial welcoming committee. It was as if they had all gathered just outside heaven's gate, waiting for me . . .

. . . and as I stared into his face, an ecstatic bliss overwhelmed me. I didn't think about his . . . death, because I couldn't get past the joy of our reunion. How either of us reached heaven seemed irrelevant . . .

. . .When I attended his funeral, I wondered if I would ever stop crying. I couldn't understand why God had taken [him]. Through the years since then, I had never been able to forget the pain and sense of loss. Not that I thought of him all the time, but when I did, sadness came over me.

Now I saw [him] in heaven. As he slipped [his hand in mine], my pain and grief vanished. Never had I seen [him] smile so brightly. I still didn't know why, but the joyousness of the place wiped away any questions. Everything felt blissful. Perfect . . .

~from 90 Minutes in Heaven by Don Piper

34/52 Connections

2011-08-27T00:00:00.001-05:00

Brother's Pucker

Jackson is not shy when it comes to kissing and hugging. And he holds nothing back when it comes to kissing Clayton either! It's taken a while for Clayton to warm up to him, but most days he is accepting of the affection and kisses Jackson right back. Yes, they are boys, but I still think this is as precious as can be--I'm sure in ten years, they'll be just a wee bit embarrassed if I show this around!

We Prayed, He Healed. Now We Tell!

2011-08-25T00:00:00.001-05:00

Tuesday afternoon was like any other. Jackson napping, Clayton watching a Gaither video as he rested after therapy. At 3:00, Clayton was fine and dandy. By 4:30, he was wretching from nausea and white as a ghost. Since Clayton can't actually throw up because of his nissen fundoplication, he never gets that relief that vomiting can give you if you are extremely nauseated. So the nausea just lingers and lingers . . . my problem was trying to figure out what actually brought this sudden change on in just a matter of minutes. In the meantime, he got to where he couldn't even keep his eyes open and he wanted me to hold him--a classic sign that he just plain doesn't feel good! My thoughts immediately went to his shunt and wondering if it was malfunctioning. We are no strangers to shunt malfunctions, and all of these symptoms are classic signs. By the time Brian got home at 5, Clayton was in bad shape, lethargic and dry heaving constantly. We knew it was time to pack our bags. Yes, it might have been a stomach bug, but we just didn't want to chance waiting too long. Our dilemma these days with shunt issues is the fact that we do not want the neurosurgeon at ACH to operate on Clayton. Simply put: we don't trust him and don't appreciate his lack of bedside manner. We made the decision to drive to Memphis to see his neurosurgeon at LeBonheur Children's Hospital. Meanwhile, I let prayer warriors know that intercession on Clayton's behalf was needed. Through the power of the internet and cell phones, word spread quickly that Clayton needed prayer. I have no doubt that the doors of Heaven were nearly knocked over with the prayers of the righteous!

Christians are never to stop praying, particularly for each other. We should never hesitate to turn to our fellow believers with our prayer requests and needs, nor should we neglect to pray for them regularly. James 5:16 (NIV)

Clayton slept most of the way to Memphis, waking up only a few times to try and vomit. I sat in the backseat, holding him as I prayed. My prayers are not those of an eloquent preacher. They are the simple prayers of a desperate mother: "PLEASE LORD, FIX THIS! WHATEVER IT IS, JUST LET HIS BODY FUNCTION NORMALLY! PLEASE HELP HIM! PROTECT HIM!" God hears all prayers--it doesn't have to sound like a well-rehearsed sonnet to fall on the Lord's ears! As I prayed, I knew people all around the country were calling out to God on Clayton's behalf. What an absolute humbling thought! To know that Christians everywhere have dropped to their knees in prayer for my baby boy! Such a blessing!!!!

From the moment we walked into the hospital, Clayton's condition began to improve. After suffering through x-rays and a CT scan, he was literally back to his old self. His CT scans were basically like his MRI back in July when he was completely well. The doctor tapped his shunt to check the fluid and mechanism and all was fine on that front as well. We stayed overnight for good measure (didn't want to have to drive all that way more than once!) and Clayton seemed even better after a good nap on Wednesday.

Why did Clayton get so sick, so fast? We have no idea! Was it a shunt malfunction? Who knows?! All I know is he was really sick--borderline scary sick, and once the prayer warriors started petitioning Heaven, his symptoms were gone! We would be completely remiss if we did not give God the glory for this! I admit that in the past, His answers to our prayers have not always been to my liking. It seems he usually likes to do the roundabout, back door answers to prayer in our lives . . . but in this case, he answered quickly and very specifically! Praise the Lord!

We don't want you in the dark, friends, about how hard it was when all this came down on us in Asia province. It was so bad we didn't think we were going to make it. We felt like we'd been sent to death row, that it was all over for us. As it turned out, it was the best thing that could have happened. Instead of trusting in our own strength or wits to get out of it, we were forced to trust God totally—not a bad idea since he's the God who raises the dead! And he did it, rescued us from certain doom. And he'll do it again, rescuing us as many times as we need rescuing. You and your prayers are part of the rescue operation—I don't want you in the dark about that either. I can see your faces even now, lifted in praise for God's deliverance of us, a rescue in which your prayers played such a crucial part. 2 Corinthians 1:8-11 (The Message)

One Last Look . . .

2011-08-23T00:00:00.000-05:00

. . . at a vacation photo. :)

33/52 Slow Down and Look Back

2011-08-20T16:15:00.001-05:00

Can't Help But Look Back

This week's theme was easy for me. I spend each month of August struggling through the "what-ifs" related to Shawn's death. My mother's heart still wants to "mother" him and my hands are left idle in this regard . . . eight years and it still hurts.

A Good Birthday

2011-08-19T00:00:00.004-05:00

For Clayton's birthday celebration this year, we kept everything low-key since we were at the beach. And you know what? I think he was just fine with that! Cake, ice cream, his cousins and his brother, and he was good to go!

His birthday each year is always a struggle for me, for obvious reasons. It's the epitome of bittersweet. But since we were totally out of our normal environment, I didn't have to hide any tears during our little party. I was able to totally focus on the happiness Clayton brings us. It was quite refreshing!

It was definitely a happy birthday for this sweet boy!

Passing It On

2011-08-18T00:00:00.012-05:00

Our last evening on the beach was beautiful and peaceful. Brian and I walked down to the water with Jackson to soak up our last bits of the ocean before it was time to pack up. The water was strangely calm compared to the beginning of the week, and it was a nice change. Brian took Jackson for one last swim while I watched from the beach.

Brian grew up around the ocean. In his circle of friends, it was standard practice to spend their free time at the beach. He still has that love for the sand and the water.

Maybe Brian didn't think anything of it, but I loved watching these moments between them. And while they initially took off on a search for Nemo, I could tell that eventually the conversation turned into a general oceanography lesson. I could just hear Brian in my mind explaining the ins and outs of ocean life to Jackson's little ears. I watched as Jackson took it all in, very seriously studying all that Daddy was pointing out.

Brian has done his best to share his knowledge and love of the beach life with Clayton, but he's never been able to fully let loose like this. With Clayton's sensory issues and limited mobility, it's just never been doable. It was a special moment indeed for Brian to be able to share this part of his life with his youngest son.

Old Pro

2011-08-15T00:00:00.001-05:00

While Jackson may have started out a bit hesitant, by the end of our week at the beach, he was an old pro at enjoying the ocean. Once he made friends with the sand, he was home free to play in the water. It helped that he had his cousins along to show him the ropes.

It even got to the point of him not getting ENOUGH fun with the sand--seems we brought plenty of it back to our condo via every nook and cranny on his little body!

Yep, his tune definitely changed after he "got his feet wet," so to speak. Once he was used to the new surroundings, the fun never stopped for Good Time Charlie!

32/52 Destin 2011

2011-08-13T00:00:00.001-05:00

By all accounts, best vacation we've had in quite a while!! Our time together as a family was wonderful!

31/52 Sky

2011-08-12T10:35:00.001-05:00

The Sky is Falling

Last week's theme was "sky," so I decided to fudge a bit and wait until we got to the beach to take that particular photo. I knew I would be able to get a massive sky shot here. The weather didn't let me down--the storms have rolled in each evening and literally pressed down over us. Beautiful in an awe-inspiring way!

Eight is GREAT!

2011-08-10T00:00:00.001-05:00

Happy Birthday to a very special little boy! Clayton, you continue to impact the world and those around you in a very unique and positive way---we love you and are so blessed to call you ours!!!!

Still Not Sure

2011-08-09T00:00:00.000-05:00

Last year, during our visit to the beach, Jackson was a little weirded out by the whole experience. He just didn't quite know how to take the sand. This summer's visit is turning out to be no different. (Maybe sensory issues run in the family, whether you are born preemie or not!) He is still wanted us to carry him if he had to go more than two or three steps, and the water was definitely freaking him out.

He wasn't even keen on others enjoying the water--he sat in the shade and pined away for whoever was in the ocean.

But then Brian threw out the curveball: FINDING NEMO. He told Jackson that the ocean was where Nemo lived and that they needed to go look for him. It worked like a charm! He came back chatty-cathy about their search in the water. :)

Hopefully by the end of the week, he'll be an old pro!

Measureless

2011-08-05T00:00:00.003-05:00

**You'll have to ignore the video issues!

The Love of God

The love of God is greater far
Than tongue or pen can ever tell.
It goes beyond the highest star,
And reaches to the lowest hell.
The guilty pair, bowed down with care,
God gave His Son to win.
His erring child He reconciled,
And pardoned from his sin.
- Oh, love of God, how rich and pure!
  How measureless and strong!
  It shall forevermore endure—
  The saints’ and angels’ song.
Could we with ink the ocean fill,
And were the skies of parchment made.
Were every stalk on earth a quill,
And every man a scribe by trade.
To write the love of God above
Would drain the ocean dry!
Nor could the scroll contain the whole,
Though stretched from sky to sky!

Oh, love of God, how rich and pure!
How measureless and strong!
It shall forevermore endure—
The saints’ and angels’ song.

It shall forevermore endure—
The saints’ and angels’ song.

30/52 Phillipians 1:3

2011-08-04T00:00:00.003-05:00

As becoming my habit, I skipped the group's theme for last week's photo. I had a ton of photos from VBS and also lots from our Family Ministry Retreat on Friday night. I chose this photo for the week because it represents more than just a group of people meeting to nail down the details of a new ministry for the church. This core group represents the many close friends in our church who have weathered every storm and celebrated every triumph of my family during the last ten years. From the major things like literally praying down Heaven on behalf of Shawn and Clayton to the small details of doing our laundry for weeks on end (Thanks, Holly!), these people have helped carry us through.

Even more than that, this group (and church as a whole) is so different from any other I've attended in my lifetime. Most churches I've attended seemed to hand out masks at the door. Everyone always put on their church face, if you will. And while that does happen at our church, it happens in a different way. No other way to explain it except to say that I feel like these people are REAL. Also? They know the REAL me and they love me anyway!

I thank my God every time I remember you. Phillipians 1:3

A Battle of Wills

2011-08-03T00:00:00.000-05:00

Under the cover of darkness during this last week, it seems that someone kidnapped my sweet baby and replaced him with a look-alike who is in full-fledged TWO YEAR OLD mode.

This child has been close to impossible these last few days!! And while I'm nearly at my wit's end, I have a feeling I'm only at the beginning of this phase. Not good news at all. Locking me out of the house and bedrooms at random, throwing items out of the car window, refusing to nap or go to bed at night, escaping from the five-point harness of his seatbelt . . . these are just a few of the antics that he seems to do for fun.

I hate it. I don't hate it just because it's misbehavior. I hate it because I feel like our whole relationship now revolves around him misbehaving and me correcting him. What happened to our cuddling time? What happened to the sweet kisses and hugs? I am on him all the time! And the thing is, I don't know how not to be since he is CONSTANTLY into something. This morning we had one of many standoffs. He escaped out to the backyard (does this often by climbing on whatever is closest to unlock the deadbolt), and I asked him to come back inside. Well, even though he can move like lightning at any other time, he moved at a snail's pace coming in the door while the cool A/C air quickly escaped. I warned him repeatedly to step on it, but to no avail. I finally got onto him and swatted him on the booty--of course he went into meltdown mode and started flailing around, crying and hanging on me as I walked. I sat him in the chair and told him he had to sit there until he calmed down. (Of course I had to sit there too because he does not stay in "time out" on his own). FIFTEEN MINUTES later he finally stopped crying and walked off like nothing had ever happened. Meanwhile, I just wanted to sit there for fifteen more minutes and cry about the whole episode! It would be a whole lot simpler if he would learn lessons the easy way, but I have a feeling he is so headstrong that every lesson is going to come with blood, sweat, and tears.

Heaven help me.

For Their Amusement

2011-07-29T00:00:00.001-05:00

So the boys are still obsessed with trains. Moreover, Clayton has been hounding us about riding "that train." Where "that train" might be, I don't know, so we decided a small train would be a good place to start. We drove to a mini-amusement park not far from here and proceeded to ride the rides in the blazing hot sun. (Wouldn't it have been great if Jackson had actually looked at the camera in photo above?)

As usual, when it came time for the actual event, both boys started getting nervous. It didn't help that the conductor gave us no warning when he started the train up or blew the horn. Clayton almost jumped out his chair it scared him so! Jackson became Brian's cling-on and didn't let go for one second during the entire ride.

Once we started going, Clayton seemed a little unsure, but he quickly decided that he did indeed like riding the train.

We went around in a circle twice--literally nothing to the ride. But for Clayton, it was an absolutely perfect way to break him in slowly to train riding.

Jackson decided his favorite ride was the Merry-Go-Round.

I rode with him, but man did I ever get queasy!!

He was having a blast. :)

Jackson pretty much bowed out of every other ride, which surprised us since he is usually our little daredevil. Clayton decided he would ride the planes and we took a risk by putting him on by himself. There was no back for him to lean against so he had to hold on with his own strength the entire ride.

He was hyped up at first, but as soon as the ride started, the nerves kicked in. For Momma too . . . I was scared to death he was going to let go and fall back!

He went into full panic mode and the operator stopped it for him--even though he ended up not liking it, I was very proud of him for holding on so tight!!!

In the end, I think the Merry-Go-Round got both of their votes for ride of the day!

A Photo Shoot With Jackson

2011-07-27T00:00:00.001-05:00

So I'm taking a photography course. We have assignments, and up until last week, I had managed to complete them without involving Jackson and Clayton, who are less than willing models. But since our assignment last week was all about the ins and outs of photographing an actual person, I was forced to try to rope one of them in. I wasn't that successful.

I picked Jackson as my target since he will actually look at me once in a while (when Clayton sees my camera, he immediately starts ignoring me). I tried to capture him in the morning, and after literally soaking my shirt with sweat, I gave up. That afternoon, I was bound and determined to get my homework accomplished--this had me begging, pleading, and practically doing gymnastics to get a decent "portrait" (term used very loosely in this instance). It finally dawned on me that I could use the swing to keep him in one spot, so in he went. I immediately got the "in your face" pose.

Then the "look away" that Clayton has taught him well.

And then the always popular "maybe if I ignore her she'll go away" pose.

At the time, I was more than perturbed with the little guy. However, in hindsight, I'm glad I did capture photos that reflect his personality, even if they aren't posed completely perfect. I do look forward to the day, though, when he actually looks at my camera with a big grin instead of running past me saying "CHEESE!!"

Happy Anniversary to Us!

2011-07-25T09:00:00.000-05:00

Summer 1996

We met on our first day of working in Yellowstone National Park. Brian called home to his mom and told her he had met a girl and that he was going to "win her heart." I had no clue what I was in store for!

We have literally been through thick and thin, traveled high roads and low roads, and we have SURVIVED. Survived together! Brian is my best friend and I'm proud to call him my husband of 14 years today.

I love you, Brian.

29/52 Get In Close

2011-07-23T00:00:00.001-05:00

Green Plant

Our theme for this week just begged for a macro shot, but I since I don't have a macro lens, I just couldn't make it happen. I did attempt the "ghetto macro" technique of combining lenses, but I must have been doing it wrong because I didn't have great results. More learning on that is sure to come! At any rate, this is about as close as my little 50mm lens would let me get. Still darn close.

Encouraged

2011-07-21T00:00:00.001-05:00

Last week, Clayton had his one-year check up with the neurosurgeon in Memphis. Thank you, Lord, for keeping his brain in good order for this whole past year!

While we were there, a routine MRI was performed. Clayton hasn't had an MRI in years; since he was a baby in the NICU in fact. His ventricle size has since been monitored by CT scans. While this gives a clear picture, it is exposure to radiation, which we all know Clayton gets too much of his share anyway with all the other x-rays he has . . . at any rate, I appreciate that this clinic thinks enough of its patients that they try to minimize their radiation exposure. I didn't appreciate them not reminding us about the sheer terror the LOUD, OBNOXIOUS sounds would cause my child! He was absolutely terrified! And to be honest, I think it even unnerved Brian and me both!

After the drama of the actual MRI, the rest of the appointment went great. Clayton was so excited to see Dr. Einhaus and just about jumped out of his chair each time he caught a glimpse of her in the hall. I think he knows intuitively how much she helped him when he was sick. He just thinks she is the greatest thing! She was glad to show us the MRI--it's always amazing looking at an image that is so obviously abnormal and then glancing at your child across the room to see him doing wonderfully in spite of it. (For those who love the details: Clayton still basically has slit ventricles, but praise God he has long since ceased showing the signs of slit ventricle syndrome. He also has a small amount of fluid between his brain and skull because his brain actually shrunk last year when all the fluid drained out of his ventricles. That fluid is definitely not normal either, but Dr. Einhaus assured us it wasn't an alarming amount. She said that hopefully overtime his brain will fill up the space once again.) Soooo, again I say REJOICE! Despite the obvious abnormalities, Clayton just keeps on truckin'!

Perhaps the best part of the visit was when Dr. Einhaus started talking to us about the spasticity in Clayton's legs. She called in her partner to talked to us about options. This was refreshing since we've never been able to find a doctor in Little Rock who will discuss any option but a baclofen pump. Brian and I have always been against the baclofen pump for various reasons (which I won't go into now), but no one has ever wanted to educate us on any other procedures. I've done a ton of reading online, but that never compares to talking to a real live doctor about a subject.

The doctor examined Clayton at length and immediately surmised that we had made a good decision to stay away from the pump. Said Clayton was definitely not a good candidate for it (just another example of parents' intuition holding true). He talked to us about a rhizotomy and again concluded that this would not be a beneficial procedure for Clayton. Clayton is so weak. The main problem with any procedure is that if you do take away his spasticity, you've taken away the only "strength" he has, even if it is in effect a false strength. Without his high muscle tone, he cannot even begin to stand on his own, or even sit indian style by himself. Take that away with a rhizotomy, and he becomes one big limp noodle!

In the end, the doctor recommended that we see the orthopedic doc that he works closely with to discuss other options, including PERCS. (I've been asking the docs at ACH about this procedure for a couple of years with no real answers). We have no idea where this is going to go. We may get there and they tell us that Clayton isn't a good candidate for PERCS either. BUT, it is so encouraging to at least be discussing something new! And if that won't work, maybe they'll be able to offer something else. To quote Clayton's PT: "He's a hard case!" He has everyone around him puzzled and stumped as to the next treatment. He is growing and his legs just get tighter and tighter. And the monkey in the wrench is that his trunk is the complete opposite: loosey goosey! (This is why global treatments like oral meds don't work for Clayton--what's good for one is bad for the other).

It's definitely time for a new set of eyes to examine Clayton. And hopefully that person/persons will be able to see something that other docs have been missing. It sometimes takes that new looker to come on the scene in order to point out a different view . . . we're ready!

28/52 A New Look

2011-07-19T12:00:00.002-05:00

A New Look

I skipped last week's Project52 theme of "Sweet Relief" in order to document Clayton's changing look. First, he got some new glasses: both prescription and frames. His frames are a bit more "fashion-forward" this time and his prescription changed considerably for his right eye. So while we get a fresh look of his face, he is also getting a new and clearer look of the world around him! Second, HIS TWO FRONT TEETH FINALLY CAME IN! It has been over two years since we've seen him with front teeth, so it's definitely a different look for him. Just two more smilestones for the scrapbooks!

27/52 Nature At Its Finest

2011-07-16T10:00:00.000-05:00

I'm a week behind on my Project52, but better late than never, right? Last week's theme was Nature at Its Finest and I thought this photo of the full moon last night fit it perfectly:

Goodnight Moon

Because Sometimes . . .

2011-07-14T00:00:00.000-05:00

. . . you just have to pull something . . .

. . . and because pulling and hauling make one happy boy!

In Which I Moan and Groan and Then Snap Out of It

2011-07-13T00:00:00.003-05:00

Yesterday morning I was not in a good place emotionally. As usual, I had to suck it up and hide my tears from the ever present "I'm in tune to Momma's every emotion" radar of Clayton.

Sometimes I just get so annoyed with this path that God has laid out for us! I remember a few weeks back in Sunday School, when our teacher asked us what one event would change our lives dramatically. It is such an easy answer for me: my life would be SOOOO different if Clayton could walk. NOT TO MENTION how different Clayton's life would be! And I'm not talking about running around totally healed walking--I'm just referring to the kind-of-limps-maybe-even-uses-a-walker-walking.

He is growing. As he grows, his options for activity get slimmer. Meanwhile, Action-Jackson is growing, and his options for activity are becoming endless! But how in the world do I do them both justice at the same time?!

The selfish, two-year-old part of me just wants to throw a hissy fit because we can't just jump in the car and go. We were at a great swimming hole the other day and Jackson was practically drooling he wanted to swim so bad. But it would have been impossible for me to handle the situation with Clayton's limitations. It's like we're stuck. I don't want Clayton to have to sit and watch on the sidelines, but I don't want Jackson to miss out because I'm somehow setting limitations on him because of Clayton's situation. Brian and I are already finding ourselves separating the two [without them being aware] so that Jackson can have more freedom and Clayton doesn't have to be "left out," so to speak. And during those times, I almost feel like a family split down the middle, or like we're cheating on them! So CRAZY sounding, I know!

And to top it off, I always dump a huge load of Momma-guilt on myself when I find myself saying no to Clayton on something simply because it involves lifting/moving him. My back hurts a lot these days. If I sit in one spot too long, I'm bent over like a 100 year old woman when I creak back up! I know it's due to seven years of holding, lifting, and constantly moving him on his every whim. I don't regret doing any of that over the years, but these days I think a lot about the future and how long my back is going to have to "last." To put it bluntly, my back just can't give out any time soon! Sooo, when he asks to do something that involves moving him and I say "let's just sit here and do such-and-such" or "let's wait a little bit for that," I immediately start feeling horrible for limiting him just because I don't "feel like" getting him up and around, even though I know I should save my back for the more important movements now that he is bigger.

Momma-guilt is just such a beautiful thing . . . NOT.

I just stay so conflicted and confused! Confused because I rack my brain for the perfect solution to fix these growing dichotomies. And when I'm searching within for these answers, it's then that I'm reminded of the real answer. It is not found within myself. And it's not even my job to SOLVE these problems! Our answers come from the Lord Himself! Only He can work through these seemingly impossible situations. I get so caught up in the little details of the story, that I forget the big picture! It is when I LET GO, and LET GOD, the answers will come. OR maybe they won't come . . . but if I'm letting Him do the grunt work, IT WON'T EVEN MATTER! I must get out of the way--I must remove my worry, my fretting, my guilt, my self-pity, and come to Him as the weak, mere human that I am. For in my weakness, He strength is revealed!

I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

2 Corinthians 12:7b-10

Watering Week

2011-07-08T00:00:00.002-05:00

Brian and I spent our Fourth of July holiday trying our best to get the yard back into shape. After two major storms this past spring, we were left with virtually no grass and missing fill dirt. And since we've basically had no rain since, it seemed the yard just kept getting more and more barren.

Brian put a ton of seed and fertilizer down and we emptied over 50 fifty-pound bags of sand throughout the yard. (I might add that those little suckers seem to weigh 100 POUNDS when you are walking across the yard with them).

So now we wait. And we water.

And water some more. And pray real hard that some green grass shows up soon.

Then we water even more. And then we snap a much needed photo for the scavenger hunt (child running through sprinkler).

*Note that Clayton was a great help by holding the sign for Momma!!

Get Your Gameface On!

2011-07-06T00:00:00.002-05:00

When I saw the list of fabulous prizes for this year, I decided to take part in the Clickin' Moms 3rd Annual Scavenger Hunt. However, this meant I would need to find some good helpers and models who weren't afraid to step out of their "comfort zone." LOL . . . and since my own kids are hit and miss on this kind of project, it was a good thing my nieces and nephew were up to the challenge! I've got the whole month of July to photograph a list of both ordinary and unordinary things, and I'm hoping that Taylor's competitive spirit spurs me on until the end of the month. In the meantime, if you've got a misspelled tattoo, own an El Camino, or still have your Christmas lights up, don't be surprised if I come calling with my camera in tow!

26/52 Hidden Objects

2011-07-02T00:00:00.002-05:00

Blending In

As we looked down the tracks, it took our eyes a moment to realize a fawn was staring right back at us!

Church Camp Recap

2011-07-01T00:00:00.000-05:00

Clayton had a great time at church camp! It was an action packed couple of days and he survived it like a trooper. (Brian almost didn't survive, but he said all the hard work was worth it!) Since they took the power chair, Clayton was able to do his own thing and wasn't dependent on the adults or other kids to remember to move him or to move him where he wanted. Brian said that for the most part, he did great maneuvering around the area, and that he only had a couple of times of wandering off unsupervised. (Isn't that what most seven year old boys want?) At bedtime on the first night, Brian said that Clayton was missing Momma and his own bed (he is attached to his bed!). Brian said the second night he was so tired, he didn't have time to miss anyone before he drifted off to sleep.

Clayton's least favorite activity: crafts. No surprise there . . . it's never been his strong suit.

His very favorite activities: dancing to one of his new favorite songs, Superhero by Go Fish (we found this video made by no one we know, but it's cute and you can listen to the song), and watching Dusty the Dinosaur. The main speaker was a magician and ventriloquist. Brian said his eyes were wide when Dusty was brought out. It was definitely his favorite activity of all.

All in all, things went great for Clayton. Brian had a busy time of it keeping up with Clayton's schedule and the camp's schedule--there are just so many hours in the day. Bathing Clayton was also an issue, but for two nights, the awkward accommodations could be endured again. I'm so happy he was able to enjoy such a "normal" kid event!

On Clayton: Stream of Consciousness

2011-06-29T00:00:00.002-05:00

Clayton is on his first trip to church camp this week. What a milestone! He took his Daddy with him (the reluctant camp counselor), but even with Daddy, this is such a big event for him to experience. I am so excited he is getting to enjoy this rite of passage with the other kids!

Even though he is gone for a couple of days, he's always on my mind. My life is totally planned around his schedule. His feeding, his therapy, his meds. My entire days are scheduled relative to his needs. I've felt a bit lost to tell the truth, but it has given me time to sit and type out some other things that are on my mind concerning this precious child . . .

I wonder constantly about what's going on in that little head of his. While I don't know the specifics, I do sense him struggling during this period of his life. I don't know if it's the addition of Jackson into our family, his age, or a combination of both, but he is becoming more and more aware of himself and his limitations. Oh, I think he has always been aware that he is "different," but before, the awareness didn't come with frustration. He is frustrated so easily these days.

One of the main areas he is struggling with right now is mealtime. Meals are supposed to be enjoyable, right? Great time for the family to visit and discuss the day? Clayton loves anything to do with food. Food Network. Top Chef. Paula Deen. Cooking with Daddy (and sometimes Momma!). He has come so far in his feeding therapy. When he was a baby, food touching his lips made him gag. He is at the point now where he licks all over salty snacks and other tasty foods. He was doing this when Jackson was born. Today, things in his mouth don't make him gag, but the problem is he won't chew and swallow. If a bit of food does happen to get in his mouth, he just sits and begs someone to get it out of his mouth because he "can't like it." The next step is for him to PUT SOMETHING IN HIS MOUTH, CHEW IT UP, AND SWALLOW IT. Sounds simple, but he has to take the step. Meanwhile, Jackson is snacking on all kinds of tasty treats and gobbles down his supper as Clayton watches. This is where the disruption comes in. If we all sit together to eat, nine times out of ten, it will end with Clayton throwing a massive fit about me eating, or Jackson eating. It's usually directed at me: "Momma, NO EAT!!" And when I say fit, I mean fit! Throwing forks, hitting himself, etc. We've started punishing him by putting him in time out in his room, but it is so HARD to do! Not because it's hard to punish him (he has consequences for other misbehavior), but because who can blame him for being upset?! Here he is, forced to watch other people eat great smelling food, that when he licks it, tastes good, but he doesn't get the full enjoyment of the actual meal. Can you imagine having to do that meal after meal? Granted, his belly gets full via his feeding tube, but we all know that food is most enjoyed when it's actually tasted!

I don't know. It's gotten to the point where I avoid eating with him and Jackson together if I can help it. Which defeats the whole purpose of family mealtime. And that's also hard to pull off since Clayton wants to be with me while I eat. He'd just rather Jackson stay out of the picture. Kind of hard to make that happen . . . There is no easy answer. We just have to wait. Things happen so slowly for Clayton, but they do happen! I pray he takes a leap of faith someday soon and bites a bit of something good off to chew on and enjoy!

***************************

Other things flutter in and out of my mind concerning Clayton. Satan gets a hold of my thought process so often and has me thinking that our time with Clayton will soon be over. It's like when things have been good for a little bit I start to panic, knowing the next bad event is right around the corner. Satan picks up on that tidbit and turns it into a full blown panic attack on some days. And oh, the guilt! The guilt I feel for enjoying Jackson's milestones! It seems like I'm betraying Clayton in some odd way for relishing Jackson's abilities. And in my warped, Satan-attacked spirit, I keep thinking Clayton is going to die because I celebrate Jackson in this way. My brain knows that this is not how God operates, but my worry-infested mother's heart analyzes this situation to death!!! Am I crazy? Do other mothers go through this with typically developing siblings?

So many changes as he grows and develops. So many thoughts to wrestle with--both for Clayton and for Brian and me. He's having to learn to live with disabilities and limits, and we're having to learn how to help him do that in the least restrictive way possible. We are doing the best we can; however, the older he gets, there ARE boundaries. We are becoming more and more aware of them as a family. And more so than ever, we are counseling our own hearts on the ever changing barriers in Clayton's life. We are completely committed to helping him cope with these changes, but it's going to take a lot of prayer and guidance from the Lord because some of these situations are really tough to handle! Only the Lord can help us give the right words and the right comfort to Clayton when struggles come. In the meantime, I pray for peace in Clayton's little heart.

Through the Woods

2011-06-28T00:00:00.000-05:00

We took Clayton for a "hike" this weekend and boy, were we in for a workout! Since he's being doing so well driving the power chair around the house, we have slowly been letting him venture out into "unknown territory" so he can tackle driving with the distractions of different environments. In these new environments, he is still doing relatively well, but it seems in each new place he gets a touch of rebellion and can't help but turn on the speed and head for the rough terrain.

He was bound and determined to get off the pathway through these woods. Brian had to stay close by to keep tabs on where Clayton *thought* he was going to go.

By the end of the trail, he had gotten most of the off road driving out of his system and we were able to relax more, but it seems he has to go through this exploration stage with each new place we visit with his power chair. Not unlike a toddler who has to touch every. single. thing. when they visit a new place. He never experienced that particular stage of development, so I suppose he's just playing a little catch up five years later!

25/52 Crave

2011-06-25T14:52:00.000-05:00

On the Phone Again

I skipped the theme of "Crave" this week simply because it was too much like last week's "Make it Tasty." My creative juices just weren't flowing on that one. I took very few pics this week, but as usual, I caught one of Jackson talking on the "phone." Photos of him talking on the "phone" and of both boys on the gator seem to be a recurring theme in my Project52. But when that's what you do with your spare time, that's what you get a lot of pictures of!!

All Aboard!

2011-06-23T00:00:00.001-05:00

It all started in Forth Worth. When the passenger train came through the stockyards, Clayton literally wigged out. He was beside himself with fright. He immediately wanted to leave and "get in the van." So as usual, we made haste to do his bidding . . . but in true Clayton fashion, he hasn't stopped talking about it since! That train is the only thing he has mentioned about the Make-A-Wish trip, and he mentions it all. the. time. We've talked about all kinds of trains since then, and when we see or hear one, our world stops to focus on the train. Moreover, in true Jackson fashion, he has copied his brother's obsession, but taken it even further.

We are now faithful viewers of the The Dinosaur Train. Clayton watches the beginning and the end when the train is visible, but Jackson watches the entire show with baited breath, constantly yelling "WAIN!" We might would watch other cartoons like Thomas the Train or Chuggington, but they come on before dawn, and you all know early doesn't fit our style. . . At any rate, when I came into the hall and found Jackson had made his own little train, I couldn't help but grin:

He was very proud of his handiwork, and even prouder that I had noticed.

I'm just glad we had remembered to disable the power chair. Otherwise, he probably would have tried to pull his "train" down the hallway!

Father's Day 2011

2011-06-21T16:00:00.000-05:00

For Father's Day this year, we did the only thing you can do in the Arkansas heat: we swam the day away at my brother's house. The newest addition to their pool was the slide, and as you can tell, the kids were having a blast with it!

Jackson was all over the place, swimming with whoever would have him. I tried arm floaties on him for the first time and he wasn't too crazy about them. He'd rather have a holder all afternoon.

Clayton was more interested in sitting in the shade with my grandparents than swimming, but we talked him into a few dips, just so he could cool off a bit.

My brother, the king of his domain:

And of course there were the snacks:

Everyone seemed to vacate the pool when Jackson started eating his watermelon on the steps--he seemed to keep it in the water more than his mouth!

Overall, a super day with the familia!

YAY!

2011-06-20T16:17:00.001-05:00

My photo was featured on the MCP Actions Blog!

Happy Father's Day to My Dad!

2011-06-19T00:00:00.000-05:00

Don't you love the long-haired look on a new dad?!

24/52 Make it Tasty

2011-06-18T00:00:00.001-05:00

Berries in the Backyard

Since I did strawberries a couple of weeks ago, I hadn't planned to do berries again. But I cooked a crumb cake and took many photos and not one of them looked near as inviting as these berries out in nature!

Following Duh

2011-06-17T00:00:00.002-05:00

Jackson has a pet name for everyone. He calls Clayton "Duh." We have no idea where it came from, but it doesn't really matter. He's decided that his brother will be Duh, so Duh it is!

Jackson watches Clayton closely and mimics his movements and even his attitudes about things. He keeps a watchful (albeit two year old) eye on him. Just in these last weeks I've noticed their relationship becoming even more involved and more dimensional than ever. They are starting to communicate in a way that only siblings can. And it is SO interesting to watch! I mean, sure, Clayton has always impacted people, but his impact on Jackson is in a totally different way. It's just so NORMAL! So "regular people!" I stand amazed everyday at the smallest of blessings--even the one of my youngest son wanting to follow his big brother around and around the yard, and just letting Clayton lead the way. This is something that Clayton isn't used to doing (in this manner, at least), so how cool it is that he has a playmate that is willing to let him lead on?!

Here Comes Summer

2011-06-16T00:00:00.002-05:00

**We're full on into summer "break" and we're as busy as we always are

**Finished up Prayer Conference last weekend--an intense and wonderful experience!

**Clayton's driving skills are improving by the day. He is getting the hang of negotiating tight spaces and even realizes when it's best to back up a bit before going forward.

**The days are HOT and Jackson is playing HARD. He is literally soaked in sweat when he comes in from outside.

**Jackson is quite the social bug. He's getting lots of chances to play with his little friends and is even giving them nicknames. (Jackson doesn't call anyone by their real name except for me--everyone else gets a pet name from him).

**I'm falling behind on my Project52 photos because I've been working so hard on my business side. I'm having just as much fun organizing all of the details as I do taking the photos!

**Brian is working like crazy. The Lord continues to shower him with business despite changes in the economy.

**We made our first trip to the lake yesterday and Jackson was a little worried about Daddy wakesurfing. He didn't know quite what to make of it!

**I'm pretty tired lately. Could have something to do with the fact that since we returned from Fort Worth, I've yet to go to bed before 1:30 a.m. Somehow or another I'm still functioning when it's a well known fact that I NEED my sleep (and lots of it!).

23/52 Trying to Escape

2011-06-14T00:00:00.002-05:00

Brian took off the other day before he got the gator unloaded. Jackson was determined to figure out how to get it off the trailer and he brought Navan along as an accomplice!

"I think we can just plow over the back."

"or maybe we'll go off the side . . ."

Meanwhile, Navan is having second thoughts!

"Quick! Hide so they don't see us!"

"Maybe if I grin for Momma's camera she won't notice our plan."

"No worries, Navan! I've spotted reinforcements! Big men are coming to help us!"

S'mores, Anyone?

2011-06-11T00:00:00.001-05:00

A couple of weeks ago, when the weather was still halfway bearable outside, our friends invited us up to the lake for a day at the cabin they were renting. It was great because we mostly spent our time just relaxing and visiting.

Everyone was determined to have s'mores, so Brian and Karson worked on a fire . . . took a while to get it started, but once it got going, we got our fill of sweets!

As usual, Clayton spent his time cooking and visiting (he loves Mr. Keith!).

And Jackson spent his time eating!

A Party for Jackson

2011-06-08T00:00:00.001-05:00

Since Jackson's first birthday went by without true celebration, I was so glad that all was well and we were able to celebrate with him this year! We decided Memorial Day would be a good time to cut the cake, and while we didn't throw a huge bash, it was special nonetheless.

He dug those hands right in the icing when I put the cake on his tray. And I was so proud of him for blowing out his own candles!

He has a sweet tooth. He gets it from me. :)

The presents are always fun . . .

. . . but not necessarily for the adults who have to put them together!

Jackson spent almost all day outside in our "pool area." Most of the day was spent with Tucker--they swam a lot, but had to take many breaks for rides on the gator.

After Tucker left, Jackson basically fell out on the floor in sleep. He had to rest up for his next guests.

He ended the day with more friends, and they swam until dark.

All in all, a great day!

Contributing Factors

2011-06-07T00:00:00.001-05:00

To my faithful blog readers:

I promise the slacking will end soon! I know it's been a bit boring around here lately, but I've had many things on my plate and I'm trying my best to get caught up. My desktop computer is limping along, as I've piled way too many photos onto it. I'm spending a lot of time trying to clean that mess up! In the meantime, I'm a proud new owner of a MacBookPro (squeal!). And while I'm loving it, I am doing my best to get things set up just right so that once I get really going on it, I can have a seamless "digital workflow" for my photos. Throw all that in with the normal craziness around here and you get me, with no time for real blogging. But there is an end in sight! Hopefully by the end of this week, I'll be back in a routine and ready to actually write something of substance!

Seriously?

2011-06-06T00:00:00.001-05:00

Who could resist that face????!!!

22/52 Happy Birthday, Jackson!

2011-06-03T00:00:00.003-05:00

I simply cannot believe that it has been two whole years since this blessing named Jackson entered our lives. And to celebrate, I don't even know where to begin! I search my heart for the adequate words, the words that can describe how special this sweet baby is to me. I come up lacking every time. I simply know this: I was scared to death to have another baby. Scared because I knew that "the worst" could indeed happen to us. Scared of what it would mean for Clayton's care. And definitely scared that my body would let everyone down.

It wasn't easy. Just as in Shawn and Clayton's case, I had to have "help" getting pregnant. And in this case, much more involved help. My pregnancy was eventful to say the least and everyone's routines were completely interrupted. It was worth every second of inconvenience. Every second of worry, every second of self-doubt. We were blessed with a gorgeous little boy who teaches me everyday. My main lesson? Every single day is full of miracles. Every working part on our body is a miracle. Every quick thought and action is a miracle. Every bite or drink he takes is a miracle. Brian and I stand in awe at the simplest things that he accomplishes! It is way too cool how God has created our brains and bodies to function in just the most coordinated way. And when it all comes together--look out world, here comes a toddler!!!

Thank you, Lord! Thank you for this precious gift! Thank you for creating him just for us, and at just the right time in our lives. We were ready to move forward, and Jackson has provided the perfect avenue. And this includes Clayton! Yes, it is true that Clayton is still "adjusting" to Jackson's presence (he's in a tough spot watching Jackson physically develop right past him), but Jackson has even opened up doors for his big brother. Jackson has no preconceived notions about Clayton's abilities. No walls stand between them because of Clayton's physical condition. Jackson simply loves Clayton right where he is at. Loves him, plays with him, talks to him, and loves on him. Seeing their relationship develop is yet another miracle that Jackson has brought into our lives. Such a sweet, sweet gift!

So Happy Birthday to my baby! Momma loves you, loves you, loves you!!!

ETA: I'm counting this as my Project52 photo this week since of course I want to document this milestone!

Clayton's Free Time

2011-06-01T00:00:00.002-05:00

We've had this latest power chair about a week now. Clayton now spends almost all of his free time roaming around the yard (and if I'm not looking, roaming around the neighbors' yards!). He is seeking out every rock, hole, tree limb, or any other obstacle to run over and damage. He is also blatantly disobedient when I remind him of the ground rules. IT. IS. WONDERFUL!

21/52 The Need for Speed

2011-05-27T00:00:00.000-05:00

Okay, one more photography post for the week and then I'll stop for a few days! This week's theme was easy. Clayton is testing yet another power chair and this one is definitely the. ONE. It's the perfect size for him and as perfect as it can get for our house. And he's definitely feeling the need for speed when he is out and about the neighborhood!

Running

For the background on the title, grab a tissue and read this post from February.

20/52 Spring Fever

2011-05-26T00:00:00.002-05:00

I'm several days late on posting last week's photo, but I definitely didn't want to give up on my Project52. I did actually take this photo during week 20 of 2011, I just haven't had time to upload and publish it!

Tiny Berries

Seeing these strawberries pop up in the garden definitely scream spring to me--and they scream that summer's just around the corner as well! It's interesting that I'm excited about strawberries. My mother can tell you that "there's a story there." Bottom line: I don't eat strawberries. It has to do with some weird food aversions I've got, so I won't bore you with the details! But back to the reason I'm excited . . . Jackson seems to love strawberries! And I love that for him! Just the simple detail of having a child that loves to munch on berries is so neat to me. (Said the mother of a tube-fed child). At any rate, I'm looking forward to watching him snack on these berries that have come from our very own backyard.