It's {Still} The Little Things

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

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

A Brother's Prayer

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

"God?"

"I ask you to please help Clayton walk." 



Gulp.  

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

Paying it Forward

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

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

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

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

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

A New Year, Another Birthday!

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

Merry Christmas!

Still The Lamb

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

Ladies' Man

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

Stole the Show

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

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

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

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

Happy Halloween!

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

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

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

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

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

Think About Such Things

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

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

Wordless Wednesday

Guitar Man

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

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

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

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

Look for him on the next season of American Idol! 

In the Genes

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

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

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

NILMDTS

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

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

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

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

The Year of the Extra-Curricular Activity

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

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

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

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

Family

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

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

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

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

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

On the Beach, On the Go

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

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

Even The Hard Things

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

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

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

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

The one you just welcomed into the world?

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

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

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

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

Back to [Home] School

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

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

Gone Fishin'

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

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

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