Noisy Mornings

Mornings before Jackson:  Clayton and I slept as long as possible without risking being late for therapy, snuggled lazily for at least thirty minutes after waking up, and we barely uttered words to each other until we were almost ready and out the door.

Mornings after Jackson:  Jackson wakes up around 4:00 crying, I run in his room to grab him before he wakes up Clayton.  He "sleeps" in our bed for the rest of the morning.  And by "sleeps" I mean he tosses and turns, talking and whining in his sleep, constantly needing his cup of milk and constantly losing it in the bed.  Around 6:00/6:30 he officially wakes up and wants to play, scream, and wrestle in the bed.  Meanwhile, Clayton's door is shut, our door is shut, and I'm doing my best to keep Jackson as quiet as possible.  Clayton only sleeps when it is stone silent and needs a lot more sleep than most kiddos his age.  It takes all my power to keep Jackson corralled in my bedroom until 7:30 or 8:00.  And if he accidentally escapes, he makes a bee-line for Clayton's door and either pushes it open or bangs loudly on it.  Poor little Clayton doesn't know how to react to such rude awakenings in the morning!  And me?  I'm still trying to figure out how I could give birth to a child who wants to live so much life before the noon hour!!

Fall Ball

Clayton's baseball league has a fall season, and since he enjoyed it so much this spring (and didn't get to finish the season because of his shunt issues), we knew we had to get him signed up.  Brian and I have already decided we like this season better--it's much more pleasant when you can sit and watch the game without sweating to death! 

I think Clayton just likes it because he always gets a couple of girls to be his buddies! 

"It's From Bill Gaither!"

As I've mentioned many times before, Clayton is obsessed with the Gaither Homecoming videos.  We watch at least one a day, and he usually talks me into a second one as well.  And while he was sick this summer, these videos were the ONLY thing that even halfway calmed him down during those terrible headaches. 

Knowing Clayton's love for the Gaithers got our music minister and family friend, Kent, working on a project.  He spent a lot of time emailing/phoning Bill Gaither's assistant trying to figure out how we could get him to Clayton for a meeting.  Well, the meeting didn't work out, but Bill did promise to send Clayton a picture.  We got it last week and Clayton LOVES it!  At least twenty times a day he reminds me "it's from Bill Gaither!"  He gets a huge grin on his face when he's telling me. 

We're still working on an actual meeting with Bill Gaither and many of his Homecoming friends, but in the meantime Clayton is tickled to death to have this hanging in his room!

Night of Praise

We enjoyed a super Night of Praise at our church this past weekend.  Brian is convinced we've got the best choir around and I'm just quite tempted to believe him!  I know I've never worked with a group like these people--it's not like we've got a bunch of choral scholars in our choir, but we've got a lot of dedicated folks who sing their hearts out every weekend!

Sing to the LORD a new song,

for he has done marvelous things;

his right hand and his holy arm

have worked salvation for him.

The LORD has made his salvation known

and revealed his righteousness to the nations.

He has remembered his love

and his faithfulness to the house of Israel;

all the ends of the earth have seen

the salvation of our God.

Shout for joy to the LORD, all the earth,

burst into jubilant song with music . . .

Psalm 98:1-4

You Know That Old Song?

It's by Mark Chesnutt . . .

It's too hot to fish,

It's too hot for golf . . .

Well, that was us on Saturday.  We decided we'd take a family fishing trip to the lake.  But it takes us so long to get somewhere that we ended up arriving right at midday.  And even though it's September, it's still Africa Hot here and we only lasted about an hour.  The fish were glad we showed up though--they nibbled every worm off our hooks.  We just  sat and watched them enjoy their lunch while we left without catching a single one!

The good news is apparently it wasn't too hot for a nap:

Southwest Service Dogs

So I didn't think my life was full enough, so I volunteered to be in charge of our homeschooling organization's activities and events.  (What was I thinking?!)  I had ulterior motives when I agreed--1.  I would be forced to get to know people, 2.  I could try and incorporate more activities that were "special needs" friendly.  And with that very thing in mind, I started the year out with something different than anything I had seen done in the past.  I invited Kate Morgan and Chuck Archer of Southwest Service Dogs to come do a demonstration for our group.  And low and behold, everyone loved it!  We had over 150 people there and I was going to consider it a success if 20 people showed up! 

Southwest Service Dogs trains and places dogs with adults and children who are disabled.  Kate brought two dogs with her and Chuck brought his personal dog with him.  They were absolutely beautiful and they were great with the children.  Kate let them show off many of their tricks (taking off her jacket, getting her a kleenex after she sneezed, opening the "fridge" and bringing her water, helping Chuck at the "counter" when paying for items, etc.).  It is absolutely amazing how these dogs can help a person with their daily tasks! 

Of course everyone wanted to know if we plan to get Clayton a service dog.  The honest answer is we just don't know yet.  Clayton really isn't mature enough yet to handle the responsibility (all of the dog's care and commands would have to come from him).  Your home environment also has to be just right for things to work out, and with Katie being the alpha female that she is, I don't see us having another dog in the house while she is still with us.  We're definitely leaving the option open though because we know it would give Clayton a lot of indpendence from us. 

At any rate, I was glad to start the year of activities off with a bang.  I just hope I can keep up the creativity on what we plan in the future!

Busy Week

Just checking in to let my blog readers I'm still alive!  We have a very busy week planned, so not much to blog about--YET!  I'm singing tonight, we have homeschool activities this week, and our choir is getting ready for a Night of Praise at church.  If we can get everyone ready and arrive on time to everything, I'll consider the week a success!

School's In!

Our homeschool is officially in session for the year!  I have to admit I was dreading getting started because I knew that having Jackson so active was going to be my biggest obstacle in educating Clayton this year.  Last year, it was the nursing that got in the way, and this year it's just the distraction of having Jackson so busy!  I was a little lost on the direction I should go with Clayton as well.  I wasn't totally gung-ho about following our same system as last year, but knew we needed to concentrate on letter/number identification again.  I decided to combine two things I did separately last year:  Letter of the Week and Before Five in a Row.  I'm doing a little of both and playing them off of each other.  I did a "test run" last week just to see how Jackson would do while I worked with Clayton and it was a disaster!  I was doing it our usual way--sitting with Clayton and teaching in a more conversational tone as opposed to really turning on the "teacher mode."  That just didn't work this time because the whole time we sat together, Jackson was climbing all over us and bringing us other books for us to read.  :)  I decided to change my approach to help include him more and it's made all the difference so far. 

I bought this board (I liked it because it's mobile and can be put away--essential with little hands!).  My method is I just sit in this chair with our books and materials and teach the "class" as if there were more than one (two) student.  Clayton has something to focus on, and Jackson is loving it!  He still plays off to the side and is moving constantly, but he is actually participating!  He gets excited when I praise Clayton for something and was even "repeating" the vocabulary words today!  I decided I would just totally include him after that and he got a turn at everything we did and loved every minute of it.  I think it will all turn out to Clayton's advantage at any rate--he is motivated when he sees Jackson doing something, so I'm hoping it's no different with learning activities. 

This whole method is a little too "school at home" for me, but whatever works, right?  I'm sure we'll have to tweak it every now and then, but that's the beauty of homeschooling!

15 Months + 5 Days

23 pounds, 3 ounces

31 inches long

Jackson had his fifteen month check up today.  It always seems so weird during his well-child appointments.  I'm so used to long conversations with doctors regarding our concerns about Clayton that it almost seems as if I'm forgetting something during Jackson's appointments.  Nothing to discuss, nothing majorly wrong going on--just normal life!  What a relief!!

The handout the nurse gave me for fifteen months was titled "Whirlwind of Activity."  TO SAY THE LEAST!  Jackson is soooo busy.  It's even started affecting his sleep.  He is the worst napper--I'm lucky if he stays down for 45 minutes.  And these last few nights he has been crying in his sleep and flip flopping around like crazy.  Seems like he is busy even in his dreams!

And so, at fifteen months Jackson . . .

**has more words/phrases "whatisthat?" (all one word for him).  He says both syllables of Katie's name now (the dog).  His newest phrase is "OH, MAN!"

**scribbles on paper, and scribbles with the electronic drawing things we have.

**is all about Jackson--throws lots of temper tantrums each day when not getting his way!

**loves "hiding" more than ever.  If there is a cubbyhole to sneak into, he finds it.

**tries his best to snap while calling the dog.

**tries to play with Clayton, but Clayton is having a hard time figuring it out.

**loves books, still brings them to us to "read." 

**spends all of his time in stores waving and saying hi to all the other people he sees.  It's like a parade route for him!

**is discovering his world by touching everything in it--he's determined to have this house completely investigated!!

60 Years

This weekend, we celebrated my grandparents' 60th wedding anniversary.  Such a rare feat in today's society; I am blessed to have their example before me.  In fact, I find myself especially lucky to be a grandchild with all of my grandparents still living, and both sets have celebrated 60 years!

The Dichotomy of LIMBo

Bitter.

Sweet.

As a parent who has experienced a Loss in Multiple Birth (LIMBo), these words are never far from my mind.  When I think about Shawn's death, I wallow in self-pity, begging God to turn back the clock--let me hold him one more time!  let me tell him I love him just once more!  I beat my head against the wall wondering what I could have done differently to stay pregnant longer, and in turn given him a fighting chance at life.   And in spite of myself and the years that have passed, I still ask WHY?! 

And then.

And then, I look at this precious face.

How blessed I am!  How incredibly precious Clayton is to me!  This little boy is proof that modern day miracles happen.  He is proof that God heals our hurts in more than one way.  After Shawn's death, Clayton gave me a reason to get up each morning.  A reason to keep moving and breathing.  And in the years that have followed, I have needed only to look at his smile and my tears dry up.  How can I weep when his beautiful face is looking up at me?  I am blessed indeed.  

Together

I love this view of them together.

August 28

I've written and rewritten this post in my head a hundred times in this last week.  And as I sit here tonight, I'm just numb.  The tears still flow freely, even after seven years.  I pray all the time that I will "get used to it."  But in some ways I'm quite selfish about the whole thing.  I don't want to get used to it if I'm being completely honest.  I am literally scared to death of forgetting; but mostly scared to death that "getting over it" means leaving Shawn out of my life.  And I just can't leave him.  I suppose I've learned to maneuver around the pain in general, but every single day still brings small reminders that one of my sons isn't here.   

But as painful as the hurt is here on earth, I am thankful every day that I'm one day closer to a reunion with Shawn.  Oh, how I ache for that embrace!!!  There is a song I sing quite often, "I Bowed on My Knees and Cried Holy."  I practiced it for over a year before I ever performed it because it is so powerful.  And in the past couple of weeks, I've been reminded of the beginning of the second verse and the images it conjures up in my head:

And as I entered the gates of that city,

My loved ones, they all knew me well!

They took me down the streets of Heaven.

Oh, the sites were too many to tell!!

And as I sing those lines, this is what I see and hear:

As I walk into the gates of Heaven,

Shawn comes running, grabbing my hand and pulling with all of his might.

"Momma!  Momma!" he cries!

"What took you so long?!  I can't wait to show you all the neat stuff they have here!"

That is my hope.  That is my promise.

Therefore my heart is glad and my tongue rejoices; my body also will rest secure,

because you will not abandon me to the grave, nor will you let your Faithful One see decay. You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.  Psalm 16:9-11

All Better Now

Action Jackson is back in full force!  He has spent the last two days getting into and climbing on top of anything and everything in the house!!  I'm so glad the new antibiotic is working for him--I didn't think I could take another day of his crankiness . . . now I just have to keep my running shoes on in order to keep up with him once again!

Good Reads

Before the boys were born, I was an avid reader.  In fact, I even had a layout published about the topic way back when I actually had time to scrapbook!  I had kind of given up on the hobby until last year when I read a couple of things here and there after I rediscovered the library.  So I decided several months ago that I was going to make time for reading, even if it meant staying up late to do it.  And even though I don't plow through them fast like the old days, I've enjoyed doing this little something for myself each day.  I thought I would share a few of my favorites from this summer.  Most of these are old news to anyone who reads on a regular basis, but for those who don't, they are great stories to cut your teeth on!

Loved The Guernsey Literary and Potato Peel Pie Society.  I wanted to be right there in the middle of the characters when they gathered together.  The story is told in letters between the characters and the style was so refreshing.  Hotel on the Corner of Bitter and Sweet deals with the Japanese internment period and is one of those that makes you think about topics our generation rarely has to consider.

I saw Same Kind of Different as Me at the bookstore and bought it on a whim--the title really grabbed my attention.  (It actually made me think of Clayton and how we are all different in our own way, some differences are just more visible than others).  It's a beautiful true story of a relationship between two men (how often do you read something along that line?!).  It's also a tearjerker, so have a kleenex handy!

I've read a couple of homeschooling books lately, but by far the one I've enjoyed the most is I Saw the Angel in the Marble.  It's a compilation of essays written over the years by authors Chris and Ellyn Davis.  It's a good one to read if you've just begun homeschooling or need a reminder/refresher on why you chose this "ancient path" in the first place. 

Like I said, these are pretty popular titles that most "readers" have probably already read, but I just had to put a plug in for them since I enjoyed all of them so much!

Simple? Never!

It seems nothing ever goes "normal" for us.  Clayton's issues are always throwing us out of tandem with the rest of regular functioning folks, and it seems Jackson wants his share of attention these days as well.  He seemed to be getting over his bout with strep by Sunday afternoon, but yesterday I noticed a light rash all over his belly and back.  Then he literally whined all. night. long. last night.  And when he woke up this morning, I realized the rash was worse, with raised bumps.  I knew he was probably allergic to his antibiotic, but also knew he needed a few more days on one to make sure the strep was gone for good.  By the time we saw the doc this afternoon, it was all over his legs and arms.  No trouble breathing, thank the Lord, but was he ever cranky!  So instead of just getting over strep like most kids, we had to take that extra step we always seem to need instead of doing things the simple way. 

Guess the Lord just loves to watch me wrestle a cyring one-year old, a wheelchair, and all of our stuff in a crowded doctor's office!

A Night Away

This past weekend I was able to enjoy a rare night away from my family.  Our church held a ladies retreat to kick off our new Beth Moore study, Esther:  It's Tough Being a Woman.  We usually participate in district retreats with lots of women we really don't know well, so this gathering was so much more intimate (and better in my opinion!). 

I wasn't even gone 24 hours, but it sure does a Mommy well to get time away.  I enjoyed the time with my friends without the interruptions a child brings and without thinking of what Mommy task I was neglecting by having a little fun!  Now, that's not to say I didn't have some guilt----because in true form for our family, a crisis was going on at home while I was gone.  Jackson didn't feel well all last week and by Thursday was just downright sick.  On Friday morning, the doctor swabbed his throat for strep and of course it was positive.  (It's always something with us!).  So while I was "living it up" at the church retreat (read: driving to Sonic in the middle of the night for a midnight snack), Brian and my parents were nursing Jackson's 104 temperature and praying to avoid the emergency room.  Thankfully, Jackson is finally on the mend.  Brian survived taking care of him, and my parents survived Brian's version of mothering (read:  making lots of messes and obsessing over Jackson's every move). 

Here's to time with good friends, to a husband who managed without me, and to parents who are always willing to lend a hand whenever we need them!

Flashback Friday

Journaling:  This picture was taken on what I call your "Debut Sunday." We took you to church for the first time on August 8, 2004. You were finally well enough for us to show you off to everyone! The choir began the service with a special and you immediately started screaming and crying! You cried when we went up front--but you got a standing ovation and lots of tears were flowing. Everyone was so HAPPY! It was wonderful to see God's handiwork in the miracle you are.

Got Us a Gator!

Clayton is in heaven (as is Jackson for that matter).  A friend of Brian's brought this little gem over this week in honor of Clayton's birthday.  His son has outgrown it and they wanted Clayton to have it.  And since Clayton spends his fair share coveting our neighbor's John Deere mower, he was more than excited to take it off their hands!

The absolute best part is that Clayton can do it without any help (well, maybe just a little help, but who's counting?).  As long as someone puts his foot on and off the pedal and helps guide the steering every once in a while, he's good to go.  Jackson was a happy passenger too.  He jabbered on and on and smiled the whole time.  It was wonderful watching them do something together! 

Busy Week

Clayton was one exhausted kid yesterday.  And it's no wonder!  We've had an activity every single day this week, and he's had his regular therapy schedule to boot.  Monday, he went with me to the first homeschooling meeting of the year.  Tuesday, was his birthday celebration of course, and Wednesday he went roller skating with the kids at the church for the first time.  He had a BLAST rolling around that rink at record wheelchair speeds!  He even got to enjoy the games like the limbo--he wasn't "handicapped" in the least bit since he's right at home on wheels!

Thursday afternoon, we took off to the lake to visit with friends who were camping there.  We were in the boat until dark and didn't get home until 11:00 because of an unfortunate shortage of gas in the truck that I won't go into . . . (we made it home, but it was a close call!)  And so after his cousins left yesterday afternoon, it was time for Clayton to crash.  He was so tired that he was starting to act sick and I was not liking how he looked.  Thankfully, by the evening he had perked up a bit and he should be back to his old self in time for the new week to start!

Big Boys Don't Cry

Shall we take a trip down memory lane?  How about 2006, when Clayton threw an all out fit during the Happy Birthday song?  Or last year when he was all smiles until we all started singing?  Yep, Clayton's pretty much made it an annual tradition to tune up and poke his little lip out as soon as we utter the first notes of "Happy Birthday."  But I guess turning seven has a way of changing a boy since he didn't once act unhappy this year!! 

I'm so proud of him for joining us in celebration instead of getting emotional on us--makes the singing go a lot smoother when the guest of honor isn't in tears!  A good time was had by all, and Clayton seemed to enjoy every minute of his party.  The best part for him though was the coming and going of everyone.  Each time someone arrived, he just about jumped out of his chair in excitement!  And each time someone left, he demanded his seat at the window so he could watch them leave and wave goodbye!  It's amazing the little things that can make this boy happy!

One Little Candle

That one little candle was just Momma and Daddy's way of saying we wish you were here.  We love you, Shawn.  How I wish I could wrap my arms around you as I say those words!

Seven years and my heart still aches for mothering left undone. 

Seven Years Old and More Precious than Ever

I love this child.  I love him so much!  And today, we celebrate the miracle of God that he is.  We CELEBRATE!  We celebrate the countless prayers answered, we celebrate the endless possibilities for his future, and we celebrate his sweet, sweet spirit.  He is so incredibly precious in His sight.  Thank you, thank you, thank you, Lord.  Thank you for this beautiful child, who is Clayton.  Happy Birthday, sweet boy. 

Every August, Every Year

I spend the whole month of August every year reliving Shawn and Clayton's birth.  I still can't get over the shock of how our lives changed over those hours of my labor. 

If we look scared to death, it's because we were. 

Flashback Friday

Clayton's birthday is right around the corner, so I thought I'd flashback to his first birthday party.  His annual tradition of frowning and crying during his celebration started on this day!

Accentuate the Postive

Since coming home and getting well, Clayton's had a bit of a time, ahem, shall we say adjusting?  He's always been spoiled because we've always done exactly what he wants and when he wants to do it.  But these days, we're having to modify that rule of thumb and he's not liking it one bit! 

But here's the rub, how in the world do you discipline a child who doesn't DO anything?  It's not like you can "take something away" or have a "time out."  Time out from what exactly???  So, we've decided to praise the positive and hope that fosters some better behaviors.  His main issue is whining.  Whine, whine, and more whine.  Ugh, it is so annoying!  I started small by breaking up the day for his rewards because frankly I wasn't sure he would be able to get through whole days and actually ever receive a reward!! 

He's done well so far, but the whining is definitely not gone for good.  In fact, today he only got one star since he couldn't seem to turn it off.  But he knows exactly what he wants to do when he gets those five stickers---"Drive Daddy's truck.  That'd be fine," he says!!

Baby Steps

Stander time.  It's always been a struggle.  A struggle for both me and Clayton.  I hate dragging the big monster out (actually this one is much smaller than his first!) and he hates getting locked into a fixed position.  Can't say that I blame him . . .

At any rate, before he got sick this summer, we were doing good if he stood in it three times a week (and those times were usually almost an hour).  He complained the whole time, and I had to do lots of tricks to keep him entertained.  Why is standing so important?  Life in a wheelchair brings a whole set of problems to your body that most people are unaware of.  Sitting in a wheelchair means you constantly battle against scoliosis and hip displacement.  And both can get bad real fast if you don't stay on top of them.  Our hip sockets are formed by weight-bearing activities like walking and standing and when you don't do those things, the socket never really forms for the "ball" to fit in.

Which brings me back to Clayton's time in the stander.  Brian and I both go through periods where we get lax with Clayton's theraputic activities.  And then we'll get on a kick and get super nervous we haven't done enough.  Well, we're on that kick now about his hips.  We visited a lot last week with another family whose child lives with both hips out of socket.  How incredibly painful!  Didn't take us long to jump back on the bandwagon of including standing time in Clayton's daily activities.  Problem was Clayton has been out of practice and we just can't jump back in and pick up where he left off.  I put him in it last week and he nearly passed out he was so weak.  He barely lasted ten minutes and his little legs shook for the rest of the afternoon.  Not to mention the crying he did when I made him get in it.  I felt horrible, but knew it was a necessary evil. 

The good news is he stood in it yesterday for fifteen minutes and never complained a bit!  And his legs held up just fine afterwards.  I was so proud he had made progress over just a few days!  Baby steps is better than no steps at all, right?  And at least this way we'll know that no matter what happens, we've done our best to prevent his spine and hips from giving way. 

@ 14 Months

Our little miracle is growing and changing so fast these days, we can hardly keep up with all he can do!  Brian and I keep asking ourselves if all he is doing is just typical one year old stuff or is he just advanced?  We're leaning towards advanced, of course.  :)

And so, at fourteen months here are the details.  Jackson . . .

**isn't harboring hard feelings or ill-will towards his parents or brother for having missed celebrating his first birthday.  :)

**isn't harboring hard feelings towards Momma for having missed his 12 and 13th month blog posts or having neglected his baby book for the last three months!

**has got walking down pat, but still might walk like a drunkard at times.  He still gets where he is going with no problems and doesn't seem to get motion sick from all the wobbling he might do!  

**has decided that like his older brother, he prefers Momma and Daddy's bed to his own.

**has twelve teeth with molars coming in daily (at least it seems that way!)

**still prefers meat to vegetables and is a carb-loving baby.  Would rather have anything carb over all other food.  Momma's hoping he'll eat something green on a regular basis SOON!

**is IN LOVE with all technology.  The computer's keyboard and mouse are never safe and all remotes have to stay out of reach.  In fact, one remote has been missing for a couple of weeks.  We're pretty sure he threw it away since he also LOVES the trash . . . Because of this love of technology and buttons in general, I bought him a little cheap calculator and it will entertain him for at least 30 minutes at a time.  Phones are his weakness and he knows the difference between a fake phone and real phone (as well as a fake remote and real remote).  You give him your phone and he immediately starts typing away as if he is texting someone. 

**has decided he doesn't like the nursery again.

**plays peepie at the sound of "Where's Jackson?" and is pretty rough when he slaps his hands on his eyes and head!

**loves to be chased and play Hide-n-Seek.

**waves at everyone in the stores and all cars that pass us by.

**doesn't like naptime and has to be practically tied down to take one.

**has started bringing the ball to Clayton so that they can play catch.  (love this)

**talks CONSTANTLY, but rarely says anything we can understand! 

**has started flipping through books and will even sit still for Momma to read just a few pages to him.

**LOVES music--starts clapping and "dancing" as soon as he hears a tune.

**climbs on EVERYTHING (I think I've covered that one in previous posts!)

**loves it when Momma puts his snack in a bowl so he can sit and take it all out piece by piece.  :)

**has discovered his body makes funny noises and loves his stinky socks.  Momma will never understand this part of her boys. 

There is so much more that keeps us in constant awe of how fast he absorbs his environment and how quickly he learns the way of things.  We just can't help but sit and grin as he plays daily!  Thank you, Lord for this little blessing!

Part Monkey

I told you he liked to climb . . . the tray used to keep him off of Clayton's chair, but now that doesn't even seem to stop him.  I'm constantly pulling him off of Clayton as he doesn't seem to mind the swats on his behind and/or the "timeouts." 

He's quite proud of himself too . . . but Clayton is less than thrilled with this invasion of his space!  (And I don't blame him!)

We've Been Busy

If you're wondering why I've neglected the blog, it's because we have been BUSY!  Once we decided that it was activity Clayton needed, it was activity Clayton got!  He's been going to therapy at the clinic and got rave reviews on his performance during aquatic therapy, and he's been spending time with his friends in one of our local pools.  We've also made several trips to the store at his request, even though by the end of the week we really didn't need anything but the actual outing.  (I even braved Hobby Lobby with the two of them--don't think I'll be trying that again anytime soon!)  This weekend, we made it to the lake for the first time this summer and Clayton was excited to get to ride the tube with Momma and Granny.  Momma and Granny not so excited, but we sacrificed! 

This week is no different.  Vacation Bible School is in full swing and we've got lots of therapy and appointments keeping us busy and on the run.  It's amazing how quickly Clayton improved once he really started getting out.  While we were waiting for him to show signs of improving endurance, he was sitting around waiting for us to give him a chance to!  He is sitting up taller in his chair and his conversational abilities are back in full swing.  (Especially now that he has new things to talk about!)  It's great to see him back to his old self--now we just pray for that right hand to regain its function and he'll be good as new!!!

It's Hot . . .

. . . really, really HOT!

But Jackson isn't going to let a little heat get in the way of playing outside--at least as long as he has plenty of relief nearby!

Glimpses of Normal

We had lots of activities to keep us busy this weekend!  And we were rewarded by getting to see Clayton's sweet smile!!!  This picture was taken as he watched one of his Gaither videos.  I think the main reason he was excited was because he had roped the whole extended family into watching--he loves to share the music with everyone!  He was singing and clapping away--it was wonderful to see.  We also made it out to my brother's yesterday afternoon for a day of swimming.  Clayton had a a great time and really had fun riding the four wheeler while we were there.  The really great part about all of this was he didn't seem completely exhausted after the weekend.  I'm hoping that means his endurance is increasing faster than we thought!

Rocky Road

Wow.  This last day and a half have been some kind of rough.  Physically rough, but mainly emotionally draining.  I went to church last night and the entire group there cried out to God on Clayton's behalf.  I came home and Clayton had his worst night since he was last released from the hospital.  (Have I mentioned that God's timing is never my timing?).  Clayton started yesterday afternoon just crying for no reason at absolutely random times.  And by last night, he wasn't taking breaks.  Just wanted to cry and hit stuff and get mad.  I told him to just let it all out!  If you're mad, then just be mad and cry all you want!!

By bedtime, his legs were literally spazzing out . . . He was so tired and exhausted, but each time his eyes closed, his whole body would shake with a spasm.  I don't know which is worse, watching him suffer from a headache or watching his legs pop around with no control.  Well, maybe I do know--last night was worse because we didn't have a remedy for the situation.  I'll stop the story here to say that we have been extremely blessed in this regard up to this point.  Although his legs are extremely high toned and spastic, his spasms have never been so overboard that we've had to keep him doped up to counteract them.  So last night was new territory for us and it wasn't fun.  He finally fell asleep laying crossways on our bed last night about 2:00.  Brian and I just left him right there, scared to death to disturb him! 

He woke up this morning with no spasms, but his voice was gone (this happened in the hospital after the headaches).  He has been struggling to speak all day and again been extremely emotional about the smallest things.  There's no doubt that he is depressed.  I spoke to one of his main nurses for a long time today and we agreed that we've got to be more aggressive on getting him back to his "normal" activities.  He's got to get out of this house or I think he's going to go crazy!!  We're just going to start with short stints and slowly build up.  There's a fine line between pushing just enough to get him going and pushing him overboard energy wise. 

We're starting tomorrow with a trip to the pool--and if he only lasts 30 minutes, well at least he got those 30 minutes out among the living.  I'm also going to talk to the therapists about moving his therapy back to the clinic.  It's going to be hard on him, but I really believe it will be good for his heart to get back around his usual peeps.  We'll just have to start with short sessions and build up. We've also got some other things we're working on pharmacological wise, but I have to wait to talk to the doctor more about that. 

Clayton's body has taken a major hit.  It is heartbreaking to watch him struggle like this.  And to not even smile anymore!!  He even got mad when Brian and I were trying to love on him last night.  The little boy who is always saying, "Momma, give me a kiss!" didn't want a kiss!!!  Just. so. totally. sad.  There's just no other way to put it. 

Reality

The reality is Clayton is still so weak.  The tiniest activities zap what little energy he has.  His trunk is not strong enough to hold him upright and by the end of the last two days, he hasn't even been able to hold his head up. 

The reality is his right hand still doesn't function like it used to.  His pincer grasp just isn't there right now and it's frustrating for him and definitely frustrating to watch.

The reality is it took him years to gain these skills the first go-around.

The reality is Clayton is getting down.  He barely smiled today.  He's cried over the smallest things and this evening he was crying over nothing specific that we could tell.  I asked him if his head hurt several times and got no response.  I asked if he was just sad and he nodded with his little bottom lip poked out.  My heart strings are about tugged out!!  How do I explain to him that it's just going to take lots of time and practice to get things back to where they were?  There's no way to tell what is going through that little head of his, but I'm sure it's got to be scary and sad not knowing why his body won't do what it used to. 

The Road to Recovery

He rescued me because He DELIGHTED in me.

Psalm 18:19b

We are so thankful to the Lord!  Clayton seems to have turned a corner in the right direction and is now traveling down the road to recovery!  It has been over a week since his last major headache and he is gaining strength literally by the day.  We went to Memphis yesterday for his follow up appointment with the neurosurgeon and to quote her talking to Clayton:  "God healed your boo-boo."  We couldn't agree more!

You can just tell by looking in his eyes that he is feeling like his old self.  He is staying up for longer periods of time and doesn't even have to nap on some days.  He still has some obstacles to overcome, namely strength and fine motor skills in his right hand.  Sitting in his regular wheelchair for the duration of the doctor visit yesterday wore him out.  His trunk has always been his weakest point, so it's no wonder he has no strength in it after laying in bed for a month.  He has use of his right hand, but his movement patterns are definitely not the same.  He tends to fist it up a lot more when he never fisted it in the past.  I hate seeing the regression in what was his only functional extremity, but we'll just keep attacking it with all types of therapy, and pray the movement patterns return.  I also pray this happens quickly as I already see him getting frustrated with his lack of control of his fingers. 

There is no way to describe how thankful we are for the prayers and support we have received during this last month!  We have felt the love from across town, the nation, and the globe!!!  Knowing so many people are praying for my little boy literally brings me tears.  THANK YOU for taking time out of your days to lift him up--your prayers are still being answered and I hope that you see that in his beautiful smile!

A Chance to Relax

For the first time in a month and a half, we were finally able to enjoy some down time.  My brother and his wife had a small pool party for the Fourth of July holiday, and we were more than happy to attend!  Clayton is still quite weak and not up to a lot of heat, so he stayed with Granny and Pop and had just as good a time as the rest of us (he was needing some Granny-bonding BIG TIME!). 

This was Jackson's second time in the pool and for a kid who loves the bathtub, was still quite nervous.  We figured out he just didn't like not being grounded, because once he got to hang out on the steps, he was happy-go-lucky and Mr. Social. 

It felt so good to get out and doing something different for a change.  We've been so wrapped up in getting Clayton well that I was just about to go stir-crazy!  I am so thankful he is on the mend, since that means outings like this will happen more and more often for our family!

Flashback Friday

June 2006

Arkansas Korean War Memorial Dedication Ceremony