For Their Amusement

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

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!

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

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

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

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

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 . . .

 . . . 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

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

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!

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

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

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!