Big Boy Bike

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

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!

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

Prank Caller

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

So behind on posting these . . .

Fence Row

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

Birthing a Business

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

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!!!

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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!

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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

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

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

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

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.