21/52 The Need for Speed

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

Running

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

20/52 Spring Fever

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

Tiny Berries

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

Portfolio Building

Last week, I began a journey that has been culminating for almost two years.  I decided to finally take the plunge and get serious about moving forward with my photography!  So as of today, I am officially in business, and beginning the process of building my portfolio!

What exactly is Portfolio Building?  In order to create a collection that is representative of my skills, I will be offering my sessions and prints at half price in exchange for a signed model release by the client.  These prices will be effective until the end of 2011.  The photos I take during these sessions will potentially be used as I advertise my work and grow my business.  If you are interested in booking a session with me, feel free to email me at ineverimaginedbyashley@gmail.com for more specific information. 

I am still wondering where the Ashley of 15 years ago is . . . this step is just another unplanned move on the "i never imagined" ride.  I guess I'd be pretty darn boring if I was still the same person!  The Lord has shown me over and over that it's okay to step out of my comfort zone, okay and best to rely on his strength and not my own.  And in this case, I keep reciting the words to Nichole Nordeman's song:  "So long, status quo!  I think I just let go . . . You make me wanna be brave!"

So here's to letting go of the reigns and moving towards the desires of my heart--the desires that He has placed in my soul.  The reasons for this direction shall be revealed in His time.  And in the meantime, I look forward to creating beautiful keepsakes of His handiwork!

I'm Still Here

I've just been a very bad blogger!  I've got plenty of topics to blog about, but I simply have not had the time to put fingers to keyboard, so to speak!  So until I can do that, how about a little irony that comes from all this rain we are being soaked with:

I took this a week ago, and we've had almost 5 inches of rain since then--I'm wondering if the actual sign is completely underwater by now?!

Forth Worth

Brian and I neither one had ever been to Fort Worth.  We weren't quite sure what to expect, and as it turns out, Fort Worth is a great town!  Our hotel was located in the heart of the Sundance District, and it was such a pleasant atmosphere!

Everyone was extremely nice and even though we were in a "big" city, there a down-home feeling you got from all the people.  We felt safe walking with the kids on the streets and all was kept clean and tidy. 

It was a great change of pace---lots of music and food, in a family-friendly atmosphere.  We really enjoyed our time downtown.

For Mother's Day, we took a trip down to the famous stockyards.  We got there just in time to see them drive cattle right down the main drag. 

 Those longhorns are quite impressive!!

We sat in the shade of the stockyards and had ice cream.  It was nice to relax after the stress of the Wish Day. 

Our relaxation ended abruptly when the train came through.  Clayton was DONE with the stockyards after the noise and the size of it.  He was scared to death!

Of course, since then, he's asked me no less than a dozen times to "tell Daddy let me ride on that train!"  Guess he's changed his mind since it's not right in front of him!

19/52 Window Light

Stockyards

I took a bit of creative license on the theme this week . . . my "windows" are the sky lights that lined the Fort Worth stockyards.

Bus Ride Limo Ride

All was not lost on fulfilling Clayton's obsession with riding in people's vehicles.  Make-A-Wish did provide us with a limosine for transportation to and from the concert.   Moreover, to help "make up" for the whole wish fiasco, our escort asked the driver to show us around Fort Worth after the show.  (The actual ride to the concert was only about 6 blocks!) 

So many people were coming and going at the hotel. It was hard for Clayton to focus on much, but I think he did finally realize that this was the "big car" we had been telling him about.

I appreciate that even though we had been told that the wish activities were strictly for Clayton's immediate family, our escort gladly invited my parents and grandparents along for the ride.  There was certainly room for all of us!

And since we don't regularly ride in limos in this family, we didn't realize it would be such an acrobatic feat to get in and out of one---getting Clayton in was a workout for Brian!  (Totally unrelated sidenote:  are his front teeth ever going to come in?!)

 We fought the balloons the entire trip!

Clayton was a little awestruck at first.  He'd never seen a ride quite like that one!  After the concert was over though, he warmed right up to the driver and talked a blue streak about riding around.  (Wish I had those pics, but they are on Brian's camera).

Jackson, on the other hand, had no problem making himself at home.  He immediately helped himself to the bar area and continued to try and touch and/or dismantle every part of the car.

By the time we exited, every glass, napkin, and canned drink was anywhere but its assigned place.  And he also left crumbs from his snack in every nook and cranny.  I'm sure the driver had loads of fun cleaning up after our mess! 

This is his "I'm innocent of all charges" face. 

For The Record

I don't blame Bill Gaither and Homecoming Friends for this wish mess up as much as I blame Make-A-Wish.  It was their job to advocate for Clayton to have the best wish day possible.  And it was their job to advocate for the correct wish!  When I spoke with the escort in Ft. Worth, she called the National Headquarters.  When she called me back, she said they had it down that Clayton's wish was to meet Bill Gaither.  Period.  No mention of a bus.  That's why I say I was given the run-around by our Wish Coordinator who kept assuring me the Gaithers knew about the bus and we, as Clayton's parents, should ask about it if they don't mention it.  (!!!!) 

With that being said, the Gaither group was never asked about the bus because the MAW people weren't treating that as Clayton's wish.  EVEN THOUGH that was his wish!  And why, for the love, didn't the Wish Coordinator start working out these kinks the first time I ever talked to her about confirming the bus ride?!!

I don't know how these "celebrities" do things, but I have a feeling Bill Gaither didn't even know about us until maybe that morning when his manager was reviewing his schedule for the day.  It wasn't important because MAW didn't stress just how important it was!  Twenty minutes before a four hour concert is not the time to be getting to know a little boy who just might be your biggest fan.  It just doesn't make sense.

The Rest of the Story

Don't put your life in the hands of experts

who know nothing of life, of salvation life.

Mere humans don't have what it takes;

when they die, their projects die with them.

Instead, get help from the God of Jacob,

put your hope in God and know real blessing!

Psalm 146:3-5
(The Message)

So.

I've been wrestling with my emotions all weekend, and I've come to the conclusion that being open and honest about all the Make-a-Wish events is the only way I can cope . . . I simply can't pretend that it's been the experience of a lifetime like I'm sure some would want me to. 

We all know that Clayton's extracurricular activities are limited by his immobility and as a result, he has come to enjoy only a handful of things in this life.  Those things he enjoys, he obsesses over.  To name two:  the Gaither videos, and riding in everyone's vehicles.  A regular hitchiker, as we say.  ANYone who comes to the house is usually hounded into taking him "around the block" in their vehicle.  Something so simple, yet it becomes the event of the day for Clayton.

Clayton started talking about riding on Bill Gaither's bus sometime last year when he heard it mentioned on a couple of the videos.  He watched the videos pretty regularly, but it wasn't until the Shunt Debacle of 2010 that he literally would watch nothing else.  During the entire time he was sick, he watched them over and over and over and over.  During his headaches, the Homecoming friends got him through.  And in his lucid moments he wanted to ride with Bill Gaither.  It was a nurse at Le Bonheur Children's Hospital that first suggested Make-A-Wish.  I took the idea and ran with it. 

Clayton was very clear on his wish when the volunteers visited.  He did a lot of his random stories that night, but he did say he wanted to ride on Bill Gaither's bus.  In the months since, I've almost harassed the Wish Coodinator trying to find out if his wish would come true.  As late as last week, she assured me the Gaithers would do "everything possible to make Clayton happy."  And that they were "more excited to meet Clayton than he was to meet them."  With that being said, I had grandeur blogger-mom thoughts of writing this post upon our return:

We have returned!  What a trip of a lifetime!  Clayton is still on cloud nine from his whirlwind day with the Homecoming friends.  We arrived at the Convention Center several hours early so that he was able to meet and visit with many of them before they were due to get ready for the show.  He met many of his favorite people to watch:  The Hoppers, The Martins, Lynda Randle, The Isaacs, and of course Bill Gaither and The Gaither Vocal Band.  They all seemed genuinely interested in getting to know Clayton and they couldn't believe how well he mimicked Bill Gaither's mannerisms.  

Clayton was almost beside himself when Bill asked him if he wanted to go around the block on his bus.  The driver was glad to take us for more than just one block and Clayton was all about looking out that front window and watching the driver do his thing.  And as we pulled back into the Convention Center, Clayton was asking to "Do again?" in his normal fashion.  "Maybe sometime," he answered himself. 

We had front row seats to an awesome concert of praising the Lord.  And just before The Gaither Vocal Band started into "Jesus on the Mainline," Bill Gaither announced to the audience that "this next one is for our very special guest, Clayton!"

Clayton hasn't stopped talking about it since Saturday night!  He had a wonderful time visiting with and singing along to some great musicians who love the Lord.  But most of all, his crazy little wish that only Clayton could dream up--riding on Bill Gaither's bus--came true!!



But I can't write that post.  It is so very far from the truth.

The truth is that upon my first contact with our Make-A-Wish escort in Ft. Worth, I asked her about the bus, and she was completely dumbfounded.  First she had heard of it.  She made calls and contacts, but ended up telling me that riding a tour bus was out of the question with most celebrities.  No. DUH.  That is why we've got a wish-granting organization helping us get our child's "wildest dream" to come true!

The truth is that our "handicap-accessible" seats were smack dab in the middle of the folding chairs on the floor and we weren't allowed to move any of them.  We waited forever while an usher finally found us more appropriate seating for a wheelchair, but we got to look at the side of the stage as opposed to the front. 

The truth is we were to meet Bill Gaither's manager at 2:40 to go backstage.  TWENTY MINUTES before show time.  Lucky us, when we did finally head back there, some "old friends" of Bill's followed us back there.  And when I say lucky, I mean NOT.

The truth is that when Bill Gaither walked out, little Clayton was overwhelmed he was so excited.  He started crying and holding his ear and clapping like Bill Gaither.

The truth is I had to ask Bill to bend down next to Clayton so he could actually be on his level instead of towering over him.  He squatted for the picture but never really engaged Clayton in conversation. 

The truth is Bill Gaither was probably relieved when Ben Isaacs came in and started visiting with us.  Ben was followed by a very friendly Gene McDonald who was also happy to bend down and visit with Clayton.  Bill mosied on over to the aforementioned "old friends" and our time was pretty much up with him. 

The truth is we quizzed the manager on other artists and if we would get to see them.  (Quote from his note at the Reveal Party "Bill Gaither and the Homecoming Friends are looking forward to meeting you . . .)  She said they were all probably busy getting ready since the concert was about to start.  (You think?  Maybe that's why we should have been here earlier!)

The truth is our friends back home had been working hard to get word to the Gaither clan that Clayton just had to get on that bus.  Our worship pastor traded tweets and emails with Wes Hampton and gave him the heads up on Clayton.  We never let the Make-A-Wish escort know we might have the inside scoop, just decided to play it cool.

The truth is a whole lot of people were praying that Clayton would get his ride on the bus--and if not the ride, at least a step inside!

The truth is Ben was glad to point us in the direction of Bill's bus, so we headed right over.  Clayton took a lonely tour around it (how exciting it could have been with a little fanfare from somebody in charge!!) and although the manager was long done with us, we were determined to make something happen. 

The truth is a happy and smiling Wes Hampton stepped off the bus and immediately greeted Clayton.  He was happy to invite us in for a quick look-see.  By then the concert was starting and the manager was ready for us to be back in the audience.  Wes was genuinely interested in Clayton's story and was showing him around the bus.  Clayton was smiling as David Phelps came out of the back and was just getting his bearings with the manager said time's up.  Brian insisted Clayton sit in the driver's seat, but all in all, we were maybe there for five minutes. 

The truth?  Two minutes with Bill.  Five minutes on the bus.  And the five minutes on the bus were no thanks to Make-A-Wish or the Gaither Group's planning, just the frantic behind the scenes work of our friend who loves Clayton and a very hospitable Wes Hampton. 

The truth?  Clayton has mentioned Bill Gaither exactly once since Saturday night.  He loved the music at the concert and was practically getting up and dancing he was so excited.  But for a boy who regularly mentions Bill like he's a part of our family, I think Clayton picked up on the vibe . . . the vibe of "this isn't near as important to us as it is to you."

The truth?  Brian and I are sick about the whole thing.  Why was it like pulling teeth to get any answers from the Wish Coordinator?  (Who I've since realized was really good at telling me what I wanted to hear).  Why did we even agree to go with so many details up in the air and no real confirmation on the bus ride?  Why didn't we just flat out demand those goofy "old friends" get out of our way with Bill?  Why didn't we tell the manager to heck with the show, Clayton's here for the bus!!?

And WHY OH WHY did the Make-A-Wish office not go to bat for Clayton on this?  I thought that's what the organization was all about!  We're talking about a "dying wish" here!  (Although Clayton is not technically "dying" he has a couple of life-threatening conditions that qualified him for the wish).  Out of anything in the entire world he picks a ride on a tour bus and time with Bill Gaither.  QUALITY time with Bill Gaither.  I simply cannot fathom the Make-A-Wish organization failing to express the importance of this.  And I simply cannot fathom being the Gaither organization and basically scheduling what amounted to a back-alley meeting for a couple of minutes!  Is that what they would want if it was their dying child's wish????  I most decidely think not.

The truth is Brian and I are always willing to go above and beyond for Clayton.  This entire wish event took months of "planning" and it wasn't near as personable and fulfilling as the Jason Crabb concert we went to a while back.  And guess who took care of those details?  Yep.  You guessed it.  Momma.  Momma and Daddy who made sure Clayton had the best time possible . . . and it only took about three days to get those plans made!

Some will call me a complainer.  Most will call me ungrateful.  Think what you will, but I'm just a Momma.  A Momma who fights fierce for her babies, and even extra fierce for this special little boy of mine. 

To My Mom

Happy Mother's Day to my Mom--she goes above and beyond when it comes to helping me, and this weekend has been no exception!!!  

18/52 First Thing in the Morning

First Thing

This week's theme was easy for me, since I do the very same thing each morning after I wake up.  I actually hate to admit how addicted I am to my little Blackberry, but it's definitely how I greet each day.  First I delete all the junk email I've received overnight, then I catch up on all the Facebook and Twitter posts I've missed.  It's a little ridiculous, but it's me nonetheless!!

You Are Worthy

Another song from Easter . . . video isn't the best, but you can't beat the sound of our little choir!!

Daddy Was Mowing

So neither one of them could really be bothered by actually watching where they were going . . .

They drove around the yard like this for thirty minutes--I was amazed at how great Jackson's driving was for doing it while facing backwards!