Tuesday, May 10, 2011

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. 

22 comments:

Lee-Ellen said...

hugs ash! i'm sorry it didn't turn out to really be a "wish" experience. and i truly hate that clayton picked up on the "vibe". some people just have no concept what a little of their precious time and attention can do for someone else. I dont think you are being ungrateful at all, you did not get what was requested at all. the least they could have done was prep your for that. give clayton a big hug and kiss for me. love you guys!

Stacy said...

I frankly find it appalling that most parties handled the situation like that. This is a CHILD'S wish they are messing with. A child who more than anything wanted to meet with and spend a bit of time with an idol of his.

I am so glad that your friend somehow managed to get him time on the bus.

What a pitiful attempt by the MAW people at making a little boy's wish come true. And shame on Bill Gaither for being so standoffish and well...rude.

Dad said...

I always said when your Mom and I were raising you & Josh, you can mess with me but DON'T mess with my kids !

Dad

Phillip Kellerman said...

Darlene and I are so sorry for you and especially Clayton. You are not unreasonable. It should have been done right. The Gaithers Homecoming group is our favorites as well and sorry for the reception. May God richly bless you and Brian. We love and appreciate you.

Leslie said...

I'm totally with Stacy on this! You absolutely have every right to be ticked off about this whole thing. Make a wish totally dropped the ball on this one; they did nothing to make sure Clayton's wish was truely granted. Shame on them as an organization. And for that matter shame on the Gaither people for being un-Christian like and treating Clayton like he wasn't anyone special.

Stephanie said...

I don't think you're ungrateful. I come across that way, too, sometimes. It's more a matter of having high standards, which I believe is completely justified. I don't ask a lot of people, but when they say they are going to do something I hold them to that standard. Period. You have every right to be frustrated about all of this. You were told one thing, and another happened, all at the expense of a little boy.

Karla said...

Aaarrrggghhhh. That really ticks me off. Clayton is such a sweet, sweet child. You are right Ashley; if parents don't stand up for their kids, no one will. I am so sorry it was such a bad experience. We will pray for all of you. And it sounds like somebody needs a lesson in humility.

Kristin said...

I am with Stacy and Leslie!!! It is appalling that Clayton was treated like that. You would think that someone like Gaithers would be over the moon happy to meet such a big fan and making his day- isn't that part of being a Christian is all about? Thank God Clayton has you guys for parents - you blow Bill gaithers out of the water for compassion and love!

Melanie said...

I am with Stacy AND Leslie-

I cannot fathom coming across a child like Clayton, who is on HIS wish, and NOT doing everything possible to bend over backwards for him. What the Heck! I can only imagine how disappointed you guys were, and poor little Clayton who only wanted something very simple and wouldn't have hurt a soul...and they didn't do it. You are not ungrateful, what you are is a caring mother - heck just a caring person and what you saw happening is NOT RIGHT. All people involved should be ashamed that they didn't do what they should have done. I certainly hope they sleep well at night... I am so angry right now.

Jeffrey said...

I'm sad and angry that you had such an experience. I've been looking forward to reading about the trip and I had to read this twice to realize the bus ride didn't happen........what a terrible thing to happen to such a sweet boy that was soooooo looking forward to the trip.
Shame on the Gaithers......GOD DOESN'T LOVE UGLY.
YOU MUST KNOW YOU TRIED AND IT CAME FROM THE HEART AND IN THE END, THIS IS WHAT COUNTS IN THE EYES OF GOD.

Karen Mills said...

I'm so sorry, Ashley! I hope you don't mind, but I sent a comment to the Gaither website with a link to this post. I feel that they should know what really happened. If they are the kind of people we have always thought they are, then they will step up and at least try to make amends.

Susan said...

I will never listen to the "Gaither Vocal Band" without thinking about this! Sounds like Bill Gaither has forgotten who made him famous, the folks who buy his videos. Every meet & greet that I've done with Awakening Events concerts were much better than that.

Cassandra said...

Wow. I am incredibly disappointed in MAW and Bill Gaither. Clayton deserves better!!

lori said...

thias is a shame! a total shame! i am gonna boycott them and that was just so wrong!

Kristina said...

This is just awful. I can't imagine how much heartache this is causing you. And, to not have Make-a-Wish respond is just outrageous. I would go high up the chain in Make-a-Wish and make sure your concerns and disappointment are known. If not for them to grant Clayton another wish, then for them to make sure this NEVER happens again to another child.

Amy said...

I am very sad to read this. My BFF's sister had a wonderful MAW experience with The Backstreet Boys durign the HEIGHT of their popularity. Clayton deserved the same.

Cheri Pryor said...

I'm praying that big 'ol bus shows up in your neighborhood and Clayton gets his ride around the block. MAW screwed this up from the beginning....but Bill Gaither seems like a fairly compassionate guy as well as his entire homecoming team. Maybe, just MAYBE, they'll find it in their hearts to somehow make it right. Maybe Karen's note will somehow make it to the right people. God moves mountains....

Amy said...

As a mother of a special child like Clayton, I have to admit that I am hurt by this. As a mother who understands exactly what you meant about our kids having few pleasures, I am crying for you and Clayton. Honestly. I was so looking forward to reading about your experiences, and now I am heart-sick. I will pray that something amazing comes from this.

Tanya S said...

I hate this for all of you. I wish that it would have been a great experience. I want to call of these people myself and give them a piece of my mind!

Jennifer said...

This really hurts my heart. I can't even imagine being in your shoes and the pain you must feel because Clayton's dream wasn't fulfilled.

Jes said...

oh Ashley, I am just dumbfounded at the whole ordeal. definitely not what I had expected to hear of his Wish night. I'm glad he was able to get on the bus, but just appalled at how it all went down. :( I'm so sorry, big hugs to you!!

Lindsey Watson said...

Yuck! I hate that for Clayton,and I hate it for you as his mom having to watch it all go down! And don't tell Bill I said so, but he looks 100 years old in those pictures! ;)