EM:HE - MOVING THAT BUS (at last!)

Will cheering, "MOVE THAT BUS!"

(The cameras zoomed in on him while he was up high on shoulders- we'll see if he makes the show!)
The Carrs walking into their new home!
(They had to do the big walk in several times- it was quite funny as they would head in only to be told it had to be redone & head out again!)

Ty & the Carrs - about to head into their new home

The Carrs are such a deserving family for this home - they are generous to their community & active in giving back. They have 4 adopted children - 3 of whom have special needs. The 2 youngest have limb differences - one is a triple amputee due to Amniotic Band Syndrome & the youngest, Will's little friend, Rina, is missing 1 leg due to ABS. Mike (the dad) is a cancer survivor & had childhood diabetes- he has had 2 organ transplants (kidney & pancreas) which means he has to take immuno-suppressant drugs. Their previous home was not good for his health & was not completely accessible for all of their children. It was also a fire hazard. They went from a 3 bedroom/1 bath, 1500 sq foot home to a 4 bedroom/3 bath 4800 sq foot home! It's very functional & has some neat aspects. I know the Carr family will continue using the home to give back!

The community pitched in for other things as well - a new Ford car, bikes for all of the kids, $66,000 to be put towards their previous mortgage payment & new elevated property taxes, 3 years worth of meat from a local meat company, & a years' worth of landscaping.

It was so fun to be a part of such an exciting week!

This was right after they Moved the Bus (finally!!!)

Johnny (in the cowboy hat), Ed, & Bill Engvall with Ryanne in the middle

The Carrs after they got out of the limo - & before the bus was moved

The final & actual moving of the bus!

(Excuse the sometimes wobbly camera- I was holding my little video camera while also trying to take still pics with my other camera!)

The show will air as the season finale - May 9 - on ABC!

Extreme Home Makeover - Part 2

"MOVE THAT BUS" DAY!!!

AKA - Hurry Up & Wait

A woman on the design team who works on the show provided us with 3 very cool looking "design production guest" passes to get us past the spectators & into the VIP area on Move That Bus Day (Thursday.) We showed up at 9am and boarded our shuttle to take us to the site. The bus was to be moved officially at 12 noon.

Apparently, when working with Hollywood, the theme is "Hurry Up & Wait." We moved that bus LOTS of times- with filming occurring each time & lots of cheering since we never knew if the limo doors would open to reveal the family or not. Until the final time, the limo doors typically opened up to reveal a camera filming the crowd & celebrities!

We had a great spot for watching all of this - just in front of the bus. However, it was very hot & crowded as spectators jumped the fence into our little corral. Will did great, however, under those conditions, Will was a trooper!

Fortunately, his Lovie came prepared with games, toys, & even a pb & jellyfish picnic lunch.

When I was volunteering at the build site on Tuesday, this giant countdown clock stressed me out. It reminded me of those Christmas countdown clocks- letting you know how many shopping days remain. Stress!

The last 10 seconds were SO EXCITING!!!! We counted down & the crowd erupted in cheers! So fun!

And then the director announced that this was Hollywood & they were adding another hour to the clock!

At that point, we were quite hot & trapped in the sun & crowd & unable to move so we relocated to a shady area next door to the house.

This is the front of the house - during one of the "practice" Move that Bus scenes.

A camera zoomed in on Will on my shoulders at one point - we'll see if he makes it on the show!


The celebrities - again, this was a fake out "move that bus!"
Ty Pennington is to the far left in plaid, Johnny is in the cowboy hat (he high-fived Will!), Paige is the blonde of course, & Ed is bald (& hilarious) & then Bill Engvall is the celebrity guest designer in the long sleeve black shirt on the right.
Will was high-fived by Johnny & got Paige's autograph.

Ty & Ed
(the guy in the hat behind Ty is the director. Will liked him a lot on my volunteer day as he was dressed as a "real cowboy" with hat & boots & even spurs!)

Another fake out & shot of Ed

the celebrities

Ty seemed to kind of hang out on his own - apart from the other "stars."
Johnny & Ed interacted with the crowd more - Ty pretty much seemed to ignore the crowd

Will was such a trooper but after a few hours of being in the sun with nowhere to run & play, he finally was wiped out. He took a rest on his Lovie's shoulder

Ty & Bill Engvall
(Incidentally, Bill was just in our town on the frontier raising money for a children's rehab center where Will will begin receiving therapy services in April!)

Johnny & Paige getting off the bus

While waiting for the excitement to really get started, someone called to me from the friends & family corral located next to our vip corral.

I walked over & was so pleased to finally meet the founder of the PLAY foundation (Positive Living for Active Youth,) Jennifer. I have heard about this cool foundation through Katrina Carr (mother of family receiving the Extreme Home) & how they had provided for Ryanne Carr & the whole family to travel to CA to participate in the Endeavor Games. (Ryanne won lots of gold medals in lots of running events!)

Jennifer lost her hands & feet 3 years ago when she somehow became infected with sepsis & doctors were forced to amputate her hands & feet in order to save her life. I love how she chose JOY & to do something so positive to impact families rather than choosing bitterness. As an adult, she was forced to relearn how to function without hands & feet but it clearly has not held her back. She radiated joy & it was a pleasure to meet her. We would love to be involved with this cool organization in some capacity when Will is older (they serve kids ages 5-18.)

I brought Will over to meet her & to shake her hand... & he said, "She doesn't have hands." We're still not sure he gets that he doesn't exactly have hands so it was a good teaching moment as I said, "Yes, Will, kind of like YOU. She has hands just like you do but they are different... like YOURS." And then he gave her lots of high fives.

It's funny to us sometimes when he doesn't quite get that he is different - we're thankful as we are trying to teach him he can do anything & we have the same expectations of him we would have of anyone else. I was thankful that this particular teaching moment occurred with an adult who is comfortable in her skin & that she was gracious to us as I tried to explain to Will that his hands are different too - but we still shake hands & give high fives.

(Thanks, Jennifer!)

Hurry Up & Wait - Will & I waiting in front of the bus...

the morning had just begun

Later, we were so hot & stuffed in like sardines as people jumped the fence that we relocated next door. The kind man who provided our guest vip passes called me to check on us & told us we could join him on the neighbor's driveway next door. It was wonderful to have space for Will to run & play & shade!

Will enjoyed playing trains with the cowboy sheriff while we waited.

Will practicing "Move that Bus!"

At one point (my camera was off), it was fairly quiet as were in a lull - waiting again- & suddenly, Will yelled loudly, "MOVE THAT BUS!" I guess he was tired of waiting & wanted to get the show on the road!

COMING SOON -

IT REALLY DID MOVE!!!

Extreme Makeover Home Edition: Part 1

On Monday, I got a phone call that a volunteer slot had opened up for me & so I quickly changed our flights for EARLY Tuesday morning in order to get to the build site on time. Will & I had already planned on being there for Move That Bus but I really wanted an opportunity to work on the home for our friends, the Carrs.

(For how we know this deserving family - read down about 3 posts - they are friends from one of the hospitals where Will is a patient - Texas Scottish Rite Hospital.)

So, Tuesday morning, we boarded our plane - super early (especially for Will & I who like to sleep late!) and headed to Dallas. Will was so tired from waking up at 5:40 in the morning that he actually took a morning nap! The sweet boy fell asleep in my arms in the plane at 7:30 am! He hasn't taken a morning nap in a year! Of course, he awoke upon landing & it was still earlier than he wakes up most days!
My mom picked us up in Dallas & we headed for East Texas and the Extreme Makeover Home Edition build site - located in Mineola - about 25 minutes north of my parents' house.

To begin my volunteer shift, I had to check in & sign some paperwork prior to boarding the shuttle to take me to the site. I have lots of pictures on my phone (not sure how to get those off yet but will soon) but signed a confidentiality agreement about taking pictures of the inside of the house. I was too afraid of coming so far only to get kicked off so I did not take any pictures inside - only outside. I'm a rules follower at heart!

I was amazed at how much had been accomplished since Friday - when the Carr's home was demolished. By Tuesday afternoon, they were beginning to do the fun design parts to the interior and laying the concrete outside. Of course, when they have around 200 volunteers per shift & they work around the clock & have immediate access to supplies and skilled tradesmen, I suppose that speeds things up!

My work consisted of serving lunch to the 200+ volunteers for the first two hours of my shift. The dinners were donated by local restaurants but the lunch was provided by the ABC Extreme Home Makeover's catering company out of Hollywood. Kind of fun to see their trailers at the lunch tent.

Just before lunch, I had my first "Ty Pennington" sighting- he walked by on his phone. The stars all ate in their own tent but Conrad - the show's creator - did eat with the volunteers. This home is his final build so that is neat for the Carrs.

I also saw Paige & have a funny story on her - she walked by me to wash off her boots as she got a little dirty during the few minutes she was actually working on the concrete - funny since it was a construction site!

(The celebrity designers seemed to keep more to their "art tents" where they work on their special projects - the builders from the community & volunteers actually work on the house & implement the builder's designs.)

While I worked, Will spent time with his Lovie in the spectator area. He enjoyed watching the digger trucks, bulldozers, excavators, cameras, and masses of people in hard hats. Then, they went for a long afternoon nap at a nearby friend's house (gotta love the flexibility a pack n play offers!) before returning to watch some more & get me after my 6 hour shift.

After serving lunch for a few hours, I helped pick up trash from around the house, shoveled some dirt in the backyard, raked some dirt, carried lots of trim from the garage to the trim pile in back, & picked up stones. Basically, I was critical to this project. I don't know what they would have done without me. (Sarcasm here in case you didn't catch that!) I didn't care that I was doing such tasks as picking up trash - it was fun to be a part of something so huge especially since I know the family! It also gave me an inside look at the house which was very fun!
I just loved being a part of the project in my own tiny little way!


And, that night, I suppose the baby was worn out in the womb as I felt my first kick!!! I was exactly 14 weeks, 1 day but it was a definite strong jab! I love that! I've continued to feel lots of kicks this week which is 5 weeks earlier than I felt with Will. Love that movement! I've also been sick -sick again - this babe does not like me to eat out in restaurants! I get vomit-sick every single time! So weird! Loving the kicking & oh, so thankful for that reassurance (both the kicking & the sick kinds!)

EXTREME HOME MAKEOVER!!! CONGRATS CARRS!!!

Rina & Will...

love the look he is giving her in this picture:
I received a very exciting phone call this morning from my parents. On their local news, it showed the ABC Extreme Home Makeover bus pulling up to the Carrs house- friends of ours from Out on a Limb Camp & Scottish Rite Hospital for Children!!!

CONGRATS, CARRS!!!

Last fall, Katrina Carr shared with me that they were being pursued by ABC having been nominated anonymously for the show. I was so excited for them & even sent a letter of recommendation (it's below.) It felt surreal writing to ABC Producers!

This is such a deserving family - Katrina & Mike have 4 children - all adopted & 3 with special needs. Their 2 youngest kids were both in our cabin at camp last summer- they have amniotic band syndrome which has resulted in the amputations of various limbs. Precious girls - so embracing of Will (as you can see from the pics!) Mike has also had 2 organ transplants & therefore has health issues of his own.

We've continued to develop a friendship as we saw them again at dinner after hearing Nick Vuijic speak in December in Dallas & again at several events during the Dallas White Rock Marathon weekend.

This morning, they got the knock, began furiously packing, & are off to Hawaii this evening!!!

And guess where Will & I are headed?!?!? You bet- I am furiously searching for decently priced airline tickets to get home & volunteer!

One of my favorite things about having a kid with limb differences (& I have lots of favorite things!) is that we have been privileged with developing relationships with people we would have otherwise never met. The Carrs are one such family - Katrina has passed on such wisdom & encouragement to me & I am so thankful for that. I am so excited at the prospect of participating in such an incredible event next week!

Plus, through a friend of my parents who has been highly instrumental & basically in charge from the East Texas side of things in all of this, I just learned of a very exciting surprise in store... I'm not going to say it here. I realize the Carrs will not be reading in blogs from the beach in Hawaii - (pretty sure she has no time for reading them anyway with 4 kids to take care of & homeschooling!) But I wouldn't want to spoil the surprise for anyone else! Let's just say... I am in tears just thinking about it! ;)
Get excited for some "MOVE THAT BUS" pictures coming in a week!!!

(Hopefully, if I can figure out how to quickly cross the state of Texas for a decent price!)

That's Will in the blue shirt in the back with Rina Carr beside him in pink & Ryanne Carr standing up on the left.

Rina & Will are quite the little buddies...

And below is Will with his cabin mates from Out on a Limb Camp last summer- Ryanne & Rina are the ones hugging each other

Here's the local news story from East Texas this morning & a video of the knock on their door!

http://www.kltv.com/global/story.asp?s=12042879

Here's the letter I sent to ABC last fall:

ABC Extreme Makeover: Home Edition

To Whom It May Concern:

While I wholeheartedly believe the Mike Carr family deserves to be featured on Extreme Makeover Home Edition and will benefit in countless ways, I believe the greater benefit will be to your viewing audience. Featuring the Carrs will offer your viewers a story of hope, grace, and inspiration.

I’ve had the privilege of knowing the Carrs since last summer. I met Katrina, Ryanne, & Rina at Out on a Limb Camp for children with limb differences in July of 2009. My son, Will, a quad congenital amputee, was attending camp for the first time and we were placed in the same cabin as the Carrs. As a young mom and new to the world of congenital amputees, I can’t describe how encouraging it was for me to experience camp with people like the Carrs. Katrina’s smile instantly brought my heart great encouragement. Her stories of parenting children with limb differences were filled with humor and grace. Her precious daughters instantly welcomed us and embraced my son – especially sweet Reena! I have since encountered the family several times and each time, I am drawn to their contagious laughter and celebration of life. We look forward to many years of friendship as our children grow up and continue to participate in similar events as congenital amputees.

I realize that the Carrs have some major needs and that your show would certainly fulfill those needs. They are a generous family and I have no doubt that by being the recipients of a new or remodeled home, they would be freed up to volunteer more of their time and money to causes they are passionate for. What you could do for this family would not stop at a new home; I firmly believe they would continue passing on the blessings they had received.

More importantly, however, I am confident that their story will impact your viewers far more than you could possibly imagine. Featuring the Carrs would not simply impact a single family but would undoubtedly change the lives of many.

Thank you for considering this dear family,

FEET FIGHT!!!

"FEET FIGHT!!!"

Will had his first feet fight with someone who has feet almost exactly like him tonight!!!

He loved it (& so did she as you can tell from her face!) I think it was her first as well!

Hmmm... let me back up.

About 21 months ago, someone connected me with a local mom and her daughter who had limb differences- a congenital quad (meaning all 4 limbs were affected from birth.) We met & visited & I felt so encouraged as I was still pregnant but I watched her then 5 year old accomplish so much in that short visit.
Somehow, in the last nearly 20 months, I've managed to lose their contact info & they lost mine. When Will was about 6 weeks old or so, we ran into them in a waiting room at Scottish Rite in Dallas but it was so brief that the little girl didn't even remember meeting Will. And, of course, he doesn't remember that either!

Friday night, the mom finally found me & we talked. Her daughter has been feeling lonely - as if she is the only person out there like herself.

So - we agreed to meet again!

We had them over tonight for a cook out & it was so much FUN!

Will played with the kids & I got to ask LOTS of questions - both of the sweet little girl & of her mother. She too has dealt with people grabbing her hands to study/examine them & so she gave me some advice on that issue - which was great! I need to start telling kids that they should ask Will's permission first before touching him - that way he has ownership of his body & it reminds people that he is a human - not an object to be handled. Great idea, duh!

She also had advice on dealing with kids doing their "whisper" thing- when, of course, everyone in the whole room can hear them "whispering" about you. I haven't been sure how to approach this one lately & sometimes their "whispers" really anger me. She had some great ideas on this as well.

Mostly, it was fun to just be with someone who "gets it!" We are so blessed by our friends & family - they are SOOOOOO supportive! They (& you) deal with lots of emotions, they drive & fly to the race for Will, they've given of their time & money, they let me cry, they treat Will normal, etc.

But, there's still a teeny, tiny part of me that sometimes feels a bit lonely. I can talk with my friends about potty training (& my fear of it), discipline issues, feeding & sleep issues, craft ideas, school ideas, etc. But, there's a part of my life that though I can (& do) talk about it with friends- they just aren't in that world. They aren't in "research, travel, how will I pay for med expenses, therapy, should we do another surgery, doctor's visits & more doctor's visits, etc." world. They are fabulous about listening to me & supporting me but they aren't there themselves.
And, there's some loneliness in my world.
Needless to say, this part of my world isn't really addressed in What to Expect: The Toddler Years. (They've tried in a really lame chapter at the end of the book, "Your Special Needs Child." - it's lame & doesn't begin to really address my world.)

Everytime I leave Scottish Rite- I cry because I am leaving a world where at least some parent there at the same time as me gets my world & lives in my world.

Tonight, I had dinner with people who get it & live it.

I loved seeing zancos (2 pairs) thrown on my patio.

I loved watching Will & his new friend eat their dinners side by side.

I loved sharing our walking stories- & how much joy that brings us because we both get the miracle that it is that our kiddos can walk!

I loved how she helped Will with baseball. He wants to play so badly & he's been getting frustrated because he just can't seem to make the ball go as far as he would like. She plays t-ball & so she showed Will & I how she holds the bat to make the ball go far.

It's amazing that they live in our community!!!

I love that now I have a resource for the day Will looks at me, much like this little girl told her mommy last week, & says that there is no one else like him around.

I LOVE that at the dinner table tonight, she looked at me beside her & said,
"You know, I'm the only girl in this city with 4 nubbies!" Such confidence & pride in how God created her body! I said, "You're right! And, Will's the only boy in the city just like him! Wow!"

(She is not officially diagnosed with Will's syndrome but I think it is the same syndrome. Supposedly, there are only 11 people in the world with the syndrome... maybe it is a higher number & there are many who aren't diagnosed?)

Anyway, just wanted to share some pictures of Will & his new friend!

Will loves watermelon & especially enjoyed eating it like the girls at dinner
Digging away in his sandbox

Will loved his new friend's zancos- they had bright pink, purple, green, & yellow butterflies all over them! Will is currently crazy about butterflies ("buerflies")- he proudly showed off the butterfly stamp he got on his hand after gymnastics yesterday & he enjoyed dressing up again in Sunday school today as a butterfly.

When she put hers back on, he wanted to put his on! He called out the names of the pieces as she put them on (those parts he can say, that is). I think he liked seeing someone else have to go to so much work to put on their shoes too!

Digging in the sandbox with a new friend

But, I also learned something tonight that I've suspected for a while. Even though I meet someone in "my world," we're not the same. Our kids might have similar bodies but they are different & their personalities are different. And, I am not the same parent as theirs. We might differ in our therapy decisions or our surgery choices or our prosthetic choices or our research methods & even what we call our child's hands & feet. It's been so interesting to me to learn how even though we may be so similar to someone - simply because we live in this reality that only applies to 1% of the world' s population - we can also be different in our choices & our parenting & our ways of handling it. And yet, even where we may have small differences,
we definitely "get it." It's nice to have someone "get it."

Sorry - sidenote - just something I've been pondering.

White Rock Marathon - Saturday Expo

Going down the slide with Daddy at the Expo. From the front, this looked like a fun, simple enough slide. Reagan volunteered to take Will down it while I would film. It seemed to take him forever to get to the top of the slide... & he was so sweaty! I went & looked at the other side & saw it was quite an obstacle course, which he did while carrying a toddler who was wearing heavy zancos (prosthetics!) What a great Dad!

The boys after their presentation at the Expo. Rudy (gold medalist Olypmian- see below post), Reid, age 5 1/2 with one very cool rainbow striped prosthetic, Cody (in hat & yellow shirt) - double amputee, Will double congenital amputee, & a Scottish Rite doctor.


Will - waving to the crowd from the stage at the Expo.

Mr. Curly Hair

Rudy speaking at the Expo

Cody & Will watching the Expo