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Make-A-Wish | Everyday Childhood

ESPN My Wish part 2/2

By now my son’s My Wish segment has already aired on TV, but I still have to wake up and have some coffee and find the link for you.  When I get to that, you’ll find it here.  ESPN.com article here.

Kyle’s Wish weekend was pretty awesome.   He knows and admires every Dbacks player, and he got to meet and talk with almost all of them that weekend.  And each subsequent occasion where he has found himself anywhere close to the team, the guys seek him out to say hi, sign more autographs, and give him the batting gloves off their hands.  They have spoiled my son rotten!

If you are a Dbacks fan, you should be so proud of your team after watching Kyle’s My Wish.  If you weren’t a Dbacks fan before, you might be one by now.  I can’t say enough about this organization.  And I don’t have to–you’ve seen it.  Everyone from Derrick Hall to the players to the PR team to the Chase Field security and staff routinely bend over backwards for Kyle and certainly went above and beyond as they granted Kyle’s Make A Wish earlier this year.  Kyle gives back, too–he cheers the team on as he either attends in person or watches every game on television.  From the bullpen to the infielders, you guys make Kyle’s day almost every day just by playing the game.

In addition to what you saw in his My Wish segment, Kyle’s Wish weekend included:

*an enormous suite at the Hyatt downtown, resplendent with baseball themed cupcakes and a Dbacks bobble-head (JJ Putz!) waiting for Kyle in our room.

*extensive batting practice with Aar0n Hill and Paul Goldschmidt at the Futures Field at Chase.

*drag racing mascot Baxter so far around the concourse that the cameras lost track of them and we all had to sort of wait around for them to catch back up with us.

*Pitcher JJ Putz escorting him to his locker and giving him a clubhouse tour.

*JJ Putz playing C0nnect 4 with my daughters in the locker room.

*Heath Bell chilling in the dugout with our oldest daughter, Jenna, showing her how to connect our iPad to the Chase Field wifi.

*a team meeting on the field and a team photo.

*Pitcher Patrick Corbin introducing himself, “Hi, my name is Patrick.”

*Rockie’s OF Ryan Wheeler stopped by to say hi–one of Kyle’s favorite former Dbacks players, and a great guy overall.

*a tour of the radio broadcast booth

*Kyle threw the first pitch in front of 24,000 people

It was an incredible experience for Kyle.  I could never thank Make A Wish, ESPN, Derrick Hall, Luis Gonzalez, Greg Schulte, Adam Eaton, JJ Putz, Willie, Martin, Aaron—you have positively spoiled my son with attention and for that I thank you.  And to the rest of the Dbacks, old or new: he is watching.   “Kubel is due for a big hit.”  “Brandon McCarthy is taller than you, Mom.”  “There goes Adam.  He’s a fast runner.”  “Does Parra ever drop a fly ball?”  “It’s Goldy Goldy gone!”  “Tomorrow is free taco day because we won!”

Diamondbacks vs Rockies Diamondbacks vs Rockies D-backs vs Rockeis Diamondbacks vs Rockies Diamondbacks vs Rockies MaW2 MAW4 MAW5 MaW6 MaW7 MaW8 MaW9 MaW9a MaW9b MaW9c

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thank you for everything, Dbacks.  Now the push to the playoffs!

Follow @SportsCenter on Twitter and follow the conversation by searching #MyWish!

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

 

ESPN My Wish (part 1/2)

My kid loves baseball–like, really loves baseball.  He loves playing baseball more than he enjoys sitting on the sidelines watching others play, but usually he will take what he can get and loves to watch an MLB game on television if he doesn’t have his own game to play that day.
One difference between Kyle and many other baseball-obsessed young boys is that the baseball he plays is on a special field made not of grass and dirt but of a wheelchair-safe, flat, rubberized surface with bases and base lines permanently painted.  The field is a Miracle League field–incidentally, this field was built primarily with a gift from the Diamondbacks Foundation and anointed Dan Haren Field after the Dbacks pitcher at the time, who also happened to be Kyle’s very first bobblehead doll–and it is the only wheelchair accessible field in Arizona where he can play baseball.  Dan Haren Field is where Kyle feels at home.

Kyle has an untreatable, incurable (so far) neuromuscular disease called Spinal Muscular Atrophy, which means his body was weak at birth and will get weaker as months and years go on.  His brain is strong and smart and clever, but his voluntary muscles are too weak for him to sit up, crawl, walk, or lay down on his stomach.  He has driven himself in a power wheelchair since age two.  He has endured surgeries for muscle contractures (joint muscles so tight that he can’t straighten his legs).  His jaws are sometimes too fatigued to chew and he has weak swallow muscles, so he is nutritionally sustained by tube-feedings at night through a hole in his stomach.  This kid is a warrior and has a lot to deal with on a daily basis, which is why we are so relieved that he has baseball in which to escape, lose himself in the game, in the competitiveness, the determination to get on base or for his team to win.

Kyle is only recently six years old and so lacks the decades of player facts and game memories that other baseball fanatics might have, but he sure knows his Arizona Diamondbacks.  The Dbacks are his favorite team ever since he attended his first game at Chase Field at age four.  He watched on TV every game after that.  He watched intently–he didn’t miss a thing.  He memorized jersey numbers, player stats, and batting lineups.  At home, watching a game when the Dbacks were pitching, he put on his tiny red glove and went through the pitchers’ motions.  When the Dbacks were batting he demanded his plastic bat and swung in time with the pitches.  When he’s in the hospital during baseball season, we watch the games streaming on my laptop.
Bobbleheads
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Kyle was welcomed to Make-A-Wish years ago but took a while to decide upon a Wish.  What would his one true Wish be?  I suspected it would something to do with baseball, but the Wish needed to come from him when the time was right.  And then last summer, he decided.  His one true Wish was “to be a real Dbacks player”.   He ached to be part of the team, I knew it and in those moments I could sense it, know it.  Attending a game at Chase Field wasn’t enough–he wanted to be on the field with his heroes and breathe all things baseball.
At the time, the baseball season was nearly over here.  The Dbacks were fighting for a playoff spot.  Make A Wish asked us if we thought we should push his Wish to happen right away or wait until next season when there would be more time to plan.  All I could see looming in front of us was flu season.Each year my only goal is for the whole family to survive flu season, and my freshly sanitized fingers crossed themselves for six months while he patiently waited.  Kyle’s twin sister, Lauren, spent some serious time in ICU with pneumonia twice this year, but she recovered.  Kyle caught some sniffles, but was well enough to catch some spring training workouts and the next thing we knew baseball season was go for launch and it was time to tell him he would get his Wish.
The rest, as they say, is history.  Or in Kyle’s case, the rest is scheduled to air on Sports Center beginning this Sunday 18 August 2013 at 11pm Eastern.  “My Wish” is a collaborative effort with Make-A-Wish which chronicles the granting of unique sports-related wishes for children.  Hosted by Emmy Award-winning journalist Chris Connelly, this is the eighth year in which ESPN has delighted Wish families and viewers alike with the stories of some amazing children and their incredible Wish experiences.  In layman’s terms, this series rocks the casbah in every region in which there are casbahs.
I haven’t seen Kyle’s My Wish segment yet.  Like you, I must wait until 11pm on Sunday.  I’m super nervous!  I hope you can hang in there and watch ALL of the My Wish stories–each one is unique and perfect and I can’t wait.
The first My Wish story begins tomorrow (Saturday, 17 August) at 11pm Eastern.  Watch it.  DVR it.  Each story runs in Sports Center continuously and ends next Thursday.  This next week is everyone’s favorite time to watch Sports Center.  Even I know this.
Follow @SportsCenter on Twitter and use #MyWish to join the conversation.  Enjoy some amazing stories.  And view the My Wish archive here.  Tweet at @byrdsforacure should you feel so compelled.  And send mad props to @SportsCenter and @MakeAWish for continuing this series.  It’s so amazing, right?
Kyle Dbacks Kyle Dbacks1

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Make A Wish Memories

My family kicked 2012 off in an awesome way–an amazing Disney World experience, courtesy of Make A Wish.  The trip was unbelievably awesome and we created some amazing, long-lasting memories.  We made a huge effort to take as many photos as possible on this trip because we knew this was a once-in-a-lifetime experience for Lauren (and the rest of us).  I shared our experiences here.

A close friend of mine happens to be not only Disney World’s biggest fan but also a devoted, generous, committed scrapper.  After Lauren’s Wish trip was over, I sent her hundreds of photos.  She sorted through them.  She networked.  She produced.

Oh.  Did she ever produce.

With the help of an amazing scrapbooking network–and a hefty budget, clearly–she recently surprised my children with three scrapbooks filled with amazing memories of our trip earlier this year.  The kids love to look at the photos.  But I can’t get over the attention and detail paid to every single page.  These are gorgeous books.  I have to share my favorite pages:

 

Merrick is a longtime friend.  She’s known me before even Facebook existed (yes!  that long!).  She’s good people and you should check out her blog.  While you’re at it, give a visit to Disney Scrappers, too.  Folks from Disney Scrappers donated pages and supplies for our scrapbooks–I’m indebted to them!  My kids only see photos on these pages, but I see blood, sweat, tears, generosity on all levels.  Thanks, ladies!  Merrick, your thoughtfulness and generosity can’t be matched.  Thank you so, so much.  ((hug))

I recorded the moments when the kids flipped through their scrapbooks for the first time.  Enjoy!

For those keeping score at home, Kyle’s Wish has been made but won’t occur until next year.  Not until the next Major League Baseball season, in fact.  Not to give anything away or anything.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

 

Trip of a Lifetime.

My youngest daughter, Lauren, brought us on her Make-A-Wish trip to Disney World earlier this month.  While I supported this wish, I almost dreaded the amount of work it would involve.  But her devotion and obsession with all things Disney, and her absolute obsession with the original Mickey Mouse characters (Mickey, Minnie, Pluto, Daisy, et al), were too compelling to even think twice about it.  I tried to forget how much footwork would be involved and completely focused on what a magical experience this would be for her.  And it was!  Goodness, it so was.

In advance of our trip, we:  had consultations with Southwest Airlines management and operations personnel regarding the safe transportation of two 350 pound electric wheelchairs, met in-person with local TSA professionals to discuss security logistics, consulted with Orlando-based Vacation Mobility to determine which type of wheelchair accessible van would accommodate us, and finally had the stress-related aneurism I’d been waiting for.  Just kidding, an aneurism is nothing to joke about.  Though Lauren’s twin brother experienced a bowel obstruction emergency which almost required surgery two days before our trip.  Kid!  Please!  Quit trying to steal attention from your sister’s Make-A-Wish trip!  Just kidding.  His bowel obstruction was mild but very real, and while it was resolved without affecting Lauren’s wish trip, it was highly stressful and made for a less-than-pleasant flight from Phoenix to Orlando that Sunday.

Our three objectives for this trip:  Lauren’s princess makeover at the Bibbidi Bobbidi Boutique, Jenna to ride on Space Mountain, and Kyle to visit The Wizarding World of Harry Potter.

 

Done.

 

Done.

And done.

Our trip was so, so wonderful.  Every minute of every day.  It was hard, a lot of work to be sure.  But frankly, being the parent of a disabled and medically fragile child is a lot of work–and a lot of love–during any normal day, so the  days may as well take place in some of the planet’s best theme parks.  Right?

 

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

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Read other related Make-A-Wish blog posts here.

Project: Rainy Day

The second of two blog posts from Girl Twin’s Make-A-Wish trip to Disney World is written, but still pending photos.  Fingers crossed that I can have it ready for next week!

In the meantime, bear with me.  I am concocting a plan, and I need your help to make it happen.  Hear me out:

Give Kids the World Village, as I explained here, hosted our family during Lauren’s Wish trip.  In the busy summer season, it serves as a free hotel to over 100 families with medically fragile/life-threatening condition children with wishes to visit Disney World  (only about 40 families vacationed there with us this month, the off season).

During our week-long stay there we found volunteers everywhere.  They were raking leaves in the yard in front of our duplex, delivering via golf cart coffee to our doorstep in the morning and cookies the rest of the day, picking up our kitchen trash, sweeping sidewalks, serving us free breakfast, lunch, & dinner.  They run the gift shop, the daytime and evening activities for the kids and families, the ice cream shop, the merry-go-round, and the guard gate at the property entrance.   This place is ahh-mazing.  I was astounded at how the local metro-Orlando communities and businesses have embraced such a cause and I got the sense that nothing but nothing would stop them from keeping this place up and running.

Well, they lack one thing.  This is where you come in–they keep a DVD library for families to use on our off-days.  When it comes to families with Wish kids, some days we’re not up to the challenge of visiting 7+ theme parks.  The pace of those theme park days, and the stamina required to endure them, it can completely sap us.  Having the option to take a load off and enjoy a movie in our villa was so wonderful (all the villas are equipped with TV’s and DVD players).  Plus, the weather in Florida can be so unpredictable that all the stamina in the world cannot make you want to visit Disney World in the rain.  The only catch: their DVD library needs some fleshing out.  You know those cubicle storage units that Target sells, the ones that look so useful in their pretty advertisements but when you get them home it turns out that they’re not quite so useful?  The DVD library at GKTW takes up just two of those cubicle squares.  Their DVD library is entirely dependent upon donations, so it’s all but empty.  Our local library’s DVD section has hundreds to choose from, but that’s not the case at Give Kids the World.  Not a single Harry Potter.  Zero Star Wars.  None of the Night at the Museums, and nary a sign of a Home Alone.  It’s so sad.  Instead, there were a few Blues Clues, a Hannah Montana flick, and some Lizzie McGuire discs.  Right then I pledged to survey our own DVD collection when we got home and ship over whatever we’ve outgrown.

Due to the nature of the program, kiddos who stay at Give Kids the World are facing life-and-death uncertainties and I guarantee to you that their parents are in the process of making some decisions that you probably can’t even imagine ever having to face.  If the child who has the enormous blessing (and misfortune, given the requirements to stay there) to deserve a stay at GKTW needs some downtime on the couch with a movie and her family, they deserve some age-appropriate movies that they might really enjoy.  I realize that perhaps in the grand scheme of things a few DVD donations aren’t going to make or break the good people at Give Kids the World.  But you, I ask you to realize that some Spy Kids or some How to Train Your Dragon would have been warmly welcomed during our down days.

Your task:  Go through your DVD collections.  Anything that a kid aged 1-18–or their families–might enjoy and you can do without, ship it to Give Kids the World.  They ask for only G- and PG-rated films, and while I want to respect that I still think they deserve ALL the Harry Potter flicks (at least one of those is PG-13).  Use your discretion.  Also, if you’re in the United States, use “Media Mail”–it’s cheaper than any other type of postage.

Ship to:

Give Kids The World Village, Attn: Project Rainy Day
210 South Bass Road
Kissimmee, FL 34746
407-396-1114 (Tel)

Should you wish to participate but have more money than time, visit this handy Amazon wish list I personally made for them.  It will ship directly to the good people at GKTW.

I can’t do much to show my gratitude for everything we were able to enjoy as a family during Lauren’s Make-A-Wish trip to Orlando.  But I can certainly help make the visits of their future families more enjoyable.  Besides, Kyle still hasn’t chosen what his Wish will be.  If he eventually picks Disney World, we’ll all be back at GKTW, but hopefully not be stuck with such a dismal DVD collection again…

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Follow Make-A-Wish and Give Kids the World Village via these links.  Learn more about the ahh-mazing GKTW here.

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Update:   I’ve had 20 DVD’s dropped off at my doorstep and three more purchased from the Amazon wish list in the ~36 hours that this post has been up.   The kiddos staying at Give Kids the World this summer will be well entertained!  Ideally there will be 300 more DVD’s sent to them, but we’ll see how it goes.

Also:

Q: How much would I love a donation of 140 Blu-Ray players for them?  A: It would make my year.  And…. go!

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Our Make-A-Wish Trip: Giving Credit Where Credit is Due.

My family just enjoyed an amazing week at Walt Disney World’s Magic Kingdom, Animal Kingdom, Hollywood Studios, and Universal Studios thanks to the collaboration of several amazing organizations.  Our trip was entirely organized by and paid for by the Make-A-Wish Foundation*.  After I applied for Lauren’s Wish, they interviewed her, surprised her with gifts, and then agreed to send her to Disney World–holy wow, what an amazing gift for our entire family!

After weeks of emails and a face-to-face meeting with local SWA management, Southwest Airlines happily carried our precious cargo to and from Orlando.  They waved off our extra baggage fees–and our heavy baggage fees  (pallets and pallets of Pediasure)–escorted us to check-in, escorted us to our gate, the ground crew conferred with us and allowed my husband to escort the (empty) wheelchairs down to the tarmac.  They installed car seats for the twins in the aircraft, announced to all passengers that this was Lauren’s Make-A-Wish trip to Disney World, and  allowed the kids to visit the cockpit–and that special treatment was just on our outbound flight.  For our inbound flight, our family was met by TSA at the curb (in a good way!), escorted to the Southwest ticket counter, escorted through the security line, and helped us lug our carry-ons to our gate.  And there in Orlando, they also allowed my husband to escort the $65,000 wheelchairs plane-side, installed the twins’ car seats onto the plane, and were entirely attentive to our family during the 4+ hour flight.  All this PLUS they had to clean up someone else’s puke in the rear lavatory AND had to announce that whoever left their dentures in the lav should press their call button.  They don’t wear capes, but those flight attendants were Super Heroes, ya’ll.

 

Back to Orlando:  We stayed at Give Kids the World Village in Kissimmee–have you ever heard of it?  It’s a community of cottages, eateries, swimming pools, and other goings-on–completely catering to Wish kids or otherwise medically fragile children who are in Orlando to visit the theme parks.  A stay in this adorable and luxurious village is offered for free to families who enjoy/suffer/ the blessing/curse of even needing a Make-A-Wish at all.  But the Village is so cheerful, so uplifting, so accommodating and offers SO much free ice cream (beginning at 7:30am for breakfast and closing at 9:30pm before bed) (HUZZAH!).  The children enjoyed their first horseback rides, visits with Goofy, Pluto, and Belle, and a “Pirate & Princess Party” which has no rival.  As their parents, there is nothing more joyful than seeing them surrounded by characters and people so devoted to their happiness.  I cried a few times during the Pirate & Princess Party and tried to hide it, but I know a few others noticed–I’m sure I wasn’t the only one.  And when Lauren visited the pillow tree to “make” her pillow, and the wishing well to make her wish, her joy really was priceless.  She sleeps with her new fairy pillow every night.  And when she cast her little gold star with her name on it into the Star Fairy machine, I almost lost it.  I looked up and saw thousands of stars–one star for every kiddo who has spent time at Give Kids the World.  Given the nature of the program, I know that so many of those kids aren’t with us anymore, and that was really the first time in a long while that I’ve considered that my own children won’t be with me forever.  Such is the nature of their disease.

(closing her eyes, as she throws her coin into the well to make a wish.)

 

Give Kids the World is entirely run on donations and volunteers–their carousel is run by a volunteer.  Their cafeteria (“Gingerbread House”) is completely operated by dozens of volunteers.  Their “Kids Night Out, Parents’ Night In” program is run by local volunteers.  Their meal delivery is–you guessed it–run by volunteers.  Their semi-weekly horseback riding program is operated by volunteers.  Give Kids the World overall is the daily operation of an enormously successful mass of generous donors and volunteers–and we couldn’t be more thankful for or more proud of them.

 

Our time spent at Disney World and Universal Studios was completely out-of-this-world amazing, but that’s another blog post.  SWA and Give Kids the World deserve my spotlight this week.  You folks were amazing.  Your hard work made an amazing week for my kid.  And for my family.  We don’t get many “amazing” weeks, so this one was for the record books.  Thank you, from the bottom of our hearts.

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*Did you know that the MakeA-Wish Foundation was founded here in Arizona?  It started with a little boy who wanted to be a police officer for the day.  Read the story here.

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To follow Make-A-Wish, Southwest Airlines and Give Kids the World Village, simply click these links.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.