November 17, 2010

Little Fire Big Heart 2010: The event

**You can read about the prep for LFBH here**

By the time the first people started to trickle in around 6pm, my stomach was full of little butterflies.

The tables were set with dramatic black linens under contrasting red heart centerpieces. The event program was carefully placed at each seat. No detail was left undone thanks to my fabulous group of worker-bees that transformed this idea into reality (Joy, Angie, Ashlee, April, Mom, Cakie, Chuck, Connie, Audrey, Ricky, Lauren...gosh did I really do anything?)

The night was a whirlwind of beautiful cocktail dresses in various shades of red and dapper guys who clean up well. People mingled and munched on gourmet Italian meatballs provided by Vincenzo's and appetizers from O'Charley's too. They visited the auction tables and made their bids.

At dinner, we were serenaded with a wonderful performance by Patrick Henry Hughes - a young man who has been a guest on Good Morning America and The Today Show because of his inspiring story.

He was born without eyes and with deformed limbs but has persevered to become a well-known member of University of Louisville's marching band (with the help of his dad who pushed his wheelchair while he played), and a talented pianist, singer and author.

When the Hughes' family was featured on and episode of Extreme Home Makeover in February of 2008 during the time Aiden was in the NICU, I remember feeling so hopeful about Aiden's future after seeing how Patrick had not only overcome his challenges, but embraced them. I contacted him 2 years later about performing at Little Fire Big Heart and he readily volunteered.

Later guests watched a video that featured children and adults with craniofacial conditions. I created the piece to "put a face with a name", if you will, for some of the many conditions that affect individuals with craniofacial difference. I hope that hearing some of what they have gone through might make people realize what CCA says that "Beyond a Face is a Heart".

Then, the premier of "Aiden's Journey: Awareness and Hope" was shown. This short film documentary was created by Tommy Nolan of Creative Video Solutions and featured our family talking about the road we've been on since Aiden was born and we learned about his diagnosis of Apert Syndrome at birth. Tommy was our wedding videographer in 2005, and contacted me out of the blue after stumbling upon this blog and reading a bit about Aiden. He asked if he could do a piece that would help raise awareness and we jumped at the chance. What a perfect contribution to Little Fire Big Heart! Tommy and I worked together to come up with creative ways to raise money for this project, even applying for a grant with a major medical corporation. But Tommy was determined to make this film even if he had to pay for it out of his own pocket - which so far, he has done just that. He did not secure the grant but hopes to apply for more so that our goal of reproducing the final piece and distributing it to other families, medical professionals and schools can happen. Visit http://www.aidensjourneythefilm.com/ to learn more and see the trailer.

The film premier was followed by a wonderful presentation by the Guzzo family. Paula, a member of CCA's board of directors, and her husband Bob have two children, Scott and Aaron. Scott is another example of someone who not only defies odds but who's strength and zest for life can be matched by few. He was born with an extremely rare condition called Crane-Heise - so rare that he is known to be the only individual living with it in the world. And LIVE with it he does! Even though he is confined to a wheelchair, eats from a tube and has had more operations than his parents can keep track of, that doesn't hold Scott back. He has travelled near and far, met countless celebrities, and can Facebook with the best of them. His larger than life personality and spot-on sense of humor makes people take note - having a disability or a craniofacial difference does NOT mean you can't enjoy life! Paula and Bob's story is a beautiful one. It is full of hardships and many challenges of which I can relate while also providing much hope and strength for other parents of kids with craniofacial conditions. They have done something right in their journey with Scott and I hope to do the same!

Finally, auction winners were announced and the highly anticipated drawing for the raffle prizes began. We had 5 unbelievable packages:
~ A week's stay in a private Mexican villa and 100,000 airline miles (donated by Bill and Nancy Gorman and Ian McKenzie) - won by Matthew Rittmayer

~ 5 club seats to a Dallas Cowboys football game with a 3-night stay at The Magnolia, a downtown Dallas boutique hotel (donated by Kevin Cozzie and the Magnolia Hotel) - won by Drew Terrell

~ A custom-made diamond necklace (handcrafted and donated by Phil Haas Jewelers) - won by Joey Rauen

~ Double Lasik eye surgery (donated by John Kenyon American Eye Institute) - won by Jill Yates

~ An NFL football signed by Indianapolis Colts quarterback Peyton Manning and former Colts head coach Tony Dungy - won by Rebecca Johnson

When all was said and done, we raised over $30,000!!!! All money was given to Children's Craniofacial Association to help them continue to support the many families affected by craniofacial conditions and raise awareness. Blown away doesn't even begin to describe how I felt as I was adding up the numbers. My original goal was $10,000, which I thought was a lofty one!

I hope everyone had a wonderful time and please know that I so appreciated everyone's support and attendance. I know there is always some uncertainty as to how a first year event is going to go, but I don't think there are any doubts that I accomplished my goal of raising money for CCA. I just hope that I was able to accomplish the goal of raising awareness as well and that everyone walked away with a new understanding of and appreciation for people affected by craniofacial differences.

Click HERE for all the fabulous photos taken by
the talented Angie Eve and Cindy Bratcher from Samtec and Bob Smith from Central Music.






Little Fire Big Heart 2010: The Prep

Everyone pretty much knows how crazy the last week of September was for my family - all forces came together to pull off an AMAZINGly successful Little Fire Big Heart on Saturday, September 25th then the moving van pulled in to our driveway to empty our house for our big move to Texas that Monday. Ricky and I waited until the movers were (mostly) done, but then had to call in reinforcements (my dad) to wait on them so we could hit the road. We had exactly 2 days to get from Indiana to Texas so we could make our walk-through and closing scheduled for our new place. All the while my boys were sent home with my parents after the event and they all flew down the day after closing. It was hectic to say the least.

Most importantly, we made it to Texas safely without leaving behind anything valuable (the only thing dad found was one of the little plastic doohickies from the top of a sippy cup in the garbage disposal).

But let's get back to Little Fire Big Heart - because even though it's been two whole months since the event, I can't wait to recap it and let everyone know (the 5 people who read my blog anyway...hey mom! dad!) how it impacted my life.

I've talked about the reasons why I wanted to plan LFBH - the awareness factor for craniofacial conditions and organizations like CCA, the ability to immerse myself in something other than doctors appointments, therapy visits and the everyday worries of having a child with "special needs", etc. - but I had no idea just how much I was going to get out of this experience once it was over.

When I think about all of the planning, time and energy that went into planning this event and just how many people came together to donate their own time, energy, services and support I am completely blown away. Let me tell you, it was no easy fete. I began planning the idea with the urging of one of my college friends (thank you Anna!) who has a heart of gold and always has a million things on her plate (Junior League Cincy, volunteering and taking up cake design to name a few). Then I asked a few of my nearest and dearest to jump on the crazy train and be my co-captains in this ride. Even though each one of them had their own busy lives to tend to, they jumped at the chance to help out. I am thankful to each one of you who offered your ideas and time (however little or much you could): Dad, Lauren, April, Audrey, Anna, Jennifer, Ricky :)

I made a detailed list of people and places to contact, venues to consider and a rough estimate of anticipated costs. That in and of itself was overwhelming. It was hard to make heads or tails of it all but eventually I had to turn the brainstorming into actual decision-making. I chose the venue, Mellwood Art Center in Louisville, because it offered an opportunity to simply pay a room fee while having the flexibility to bring in any food and beverage vendors I chose (no exclusive catering companies or food limits). This made sense in the grand scheme of things as I was hoping to have all of the food and beverages donated to keep costs low.

In the end, I was able to get all of the above donated...however what I didn't take into consideration were all of the other things that also had to be provided that normally would be included in a more "full-service" event facility. Tables and chairs came with the room at Mellwood. And that. was. it. To put into perspective just how much was left to plan for (and just how many thank-you notes that need writing), here is a list of things normally provided by other venues that I had to get:

1. Table linens
2. Napkins
3. Dinner plates, dessert plates, glassware
4. Forks and knives
5. Salt and pepper
6. Salt and pepper shakers
7. Appetizer serving platters
8. Centerpieces
9. Tables to use for the auction
10. A bar station
11. Water pitchers
12. Room decorations
13. Kitchen supplies
14. Table numbers

And that doesn't even begin to scratch the surface of the entire list of items needed to pull off the event from beginning to end. Let's just say I started early and asked nicely. To my surprise getting people to donate things was not nearly as hard as it could have been. I immediately found out just how many good people there are in this world. (And I also decided that it might be worth the extra money to have it somewhere else next time around!)

I had family, friends, acquaintences and in some cases, complete strangers who called, emailed or texted asking how they could help. It felt amazing to have so many people care - so many people support me in my efforts to raise awareness for conditions like Aiden's.

Finally, the big day came. It had all the anticipation of a bride's wedding day. Up and at 'em early to prepare for the night. Everyone kept asking me if I was nervous, but I wasn't. I just knew it was all going to come together.

And it did. Beautifully.






November 16, 2010

Perfect timing

I hadn't felt homesick yet living all these miles away from the rest of my family until just a week or so ago. It isn't the approaching holidays. It isn't for lack of seeing them (because I really only saw them once a month or so). And it certainly isn't because I talk to them less (thank goodness for reasonably priced unlimited long-distance phone packages).

What set it off was a shopping trip. When Ricky came home from work last week I must have had that glazed over "I want to change my name to anything but mommy" look on my face. My amazing man handed me the car keys and said "Go. Get out of the house for a bit. Go shopping."

Uhhhhhh....gee....okay! (Isn't he great) :)

So I headed to my favorite place. TJ Maxx.

As I was aimlessly browsing, I made my way to the kids section where I bumped in to a mom and daughter who were giddily sorting through the clearance section looking for the perfect outfits for the girl's kids.

"Oooohhh - this one is cute. So-and-so would look adorable in this."

"Well what about this one? Do you like this?"

"I just bought that the other day to put away for her birthday"

I was totally caught off guard by the feeling that overcame me at that moment. I so wished I were shopping with my mom, picking out things for the boys and getting her opinion on which pair of shoes or what color shirt to get. I wanted to be discussing with my sister about what was in our baskets, how much it all cost, rationalizing why these were SUCH good deals and we just HAD to buy it and how to spin it for our husbands to soften the blow...then putting half the things back on our way up to the register as guilt overcame us. I teared up for a split second. Then realized how silly I'd look if I became a sobbing mess in the middle of the store so I bit my lip and abandoned my basket full of impulse buys mid-aisle and left.

I called my mom when I got in my car. She was out shopping with my sister.

And so I admit, I miss home. I miss being able to hop in the car to "meet halfway" between Louisville and NKY for lunch with the kids on a moment's notice. I miss being included in plans simply because they are deemed not significant enough to invite someone who lives thousands of miles away. I miss knowing that if I need my family, rather than a gas-tank and a day-trip, it would take a huge chunk out of their wallet and some major schedule rearranging to make a visit happen.

At the same time I am so completely happy here. I'm so proud of the chance that my family took to create something all our own and do something that put us out of our comfort zone. I'm so impressed with how well Ricky has taken to his new role at work. Overall, this transition has been more smooth than we could've imagined.

But I had to know that it was only a matter of time before the homesickness set in. So yes, mom, dad, I do miss being closer to home. But it makes your impending arrival for a week-long visit that much more exciting. And the thought of making the trek home for the holidays feels a little "Hallmark television special". And most importantly, I've made some wonderful friends in the few short weeks that we've been here which has me hopeful for what is to come for us here in Texas. And I really feel that there are many good things to come.

Having my mom and dad visit for Thanksgiving, then my sister coming the week after...then coming back from our holiday visit to await my cousin Angie and her husband and then my bestie Audrey's arrival in January...these visits are perfect timing. I'm one who is affected by the lack of sunshine in the winter months. So having my family and friends coming to town will, in a way, bring a little sunshine when I need it the most.






November 04, 2010

Halloween 2010 (Part 1 and Part 2)

Part 1: A 'Hey Howdy Hey' Halloween

Given the fact that my kids are still completely obsessed with Toy Story, it wouldn't have taken a rocket scientist to figure out that they were going to choose to be Buzz Lightyear and Woody for Halloween this year.

If I do say so myself these just may be THE cutest space ranger and cowboy to infinity and beyond! For more pics, click here.

We had a great time trick or treating with the neighborhood kids. The guys posted up on the driveway to assume their duties as official candy passer-outers - and the gals walked/followed/chased the kiddos as they hurried from doorstep to doorstep in search of goodies.

Part 2: The Halloween Bug

We ended the night hanging out and chatting outside but then Ricky went to bed extra early saying he didn't feel well. I put the kids to bed and was relaxing on the couch when all of the sudden Ricky comes out of the bedroom covered in sweat and looking like a ghost. He took some tylenol and I sent him back to bed . Unfortunately, the tylenol didn't stay down as he spent the next few hours hurling. I quarantined him in our room and prepared myself for a night on the couch.

As I drifted off to sleep, Ethan came stumbling downstairs just as he usually does around 10:30pm. I got up to carry him back to his bed when I felt something wet under my hand. Vomit. From head to toe. All over his bed. Gross.

I decided I would put him on the couch until I washed and re-made his bed. But he had obviously been bitten by the same bug that Ricky had so after a half hour or so of holding a bowl in front of him (and successfully catching most of it!) I decided to try to contain the germs to one room by putting him in bed with Ricky.

I tried to settle on the couch but soon awoke to a very unsettled stomach. My mind kept trying to tell me that I wasn't getting sick, but soon enough, I too was claimed by the Halloween bug. And a mean little bug this was. Luckily it ran its course for the boys through the night and they felt much better in the morning. Whereas I spent the entire day in bed barely able to lift my head for any other purpose than to toss my cookies. I was completely out of commission. This worked out okay since Ricky usually works from home on Mondays...so the boys were supervised while mommy was under the weather.

Even though the Halloween bug made it's appearance and knocked the life out of us for several hours at a time, we were very thankful that:
1. It happened after Halloween festivities so the fun wasn't ruined,
2. Aiden avoided the mean little bug somehow, and
3. All of those Kit Kats, Sour Patch Kids and Reese Cups that I swiped from the kids candy as we walked along was cancelled out later by the fact that I lost 4 pounds overnight!






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