Bowling videos


Ice Skating videos



My little ladies man...part 2

If you need a refresher on "My little ladies man...part 1" click here.

Something tells me there are going to be a lot of broken hearted girls in Ethan's wake. I'm going to go ahead and apologize now on his behalf. And also for my husband who encourages said behavior with his "that's my boy" remarks after things like what I'm about to describe.

This weekend we decided to have a family day full of firsts. We took the boys bowling - because nothing says holiday cheer like the sweet, musty haze of a bowling alley. They were a little wild in this new territory, but did pretty well thanks to all of the contraptions available to ensure kids can gettheballdownthelanefortheloveofpete. The combination of the bumper guards (to eliminate the chance of gutter balls) and a large metal ramp (to give the ball some initial power) allowed the boys to do just that. Even if it did take almost a minute for it to spin down and make contact with a pin. It was the longest single game of bowling I've ever participated in. And I wouldn't have changed that for the world!

After a quick pit-stop at McDonald's to refuel, we headed next to the local indoor ice-skating rink. Let me tell you ladies and gentlemen, I could not have been more proud of my two boys that day. Aiden has never been one to take risks. He usually likes to sit back and watch his brother be the one to crash and burn or get in trouble. However lately we have been seeing an entirely new side of him. Mr. Independent has emerged. It was a struggle to squeeze his feet into the skates but we were shocked that he even let us do that. We definitely weren't expecting him to make it out onto the ice. But lo and behold, he actually skated! I did bear most of his weight holding him up under his armpits (for which my lower back is reminding me today) but still this occassion was one that we will always remember!

And Ethan - oh my sweet little ladies man. Aiden and I were taking a breather on the sidelines when I looked up to see Ricky skating by himself, not hand-in-hand with Ethan as he had been a few moments earlier. It wouldn't have surprised me at all to find that Ethan was skating triple toe loops in the center of the rink, but that wasn't what was going on. Instead, he was sandwiched between two 10-year-old girls holding each of their hands and grinning ear to ear. They continued for 15 minutes or so, then followed him off the rink to where we were standing with Aiden. We talked to them for a bit then decided it was time to go so we left to turn in our skates. When we turned around, the girls, Hannah and Breezy, had come out to keep them company for a little while longer. Both Ethan and Aiden were eating it up!

In the car, Ethan announced "Mommy, I'm going to marry RoryCate, Tara [see the Snow Day post], Lucy [from Charlie Brown] and Hannah...but I sure hope I can make it to all of the weddings!"

Ethan and Rory Cate, our friends' from Dallas little girl
 
Ethan ice skating with Hannah (in pink hat) and Breezy
 
Ethan and Lucy :)

Sledding in Texas?!?!?


Neighborhood Snow Day

It is December. I have to keep reminding myself that as we experience the holidays in Texas this year.
I mean seriously folks, we walk to the mailbox in shorts and flip-flops to gather our Christmas cards. Last year I would have had to suit up in full-on frosty the snowman gear to do the same task back in Indiana.

So yes, it's a little bizarre and has taken some getting used to. But I must admit...I FREAKIN' LOVE IT! I've never been a huge cold-weather person. I'll take being able to roll down the windows to drive around and see Christmas lights!

To help get into the holiday spirit, we've been tuning into to Christmas music every time we're in the car, drinking hot-chocolate at night and watching all the old holiday classics with the kids (Rudolph, Charlie Brown Christmas, etc.).
The boys enjoying their cookies and cocoa

Our neighborhood even gets in on the action by driving in two 18-wheelers full of ice and grinding it into snow. They organized a neighborhood "Snow Day" complete with sledding, snow ball fights and a gourmet coffee bar. The kids had a blast...and so did we! One of the best things about being a parent is that you kind of get to experience being a kid all over again, but can disguise it as "doing it for the kids" ;)



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.

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.

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!

The one where I talk about Baxter (bear with me, there is a cute Ethan story at the end)

When moving across country, we have been forced to "purge" some of our belongings. For one reason or another some things just didn't make the cut.

Suddenly that ricketly old table that has followed me from apartment to condo to house since college simply wasn't good enough for our brand spanking new place. And the clothes that were (still) two sizes too small that had been sitting so long on the wire rack in the back of my closet that they have permanent indentions in the fabric...yeah, perhaps it was time to say good bye to those as well.

We trashed, donated and sold many of our things in preparation for the move and honestly, we haven't missed any of it. Except, that is, for one thing in particular. Baxter, our cat.

Ricky and I adopted Baxter when he was just 4 months old - he was a gift to me for our 1-year dating anniversary. It was one of the first things that kind of solidified us as a couple. Everyone knows that when you get a pet together, that pretty much means you're in it for the long haul. Baxter was the perfect kitten. Playful, gentle and cuddly. I always said he was more like a dog because he would follow me around from room to room and wait for me by the door to come home.

After we were married, Baxter moved with us to our first home. And he marked his territory by urinating in multiple corners of the basement. Grrrrrr.... We sprayed sprays. We strategically placed furniture. We purchased the "Urine Gone" with the blacklight from the infomercial. But to our dismay, the damage was already done. We'd constantly ask people if they could detect any odor when they'd visit. The nice ones lied and said no. The honest ones lied too. Nobody wants to tell someone their house stinks like cat pee. We obsessed over it. Sniffing, spraying, repeating.

Before we moved into our next house, my dad gave me a book for Christmas that was called something along the lines of "How to toilet-train your cat". I'm serious. I flipped through it jokingly but found myself seriously considering giving it a try. Can you imagine? A friend comes over for dinner, excuses himself to use the restroom and interupts Baxter Mittens tinkling on the potty a la Jinxy cat on Meet the Parents. Totally absurd.

We did everything in our power to keep Baxter from marking his territory all over again out our next place. And although there were occassional slip-ups, I think it was less noticeable because this house was much larger. Besides, what were we going to do? Get rid of the perfect cat that had become so much a part of our family?

The kids loved Baxter. And despite the horrific amounts of abuse that Baxter took at the hands of the kids, he, in turn, tolerated them surprisingly well. I'm talking Ethan sitting on him, Aiden pulling his tail, stealing his toys, spilling his water - the works. At the end of the day, he'd still curl up at my feet and gently purr. He was not one of those mean old crotchety cats who hid for hours on end. He loved to be with us always.

When the decision to move to Texas was made, we had gone back and forth about whether or not Baxter was going to come with us. Ultimately, we decided that yes, we couldn't just leave him behind. And if we did, it would have to be with someone we knew - we would never just take him to the pound or post a "Free to Good Home" flyer at the supermarket.

The next big decision was how to get him here. The thought of cooping him up in his travel cage for a 16 hour drive in a jam packed car was not appealing (for him or for us). But the only other way to transport him would be to send him on the airplane with my parents...who were also so generously bringing our kids down with them too. That also seemed like torture (for him and for my parents) so we decided that my mom and dad would keep him until they came back to visit us for Thanksgiving. In the time since, Baxter has grown on my parents and they asked if we wanted them to keep him for good. We looked around at our house that still smelled brand new and made an executive decision. Go ahead, call me a rotten cat-owner.

With all the craziness of the move, getting unpacked, getting organized, etc., the boys never really mentioned Baxter (or the lack thereof I should say). That is until today. Ethan and Aiden were playing upstairs when Ethan came flying down with a ball in his hand. He put the old cat toy that had gotten mixed in with theirs in my lap and said through quivering lips, "Mommy, I miss Baxter". He then broke down sobbing. It broke my heart.

ME: Oh sweetie, Baxter is at Nana and Grandpa's and he loves it there. They are taking very good care of him.

ETHAN: But I want to go to Nana and Grandpa's.

ME: We will be there in a few weeks for Christmas.

ETHAN: No, I want to LIVE at Nana and Grandpa's.

ME: But Ethan, that would make mommy and daddy very sad. You wouldn't see us every day.

ETHAN: That's okay. You can see me at Christmas.

And there you have it. A long drawn out story about our abondoned cat so that I could explain how my son wants to abandon his parents at 3 years old. Somewhere in Northern Kentucky, Baxter sits curled at my mom's feet with a smirk on his face thinking "Haha, now you know how I feel!"

(Oh, and by the way, dad, I'd give you the book back now that you are Baxter's rightful owners, but unfortunately that was one of the things that didn't make the cut in the move.)

;)

Big Tex and Fried Cookie Dough

Our friends April and Tate invited us to their house this week to hang out and to go to the Texas State Fair the following morning. Fun was had by all!

The kids got along wonderfully - in fact, after John and Rory Cate had baths at night and were both fresh in their jammies, Ethan proclaimed that Rory Cate (who just turned 2) looked like a princess. He then said "Mommy, I think I'm going to marry her!" Her dad, Tate, just laughed and said "At least I like ya kid!"

It was really cool to go to one of the largest state fairs in the US. We saw Big Tex, rode the tallest ferris wheel in North America (212 ft.) and enjoyed a balanced and healthy diet of the award winning Fletcher's Corny dog and the delectable Texas Fried Cookie Dough. (Mmmmmmmm...is all I have to say)! Unfortunately we didn't stick around long enough to fill up on other treats like the Fried Beer, Fried Butter or Deep Fried Fritos Pie. Maybe next year (although those don't sound as good).

Thanks Gormans for the invite and for introducing us to a little slice of Texas history!

An update at last!

So we are here in Round Rock, TX and loving every minute of it. The weather has been amazing - not a single drop of rain in almost 2 weeks, blue skies, sunshiney and 80s - although I've been told that we have been lucky as it is usually about 10 degrees warmer than this current cool streak.

The house is slowly but surely coming together. I think about 75% of the boxes are unpacked. Things are finding their new spots (and being moved, and moved again until I like where they are). When it is in a state that isn't totally embarassing, I promise to take some pictures for everyone to see. Although if I haven't gotten around to it by October 29th - then you may want to tune into HGTV's House Hunters...our neighbors a few houses down from us were featured on the show and they ended up choosing the house they live in now which is a mirror image of our home. Not sure how different the inside is, but you'll be able to get the idea.

Speaking of neighbors, it has been an amazing experience (as I hoped it would be) living in a neighborhood like this. Within the first few days of moving in, 2 different families knocked on our door with cookies, muffins, brownies and cards welcoming us to the street. I've been invited to a jewelry party get together, got an email from a neighbor asking if we can get our kids together outside, had another neighbor ask me to come along with them to a local pumpkin patch for a playdate (the HGTV mom) AND one of them is hosting a "Get to Know your Neighbors" party this Saturday. I'm really thankful to feel so included in what is obviously a very friendly and active neighborhood.

Ricky is liking his new role with Samtec. He has some time in our home office and then is meeting with customers throughout the week. It's neat to have him home during the day sometimes - although I think there will be an adjustment period for all of us...teaching the kids not to bother daddy in the office when he is here, and helping Ricky get used to the everyday noise and chatter of working at home.

I'm happy to say that I have not felt homesick...yet! Technology really helps in that area as we've been able to video chat with our families using Skype. The kids just get the biggest kick out of seeing people on the computer. And with all of the fun things to do within the community, I think we will really enjoy our time here. That's not to say that I don't miss certain things about living closer to my family, but we've both looked at this move as a new start for us and I think that outlook has made it a little easier. Besides, I may be spoiled but I've got a lineup of visitors from now until January! My parents are coming down for a week at Thanksgiving, my sister is visiting the following week, my cousin Angie and her husband Tim will be here in January and my best friend Audrey is coming in January as well! We are always open to having visitors and would love to show everyone our new digs, so if you are ever in the area or up for a little getaway, give us a call! :)

I'm hoping to start blogging more regularly now that we have some level of organization around here. I am awaiting photos that were taken at last month's super successful Little Fire Big Heart event and will definitely share those once I get them (and also include a round up of the night's events).

Later ya'll ;)

You've Got A Friend in Me

Lately Ethan has be OBSESSED with Toy Story. He knows every character by name from Toy Story 1, 2 and 3. He's watched it so many times that he says the words to the entire movie right along with it. In fact, he loves the movie so much that he could sing the song "You've Got a Friend in Me" in his sleep. Wait...he actually DOES sing it in his sleep. It's really kinda creepy when your 3 year old who has abandoned his own bed at 3am to sneak in bed next to you in yours begins singing while he is SOUND ASLEEP.

While recording him singing in his sleep may be the most successful option to catch it on tape (because it's literally the only time he is still) - I think taping him while he sleeps might be even creepier. So today, I bribed. I asked Ethan to sit on the steps very still and sing for the camera. And if he did, I'd let him stay up a little later tonight. It worked. (Well, Ethan stayed relatively still...Aiden on the other hand did not.)

So now, ladies and gentleman, prepare to be serenaded by my handsome, hot-shot, "next big thing" 3 year old...Ethan Anthony Skees!

PS - don't forget to scroll all the way down the blog to "pause" the music on my playlist so that you can hear the video!


A Lifted Weight

While the title of this post may sound as if I've finally gotten around to hitting the gym and getting my butt back in shape (again...) it actually is referring to the HUGE elephant that has been sitting on mine and Ricky's chest for the past, well, uh, YEAR AND A HALF!

We put our house on the market in the spring of '09 with hopes of a quick sale and a move to a neighborhood. We actually put an offer on a home in New Albany in a cute area with a community clubhouse, block parties and neighborhood swimming pool. Obviously our offer was contingent upon the sale of our home.

The contingency date came and went. Our house still hadn't sold.

Then we adjusted our plan and figured we might as well look at all of our options - perhaps moving back to Louisville was worth a shot, as this was something we had talked about doing since we lived there when we were first married. We looked and looked and looked for something that struck our fancy (and that we could afford). But with no nibbles on our house, we started to lose hope. Maybe a move just wasn't in the cards for us at the time.

Then, an opportunity presented itself amidst all of this that was very appealing. A possible move to Texas where Ricky would remain with his current company, but take on a new role. We couldn't help but think that just maybe THIS was why our house hadn't sold yet. Maybe moving to Texas was what was supposed to happen.

We changed realtors, scraped together money from our savings to update our kitchen, and made other small improvements that would possibly help us get an offer. In the meantime, Ricky immersed himself in the new role in TX, traveling once a month for a week at a time to begin establishing relationships for his new role in sales. He and I were both very optimistic that in no time we would be packing up our things and heading to the Lonestar state.

A month went by. Then two. Then two more.

While our realtor was doing all she could to move our home - lots of showings, good advertising, open houses - the market just hasn't rebounded like people thought it would and even though interest rates are at an *all time low*, it still wasn't enough to allow us to sell our home for a price that we could live with.

All the while I am at home trying to plan Little Fire Big Heart, take care of 2 kids AND clean the house on a moment's notice...because, you know, THIS could be THE ONE! And Ricky was transitioning from his current role to the new one, without having any clue if this move was even going to work out. We had to sell our house after all and at this point it just wasn't looking promising.

Stress with a capital "S" doesn't even begin to describe the emotional state of all individuals within our household for the past few months (well, I guess the kids weren't really stressed, but they could definitely tell that we were...and that just breaks my heart). We tried our best to wake up each morning with a renewed sense of hope and a good attitude - but eventually we had drained our positivity tanks.

I'm a planner by nature. I'm a Virgo. So when I don't have a vision in my head of what the future holds (even though I also know that things rarely go as you plan), I get really preturbed. When I would think about where the kids would start preschool or where we might go trick-or-treating or where we'd be putting up our Christmas tree, I saw a big blank picture. There was absolutely no plan. Which to me = chaos. It drives me batty.

And then, just when we had reached our lowest point, we got an offer. Even though it was a low-ball by $30k, we went ahead and countered, only to find that they had only been pre-approved for what their offer was. We just couldn't take that big of a hit.

I was ready to throw in the towel on this whole move thing. We gave it our all. Even St. Joseph must have given up - I pictured the little statue we planted near our For Sale sign tapping it's little foot and wondering under his breath "Guys? Can you just come get me out of the ground now? Please?" I was preparing myself to resign to the fact that I guess we had already gotten the answer we'd been praying for. And it must have been that we were meant to stay put.

Fast forward 10 days...the couple who gave us the low-ball offer scheduled a 2nd showing. We got another offer from them - this time, one that both of us were able to make work.

We have no doubt that THIS is how it was supposed to happen.

We are looking at a Sept. 15th closing and a move by Oct. 1. Please pray that all goes smoothly. We are ready to start this new and exciting chapter in our lives!

Goodbye elephant. And goodbye Indiana.

Two sweet girls

I grew up very close to my mom's sister Cakie and her kids Joy, Angie and Joey. We were really more like brothers and sisters - both my mom and my aunt worked in schools so we would load up the station wagon when summer came around and head to our family home near lake Michigan for a few weeks at a time. I have the fondest memories of my summers at Poppy's house. There was never a dull moment. We'd walk to the beach, hang out in town or make up our own games to play outside until dark. We'd cry when we had to leave each other at the end of vacation and couldn't wait until the next reason to be together, whatever it may have been (birthday party, first communion, etc.)

My sister and I are very close. Even though a 5 year age gap didn't always prove to be the easiest thing for us to endure. When she was putting on makeup with her friends for a Friday night football game, I was peeking my pig-tailed head in to spy on them and wishing they'd let me play with their makeup too - ha - not a chance!

But as we've gotten older, and have more in common as adults, there is no doubt that our relationship has come full circle. We now compare ourselves to "the moms" (what we call my mom and my aunt Cakie) and I want to make it a priority for our kids to be just as close as we were to our cousins. With a move to Texas in our future I wanted to do something fun with my sister's two girls, Lilly (5) and Avery (2). I invited them down for a few nights to have a slumber party with their cousins and to give my hard-working sister and her husband a few nights of kid-free time.

Ethan and Aiden were both ecstatic to pick up their cousins on Thursday evening. Although I was definitely looking forward to it as well, I was also realistic in my thinking and I knew that taking care of 4 kids ages 5 and younger was going to be a challenge. Being the planner that I am I laid out a detailed schedule well in advance. And again, being realistic, I knew that those plans may not all happen as I'd intended but I also felt comfort in having something to look to if I ran out of ideas on the spot.

I'm happy to report that the weekend was a success! I borrowed my mom's van so that I was able to venture out with all 4 kids in car seats/boosters. We had "movie night" Thursday evening where they spread out their sleeping bags in the family room and had popcorn and drinks. We played outside in the grueling heat on Friday - sidewalk chalk, bubbles and bikes...until the pesky horse-flies scared me the kids inside. We had craft time - finger painting with the big kids while the little ones napped. We had healthy snacks and 3 well-balanced meals.

On Saturday, we headed to the Louisville Science Center, followed by a picnic lunch in the park and play-time at the splash park on the waterfront. The kids were all so good and honestly I was surprised at how easy it was to take care of all of them. There were a few moments of whining and toy-taking, but in general, things were smooth. They definitely enjoyed having the extra playmates around and boredom was never an issue. As for myself, I felt on top of my game. I think the threat of chaos gave me a boost of motivation to keep things under control. In the end, I think it was a boost to my confidence as well!

I absolutely, 100%, without a doubt, loved having my two sweet nieces here for the last 3 nights. I miss them already and will have them back any time.

See Ricky (honey...sweetie pie...) 4 kids wouldn't be so bad now would it??? Maybe our next will turn out to be twins! That would be awesome! (Right honey?) :)

PS - no, I'm not pregnant in case you're wondering.

PPS - I have pics from this weekend, but once again I didn't have my camera so they are all on my cell phone. Have to upload sometime soon...

Keepin' Busy

We've been so very busy the past few weeks that I've totally neglected my blogging. Then, it gets a little overwhelming when I think about writing because I know that I have sooo much to talk about to get everyone up to speed.

So...this is the perfect time to do a short but sweet "list" post as a transition back into my regular posting.

What have the Skees' been up to this summer?
  • Aiden and I flew to Boston, MA along with my mom, sister and aunt Cakie at the end of June for the Children's Craniofacial Association Annual Family Retreat. It was a great experience and we met many of the family's that I have up to this point only talked to through email or heard of in the quarterly CCA newsletters. We were also able to explore Boston a little bit - including a trip to Harvard's campus and Harvard Square, the Boston Aquarium, the infamous Cheers bar (the show's inspiration), Paul Revere's house, and Faneuil Hall Marketplace.
  • After having the return trip from HELL (delayed flights, bad weather, exploding diapers, more delayed flights...) we got ready for a 4th of July trip to my parents house for the annual Edgewood parade/block party. We then headed to King's Island with the boys and later, my brother outdid himself with an unbelievable fireworks display in his neighborhood. Ethan LOVED it. And to my surprise Aiden didn't freak out like he did last year. Although he only lasted through half of it before taking cover inside with Nana.
  • We've also been swimming a lot to stay cool. Aiden has totally become a fish and loves every minute of splashing in whatever pool I put him in. Many of you might remember how I paid for swimming lessons with him a few months ago and he screamed and cried through the entire class. Yeah, we quit after the 3rd one. But now, not sure how or why, he loves it. I guess he just had to prove he likes to do things in his own time...when he's ready.
  • Ethan got his haircut!!! I'm not talking a trim. I'm talking bustin' out the trimmers and all of his fine, long baby hair hitting the floor while I stood there bawling like an infant. At first he didn't like it. But now that he gets to use his daddy's hair gel to spike up the front a little, he thinks he's pretty cool. Who am I kidding, that kid always thought he was pretty cool. (I'm a bad mommy, don't have a picture. I was too busy crying to take any).
  • When we are inside escaping the sweltering heat of the summer, we're playing with toys and watching movies. We took Ethan to see his first movie at the theater, Toy Story 3 in 3D, and he absolutely loved it. So Toy Story and Toy Story 2 have been on repeat in our household and Ethan is completely obsessed. He knows every character, can do their voices, and has memorized every word of "You've Got a Friend in Me". I captured the whole thing on my cell phone, so now I just need to figure out how to upload it to my computer and I promise I will share it with you because it is by far the cutest thing you'll ever hear (well, it's the cutest thing I've ever heard anyway).
  • Being inside so much is definitely making it a bit harder to keep up with the cleaning for the numerous house showings we have since our house is STILL on the market. Ugh.
Anyway - I hope everyone's summers are going well. I'm getting really excited to share with everyone all of the cool things I've got in store for Little Fire Big Heart...but that'll be another post. :)

This house, our home

With our house up for sale, and the move to Texas becoming more real, I've started to reflect on our time here in this house more and more.

I've always been a girl of the suburbs - cul-de-sacs to play tag until our moms called us in for dinner, minivans parked in the driveways, sidewalks etched with pastel chalk houses and scribbled names. Our first house, where Ricky and I got our start, was a picture perfect cape-cod with a fenced backyard and great neighbors. But we wanted kids - and although the house itself was a good size, the yard is where we knew we'd inevitably be spending much of our time. Grilling out, riding bikes, shooting hoops. We got the itch to look for something with more outdoor space.

Ricky's boss told us that his neighbor across the street was preparing to sell their house - they were being transferred to Florida. He made a phone call, sent us a picture, and we were able to stop in to the house before it was officially listed. I begrudgingly made the drive across the river to Southern Indiana (I truly had no desire to become a Hoosier) to appease my husband and "just look" at this house. At first sight, I didn't really care for it. It's a salt-box style house and had no character from the outside. I may have even told Ricky to just turn back around so we didn't waste this couple's time. We continued down the long driveway and I agreed to "just check out" the inside. But only briefly. I was, after all, 5 months pregnant and didn't think it was even practical to take on selling our house, buying another one and moving halfway across town.

The owners showed us around, room by room. A large, spacious kitchen. French doors to a beautiful 3-season sunroom. A great size family room that opened up to the 2nd floor. A perfect master bedroom. A master bath with 2 sinks and a deal-sealing walk-in closet. Not to mention 2 more bedrooms just waiting to made into nurseries and a large finished walkout basement. All set on 2.47 acres of green grass with a tree lined back and side yard. It was much bigger than our first house. And MUCH more grass to cut. But before I knew it, we were negotiating the sale of their tractor and signing on the dotted line.

Our house in Louisville sold in 12 days. TWELVE DAYS! That was when the market was much much different. We were settling into our new house just before Christmas in 2006 - 4 months before I was due with our first child.

It needed our own special touches here and there, but for the most part, I really did like the house. We had many "big" plans to really make it our "dream house" - things like adding on a large front porch, changing the exterior from vinyl siding to the Hardi-plank kind, updating the kitchen, etc. In fact I made Ricky promise me those things would happen if we decided to move. However life kind of changes things sometimes. After Ethan was born, we became a little more practical as we saw our money fly away with diapers, wipes, and formula. And while I never want Aiden to feel like we had to sacrifice because of him, the truth is we kinda did. When he came into our lives, we immediately began to panic about money. I was going to have to quit my job in order to organize his medical needs like doctors appointments and twice-weekly therapies. I can remember Ricky telling me shortly after Aiden was born to prepare for the reality that we may need to sell our house. That was a scary thought.

Somehow we made it work. That "somehow" comes down to the fact that my husband works for an amazing company who not only recognizes and values the families that work there, but also provides can't-be-beat health insurance options, which we became quite familiar with very quickly. Most of all, Ricky has single-handedly worked his rear-end off in order to support our family. For both, I am very thankful.

But back to the house...

This house was the setting for my maternity photos (taken by my mom as I was on bedrest). It's the place that welcomed us home as a family for the very first time. It's where I learned to perfectly time my babies feedings so that I could sneak outside on the deck to drink a beer with my husband to the sound of bullfrogs croaking in the creek.

This house is where all of Ethan's milestones were carefully captured on video and jotted into his baby book. His first smile: May 16th, 1:42 pm. The first time he sat up on his own: July 22nd, 11:15 am. The carpet in this house hides spit-up, cookie crumbs and spilled milk, most of which has been removed from the surface with constant vacuuming and professional steam cleaning.

This is the house where I got to introduce Ethan to his brother for the very first time. It's where we laughed and cried a million times as we learned to accept our new roles as parents of a very special boy. It's where I made oodles of phone calls to doctors all while trying to capture Aiden's milestones on video at the same time (but often missing it by a nanosecond). You see, he not only has Apert Syndrome, he also has "2nd child syndrome" - which means half the amount of photos taken, half the number of videos of him cooing and making funny faces, half the spaces filled out in his baby book. :)

These walls have scratches, knicks and dings that can never be washed away. There's a little dent above the couch where a toy was "accidentally" (on purpose) thrown during a tantrum. This house has carefully planned out stars stenciled onto the top of Ethan's bedroom wall and stripes that I painstakingly painted by hand in Aiden's. And it's got a gentle slope in the backyard where Ethan experienced his very first sled ride with his daddy.

So many of our memories can be wrapped up and packed away into boxes when we move. These ones, however, cannot. And even though I had a hard time feeling settled here - always holding out for the day that we would pick up and move back to a neighborhood with sidewalks and block parties - somewhere along the line it became home.

We finally got around to doing some of the things we'd always talked about doing to this house to make it our own, only to stick a "For Sale" sign in the yard in hopes that it will help someone else want to make it theirs.

As we prepare to leave behind our first "home", I can't help but feel a little sentimental. While I'm really looking forward to this next chapter in our lives, moving to Texas so far away from family is going to be a huge adjustment. But, I think we've proven that we can manage change quite well.

Aiden's Surgery Photos

I spent some time organizing old photos and I decided to put together a slideshow of all of Aiden's surgery pictures. If you want to see them at your own pace, rather than in this collage, just click on the "View All Images" link below. To view captions for each picture, you can scroll over the photo during the collage (it will also stop the show until you move your cursor off the picture).


Pennies from Heaven

Recently, my family was presented with a donation check from the 2nd grade class at Our Lady of Perpetual Help Catholic School.

Each year, in preparation for their First Communion, the class does a service project - and this year they chose to raise money through a program they called "Pennies from Heaven". The money was to be collected over a period of a few months leading up to their First Communion. At the end of that time, the class decided to donate the money to a family with a child that had a medical condition. Aiden's name and information were given to the class by Ethan's preschool teacher, who has a 2nd grader in that class. And the class chose Aiden to receive the money!

I was so touched that Kathleen (Ethan's teacher) would think of us and submit Aiden's name, and also that the 2nd graders chose Aiden as the recipient. I knew I wanted to do something special to say "Thank You", so I thought what better way than to see if I could bring Aiden in to the class to do it in person. I made a few phone calls and arranged it just in time - as today was their last day of school!

When they chose Aiden, they also included handmade cards for him along with the check. They were the most precious things - made of construction paper and crayons - that said things like "We will pray for you every day", "Hope you can get better", and "You are very special and I love you".

When the class saw us as they came in from recess, a roomful of "Awwww"s broke out. Ethan was my helper and handed out the thank you notes we brought one by one. Aiden was surprisingly not shy like he usually is in front of a group of people. I introduced the boys and talked a little about Aiden. I thanked them for thinking of us and told them we were very excited to be able to meet them all. Then, I asked if anyone had any questions about Aiden - hands shot up like crazy.

It felt so good to be able to talk about Aiden to a roomful of impressionable 2nd graders. Their questions were very good ones including "How many surgeries has he had?", "When you go to Texas for his surgeries, where do you stay?", "Will he need more?" and "Did his brother have to have any surgery?" :) It was clear to me that the teachers had spent some time sharing things about what he's been through and showing them pictures prior to our visit. These kids were so composed and not at all afraid to be curious. They also knew compassion - you could hear it in their voices.

I was very impressed with these kids. I have to be honest, I was a little nervous about the experience, just because you never know what kids are going to say, especially when presented with something they know nothing about. But I was able to breathe a sigh of relief and realized then and there that Aiden will be just fine - even around other kids he meets in the future. I loved being able to raise awareness about his condition by talking about it at their level and also encouraging them to ask questions if they wanted to. I feel as if we are one step further in our journey. I'm so thankful that we were presented with this opportunity! The only thing I regret is not getting his picture taken with the class. I had my camera with me and forgot! :(

But once again, THANK YOU OLPH 2nd graders from the bottom of our hearts!

My Preschool Grad

Our first experience with preschool started out a little bumpy - I think it was just as big of an adjustment for me as it was for Ethan. But this year has turned out to be one of the best things for both of us. Ethan has grown so much. It is clear to me now that starting him in preschool this year, although he was only 2 and a half, was definitely a great decision.

We got through the first couple of weeks tears and all. And eventually he would wake up asking if it was "preschool day". He started to hang his own backpack and run off to start the day rather than clinging to me for dear life. Everyone said it would happen - but I guess I just assumed it might take a little longer than 2 weeks. I was both relieved and sad that he was quickly becoming more independent right before my eyes.

His teachers fell in love with him - I mean really, how can you not :) - which also made it easier for me to leave him each Tuesday and Thursday.

The way he started out, I wasn't so sure he was ready because of all his "hot-spots" for not listening or throwing or some other very age appropriate but not classroom appropriate behavior. I actually asked his teacher, Ms. Kathleen, one morning if I should pull him out of class. She gave me some great advice - she said "He is two, of course he will do those things, but leaving him in a structured class environment may actually help him learn". And she was right.

Ethan has matured so much throughout the school year. He listens better, he spends more time doing creative things like coloring and singing, he plays so much better with a group of kids. I really think this has been a positive experience.

Although I don't want him to grow up too fast! Seeing him graduate today made me tear up for a minute. I would like to imagine that I wasn't the only mom there who was envisioning his years flying by like flipping through a photo book...preschool, then kindergarten, then high school graduation. I wish somehow I could preserve the Ethan I know now - Ethan at 3 years old. The way his hands smell like crayons and his cheeks are still so kissable with the last few ounces of baby fat.

But then again, I'm so excited to know Ethan in the future. He's one spectacular kid and I am so very proud of him. There are big things in store for him - I just know it!

Ms. Kathleen and Ms. Jennifer deserve a lot of credit for putting their hearts into teaching our often crazy, very tempermental children. They are brave souls taking on a classroom full of 2 and 3 years olds! And getting them to learn in the process is quite an accomplishment! Thank you from the bottom of my heart!

Go Horsey Go!

My dad has recently turned one of his biggest hobbies into something more - he's purchased a couple race horses! He started out with Gandolph Finch, then he added Bail Baby Bail. Both horses ran at Keeneland a few weeks ago and we took the boys to see them up close and personal.

What an experience! Keeneland is such a beautiful track and it was even more perfect as it was an amazingly beautiful day as well. The boys had such a blast hanging out there - and it brought back many memories of "exploring" at Turfway Park with my brother and sister when we would be there with my dad growing up.

Gandolph Finch ran great, coming in 2nd in his race. We found out afterwards that someone had claimed him - meaning they purchased him just before he ran. That's what happens when you enter your horse in a claiming race. The kids were heartbroken because they had gotten to know Gandolph pretty well. They'd been up to Turfway a few times where he was stabled to feed him peppermints (who knew horses liked peppermints?) and pet him.

Bail Baby Bail ran 2nd also...2nd to last that is. But hopefully he'll make some improvements as time goes on. :)

After losing Gandolph Finch, my dad decided to go ahead and purchase another horse, Sir Mott. Both horses will race again in the next 2 weeks or so. It's been an exciting thing to share with my dad as a family!

A mother's heart

Half the time I use this blog to update everyone on the boys - how they're doing, the funny things they say, the trouble they're into that particular day/week. The other half I use this blog to vent. To get things off my chest. To unload my emotions so that I don't let them build up and boil over. So please, bear with me.

I think I'm in a really good place when it comes to raising my kids, specifically when it comes to raising a child who is "different". I will admit that having Aiden definitely threw me for a loop. I don't think any new mother ever really thinks about what they would do if they were surprised at birth with a complication, a rare sydnrome, or an illness. So when it happens, it hurts. It knocks you off your feet. And it makes you feel like you aren't sure how to stand back up.

But you see, I did.

I allowed myself to grieve. I selfishly worried how this would effect my life, the life that I had pictured so differently in my head. I educated myself and connected with others who knew what I was going through. I let friends and family help, and I let them stand back when they weren't sure what to do or say. I let guilt creep in more often than I care to admit - wondering if blame for Aiden's condition could somehow be pinpointed to something I did or did not do. I educated myself about his condition. I read books about children with special needs written by parents who honestly shared their hearts - the good parts and the dark parts. I began to understand how to process my feelings.

And despite all the times I was unhappy or fearful or scared - despite it all, my kids were loved unconditionally. That goes without saying.

I think it is an amazing thing to hear other mothers of kids with special needs say how wonderful their lives are. I couldn't agree more. Being a mother has made my life so rich and having a child with special needs has undoubtedly helped me become an even better version of myself. Through my children, I continue to learn and grow.

With that said, there is something so raw about raising children. Not only are you responsible for yourself, you are also the owner of another one's small little heart. I know I'm strong enough after all my years on this earth to handle my own heartaches. I am able to keep from coming unglued when sometimes I want to fall to pieces. I've proven that to myself. But when you start to see that it's this other little heart that you can't stop from hurting - stop from being hurt - that's what complicates things as a mother.

To say that we as parents have a great responsibility to teach our kids right from wrong is an understatement. I take that role very seriously. The hard part is knowing that you can't control other people's actions, words and how seriously they approach their role as a parent. When a little girl at the doctors office yesterday, about 7 years old, got in Aiden's face and said "Ewww - that baby is crazy", I immediately responded without skipping a beat, even though it was like a dagger to my heart. I said to her "No he is not, he's a happy little baby just like any other". She backed off a little, eyed him up and down then said again, "Well, his head is crazy". The mother (or maybe it was grandma or caregiver, not sure) along with the 3 other kids with them all heard this child's comment, yet did nothing. Didn't even acknowledge it. Instead, the 4 children continued to walk around my sweet 2 year old boy who thankfully was oblivious to their hurtful, misplaced words, checking him out as if he were some sort of exhibit on display.

I don't care if you are Mother Theresa, that is enough to make you want to do one or all of the following things: 1. Be nasty right back by saying something equally rude to the child, 2. Snatch your child up and remove him from the situation, 3. Burst into tears as your heart just breaks right in your chest.

I admit, I judged this child. And I judged her parent. I know kids often don't have filters. I know she may have been making an observation about the ways that Aiden looks different and she may not have had the sense (or vocabulary) to put it any other way. I know she didn't mean that he was "crazy" in the literal sense of the word. And I know I should have been able to have the right reaction, the right words to combat her negativity, the right actions to turn this situation into a positive learning experience. But I'm sorry, right then, in that moment, I hurt. And I will not make apologies for that.

Hurting for my child when he is too young to know is a burden I have. It is one that honestly, I wish I could continue when he is older. I would give anything to be able to take on his pain when comments like those hurt him in the future. But I know that I won't be able to do that. I must teach MY child right from wrong, to be accepting of differences (both his own and others) and to live his life to the fullest. And when he does get hurt from someone's mean-spirited remark, I will teach him that it's okay to feel upset, to be emotional. No matter how grand of a job I do raising my kids to be strong people, and how many times they brush things off and keep on going, there are bound to be times they are hurt by ignorance and superficial judgments. To think someone could ever be so strong and uneffected all the time is ridiculous. When those moments happen, I will let them cry, and sometimes, I will cry with them.

I will never judge another person's way of dealing with hurt - especially when it comes to their child. Some people can be positive and upbeat about it 100% of the time. Some get depressed and internalize their pain. Others even put up a good front at the time, then fall to pieces in private. There is no right or wrong way to handle these situations. I'm still learning too. Even now, I know there will be times when I have the right words at the exact moment I need them. Other times I may actually be too overwhelmed to speak at all. Either way, I know that I am doing my best and I will always find a way to move forward. For my kids.

In honor of this Mother's Day, I just want to say hats off to ALL moms.

Single moms.
Moms of 1 kid or 10 kids (or anywhere in between).
Moms who gave birth to their children.
Moms who lovingly adopted.
Moms of special needs kids.

And most of all, my mom. :)

Our own

Recently I've had the opportunity to meet some really amazing people, to read some really inspiring books, and to gain some very important perspective on life as I know it.

First of all, I got to meet Scott Guzzo. Scott is a 26-year-old young man who was born with Crane-Heiss syndrome. Being one of only 2 living people with this particular craniofacial condition, I'm sure you can understand just how special it was to meet him in person. To talk to him. Listen to him converse with us (although mostly I needed to defer to his parents to "interpret" what he was saying). Scott has multiple disabilities that keep him confined to a wheelchair and require feeding through a G-tube. But, at the same time, Scott is vivacious. He is capable. He is intelligent.

My friend Audrey and I spent an afternoon with Scott and his parents at their home. Over a lunch of homemade chicken salad and crunchy potato chips I was able to see first hand that life as I know it may be changed or may be "off course" from the life that had envisioned, but it certainly is no less amazing.

Paula, Scott's mom, is a parent advocate, an outspoken individual and a member on Children's Craniofacial Association's board. She is going to be the keynote speaker at Little Fire Big Heart and I am so looking forward to having her share her perspective with our audience. As craniofacial conditions go, I am, in fact, the rookie, she is the expert.

I've also recently completed two books (gasp! time to read? I know, right) that have offered very different views on grief, loss, and survival.

Josie's Story by Sorrel King is about a little girl who lost her life at the hands of the very capable, very respected staff at Johns Hopkins Hospital due to a medical error. A lethal dose of methadone was delivered during Josie's recovery from a bathtub accident at home. Sorrel tells this heartwrenching story about the loss of her daughter - unselfishly including insight into her darkest moments of guilt and "should-have-dones" - then transforms the piece and shines light on the good that ultimately happens as a result of the tragedy. She becomes an advocate, working tirelessly to support and invent ways to improve education in the medical field about the importance of parent/doctor communication and preventing medical errors.

The other book was called The Middle Place by Kelly Corrigan. It is a memoir written about the author's experience being diagnosed with (and surviving) breast cancer. She has a very poignant voice and as foreign as the world of cancer is to me it still resonated with me in so many ways. The shock of finding a lump paralelled the shock of learning about Aiden's diagnosis. The feelings of isolation. The resistance to accept, move forward, educate and fight. And then, the desire to do just that.

If there is one thing I've come to understand over the past few months, it is that unfortunately, everyone has their own battles they are fighting. Scott will never know a life of being able to run a race or savor a sliver of steak. Sorrel King will constantly grieve the loss of a child. She will think about the moments they should have shared. Kelly Corrigan will wonder why her body failed her. Fear the day that the cancer will creep back in and threaten her very existence.

I may not ever know their pains. I may not ever fully comprehend the journeys they have lived. Yet, at the same time, I feel a connection with each and every one of them.

The details, the story, the unique responsibility of raising a child with Apert Syndrome, the dealing, the surviving - that is our own. But the feelings of the heart, those are one in the same.