A few things I learned on the road...

*Play song, "Everyday is a Winding Road" with this post

Along this road trip, I experienced America in a whole new way, and though I'd been through most of these states before, I don't have a strong recollection of how it was way back when. So here's a few things I thought of as we drove for about 6 days total.

Toads are much worse than geckos to step on (and yes, I've experienced both). You could not avoid these little guys at night as they were everywhere. And as you can see, not very scared of human hands or feet (Steve didn't even have to try to catch this one, or the littler one before it)

When you hear about places being flooded on the news, don't think it actually hits until you drive through it. And granted we only saw a little bit of it. I already mentioned that we had to add hours to our driving time because of the overflow of the Missouri River, actually had to to be diverted all the way down to Kansas because all of the smaller bridges were closed. Passed by entire exits under water, it really was unreal. 

I failed to actually get a picture myself, found this one online, but you get the idea

If you can see a statue of the Louis and Clark exhibition (in-between the car and the man in the white shirt), as you can probably guess, it's not suppose to be under water! This picture I did take

I've been some humid places before- Mexico, San Antonio and Germany is actually pretty humid (though it doesn't get very hot there usually). But nothing compared to the humidity of the so called "Mid West".  And heat is nothing without humidity. I really feel for people that have to live in it everyday. We only visited during record breaking heat and humidity, but at least we got to leave. I will take 100 degrees in dry Utah any day! But tromping around sight-seeing in downtown St. Louis when it was 105 and 100% humidity was torture, and I hope I never have to do it again!

Places without mountains need water towers, and I kid you not (please don't make fun of me for this), I really didn't think they existed anymore, don't ask why, because I don't know, I'm really not that dumb! Most places had the same old boring ones- white or grey. 

Some had at least had the town's name on them, and then there were a few that went above and beyond

Sorry, this picture was taken when driving and the sun was going down

Always need to make sure to double check the camera settings when stopping for impromptu photos. Especially when it is way too bright to see the picture properly on the tiny screen.

This would be the Colt's stadium, not that you can really tell since Steve decided to stand in front of the Coca-Cola sign (probably for me:)

When driving through the mid west, expect to see soybeans and corn as far as the eye can see. That is, fields and fields of them both- corn, soybeans, corn, soybeans, corn, soybeans, corn, corn, oh no wait, soybeans.......

Expect to see these as well.....

A lot of these!

Expect to see cool signs that you want to send home to your family. Sorry Lex, my camera phone was a little less than adequate to capture "Holt Road" with it's 5 second delay. But I did catch this one, and all the way back I searched for the billboard that said something along the lines of, "If you are forgetting words, who loved ones are, and where you live.... it may be a sign that there's something wrong" Well, I would hope that anyone I knew that that was happening to would probably be smart enough to know that there's is in fact something wrong :) *didn't ever find it though :(

It seems there really is no way to get away from road construction, it really is everywhere! Though I still think that Utah county takes the cake right now, with probably over 50% of it's roads being worked on right now (most of those being main roads too). But I really think that every state needs signs like this, then maybe, just maybe it would encourage people to actually slow down in work zones. Because apparently the doubled ticket fine isn't enough.

Some even had an added "14 years in jail"

Nothing compares to a storm in the mid west! We were a little worried we might hit a tornado even when we were going through Illinois the second time.... luckily the worst was, sheets of rain that came down through 3 states, and I mean like pouring (cats and dogs comes to mind), wicked strong, fast wind and lightning touching down on the ground a mere 25 feet from where we were driving (out in a corn field of course). But all in all, it really made for some amazing pictures!

Again, this one wasn't the best picture, but I had to try and capture the rainbow since I haven't seen one in a really long time!

When you see a town in Wyoming and think, "this is the first town I've seen in awhile, but we still have more than half a tank and everyone is asleep, so I'll just get gas at the next one I see." Well, you should have stopped. That way, you wouldn't have to literally coast into the town that was over 150 miles away and cost 30 cents more a gallon.... lesson learned and hopefully remembered there!

And just when it seems like you will never get home because this is all you see- never ending road!

Then you remember that this all would have been a lot worse and incredibly more boring without these two :)

Em and Sully (from Monster's Inc. in case you didn't know)

Thanks hon for doing most of the driving and enduring all the relentless stops and endless complaints from your significant other ;)

Like going home

*Play song, "This is Home" with this post

Feels weird, that I'm actually wanting to get on with this post now... thanks to having to be out of my house in about 3 short weeks, means time's a crunchin' ; P

But that's a story that will have to be told in another post.... that may be 3 weeks late!

Anyway, on with it! It's amazing how much I feel when I reflect back on the meaning of our trip. The reason we drove across a total of 7 states for. (that's Wyoming, Nebraska, Kansas, Missouri, Illinois, Indiana, and Iowa!.... and I guess 8 with Utah in there, which should count I guess!) There is just so much that I know I will not be able to portray with words, but I know the highest honor I can give it, is... it's like going home. It really is. Even among some 300+ strangers that somehow have more of a feeling of family. No one understands better everything you've been through since your life changed like these people. No one understands your child better, no one loves your child more. And it's the same for us, I would do anything for these families, just like my own. I love their kids, and would fight for their kids right alongside their parents. 

Nothing is stronger than the feeling you get when you share in the breakout sessions (meetings we have with other parents/guardians of children with the same syndromes, see this page for a breakdown of the syndromes), nothing more emotional... finally a sense of not feeling alone. 

It is going home. And how funny that it doesn't matter where that home is. Already we've been to San Antonio, Las Vegas and now Indianapolis. Next will be San Antonio again, Georgia, New York City and maybe... just maybe somewhere in Utah ;) (more on that later too). We hope to make it to all of these, but realistically we probably won't.... it really is a lot of money to go..... so worth it. But, still things come up.

No where else will I hear anyone dub my child as, "Famous Em" (true story, and a lot more than once too!) Everyone wanted their picture with "Famous Em", everyone wanted to meet her... I think we can put most of the blame on me for that. For my relentless Facebook posts, and blog updates thrown in everyone's face....

But I'd like to think some of the blame can fall on him

That is the amazing, the one and only Rick Guidotti (read more about this amazing guy on this post)

 Love when he shows you what he got, "you have to see this!" And I have to admit that every shot is "Amazing!" and in a world where that word is so over used, he can truly give it meaning

  Emarie is beautiful, and thanks to Rick, the whole world will soon know it (see the preview of the documentary about to take the world by storm here)

She was showered with gifts...... so much so, that people kept asking if it was her birthday!

The green basket full of goodies given to her by the Wrights in St. Louis, the book from the Bentivengas at the conference. All the cute fall clothes from the Hunts, and a shirt with just her character on it from Sarah Hunt. And the music player (which she can't get enough of) from the Wolfs :) She was thoroughly spoiled!

We were especially excited about this gift! A hand painted picture of Em's character for her bedroom from none other than the artist, Sarah Hunt!

She is SOo loved here, that it's hard to think if there's going to be a time we can't bring her.... she can be herself, which I have to say is worth everything!! This is a girl that it took 3 months just to laugh for the first time in her preschool class, and who still won't talk around anyone but Steve or me. Well, the first day she was in childcare, I went in to check on her, and she was talking with one of the volunteers.... really talking! I had to ask if she'd been doing it the whole time and they looked at me like I was crazy to even wonder! She felt as comfortable with those people she'd never met, kids she'd never been around as she is at home! What does that tell you?!

And we're not the only ones either, I overheard another mom exclaiming how her son could be himself here and no one was going to stare or look because they all see it as "the norm". I love it all!

Every year brings new insights to the research, but perhaps the biggest for us was learning that they are close to being able to state that 18q- syndrome is not an intellectually-disabled syndrome! Yeah, you read right! Sure, they are delayed, but most catch up and have IQ's in the normal range, and that's amazing! And no, it can't be true for everyone, but still that is a hell of an amazing find! 

No one will triumph more with you over each of your child's accomplishments and milestones than your chromosome 18 family. Because rolling over, sitting, crawling, walking, talking, toilet training... even something that not many would think of like, eating and breathing at night on their own! May not be the same to some people... and especially when they come late. And I know that all parents see some of these as a big deal with their own kids.... but it's like moving mountains to us. When someone has told us that our kid may never do some of these things (and this mom is one of those), you have no idea how much it means when she proves them wrong. And I love all those moms out there that know.

And even sitting in those breakout sessions and thinking that maybe your child is behind because a lot of the ones her age are doing more. But do you know what I realized? That I have all the time in the world for her to learn everything she's supposed to. And what is important is that when I look at her, she looks back. She knows how to give the best hugs and show her love. She tells me she loves me, and most of the time she doesn't need to say it, because I know. She laughs at things that are funny, she is the sunshine on a dark day. She is my strength that gets me through every day. People probably wonder how hard our lives are, but I think how much harder my life would be without her. I don't know all that she will do or accomplish in her life, but I have no doubt that she is going to be determined and she will do anything she believes she can do. And that's all I can hope for. 


Thanks for the great family reunion. You all are amazing and I look forward to seeing each and every one of you again and again. And of course, adding more to our family.

These next few pictures are courtesy of Rick Guidotti

The "Q" family in attendance 

So, until the next family reunion.... 

What we've all been waiting for!

*Play song, Good Life with this post

That title is fitting in more ways then one

1. We have been waiting on this conference for over a year since we didn't attend last year's in Tulsa

2. Because I've been waiting a long time to actually get the post written

I know I elaborated a little on a previous post that I was having a hard time getting this out. But, I don't think I hit on the true, main reason- I'm sad to say goodbye. And essentially by writing this out, it really makes it final and over. Even though it's been over for over a week, it's still really hard to come to terms with. I think there was more anticipation going to this conference then any of the others we've been too. Don't get me wrong, I will tell people time and time again, that going to the San Antonio conference in 2008 (when Emarie was only 6 months old) literally saved us. Before that, we'd never met anyone with the same condition or similar to our daughter's. We had no idea what to do in terms of care and therapies for her, other than what the doctors recommended, but let's face it they were up front with us in telling us they had no idea what they were dealing with. So, the anticipation was different, and really we had no idea what to expect. 

And Las Vegas was more the next year (and BTW, if you clicked on Las Vegas, I'd like to think I've come a long way in blogging since then!).... but nothing could have compared to the build up of going this year. I don't know if it's because of the wait already mentioned, which probably was part of it. But I have a greater suspicion it was due to all the people we were about to see. Not only families that we missed and hadn't seen in 2 years, but also new families that I'd been connecting with online. Some I'd been talking to for a year or more. 

Families like, the Wolf's

 Candice, Macy, Em and me

 A better look at the gorgeous Macy (only 1 month old!) Definitely one of the highlights was getting to hold this cute girl!

Joel and Graham with Em and me in the pool

I have been talking with Candice since shortly after her son Graham was diagnosed about a year and a half ago! Emarie is only 2 months older than Graham and he has been a BIG inspiration to us as he is doing so much!! It was such a highlight to finally meet this family in person! You can see the Wolf family blog here.

And the Price family (well only part of them were at the conference)

Em and me with Kennedy and Erica. Kennedy also has a twin brother and 2 older siblings along with her dad at home. We haven't been talking to the Price family quite as long, but it was just as much of a highlight to meet them as well :) You can see the Price family blog here.

And the Borucki family

Sadly it looks like I only got pictures of Jonah and Farrah, but they are a gorgeous family that I hope I get to see again!

 Their newest addition, Farrah at 3 months old

And that's Graham, Jonah and Em

As well as the Stoddards and Nicholsons

 Jenna and Kim

Tanis and Aiden

There were also a few families that I actually had met at previous conferences, but didn't get to know well until after the conferences, so of course it was amazing to see them when I felt like I knew them better!

Part of the Griffin family

Shelby and Alex (you can see the Griffin family blog here)

Part of the Gallardo family

Stacey and Amelia with Em and me

The Pugh family

Brayden and Salina (the last conference these guys attended was San Antonio, and you can imagine Brayden was only a baby like Em, so it has been amazing to see them again... though we've been keeping up online)

And the Downs/Darnell family

Em and me with the famous Lillian (mentioned her mom Camilla and her amazing mission in a previous post)

And of course, there's always the new families that you meet for the first time at the conference!

Was especially excited about this one because they live in Utah!

The Harper family

 Megan and Angie (don't ask about the face I'm making!)

Isn't Megan a doll?? So reminds me of Em at that age (she's 20 months)! Can't wait to get to know this family better! Should be easy since we go to a lot of the same doctors ;)

Then there was Maria Lin and her son Jacob

We went to dinner with The Wolf's and Maria on the second night

That's me, Maria, Candice & Macy, Joel & Graham, and Steve & Emarie (and BTW, it was quite funny witnessing the waitress trying to capture this shot!)

That's Maria on the right with Candice and me (See Maria's blog here)

And her sweet Jacob

This is him sound asleep minutes before they were about to leave for home in NYC

The Hinden family

Justin, Olivia and their adorable Owen! Ok, so I did know this family a little before the conference from good ole facebook... but only like literally a week or two before! So that's why I'm including them here!

And the Horne family (well only part of them again!)

That's Natalie and her adorable Logan (don't think they know I got this picture). Sadly I didn't get to know this family quite as well as I would have liked, but maybe they'll become one I get to know better after, since I just found her on facebook :)

And the Posher family (again, only have a picture of their kid, guess you know the ones I'm drawn to ;)

William is a cutie and around the same age as Em (as a lot of the q boy were this year). He has great parents that I'm also hoping to get to know better!

And then all the good ole families we've known since the first conference

 One of the craziest moms I know! The great Shelly Hunt! She and her daughter Sarah showered Em with attention and gifts this year, they are awesome! Sarah is also the one who designed the amazing conference shirt for this year, featuring Em! Mentioned in this post

Had to steal this picture from Stacey since I failed to take my camera. That's a few of the great mom's at the annual Ladies Night Out (L to R: Kim and her mom, Lorrie, Maria, Susan, me, Shelby, Stacey and Natalie) 

Thanks to all of you for making it such a great year! And until next year, hopefully we'll see all of you again, and meet more and more in each year to come! I can't say that I feel more comfortable around any other huge group like this! There was nearly 300 families in attendance this year!

And thanks for the responses to that previous post, and I know you're there... reading, just not always responding. It's just the idea of putting so much into something that no has anything to say about, but I know it still gets read :) And I thank and appreciate every single one of you for that!

And yes, there's going to have to be one more post ;) Gotta get the thoughts and feelings of all that the conference was, not just the amazing people, but as you can see they are a big part!!

My motivation

*Play song, Stolen with this post

I don't know why it is that I've had a hard time finding the right motivation to write the posts on the conference. I guess there could be a number of things in factor- lack of comments in recent posts, which leads me to believe in a lack of reading (may not be true, but I'm sure other bloggers understand). Maybe the fact that it is was so momentous that I'm always afraid I will betray the magic. And coming back home to the "normal" which is not great, offers on our house that are just a sickening joke knowing what we paid when we bought it. Sickness, tiredness, and jealousy are all filthy factors as well.... but still I needed to do it. 

So, I decided to come up with a compromise... a buffer post if you will. In hopes that it would help get the ball rolling, and I think it may just do the trick.

Here are a few pictures of some of the amazing children and families that have "Stolen my Heart" not just this year, but over the course of the last 3+ years

 John and Julia- They are among some of the first affected individuals we met upon arrival at our first conference... In fact, I can say with certainty that Julia was the very first person we spoke with at the conference. They have both loved on my girl endlessly for the past 3 years.

 Julia worked in the childcare room Em was assigned too, and often was seen giving her hugs

This is the very first picture we have from this year's conference. John is one of the sweetest human beings on the planet! He has sent Emarie birthday cards every year of her life, and Christmas cards to our family. We feel very privileged that he considers us friends.

John, Kellan and Michelle

 Amelia

 Megan (who we were very happy to meet since they are from Utah) and Kennedy

 Graham, his mom and I have been talking for over a year and we're so glad we finally got our kids together (he and Em are only 2 months apart)

 Jacob

 Jenna with her mom Kim

 Aiden with his mom Tanis (doesn't he have the most fantastic head of hair?!)

 Owen with his dad Justin

 Jessica, she and her mom Sue were also among some of the first people we met in SA 3 years ago

 Suzy with her dad Steve

 Lillian with her mom Camilla, who is the amazing woman behind The DIG organization (check it out when you get a chance!)

 Nova Mae with her wonderful grandmother

 Brayden and his mom Salina

 Emily and Liz, we owe a lot to her!

 Alex with his mom Shelby, one of my favorite blogging moms!

 Jimmy, cast and all that we got to sign, bad hockey accident ;)

Princess Talia

A shot of the 18q- group 3-5 year olds at the conference- yup, all those boys and Em ;)

There's: William, Jacob, Graham, Jonah and my girl

I've watched many dances in my lifetime, but nothing made my heart swell more than this one

I wouldn't know any of them if it weren't for the main stealer of my heart

And it wouldn't be possible for any of us if it weren't for this amazing human being!

Dr. Jannine Cody

Fueled by the birth of her own daughter

The amazing Elizabeth Cody

Thanks for all you have done for me, my family and my heart! (even those that were too quick for my camera ;) And of course those of you that weren't at the conference!