Em's 4/5 and No Hospitalization Celebration Event!

As you can see, I am slowly getting caught up on the blog.... this one backdated to June *YIKES* But bear with me, since it's not easy moving while very pregnant, and yes I am still battling the inevitable morning sickness.... but more like all day sickness in my case! And contracting off and on as well.... but life as we know it. And yes, I will still get to all the details of our move later on once I'm caught up with everything else that's still behind! 

So moving on.... 

Since Em didn't have a birthday party for her fourth birthday because of her second hip surgery, and we're not sure about giving her one this year for her fifth because we'll have a brand new baby and we're not sure about all the germs with RSV season, plus we'll still be a little chaotic with adjusting to 2, but Oh how wonderful all at the same time! We also realized we had never done anything to celebrate her going a year without an unplanned hospital stay, we figured we better do something BIG for it all! 

I have always been jealous of the mom's whose kids can have nice summer, outside parties! So if we celebrate on Em's half birthday, which is June 24, there you have it! I really wanted to reserve a pavilion at a park and get a big inflatable water slide and have a water party. But the park idea was out because they needed more notice and permits to get a bounce house rental. So Steve's parents offered their backyard, but that would limit the size we could get, so when contacting businesses about their rentals... none of them knew the dimensions of any of their rentals! Except one place that said they had them set up in their on site facility and I could come look at them anytime.... which is what we did when Steve got off work that day, and lo and behold, we just decided it would be best to pay the same amount for one rental and instead rent out their facility with ALL of their rentals! 

Turned out to be a BIG hit and I think all the kids and even adults that came had a lot of fun! We had two Chromosome 18 families join us.... the Harpers came all the way from Logan! And the Howe's came from Kaysville! We are so grateful that they all traveled so far to be part of this celebration, especially since it was in their honor as well! You see, we asked that instead of people bringing presents (since she really doesn't need anything these days), that people donate rather what they would have spent on a present, and that money was going straight to the Chromosome 18 Registry and Research Society. We also included a little about a fellow Chromosome 18 mom Mandi Fisher who recently passed away unexpectedly from an aortic aneurysm, leaving behind her husband Jason and 2 (almost 3) year old daughter Kenzie who has that same crazy 18q- like Emarie. We thought it would be nice to honor her with our celebration as well and have the donations be as much for her as for Em since that is how her family wanted her honored as well. 

Of course Em had a few presents, because grandparents got to do both! But we told them the only thing they could get her was more furniture for her dollhouse, which is what you'll see her opening. Em was very good to put donations in the box herself and we were able to send $250 to the office later! Not bad!! 

Anyway, on with the good part.... the videos and pictures, which of course will be shown in slideshow form.... what else ;) 

Enjoy! 

Remember, 720 p and full screen for optimum viewing! 

And here's a picture of Em placing her donation checks in the mail at the post office, so cute! 

2nd Annual Deak's Run for Hope *Warning, GUILT TRIP*

*Play song, "Help Me" with this post

This year wasn't so great on our end as last year was! None of us ran this year, with me on low-impact with my pregnancy and Steve was getting over a sinus infection.... so the one and only person that came from our family ;) (my dad) didn't run either.... but at least we all paid right?! 

Anyway, this will lead me to why I am sharing only these two photos (rest are in the slideshow below).... this was our posse'

Thanks again for coming Dad! 

And this was Megan's posse' (another 18q- girl in Utah who we first introduced you to here and then again here)

And by the way, they all came from Logan or further.... some even from Wyoming!! 

Now, come on!! I am sure we can do just as well as them with who comes for Em! I should mention that both our moms signed up as "Spirit Runners" since neither of them could make it.... which is JUST fine too by the way! 

So please, please, pretty PLEASE if we could have a much better turn-out next year, I will not feel like such a failure! It is a super easy walk/run.... 5k is only about 3 miles, and it's just fine to walk! Kaysville is really not that far, with as early as we left and it being a Saturday, it took us less than 45 minutes to get there. It will be well worth your while.... and if I can't convince you.... maybe this will

Props to Steve on all the great photos and video.... and for putting this great slideshow together! 

Looking forward to seeing more of you there next year! And YES, I mean YOU! 

The Missing Piece

*Play song, "Elsewhere" with this post

I sometimes wonder, though I try not to, and it is not that often, but I can not help it... and I think most mothers of a child with a chromosome abnormality could identify.......  But, I wonder what life might be like for my sweet little girl if she had a complete pair of chromosome 18. What if that vital little piece of this most complex puzzle had never gone MIA...

I see her running and climbing and jumping... I see her in the dance class I always envisioned, twirling around on her perfect little feet.

I see her perfectly understanding everything around her and not having to struggle for 90% of what she's use to. 

I see her conversing as an almost 4 year old should, with us, her friends and anyone; and everyone understanding her perfectly, as she deserves.

I see her never being familiarized with the inside of a hospital room, or an ambulance. I see her not having scars from multiple surgeries and never having to endure as much pain as her body really never should have. 


I see her never feeling left out of anything, or forgotten, or ignored because she does not have a complete pair.

But, as I said that these moments are not very often, they also don't last long, because it doesn't take long before I remember that this is the way that she was sent to me, this is who she is. And really when it comes down to it, I wouldn't change anything about her, because simply put, 

she

is 

amazing

And I and everyone who loves her are better people simply because she exists. I only wish she didn't have to suffer so much... that I didn't have to worry about things like her having an allergic reaction simply from just walking into a room.

So, I admit something that is hard for me to admit, but I know she is my girl, and she is just the way she is supposed to be...

crooked
 feet
 and all.

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!!

What goes into an epic day?

Play song, "Comes and Goes (in Waves)" with this post

Perfect weather.... check!

Perfect company..... check and check!

These two girls are assistants from the preschool that took the time and money to come and support us at this wonderful event!

One amazingly, inspirational boy.... 

and his wonderfully, equally inspiring family.... check and check again!

That's Jenny and Blair with their children Abby and Deakon

Add in a few emotional, discreet wiping of single tears rolling on cheeks, a little bit of laughter, connections that go deeper than can ever be described by me. And of course, one amazingly worth-while (well.... worth- time, effort... you name it!) cause. 

Helping these kids with so much, but to name one.... walking

This was also amazing in the fact that this is the first time they've ever "walked" together. I know I couldn't fight back the tears as the first thing Em didn't hesitate in doing once we placed her in her walker, was to take a couple steps and crash right into Deak. Flirting maybe? ;)

And that's what makes for one Epic Day!

Last I heard from Jenny was that the prospective total was already well over $6,000, which is just unbelievable!! Way to go Howe family!

A few more highlights:

yeah, we found it pretty funny that I ended up as number one and Steve number 2...

So at least we had something on us that said we were number 1 and 2, even though we weren't even close!

Deak being shy and as always Emarie couldn't tear her eyes away from him!

 The Before the run shot....

......

After

Yeah, let it be known that it was the wind doing that loveliness to our hair ;)

The sweet girls Desiree and Brittany crossing the finish line.... dead last.... haha, just kidding, there were a few after them ;) But to be fair, they made a few unscheduled stops ;)

 The amazing mom behind it all in action!

 The girl that makes me so proud, worked so hard and took a lot of steps that day! (not sure how many, but somewhere in the ballpark of 30 or so, which is great for only about a half hour in the thing!)

 Em being a scene stealer when everyone was trying to get a picture of the Howe's

Figured we may as well try and throw in a group shot ;)

All in all, one great day! Well, allergies aside!

To see Jenny's thoughts on the day, go here