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....