A Dream Come True

Something happened last weekend that I have thought about often, but I never imagined that it would happen this soon. I actually didn't tell too many people about it because I was afraid that plans would fall through. Most of you probably know that when Emmett was diagnosed with Xia-Gibbs Syndrome in November 2014, we were told that he was only the 5th known case in the world. It was a very strange feeling having a child with such a rare diagnosis. Over the past 2 1/2 years, several more children have been diagnosed and there are now around 40 known cases. It has been amazing connecting with many of these families online, even though we are spread out all over the world.
A few months ago, our Facebook group decided that it was time for the "Xia-Gibbs families" to meet face-to-face. We even coordinated with the doctors that discovered the gene mutation, so that they could meet with the families, as well. The first ever Xia-Gibbs Syndrome Symposium finally happened last weekend in Houston, Texas and even though it was a 16 hour drive, it was totally worth it!
The moment we arrived at the hotel, I began to see familiar faces of people that I felt like I already knew. I recognized their children and I knew most of them by name. I was hugging people that I had never even met and I didn't think a thing about it! These people totally "get it". Never once did I have to explain or apologize for Emmett. I didn't have to explain why he wasn't talking or why he had to have his food chopped up in tiny pieces. I didn't have to tell them why he walks a little differently or why he falls easily. I didn't have to hold him back, if he wanted to grab someone's hand or if he got in their personal space. I didn't have to try to keep him quiet, if he started making one of his repetitive sounds. Each and every person had an understanding that I had never fully experienced before.
Don't get me wrong, we have lots of wonderful people in our lives who love Emmett unconditionally, but there is nothing quite like meeting people who have children with the same diagnosis. Almost every parent I met told me that Emmett reminded them of their child in some way: his looks, his walk, his tight hugs, and the way he claps his hands (just to name a few).
I felt the same way about the other kids. I could see a bit of Emmett in all of them and sharing stories with their parents made it very clear that our lives have many parallels.
One of the best things about the children with Xia-Gibbs Syndrome is their love for people. Many of them don't know a stranger and will try to make friends with anyone. Others are a little less social, but are very attached to certain people in their lives and find comfort being close to them. They are some of the most loving, pure hearted people you will ever meet and I saw this over and over again. As parents, we got to enjoy not only the love of our own children, but the love of the other children, as well. There were also several siblings and caregivers in attendance and they were also very kind and understanding.
Our first evening was spent by the pool enjoying a nice meal and getting acquainted. The next day was the official meeting with several doctors from Baylor College of Medicine, including Dr. Fan Xia and Dr. Richard Gibbs. The first thing we learned was that most of us had been pronouncing Xia completely wrong, which was kind of funny! Come to find out, it is pronounced: "Sha" not "Zee-uh". (In case you were wondering!) They also shared many things about genetics and the mutation, answered questions, and discussed some of the research they are working on. All of the doctors and researchers were very sincere and explained things in such a way that we could understand. They also spent some time with our kids and tried to learn more about them as people and not just subjects of a case study. After lunch, the parents had some time to share our experiences, discuss some concerns, and shed a few tears. The meeting ended just before dinner time and the weekend continued with more time just hanging out and getting to know everyone better.
Another great thing about the weekend was watching friendships form between the siblings that were able to attend. Emmett's big brother, Corbin, made a new friend who may very well be a friend for life. They spent the entire weekend playing, swimming, and talking about Minecraft and Pokemon! (which I know nothing about, so I'm sure Corbin enjoyed talking to someone who does) They are pretty young right now, but as they grow older, it will be nice to have a friend who truly understands what it is like having a sibling with Xia-Gibbs Syndrome.
As I sit here typing, I still can't believe that this finally happened. Although not everyone was able to make it this time, it was incredible getting to know so many people and I hope to meet many more in the future. I truly feel like we are a family. No matter how big our group gets, having a community of people who understand what we are going through is truly priceless. Our journey with Emmett is not always an easy one, but it's nice to know that we are not alone. I am so thankful for our "Xia-Gibbs Family" and can't imagine this journey without them.

Finally in Houston and out of the car!

Enjoying the sunshine!

Geography lesson for breakfast!

One of Emmett's new friends

Corbin with his new buddy

Playin' in the pool