Hakuna Matata

A few years ago, Seth and I decided that we would like to take the boys to Walt Disney World. We wanted to go when they were old enough to remember, but young enough that they would experience the "magic" of it all. They turned 5 and 7 this year, so it seemed like a good time to go.

We started planning in early spring and with the help of our awesome Disney vacation planner, we put together our "dream vacation" for the fall. We also invited Seth's mom and stepdad to come along.

Our oldest son, Corbin, loves all things Disney and is also a Star Wars fan, so he was super excited, when he learned that we were going.

Emmett, on the other hand, couldn't care less about movies or cartoons, except for an occasional song that might capture his attention for a few seconds. However, he does love people, music, food, and playing in water, so I knew (or at least I had hoped) that he would enjoy Disney World, as well.

This trip was not only the boys' first Disney experience, but also their first flight. I was a little nervous about the plane ride because I didn't know how Emmett would handle the change in cabin pressure, but he did amazingly well. I had our carry on bag fully stocked with lots of snacks and drinks, which is always key when traveling with Emmett. He got a little restless, but did great overall. Corbin had his own carry on bag filled with lots of things to keep him busy and he really enjoyed flying. He was also a trouper in the airport. He helped by pushing Emmett's stroller, so that Seth and I could manage all of the luggage. He truly is a great big brother!

When we first started planning our trip, we learned that Disney has a disability program that helps minimize wait times for people with special needs and their families. We were also able to use Emmett's adaptive stroller as a wheelchair, which allowed him to stay in his stroller until it was time to transfer onto a ride. He could also stay in his stroller during shows, if he wanted to. Emmett falls and wears out easily, can't walk long distances, and doesn't understand the concept of waiting in line, so this made things much more manageable and less exhausting for everyone. I think that it is great that Disney recognizes how difficult it can be to have a loved one with special needs. Everyday life is challenging, both physically and emotionally, so I appreciate that they try to make visiting their theme parks as easy and enjoyable as possible. 

The Three Mouseketeers in our Mickey Mouse shirts.

When I started planning what shows and rides we would do, I realized that Emmett was one inch too short for many of the attractions. It wasn't the end of the world, but I was a little sad that he would miss out on some things. However, thanks to a recent growth spurt, he was just tall enough to do most of the rides that his brother did. There were a few rides that we decided were a little "too much" for him, even though he was tall enough, but he didn't seem to mind. He got to hang out with his nana, while we were on the rides. They checked out the souvenir shops and rumor has it that she may have shared a little ice cream with him too!

Corbin leading the
audience with a "roar!"

There are many things about our trip that stand out, but some of my favorites were during the Festival of the Lion King show. Corbin got to lead a section of the audience with a "roar" and a little later, a cast member invited both Corbin and Emmett to be a part of the show. When Seth told her that Emmett wouldn't be able to keep up, she said, "That's okay, I can push his stroller!" and she quickly took both boys into the center of the room to join the other kids. It was nice to see Emmett included and having such a good time. Every Disney employee was very accommodating and helpful. Another highlight was watching how the characters interacted with Emmett. They were very gentle and sweet with him and he seemed to like them too! Corbin and Emmett also loved the pool and water play area at our resort. They both love water, so I'm glad that it was warm enough to enjoy it for most of our trip. Corbin literally went down the water slide nonstop for almost an entire hour one evening!

Both boys during
the Lion King show

Emmett making a funny face,
but enjoying the pool area.

We started every day really early, so we were back at our resort by dinnertime, for most of our trip. However, we did decide to go to the Star Wars night show, which was the one night show that I knew Corbin and his dad would really like to see.  Although the weather was nearly perfect for most of our trip, that was the one night that it rained! We had a few showers earlier in the day, but that night it started pouring less than hour before the show. It was thankfully a warm night and we had our ponchos, so we stuck it out and the rain stopped just in time for the show to start. We were a little damp around the edges, but I'm glad that we stayed. We got a picture of us in our ponchos and kept joking about it being "the happiest place on Earth!"
Emmett must have thought that it truly was because he woke up in a good mood every morning (which is not normally the case at home) and he was slap happy and giggly every evening (which is way better than being grumpy). I'm not sure what he will remember about the trip or if he even understands what Walt Disney World is, but he definitely enjoyed himself, while we were there.
I can honestly say that the trip turned out better than I could have imagined. I knew that the boys would have fun, but I wasn't sure how either one of them would handle being on the go so much. I guess they are used to traveling all over creation for various appointments and therapies, so they adapted very well. It also helped that it wasn't miserably hot and that we were on a fairly relaxed schedule. The week was quite an adventure. We got to ride various modes of transportation, including: planes, buses, the monorail, a train, and even a ferry. Not to mention all of the shows and rides. We even spent our last day eating around "the world" at Epcot's Food and Wine Festival, which was a fun way to end the week.
We went into this trip not knowing what to expect. Our whole attitude was much like the song, "Hakuna Matata". No worries! We didn't have huge expectations. We just wanted to have a nice vacation and we definitely did.

Meeting Chewbacca

The whole crew at Epcot

Rafiki was super sweet
with Emmett!

Flexible Goals

Time flies! Emmett officially turned 5 a few weeks ago. I can't believe that it has been 5 years since this little man entered the world. I'm not sure why, but 5 seems so much older than 4! Emmett will always be my baby, but he's definitely not a baby anymore. His chubby little arms and legs are getting thinner and even though he is well below average in height, he is getting taller!

However, being 5 doesn't automatically mean that he is ready to do "the typical 5-year-old things". That can be discouraging at times, but I've learned to celebrate what he can do.

One of the Nine Essentials of the Anat Baniel Method is "Flexible Goals" and I have definitely learned that being flexible in my expectations for Emmett is really important. If I spent all of my days worrying that Emmett isn't meeting the goals that some standardized test says he should be, then I would be miserable!

Almost Emmett's entire life has been filled with therapists setting goals and assessing his progress. At least that is how traditional therapies work. I learned early on that it didn't really matter what those charts and assessments said. Progress is progress, no matter how small.
Emmett may not be learning his letters or how to cut with scissors, but he IS learning! He's learning that he can communicate with pictures, when he wants something. He's learning how to climb stairs, even if he has to hold someone's hand with every step. He's learning to be more independent by using a spoon, unfastening his shoes, and carrying his lunch box.

Having flexible goals doesn't mean that I don't push Emmett to try new things or to work hard, it just means that it's okay if he doesn't do things in the way or in the timing that many people might expect him to. It also allows me to truly enjoy every accomplishment!

Just last week, he reached for something with his non-dominant hand without prompting and he climbed up onto the seat of his daddy's lawn mower almost completely by himself. That may not seem like a big deal for most 5-year-olds, but if you know Emmett, that is a very big deal!
Having flexible goals not only helps me deal with the day-to-day challenges of raising Emmett, but it also helps in all areas of my life. Whether it's dealing with things not going as planned for dinner, having to take a detour, or having technical difficulties, none of these things are worth ruining my day over.
I'm sure that many of you reading this are parents and would agree that being a parent pretty much requires you to have flexible goals or you would go insane! Children are definitely unpredictable and can make life very interesting! There is a lot of truth to the phrase: "better to bend than to break" and following this advice will make for a much happier, less stressful life.
So, the next time your child chooses his own outfit and looks like he belongs in the circus, just smile and get on with your day. After all, no one has ever died from wearing mismatched clothes and maybe it will give you a chance to share your new found freedom with another struggling parent!

Emmett's shirt says, "Wake up, be awesome, repeat!"

Big boy, on the move!

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