No Words, Just Love

I’m sure that many of you reading this have never met Emmett. However, if you ever do, don’t be surprised if he walks up to you and immediately grabs you by the hand (or by one finger, which he often does). Emmett has no stranger anxiety whatsoever! He loves people and I can honestly say that most people who meet him, love him too.

Of course, I would never turn him loose in a room full of strangers, but I do try to let him choose who he approaches, within reason.

Every week at church, Emmett loves to look out the glass doors and wait for people to come in. He has become the unofficial greeter. One advantage of a small church is that almost everyone knows him and they fully anticipate him to walk up and grab them by the hand. Even when we have visitors at church, he is completely comfortable walking over to them. He will sometimes even sit next to them or back up to them, to show them that he wants to sit on their lap. Thankfully, most people are very accepting of him and welcome the extra attention.

If we are around someone new, I always explain that he doesn’t talk, but that he loves people and I apologize if he seems to be invading their personal space. Something about Emmett must just soften people’s hearts because I can only think of a few times that he seemed to make someone uncomfortable.
He has even started making friends out in the community. This summer, his therapist took him to the park and one little boy was very interested in why Emmett wasn't talking and was carrying around a book with pictures in it. The boy's nanny explained to him that some people speak in different languages and that Emmett "speaks" by using pictures. It wasn't long before a new friendship was formed. Emmett would show his new friend where he wanted to go on the playground, using his pictures, and they would both go where Emmett requested. They were able to meet up several times over the summer and had a great time together.

Although I like to let Emmett meet people, there are some situations where I definitely keep him within arms reach. I never turn him loose in a doctor’s office because of all of the germs. I also give him limited freedom in restaurants because he loves food and wouldn’t hesitate to grab something off of a stranger’s plate. His brother has learned that the hard way. Emmett has been known to steal marshmallows right out of his brother’s hot chocolate!

As much as I love how much Emmett loves people, I know that as he gets older, he will have to be taught more about personal space. Not only because of social boundaries, but also for his own safety. He is so trusting and would literally walk away with anyone willing to take him. This love for people is actually very common with most people diagnosed with Xia-Gibbs Syndrome, which is both wonderful and scary at the same time.

In some ways, I wish we could all be a little more like Emmett. He doesn’t make a snap judgement based on someone’s appearance and he loves unconditionally. Even without saying a single word, he makes friends everywhere he goes. I’m not sure what Emmett’s future holds, but I do know that wherever he goes, he will definitely make new friends.

No words, just love.

Emmett was a little confused, when this knight statue wouldn't hold his hand. 

Waiting to greet everyone at church.

Sharing the love with some of his friends at church.

Trying to decide what he wants to do at the park.

Don't Be Afraid To Fall

Due to his low muscle tone, it took Emmett longer to start walking than most children. I remember hoping and praying that he would walk independently someday and I was ecstatic when he did. What I didn't anticipate was how easily he would lose his balance and fall. Emmett definitely doesn't fall as much as he used to, but he still has his moments. Especially when he is tired or trying to go too fast.
A few months ago, he had one of "those moments". We were getting ready to leave church, when he pulled away from someone, lost his balance, and hit his head on the edge of a pew. He got a pretty good gash in the side of his head, so we knew right away that he needed to go to the emergency room.
I've never been one to panic, but I know that having Emmett has made me roll with the punches even more. Nothing comes easily for him and he's had so many tests and procedures that this trip to the emergency room was just one more bump on this roller coaster that we call life. He actually had a similar injury, 2 1/2 years ago, right after he had started walking.
He's such a good patient that the doctors and nurses are always impressed at how calm he normally is. While we were waiting for the numbing agent to kick in, he was standing at the doorway just checking everything out and watching people in the hallway. They had to put three staples in his head and were prepared to have to pin him down, but he didn't even flinch. We also requested a CT scan, which he was equally calm for. He just kind of looked up at the machine with an expression like, "This is new, I wonder why I'm in here?"
The CT came back normal and although Emmett will likely have a scar, it will hardly be noticed because it is under his hair.
I'd like to think that this will be our last emergency room run, which would be great, but not likely. No matter how closely we watch him, he is bound to fall and hurt himself sometimes.
A few days after his fall, Chris Rice's song, "Untitled Hymn (Come to Jesus)" came on the radio. Every time I hear this verse, I think of Emmett, and I especially do now:

"And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall, so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!"

All of us fall sometimes. Whether we literally fall, make a poor choice, or just go through rough times, if we fall on Jesus, He will see us through. There may even be a scar left behind, but that's just a reminder that we survived and are a little bit stronger or wiser from whatever we have been through.
Emmett may not understand this concept, but I know that having him has definitely made me stronger and has made me rely on my faith even more.
Life has its ups and downs and we all make mistakes, but knowing that we don't have to go through it alone, makes the hard stuff a little easier. Don't be afraid to fall.

This handsome guy doesn't let a little fall keep him down for long!

Movin' Right Along

Emmett has seen more doctors, therapists, and specialists in the last 5 years, than I have in my entire life! I can safely say that I didn't even realize how many different professions existed. Emmett has had more blood draws, sedations, tests, fittings, and procedures, than the rest of our family has combined and he isn't even "medically complex", compared to many children.

We are truly blessed that Emmett loves people and doesn't mind going to appointments. Blood draws barely phase him and he's actually disappointed when it's not his turn to go back to a patient or therapy room. The past few months have been filled with lots of appointments, but thankfully, most of them were just routine visits to check on his progress.

A few months ago, Emmett had his annual swallow study to see if he was ready to transition to thin liquids. Emmett actually enjoys swallow studies and doesn't mind sitting in a special chair, wearing a stylish lead apron, and drinking thickened apple juice with barium in it. He also enjoys the barium cookies. Sounds yummy, right? He's happy to do anything for a snack!

For the first time ever, we were told that Emmett could try regular liquids without thickening them and that he doesn't need to come back for any more swallow studies, as long as he continues to do well. He started on thin liquids just before Christmas and we were pleasantly surprised at how well he transitioned to them. Ever since he stopped nursing, we have had to thicken everything that he drinks, which meant that he couldn't even have water without adding something to it or he was at risk for aspirating. We almost always used fruit purées or yogurt to thicken his drinks, but it was still just "one more thing" that we had to pack. So, it has been a nice change for all of us.

Emmett has actually had a lot of changes, over the past several months. Here are some of the highlights: He got a new set of tubes in his ears, which has helped tremendously in regards to his health. He transitioned from full ankle orthotics to just shoe inserts, which he is doing great with. He is communicating more and more with pictures. He has learned how to go up and down stairs and only needs a little help. He was able to transition back to a regular diet, including gluten and dairy, which we are all very happy about. Emmett has always been a bit on the small side, but he was actually on the growth chart for his age, at his last check up. It may have only been the 5th percentile, but I'll take it!

Although he is making great progress, Emmett still has his set backs and keeps us on our toes. The day before he got new tubes in his ears, I had to take him for an emergency dentist appointment because he lost his balance and chipped a tooth! It required a little filing and left him with a gap between his two front teeth, but in true Emmett fashion, he just took it in stride.

The latest excitement in Emmett's world is the appearance of a very sharp, EXTRA tooth growing in the roof of his mouth. It is not one of his adult teeth, so it will have to be extracted, which likely means that another sedation is not too far in his future. The appearance of this tooth has also made it harder to keep him from chewing on his hands, which is why you may see him sporting a teething necklace, from time to time.

As I look back at the past few months, we have definitely had more good news than bad news and I am truly grateful. Is our life how I had anticipated it to be nearly 6 years ago? Not at all, but now I can't imagine it any other way. Would I like for Emmett to talk someday and be able to do the things that other children do? Absolutely, but that doesn't mean that I love him any less because he isn't like other children. He may not be able to do many things, but he can do a lot more than he used to and I know that he will continue to make progress, in his own time.
A few weeks ago, I made a video showing Emmett's progress and posted it on his Facebook page. I was going to wait to post it until I finished this blog post, but I wasn't sure when that was going to happen! Here's the link, in case you missed it:

Emmett: From Rolling to Nearly Running
 

Selfies before Emmett got tubes in his ears. I think he's showing off the gap between his teeth!

Our little superhero!

Enjoying the snow!