Friday, November 8, 2019

Reality Check

I have a confession to make: my boys are not always happy! You may have noticed that most of the pictures that I share on social media and on my blog are of very happy boys. Big smiles, sweet moments, and coordinating outfits may make for beautiful pictures, but let’s face it... these are only moments in time and in between those moments are many other not so happy moments.

Don’t get me wrong. We have a pretty good life, but it is definitely not “picture perfect”. In most situations, I tend to be an optimistic person. I just know that through experience and observation that it is easier to get through the tough times by making the best of what life throws at you. However, that doesn’t mean that we don’t have bad days, cry or even get angry.

Most people think that Emmett is always happy. When we are out, he is normally pretty happy, but he often times gets really frustrated at home or even if we are out and he is ready to be somewhere else. He is constantly asking to “go” with his pictures or by bringing us our coats or shoes. He gets especially mad if his dad and his brother leave and they don’t take him too! He also cries almost every weekday morning, when he realizes that his dad has already left for work, even though this has been the case for his entire life! We can normally work through it, but it can be exhausting at times. Although his communication skills have improved, it is hard for us, as parents, not knowing for sure what Emmett wants and I’m sure it is equally frustrating for him.

Emmett’s not the only one that has “not so happy” moments. We all do! Mine tend to sneak up on me when I least expect it. Sometimes when I’m watching other children play, I can’t help, but get a little sad. Even some toddlers are doing things that Emmett still can’t do. A few weeks ago, I was going through the boys’ toys to donate and started tearing up. Not because I didn’t want to part with them, but because Emmett never played with them. There are so many toys that I’ve held onto in hopes that Emmett would show interest in, but even at 7 years old, no toy holds his interest for more than a few minutes. Is that something to cry about? Probably not. But it does make me a little sad that he doesn't take joy in playing and pretending like other children. It clearly doesn't bother him, but it sure would be nice to say, "why don't you go play Legos with your brother?" Oh, wait, did I mention that Emmett also puts everything in his mouth? Okay, maybe the Duplo blocks are a better idea. Either way, he is not interested. I know that this can be hard for Corbin too because most children can play and pretend with their siblings for hours. He never really complains about it, but he definitely asks us to play with him a lot and often wants to have friends over to play, so I do feel like he misses out on some things.

Thankfully, Corbin currently seems fairly unfazed by the fact that his little brother is different. He may get a little annoyed when Emmett tears something up, chews on his toys, or is crying really loud, but for the most part, he is really good with him. He has also had to learn to be more patient because Emmett requires more help and doesn’t do things very quickly. That’s not necessarily a bad thing, but it is definitely a reality. We try to keep a balance, but there are times that I have to miss things with Corbin because Emmett has an appointment or just doesn’t do well in some situations. I guess that can happen anytime you have more than one child, but that doesn’t keep me from feeling bad about it. However, this year, between his stomach problems and breaking his arm, Corbin has gotten a lot more one on one time. He even tied with Emmett for the number of times that he's been to the to the ER! We definitely don’t want to have a tie breaker anytime soon! Corbin is normally our "healthy one", so it was really strange taking him to so many appointments and seeing him go through so many tests and X-rays. He was a pretty good patient, but he was definitely nervous.

Although Corbin is usually well behaved and is really good with Emmett, he still has rough days, makes mistakes, and disagrees with us about some of our rules and expectations. We don't expect him to be perfect and thankfully, he doesn't expect us to be perfect either.

The truth is, no one's life is "picture perfect" and by now, I have hopefully convinced you that despite my positive posts, we aren’t always happy. I’d like to explain why it has taken me so long to write a new blog post. I actually had the idea for this post several months ago, but every time I tried to write it, I couldn’t quite find the words. Even now, I feel a little guilty writing about our struggles. Not because they aren’t real, but because it could be so much worse!

I know of families that have gone through so much more than we have, but continue to keep a positive attitude and never give up. Some have children that have spent weeks or even months in the hospital. Others have been investigated or have even had their children taken away from them, when they were simply trying to get them the medical help they need. Another family is mourning the loss of a seemingly healthy child that unexpectedly passed away in her sleep.

We all have our struggles, but when I hear about what others have been through, it really puts things in perspective. Having a child with special needs is not easy, but we have so much to be thankful for. So, when you see those happy faces on my blog or social media, please know that I’m not trying to create a false sense of reality, I’m simply trying to spread a little happiness in an often not so happy world. I’m choosing to focus on the good and I hope that by doing so, I’m helping others do the same.

Here are just a couple examples of our "not so happy moments"
Emmett upset when he found out his school was closed for the day

Corbin waiting to get his arm examined

And some of my many attempts for the "perfect shot"...

Tuesday, December 18, 2018

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 starting 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.

Saturday, June 9, 2018

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!

Thursday, February 15, 2018

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!

Monday, November 20, 2017

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!

Thursday, June 29, 2017

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 worldI'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!

Friday, April 28, 2017

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 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