“On July 4, 2017, my fiancé and I found out we were going to be parents. We were completely ecstatic. Physically, I had the best pregnancy a mom could wish for but emotionally, it really tested me. At 20 weeks, we went in for an ultrasound to find out the gender of our baby, but we found out a lot more than this. During the ultrasound, we discovered our son had clubbed feet and a hand that looked a little unique. As a mom, it was a hard time for me because I constantly questioned if I did something to cause this.
My pregnancy turned into a high-risk pregnancy. With the help of all of my positive and supportive family and friends, I learned to get past all of these issues since they are fixable and cosmetic. My fiancé kept reminding me it could always be worse. But neither of these things was why he was in the NICU.
As soon as he was born, the nurses realized he had a small and recessed jaw, so he struggled to eat. Once again, I had to mentally get through this new discovery about our baby. After digesting this was just another fixable difference, I learned to stop worrying and just enjoy being his mom. He was in the NICU for 11 days.
Once we got home, my emotions got a lot better. When Tobias was 6 weeks old, I noticed he wasn’t smiling yet. The pediatrician said he would smile soon. Every day I made silly faces, weird sounds, and looked like a crazy mom, all in the hope he would smile. I also noticed he wasn’t blinking. He would only close his eyes to sleep. Everyone told me not to worry, but my mom intuition was telling me something else.
At 2 months old, we had a check-up with his plastic surgeon to talk about one of his upcoming surgeries. I took the time to mention he wasn’t blinking or really moving his face. As the doctor listened to my concerns, she then expressed her thoughts on what was wrong with him. The only thing I remember her saying is he wasn’t going to smile. I asked her, ‘So he isn’t going to smile at all?’ and she said, ‘No. He seems like he will be unable to.’ After that, I don’t remember anything she said. I blanked out because I was trying my best not to cry. I was in shock. Going into this appointment I was expecting to hear, ‘He will move his face after some physical therapy,’ or, ‘Give it a few months, because every child is different.’ I never thought we were going to get the news my sweet little boy was never going to smile.
As we left that appointment, I tried holding in the tears until we got to the car, but I just couldn’t. I avoided any elevator that had other people in it because I did not want anyone to see me crying. Once we got in the car, I just lost it. I felt so bad I was crying while Tobias just stared at me, but I couldn’t help it. Thankfully, we already had plans with friends of ours, so I was forced to suck up my tears when we got to their house. While we were there, the doctor called us to let us in on her findings. My fiancé put her on speaker so we could hear what she had to say. She said after we left, she did some research and believed Tobias had Moebius Syndrome. Right away, she told Adrian to tell me not to Google it, but how could I not?! As she was saying his lack of blinking, limb abnormalities, and no facial movement was all linked to this condition, I scrolled through the many faces I found on the Internet.
I went crazy searching every website that came up. As I read the many articles, everything just clicked. I thought, ‘This is it. This is exactly what he has.’ It all added up. Everything different about him completely fit the bill. The next couple of days were really hard for me. When I read there was no cause and it just happens at random, I thought, ‘Why us?!’ There were moments I did not think I was strong enough. I would catch myself thinking about it and just break down in tears.
Almost a week went by and I found myself in my kitchen by myself, just crying. As I stood there I told myself, ‘You need to stop! You can’t just cry about this forever.’ As crazy as it sounds, I was a lot better after. No, I wasn’t all rainbows and sunshine, but I was more accepting and positive about the situation.
As days, weeks, months, and years have gone on, it has become a lot easier. He just turned 3 in March, so I have had a couple of years to get my emotions in order. I can now talk about it without tearing up. I found the more I talked about it, the better I felt about his condition. After writing a couple of posts about his condition, a few moms reached out and praised me for being so open and honest, which ultimately led me to start a blog. Now I am no longer worrying about the fact he can not smile at me. He is laughing all of the time and proving to me he is such a happy baby. Every time I hear his laugh, I know everything will be okay. I know God gave Tobias to me for a reason and I am hoping writing about his condition and not being afraid to spread awareness for this rare syndrome might just be one of those reasons.
Now I am so thankful God thought his father and I were the perfect parents for Tobias. We enjoy watching him grow stronger every day. He is constantly proving all of my worrying thoughts wrong. Our sweet Tobias is such an amazing boy and we are absolutely blessed to have him. He truly is the funniest kid. His personality lights up every room he is in. Since he cannot smile or make any facial expressions, he shows his happiness in other ways. He loves to dance, show affection, and laugh. He is amazing at making others around him instantly feel happy. We want to raise our son to chase his dreams, just like any other child. We don’t want him to say, ‘I can’t’ without first trying. I know we don’t owe anyone an explanation, but one thing for sure is his dad and I want to raise him to be as confident in himself as possible. And we know in order for him to be confident, we first need to be as open and honest as possible.
My fear for him isn’t the fact he is different, but rather the fact he will be treated differently. This is why inclusion and spreading awareness is so important for me. The more we expose ourselves to new things, the more accepting we will be. I know many people grow up without knowing someone with a disability, so when the time comes to actually see someone who looks different, it can be shocking and people don’t seem to know what to say or how to act. I think exposure can help people take the time to be more familiar and less awkward in those situations. July 24th is Moebius Syndrome Awareness Day. On this day, we wear purple and advocate for those who were born with this condition. We hope by spreading awareness, we can encourage others to be more accepting of those who were born with not only this disability but any type of disability.
Spreading knowledge will help increase understanding and create a more inclusive and accepting community. Here is some information about Moebius Syndrome and how it specifically affects our son:
What is Moebius Syndrome?
Moebius syndrome is a rare neurological condition that primarily affects the muscles that control facial expression and eye movement. The signs and symptoms of this condition are present from birth. Weakness or paralysis of the facial muscles is one of the most common features of Moebius syndrome. Affected individuals cannot smile, frown, or raise their eyebrows. The muscle weakness also causes problems with feeding that become apparent in early infancy. Every 1 out of 500,000 is diagnosed with Moebius. There is no known cause or treatment.
How is Tobias Affected?
Tobias is unable to move most of his face. He cannot move his eyebrows or make any facial expressions. When you look at him, he always has a serious look. He can move his lower jaw and tongue, but can’t utilize the upper part of his mouth or lips. His mouth is smaller, so his teeth are very crowded. He also sees a speech therapist every week.
Because his eye movement is affected, Tobias cannot move his eyes from side to side. He can only move them up and down, so he has to turn his head if he wants to look at something laterally. Tobias is unable to blink, but he does close his eyes to sleep. When he was a newborn, he wouldn’t close his eyes if they were exposed to sunlight or water, but as he is getting older he has learned to do just that. Will he blink in the future? Probably not without having to think about it, but we are hopeful he will be able to remind himself to blink when he feels his eyes are getting dry. In the meantime, we do have eye drops we put in his eyes a couple of times a day to prevent dryness and help protect them.
Tobias has clubbed feet. This means when he was born, his feet were completely turned in. He had to wear casts until he was 3 months old and now wears medical shoes to overcorrect his feet. He also has a small hand. When he was born, one hand’s fingers were webbed. He has had two surgeries to separate his fingers. He sees an occupational therapist to help him use this hand.
Another common symptom for kids with Moebius is upper body weakness. Tobias has been seeing a physical therapist and occupational therapist since he was 3 months old. They worked with him to strengthen his core and help him sit up, crawl, walk, jump and go up and down steps. Tobias doesn’t meet physical milestones as quickly as other kids his age, but he always gets there eventually.”
This story was submitted to Love What Matters by Eliza Moody of Yuma, Arizona. You can follow their journey on Instagram, Facebook, and their blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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