One of the most favorite parts of my role in Facing Maine (FM) is getting to meet a new person or family who has joined our Facing Maine Support Group network. I always learn something new and am moved by each person or families unique story. Here is one I’d like to share with you all on this snowy New England winter day. So, bundle up and grab a cuppa.
A few months ago, during the Facing Maine Wonder movie event held at Cinemagic in South Portland, I met a member of Facing Maine, Courtney. It was loud and busy in the theater lobby, but we managed to squeeze in a little conversation before the show. Courtney expressed that she was so happy to finally meet some other FM parents/kids in person and excited to be part of a local Maine group where she, her six year old son Colby, and Colby’s father CJ, could connect with other parents and children who were going through similar experiences as their family. Courtney and CJ’s strong, smart, unique, loving son Colby, was born with a rare craniofacial/neurological condition called Moebius Syndrome, and is why they have joined Facing Maine.
Last week, we set aside some time to chat on the phone a little more in depth. Courtney had just gotten out of work, she put me on speaker, as she was on her way to pick up Colby from school. I was just home from work myself, keeping watch for the afternoon school bus that would deliver my sons home. I fired up my old-school notepad and pen. We moms sure are skilled in the art of multi-tasking!
With the voice and knowledge of a confident parent advocate, Courtney dove right in without hesitation, as I asked her to share a bit more information about Moebius Syndrome and their life and journey with Colby. She explained, “the symptoms of this syndrome can be a little different for each person, but generally, people with Moebius Syndrome usually cannot smile or frown, show facial expressions or blink, they have a type of facial paralysis.”
Based on information from Moebius resources, individuals may also have an absence of lateral eye movement, a cleft palate, Pierre Robin symptoms: small jaw or tongue or limited movement of tongue, speech difficulties, and abnormalities of the hands or feet.
My next question to Courtney was one that is often asked of me, since my ten year old son was also born with a craniofacial condition too. What is the birth rate? I had never heard of Moebius Syndrome until I met Courtney and her family.
“There are no exact stats, but it’s believed that there are from 1 in 50,000 to 1 in 500,000 babies born each year with Moebius Syndrome.” She continued, “When he was born and we received the diagnoses for Colby, it was really overwhelming, medically scary and confusing, not knowing what was going to happen day to day and trying to stay organized was all challenging. At the same time, falling so in love with our perfect baby boy, that was the easiest part! ”
It is common for children with a cleft or craniofacial condition to receive surgical and speciality treatment/care by a variety of specialists or a team of healthcare providers throughout their lifetime.
“Colby has had over ten surgeries so far. There are a many “cooks in the kitchen” so to speak, in Colby’s world, he sees a variety of specialists and therapists. Being connected to a clinical social worker has helped so much to sort everything out. Knowing that our son was in the best care possible always made it better, knowing we had made the best decisions with the information that we had. As Colby gets older it seems to get harder for him because he is becoming aware of what is going on, but he still charms the nurses and makes everyone’s hearts melt!”
I asked what some other challenges for Colby were?
"Colby is non-verbal which means he can’t say words, but he does make sounds in other ways. Cognitively, Colby is in tune and on track, with no other significant delays so far. Colby uses an Augmentative Communication Device, we call it his “talker”. It’s a portable computer that he uses on a regular basis to communicate his wants and needs. It creates sentences, then generates a voice to be heard. He also sometimes uses the 'pecks' picture in a picture book to choose or request something. He also has a couple of basic signs for quick responses (yes, no, more, all done, help). He is 100% fed by a feeding tube, he has never eaten by mouth due to swallowing difficulties from Moebius.”
Courtney has learned to be an advocate for her son and sometimes sources of support come from near and far both.
“It can be overwhelming, but being part of the Facing Maine Facebook Support Group has helped me by just being able to read other peoples experiences and being able to relate. It may not seem significant at the time but there could be the one piece of advice you need in a split second, you can ask a question or get information from other parents who are living it and learning it too. Never doubt your instincts and always fight for what you think is best for YOUR child. Helping build awareness is very important! We are looking forward to attending some FM member family events with Colby so he can meet some of the other FM kids and we can meet more families. I know of one other Maine family with Moebius but we have not met them yet.
“Every other year there is a Moebius conference where people from all around the world gather to speak to professionals and other families affected by Moebius, we attend and it is amazing to be surrounded to be around so many children and adults that all look like Colby.”
It was after attending a conference and connecting with others in the Moebius community that Courtney heard of the term, “Smiling with our hearts.” She explained what this means:
"‘Smiling with your heart’ is a saying for the Moebius community. The meaning to us is that even if you are unable to show your happiness with your face, show it with love and acceptance. You can show love lots of ways. A smile can come in many shapes and forms. When Colby is happy you can hear the sound of his laugh, he waves or claps. Just because you don’t see him smile or make facial expressions doesn’t mean he isn’t feeling emotions like joy. He is like any other 6 year old boy, silly, energetic, and loves to play/joke too.”
Another challenge Courtney shares is when, “people come up and tell him to smile or say ‘hi’. Colby has Moebius syndrome and has no facial expression and is nonverbal. Sometimes people aren't willing to listen to an explanation as to why he isn’t able to respond or speak in the way they first expect - then we get a 'look' and those people usually walk away. It’s unfortunate, when those experiences happen.
She quickly adds with a resilient and positive tone:
“But it is always a pleasure when someone takes the time to learn about him and not jump to conclusions. There are many things that make Colby so happy! He loves watching his iPad, but an activity that makes him really happy is swimming! He loves being outside, boating, fishing, and traveling! He is a loving, active, and happy boy! My son is my hero.”
I can hear the deep love and pride for her son who has been through and overcome so much already in his young life.
Not every smile looks the same, some exist in their own unique way. Like in Colby’s way.
The smile of a young hero.
We chatted a bit more before Courtney needed to head inside to pick up Colby. Suddenly, my ears perked as I heard the familiar sound of the school bus rumbling its way down the road, which is my cue to get out the door quick to greet it.
I thanked her for her time and all she shared. We made plans to keep in touch, stay connected, and cheer on the warmer months ahead, which means, the next Facing Maine events, activities, and a chance to get together and have some fun!
As we hung up, the bus pulled to a stop in front of the driveway, my two sons burst out the double doors, slinging their backpacks on their shoulders, arms heavy with a jumble mess of papers, lunch boxes, and spare shoes. Each of them immediately free up an arm to wrap around me, as we head to the house. I practice it then: Smiling with my heart, as I squeeze them back.
Take a moment. See with your heart. Smile with your heart. Most of all, if you happen to meet this wonderful little trio, this Maine family with their sweet, adorable, red-headed son Colby, don’t be afraid to give them a smile or a wave, you never know, you might just find one coming right back your way!
To learn more about Moebius Syndrome Courtney suggests visiting The Mobeius Syndrome Foundation: http://moebiussyndrome.org
Contact us to learn more about how you can help Facing Maine continue to connect, support, and advocate for people and families with children affected by cleft and craniofacial conditions in Maine. Email: firstname.lastname@example.org. facingmaine.org