I just had the most amazing weekend in Philadelphia, and not in the way that might initially come to your mind. I wasn't there for site-seeing or vacation or reconnecting with college friends. We packed up our three kids and went to Philly to attend and volunteer at the 10th Moebius Syndrome Conference. It was such a wonderful, MOVING experience; being there, meeting so many amazing children and their families, just being a part of something so important. I want to write about my experience there; I just hope I don't sound ignorant or offensive in doing so!
Moebius Syndrome is a rare neurological disorder which causes facial paralysis and the inability to move their eyes side to side. In addition, an affected child often has some limb and chest abnormalities, such as webbed fingers or not having fully developed hands or other limbs, difficulty swallowing and therefore, eating, and often breathing issues. It doesn't appear to be genetic or hereditary, but is more likely based on an abnormality in a gene during fetal development in utero, and isn't necessarily passed from parent to child. Also, it seems to happen more often in a firstborn child, as opposed to a sibling, and if only one side of the body is affected, it seems to be the left-side. There have also been a handful of cases where twins have been born with one twin having Moebius while the other does not.
It is definitely sad, to put it mildly, how many mothers and fathers find out "the hard way" that their child has Moebius. Mothers go into labor like normal, go through what is often hours of painful labor, just to catch that first glimpse of their newborn baby, anxiously waiting to hold them in their arms, only to find that something isn't as it should be. Either the baby cannot cry or cannot move their face at all, some can't muster the energy or breath to cry, or the baby sounds like it's crying but the expression on its' little face doesn't change. Or they might see that the baby has some smaller features on one or both sides of their bodies, like a small, webbed, left hand. In that moment, all parents just want their babies to be healthy and alive, but then a whole new and completely unexpected realm of issues arises. And even as the baby grows and progresses into infancy and toddlerhood, that little baby will never (without surgery) form a smile to show their happiness and can never form a frown to show that they need some extra hugging and attention. People with Moebius are, however, fully capable of a normal life and intellect; I've found that what they might lack in the physical sense, they more than make up for in smarts!
My husband's cousin, Ian Linn, was born with Moebius about 11 years ago. He can't form a facial expression, was born with webbing on his smaller left hand, and has had difficulty eating. His Mom, Dawn, recounted the experience of his birth in a recent article, and having had three babies myself, it really brought to light what it felt like for her to give birth to this tiny little baby, and to find that he was different, though it took the doctors a couple days to give a name to those differences. That being said, Ian is smarter at 11 than I think I was at 20-something (and possibly even now!). He loves to read, and not simple children's books, but all of the Harry Potter books, To Kill a Mockingbird... true works of literature, yet he also enjoys doing all the same things that a regular 11-year old boy likes - playing video games, making up games with Lego's and toys, making friends! He knows all the words to the Phantom of the Opera and breaks out into song, and he has silly moments like all kids do. He works hard to articulate his words so that he can be understood, and he knows when someone doesn't understand, so he tries until they get it. We first got to meet and hold Ian when he was only a couple months old, and we've truly enjoyed getting together with him over the years, watching him grow, following his progress and triumphs and hardships. My husband, especially, has a truly special bond with Ian, and as Ian gets older, it keeps growing stronger. It was because of Ian that we were so excited to join in the 2-years-in-the-making Conference, which his parents, Emmet and Dawn, had taken on the organizing of.
We agreed last year, that we would attend the conference, and even though we'd be bringing two one-year olds and a four year old, that we would help in any way we possibly could. We stayed at Emmet and Dawn's house, to care for their golden retriever, Mousey, and to assist with the conference, which was held at the Sheraton Hotel, as much as we could. Doug was enlisted as a "runner", and I was volunteering in the child care room as much as possible, since that was where I'd be with my own three children (and the twins still won't let me out of their site). After only a few minutes there on Friday morning, I found that the Child Care Room was definitely the best place to be, to meet and interact with so many wonderful children, either affected by having Moebius themselves, or having siblings affected by the disorder. It truly struck me how having Moebius didn't change the wants and needs of children at certain ages.
There were several babies the same age as my twins. A little boy, Braylon, was "almost 2", as his nametag said, but he ran around that place better than my little girls did, and without his mother anywhere in sight, he didn't seem the least bit saddened by her absence and not at all shy or withdrawn. He loved playing ball, and though I couldn't tell what he was saying all the time, I realized that sometimes I don't know what my own "almost 2"s are saying. There was another little girl, Chloe, who was so sweet and so loving. She instantly hugged someone who talked to her, and she was just so little and girly and loved dancing around (she immediately befriended my husband, wrapping him around her little finger in seconds). She'd had some "smile surgeries", and she could move her cheeks a bit more than other kids, and they were hopeful that she would improve with therapy. There were also several babies only 9 months old or slightly older, who needed constant care, whether for comfort and security, or to check feeding tubes or breathing apparatus. It was heartbreaking to see these little babies just struggling to do things the rest of us take for granted. I know most babies early on don't have many expressions and sometimes seem trapped in their own bodies anyway, but it's very sad to think of some of the Moebius babies who will continue that way for months to come (and sometimes much longer than that).
I also met some preteen girls who, if their faces hadn't shown the signs of Moebius, I wouldn't have known they were "different". Madyson was attending from her home in Australia, and she was such a sweet and caring little mother. Her and another girl, Miriam, took upon themselves to hold some of the Moebius babies (such as little Samantha; such a cutie!), and even tried to help my girls get comfortable and color and play games with them. She was just so open and honest from our first conversation, telling me how nice it was to be here and around other kids who could relate to her and felt the same way she felt. During one of the lunches (outside of the Child Care room), she came up to me because she'd gotten separated from her mother, and she was just so smart to know to look for someone to help her find her way; it felt so great that she trusted me to help her, and I was so glad that I was able to do that for her! Several other little girls, MacKenzie, Olivia, Anna, though they all had Moebius, were all just regular little girls - getting their nails and hair done, doing cartwheels. It was so nice to hear them giggling with each other, knowing that they had each other to relate to, feeling like they weren't alone and here, they were not different!
I also met a wonderful little boy, Cedric, who didn't have Moebius, but his new baby brother did. Cedric was one of the boys that Quinn ran around with, but he did find his way to my side many times. We colored up a paper about a thunderstorm and hale and rain that turned to snow and then the sun... we had a whole story going, it was so nice. We painted his fingernails blue, danced, the twins wore his hat and he was so sweet with them. I'm sure in a few years he will begin to question, as I imagine many "normal" kids do, how he was spared but his sibling ended up having Moebius. And perhaps his interest in me was because I gave him attention, which he might not feel he's getting enough of right now as his parents care for his infant brother. I have to admit I did feel a little bad that there I was (causing our usual scene just by being) with my three beautiful children, when some parents are faced with having one child with a disability.
Some Moebius children have more extreme disabilities than others. I met one boy, Cody, who was 10, and had more issues than some of the others in attendence. He was unable to move his eyes side to side and couldn't move the muscles in his face. His father is blind, so that may have been related to some of the issues with his sight. He had a hard time with balance and he fell down a lot, but he was such a nice boy - he was in awe that my twins were so identical, he'd never seen two babies who looked exactly alike. At one point, I wondered if he thought he was seeing double, but I assured him that they were actually two separate babies. He wanted to hold hands with me, which I was completely find with (I later found he was trying to write words on my hand to tell me things), and he wanted to help with the girls; pushed them in their stroller, tried to hold their hands though I think they were a bit afraid of his forwardness. He was adament that I call him by his name; everytime I called him "Buddy", he'd hold up his nametag and hum, and finally I explained to him that I knew his name, but sometimes I call my friends "Buddy". He hugged me : ) Such a big heart, that boy! There was also another boy, named Avner, who was from Israel, and I spoke with his father a lot. He was the middle of three children, and he sat on a cushioned bench with his legs up, his father sitting facing him, and three decks of cards in his hands; over and over he stacked the cards in his hands and then poured them out onto the bench, throw his fathers open hands, and then his father would do the same back. His father told me that there weren't any other Moebius children near them in Israel, and it's incredibly difficult to find doctors and specialists who can care for him, since Moebius is so rare (only about 2000 people in the entire world have been diagnosed). He said so many times, to me in English and then in Hebrew to his son, that Avner brings him so much happiness and pride, that they love having him in their lives. It was touching how he just wanted his son to know that every chance he could. Despite the limited options in Israel, I hope he finds the care he needs physically and emotionally, and the challenges he needs mentally to truly thrive.
On Saturday evening, there was a cocktail party and a wonderful dinner served for everyone in the Ballroom. I got to meet many of the parents of the children I'd been interacting with the past two days, learned more of their stories and where they came from. After the dinner, there was a talent show, starring the Moebius children. Many of the little girls performed, including a baton dance by Olivia, a gymnastics routine by Mackenzie, ballet by Anna, an impromptu dance number by Katie, Samantha, and Chloe (if she hadn't been too shy to get up from Doug's lap). Chris, an amazing 19 year old Seton Hall graduate peer mentor, performed a skillful soccer trick opener; he'd talked to Quinn earlier in the day and then played soccer with him in the hall during the cocktail party. Chase was an incredibly witty magician.
It literally moved me to tears to see all these kids doing something they loved, as if they were no different than the rest of the world. I saw where all the practiced cartwheels and dancing came from, listened to the words of the songs, Katy Perry and (dreadful) Lady Gaga. As much as I hate Lady Gaga, the words of her song "Born this Way" really struck a chord; as much as I think she's exploiting people with disabilities, I could see that it made these little girls feel better about themselves and their situations, even if just for a minute, and they could feel confident and comfortable in their own skin, that they could feel empowered!
The whole conference was all about doing that same thing, outside of a songs lyrics, whether by having sessions talking about dealing with issues like bullying, or connecting with doctors who could answer questions and provide guidance when everything, especially in the early stages of diagnosis, is all question marks. It was such a wonderful and loving thing that Dawn and Emmet did to organize this year's Conference, to host all the Moebius families who could make it there. They worked tirelessly to put this together, all for the love of their son Ian, but they touched so many other hearts in the process. I feel so honored and blessed that I got to be part of it!
For more information about Moebius, please visit: http://www.moebiussyndrome.com/
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