Moebius Syndrome Conference

     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/

Independence Day

       Happy Independence Day to you, my friends.  Hope you've spent the day off of work (independent), and surrounded by loved ones, doing something you enjoy (happy).  My family and I went to the beach this morning, despite an insane downpour that threatened to thwart our plans, but had a nice sunny day in the ocean and playing in the sand.  We spent some time playing badmitten and ladder ball in the yard and having a cook-out, "just" the 5 of us, and now I sit in a quiet house, enjoying my independent time.  Time to reflect on Independence Day's past (no pun intended).
        Some of my earliest memories of the 4th of July are from my childhood in Jersey Shore, PA.  I remember there was always a huge carnival and parade, and then after dark, a fireworks display.  I remember laying on my back on our soft pink picnic/beach/fireworks blanket, my Dad and brothers next to me, seeing the fireworks in the dark sky, literally overhead; the smell in the air, the charred paper falling to the ground. 
        Some years later, after moving to Chippewa, PA, I went with my friend Missy to see the fireworks at Point State Park in downtown Pittsburgh - it was an amazing show, being right on the point of the three rivers with the fireworks all around.  There were boats in the water, the Fort Pitt Bridge to our backs, a wall of mountains rising on one side and skyscrapers lit up on the other side, and there was music playing from somewhere.  It was very impressive, especially being my first 4th of July since we'd moved near Pittsburgh.  The next year I would see fireworks across the bridge from Beaver Falls, with a guy I liked and another couple of our friends, having just graduated from high school, almost able to taste my new-found independence that I knew was just around the corner with college starting in the fall.
        Fast forward many years, after college, after I'd gotten married, I remember a particularly sad Independence Day.  It was 2003, and the weekend before the 4th, we'd been at a friends wedding in New Jersey.  I recall that I was walking on the beach, trying to make my weekly phone calls to family.  I spoke with my parents briefly, and also with my Great Uncle Ted.  Our calls always ended with me saying "I love you" and him saying "You, too, Jenny", but this time, he said "I love you" first; it struck me with a smile, but I didn't think more about it then.  We got back to Boston the next day and I went back to work on Monday.  My Mom called my cell phone in the middle of the day, which was highly unusual; she had some bad news.  My Uncle Ted had passed away overnight and my grandmother, his sister, had found him in the morning when he hadn't come by for breakfast on her side of the two-family home they both lived in.  He had been sick for a number of years and didn't have any children of his own; my brothers and sister and I had always been like his grandchildren; we were all so close, and it was quite a blow.  The next day was the 4th, and I was still upset and breaking down into tears often.  I remember sitting on the front steps of the condo we rented in Watertown, I could hear the Boston Pops music playing on the TV inside, echoing from other open windows on our block.  My husband came out to comfort me, but I just really missed my Uncle and wished our last conversation had been longer, and I couldn't stop crying.  At that second, there was a rumble in the sky that started low but got much louder and more powerful as it drew near - it was a jet fly-over, four military jets flying in formation, roaring directly overhead.  The jets were headed to do a fly-over over the Esplanade where the Independence Day celebration was going on, but I felt like it was a sign from my Uncle not to be sad anymore, that he loved me, as he told me the last time we talked, and that he was watching over me.  To this day, anytime I see a fly-over, it always makes me smile and think of my Uncle Ted.
          Nowadays, my July 4th celebrations are much more low-key.  The year I was pregnant with Quinn, I was nausious and bloated, so we went out for dinner but stayed home after that.  And last year, Doug took Quinn to a parade in town in the afternoon, but we were strict on the girls naps last summer, because they were still really fussy, and I needed the break, too.  Last night, Doug took Quinn to see the fireworks in Harvard, along with three bands and other festivities, and I was a bit jealous that he got to enjoy the eveing with our son.  But, I know that as the girls get older, we will all be able to partake in the celebration together. 
          One day, I imagine that I will lay on my back on a blanket again under a fireworks display, alongside my children, fireworks blazing overhead, making memories, just like I used to do when I was a child, way back when, growing up in Pennsylvania.

Innocence (and) Lost

       It's amazing how strikingly innocent my three beautiful children are.  I mean, yeah, everyone knows that children are innocent but oh my God, I see these three little faces everyday and it just gets me sometimes, how truly innocent they are.  How simply happy they can be - how two rocks can amuse them for quite some time, how running in circles is fun and funny. Kelsey is always running around in her 'rainbows and unicorns' world, with her tongue hanging way out of her smiling mouth as she toddles around; Sierra will come running to me from across the room - full speed, a huge open mouth smile, her bright blue eyes gleaming, and crash into a huge hug around me, her little hands clasped behind my neck; and Quinn, on my little boy, is so full of life and energy, and even in times when he's running laps around the yard, he just has this toothy grin and sweet little voice that melts my heart!  It's all just so amazing and I cannot imagine my life without them, they truly complete me.  And, really makes me stop and smell the roses, so to speak, and try to enjoy the sweet, uncomplicated moments I get with them.
        I want to help them stay innocent for as long as possible - I'd say for "forever", but I know that can't be possible.  I love seeing them be children and explore the world around them, and I want to show them as much of that world as I can. I have concerns that since I'm caring for all three of them (and, the girls especially, require so much attention), that they're missing out on important adventures and learning experiences, while I spin my wheels and just try to get through each day with everyone clothed, changed, fed, and smiling at the end of the day. I make a point of getting them out of the house everyday, whether to the playground, various playdates, museums, a working farm nearby...  I just don't want them to miss out on anything the world and our life has to offer!
       But I know that innocent can only last so long, and Quinn is 4 years old now, and testing boundaries, and, well, not listening to anything I say. He won't stay with me in crowded (or even empty!) stores, won't hold my hand when crossing the street or a parking lot; won't listen when I ask him to stop running away, won't wash his hands after peeing just because I asked him to and he thinks there's a choice.  I'm well aware of choosing my battles, and when it comes to his choice of clothes to wear for the day, I don't dispute, but when it comes to safety, there's no picking...  I know this is all normal 4-year old behavior, but it's quite difficult to deal with while watching the twins and trying to maintain control and stay calm.  
       This morning we went to church, as we do most Sunday's. It's the church we started going to in Watertown when I was pregnant with Quinn, and even after moving 35 minutes away, we continue to drive there every Sunday instead of attending the church her in Sudbury. We've made so many great friends there, and really enjoy the feel of the church, the community, everything about it (as far as church goes). After mass today, we were walking down the aisle to the back of the church to say goodbye to a family that is moving to New Hampshire tomorrow, a mother and father with four kids who we have known since Quinn was born, whose kids we've played with several times and I've had many conversations with the mother. Anyway, we go down the side aisle and Quinn, determined not to go the same way as us, goes down the middle aisle, weaving up and down pews along the way. No big deal, Doug's watching him, I'm watching him, as we say goodbye to our friends. After the hugs and goodbyes, our backs turned for 2 seconds, Quinn isn't there anymore. We assume he's just waiting by the door - but no Quinn there. He's not up the aisles, he doesn't seem to be laying in one of the random pews, Doug takes the elevator down but he's not around there, and I take the stairs and he's not there. Also doesn't seem to be outside in the grassy lawn or near our van. I'm carrying Sierra and sweet little throaty voice that she has, she's repeating my calls of "Quinn?" I'm starting to freak out, I can't breath. I think of the last moment I was with him in the pew at the end of the service, and he was upset because when I said it was time to put the pen (he was using to write on the bulletin) away until later so we can leave, he wasn't listening to me and is just reacting.  I thought that surely someone wouldn't kidnap him from our church; I mean, seriously?  It's a church, we know half the congregation, everyone knows who he is, but where is he?  I'm downstairs in the common area, nearly in tears, barely breathing, when Father Marty comes downstairs and says that "someone found him".  Now, I'm actually in tears as the relief flows through me; Sierra starts rubbing my back because she knows I'm upset though she probably doesn't understand why (although, she is very intuitive for a 1 year old).

        I go up the elevator and there is Quinn, also in tears, hugging his Daddy's leg, Kelsey looking on (tongue hanging out, of course).  He runs to me and I drop to my knees to hold him, so happy that he's okay and not kidnapped and not hit by a car.  I hold his hand to get him out to our van.  I place Sierra into the van, and she crawls up to get into her seat and play with the buckle, while I talk to Quinn - I hold him and tell him that he is never to leave a building without me again, that he could have been hit by a car or that someone might have tried to take him away from us because he's such a nice boy.  I'm so scared that one of my babies will be kidnapped, especially with my focus being so scattered while trying to watch over three kids with only two eyes, two arms.  I want him to understand the dangers so that he'll stay close to me, but I don't want to scare him so badly, but he has to understand that I'm not just talking to hear my own voice.  I want to protect him from the horrible things that happen in the world, but I need to tell him enough so that he yields my warnings.

        It's a delicate line we walk as mothers, as parents, trying to nurture our children while helping them to acclimate into the world around them.   I feel like if they were good listeners, and could get through that age 3-4-5 phase, they could be innocent for longer, but I guess it's also important that they not be too naive for so long.  I just want my children to be happy and healthy and truly enjoy their childhoods - I just hope that I can protect them from the bad things and help them enjoy the good.  And I just want them to know how much I truly love them.