This is Treacher Collins Syndrome: this is our story

It’s probably no great surprise that I’ve decided to share our own story to cap off the series “This is Treacher Collins Syndrome” leading up to Wonder’s release this weekend. About a year ago, when I read that Wonder would become a movie, I was fundamentally anxious. Would Hollywood stay true to the book? Would these actors understand our lives, our highs and lows, our fierce protection of our children and ferocious style of love? Through people closely connected to the film, I learned that the incredibly talented (and famous WOW) actors were also very thoughtful in their preparation. Those making this movie were working hard to understand families like ours, children like ours and grasp the complexities of raising a child with Treacher Collins.

I also knew around that time that I wanted and needed to create space on this blog where these same kinds of families could share their stories. I wanted every moviegoer that I could reach with this little blog to have a better understanding and orientation to our community, to our lives, to our incredible children. We have met the families of four children here in recent months. Four stories not too dissimilar from your own story. We’ve met children who love football, soccer, their dogs, jokes, playing outside, school, their siblings, and their parents. We’ve met parents that would give anything to protect, support and cherish their child. I sincerely hope that you’ve gotten as much out of this series as I have. I absolutely sense from the emails I have received that there is a wonderful understanding that has been gained from meeting these children on the blog and some have vocalized they’ll now see those same sweet faces in Auggie when they go to the theaters. In watching this movie, I’ll no doubt think of Landon and now I’ll also think of Cassidy, Jaxon, Drew and Logan and countless others as well.

So today, I give you our story.

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  1. Tell us about your family!

This is an instance where a basic request for information becomes the most complex of answers. When it comes to family, there is an air of multiplicity for our children. Landon has three parents, one sister, five grandparents, aunts, uncles and now six cousins in her life. She has more love surrounding her today than ever before. Although her young life involved the creation of two homes and her parents no longer together, she has gained a tremendous amount of love in these last couple of years and found that her support system of not just family but friends continues to multiply.

Landon is a quintessential five year old. She still toggles between loving the toys and figures of toddler-hood while latching onto the older things of girlhood that her “almost-8-year-old” sister has discovered. She has shirked her passion for all things wheels for barbies and princesses as of late. I, on the other hand, still pull out the trains and trucks in the hopes that the mini-engineer brain of her youth remains firmly in tact.

Landon is a September birthday so she is still safely in the arms of her little preschool. This is a community that loves and accepts her without question. One where many little girls have asked for their very own bahas and don’t think there’s anything different whatsoever about our little girl. The older girls on campus, especially those that have now read Wonder, stop and say hi constantly to her recognizing her sweet nature and loving her for her silly antics on the playground. Some of those young ladies have shared that they too have read the book and were so proud to know Landon while reading Auggie’s story.

With golden hair and beautiful blue eyes, her beauty astounds me at times, a flicker of the future as she is less a baby and more a girl with every passing day. This is an age of self acceptance as well- something I hope she holds onto for the rest of her life. She brags about her little ears, is sassy and silly, defends her bahas proudly if ever necessary and doesn’t see any difference in her perfect face when she looks in a mirror. When she looks at pictures of our other little friends with TCS, sometimes she exclaims that they too have awesomely small ears, but most of the time she points out that they have the same toys in the background as she does or how cool that they got to play in mud in the picture. This is a wonderful time in her life where being a kid is paramount, and we’ve yet to face too many ugly sides of bullying or hate. She loves her bahas, she loves her ears, she loves her whole self. May this be the case always and forever.

2. Did you know your child had Treacher Collins Syndrome (TCS) before he/she were born?

 If you have yet to read Start Here, please do. I wrote it when Landon was about 4 months old in an attempt to exercise the amount of emotion and anxiety that surrounded her birth. I did not know Landon had Treacher Collins Syndrome before she was born. I found out this fact, this diagnosis, while attempting sleep after 26 hours of hard labor and then hard surgery. I was alone, in a shared hospital room, at about 4 o’clock in the morning. Nurses and doctors filled the small space next to my hospital bed and as I woke and focused my attention on who was in the room, a permanent lump formed in my throat. I knew during the few moments I’d  held her that something was very different.  There was something going on with my child but I was too nauseated and on too much medication to properly demand answers. When they arrived with these answers it was bewildering and a fog that I’m still seeing my way through. To learn anything is “wrong” with a life you’ve just created is painful, but this news was also coupled with a lot of uncertainty and some confusion around what exactly Treacher Collins meant.

Those first few weeks were a blur, not only as a new parent, but in adjusting to our new normal. I needed to absorb what that would entail, set up hundreds of appointments, tests, screenings, and therapies. That first year was the hardest year of my life not only because of our newly understood genetic syndrome but also because I was changing. I was finding out what this type of motherhood demanded and having to shift priorities, emotions and strength to be better equipped. Landon has always, from day one, amazed me. This little girl is strong, determined and fierce. I know that most parents believe their lives started when their kids were born and I share that sentiment. I was almost reborn I would say. I found my advocacy voice, my tougher doctor’s appointment exterior and realized that my strength, health and heart needed to be taken care of so I could take care of her. I am so wildly proud to be her mother.

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  1.  What has your experience with TCS taught you as a parent?

 It’s taught me a great deal about patience. Being a different parent, a rare parent, you want answers, you want them now and you want to be able to plan. The thing is… you can’t control it. You may not get answers. You can’t always plan. You cannot control the specialists, the outcome of the CT scan, the poking and prodding. You cannot control the staring, the pointing, the glaring that people do. You have to find patience with yourself and then with the world.

I also went from assuming the world would judge to seeing immense beauty in humanity. Initially I would take my new baby to a restaurant and turn her away from people who glanced in our direction. I assumed the worst in them, not even giving them a chance to smile. Then, in reading and writing a story about another boy with TCS who had been bullied, it was easy to focus my attention and energy on the awful things the other kids did and said. What the real story was, or the lasting story was, was the response to what happened to him. The love, kindness and acceptance that poured in from around the world.  This blog has gone from a bit of the “whoa is me” style of writing to sharing messages, stories and real life experiences of kindness and acceptance… or so I hope.

TCS has also taught me not to blindly accept what one specialist says. You know your child better than anyone and I think finding the right medical tribe to help you on your journey could not be more important. If what you hear from  a doctor isn’t good enough for your child, seek more opinions, reach out to the community. We’ve had a few doctors not understand why she needed a second baha. We’ve had one not ever look her in the face and then order surgery for her. We’ve had another ask what kind of special school I was looking into for her education. Doctors know quite a lot, but they do not know everything. When it comes to rare syndrome, that rarity means you may discover something not yet known and be able to help these physicians see things from an entirely new perspective.

  1. What is the most common misconception about TCS, or what would you like others to know about the syndrome?

 Along with my other fellow TCS parents featured here, it’s all about the cognitive function for people with TCS. I think the word syndrome needs a bit of a face lift. Syndrome does not equate to cognitive failure. Instead, our children are incredibly bright, thoughtful and engaging children. Landon’s ability to memorize things tells me so far that she may have a photographic memory. In her school meetings we are lucky to constantly get reports that she is incredibly bright, loving and thoughtful.

Oh and one more, just because someone’s ears are tiny, does not mean they cannot hear you.

  1. What is one thing you’re most proud of so far in being a parent of a child with TCS?

 Our community continues to amaze and inspire me. In preparation for Wonder there are so many stories being shared around the world. All of the families I’ve met want to genuinely help one another. There are always countless comments or emails I receive full of love for my child. A child these people may never meet, but they want to love and share kindness with no matter what. This community is selfless in their pursuit of changing hearts and minds about what differences really mean. We want to shift perceptions and encourage a world of true kindness.

Here are some incredible stories, organizations and videos of our friends in this community:

Look At Us: https://lookatus.org/ 

Nathaniel’s story: https://www.facebook.com/ABC2020/videos/10155419365844934/

Love My Love my Face Foundation: https://www.facebook.com/LoveMeLoveMyFaceFoundation/

Special Books by Special Kids: Cassidy’s Kindness:

 

  1.  How do you feel about Wonder– the book and the upcoming movie? And do you have any special plans to see the film in November?

 I re-read the first four pages of Wonder for about a year. The book’s electric blue cover staring at me when I’d sit near our bookshelves. Countless people in my life would reach out saying they found this amazing book and did I have it, have I read it, what do I think about it. I resisted not only because I knew it would be hard to read, but also because I knew this author wasn’t a real TCS parent herself. I was frustrated that someone would dare tell this story without having lived it, loved it or protected it from the world. I had this major chip on my shoulder that this intimately personal story of mine was being told by a woman who quickly ushered her own child out of a staring situation involving a girl with TCS.  But… once I felt strong enough, proud enough, and settled enough in our journey, I finally opened the book and made it past page four. I got over my misconceptions, my prejudices and realized that this woman, this author, not only got it RIGHT, but is changing hearts and minds with her story. That she had joined us in this fight for kindness. This book and now this film are things that bring awareness to our own prejudices, that force wonderfully hard conversations to take place around our dinner tables. This book will show our kids that they are NOT ALONE. They have a true hero in Auggie.

  1. Is there anything else you’d like to share with us?

I started writing about Landon’s syndrome immediately following her birth. I sat down with my laptop and instead of the normal posts about interior design or fashion, my subject matter of choice before her birth, and it poured out of me. I sought comfort, I sought acceptance, I sought your love and kindness. I had no idea this blog would become what it has. Still a place of solace for me personally, but also a voice box for those who cannot speak. A place of comfort and recognition of experiences for those who need a light at the end of the diagnosis tunnel.

Treacher Collins Syndrome does not define who Landon is nor who I am. It is a wonderful addendum to the incredible journey we are on as a family. TCS is a community of kind people. TCS is a wonderful way we can make this world a kinder place.

Our community has grown tremendously in the last six months as we’ve been able to spread more kindness and understanding before this movie or book existed. That is the power of Wonder. Asking people to look inside and reach for kindness instead of judgement, to seek acceptance instead of divisiveness, to love others as they themselves would like to be loved.

 

xoxo,

Eloise

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