This is Treacher Collins Syndrome: Meet Beth and Drew (and their family)

When Beth sent me this post the other day, I stopped in my tracks as I read it. I then proceeded to re-read it 6-7 times over the next day. What floored me was how similar Beth’s story of Drew’s birth was to Landon’s birth story. My husband Eric and I marveled at how many similarities there are in here between stories, hopes, fears that we both share.

Beth’s courage and open hearted writing is exactly what I wanted for this series. I deeply want to connect anyone that reads this blog with the beautifully raw, real and awesome stories of families touched by and living with Treacher Collins Syndrome. I want each of you to walk into the theater in November or curl up with the book Wonder and carry these families in your hearts as you see, hear and read Auggie’s story.

Settle in and ready your hearts for Beth’s tale. She and her husband are sharing their story with vulnerability and in doing so they are teaching us so much about love and kindness. I am honored to share their story today and more excited that you get to read it.

1.       Tell us about your family!

(This is Beth): My family – a 3 ring circus!  Andy and I have been married coming up on 15 years, and we have 2 athletic and energetic sons – Michael, who is 14, and Drew who turns 13 in August, and who has Treacher Collins Syndrome.  We also have cats and dogs, and a penchant for getting ourselves involved in too many sports and spending a lot of time on sidelines supporting each other.

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

This is a tough one.  I have TCS, a milder form, but no doctor ever put all of the pieces together.  I wear hearing aids because of the undeveloped middle ear bones, had jaw surgery as a teenager, wore glasses … and Andy and I talked about Drew maybe having to wear hearing aids, because my dad did also.  But no one ever uttered “TCS” to us.

I ended up having a c-section because Drew was super happy where he was and I was 2 weeks late.   The silence in the delivery room when they took him out was something I hope no other parent ever has to experience.  The delivery room nurse said, (and this is an exact quote) “You have a boy.  There is something wrong with him – he doesn’t have ears – and we don’t know what else”.  And then they whisked him away.  That moment in movies where the baby gets placed on your chest and you bond?  It stayed in the movies.  So we waited.  Almost a full day after he was born, we had very few answers and then a geneticist came to see us in our room.  The geneticist, along with several medical students, stood and looked critically at Drew and said, “Oh!  He has Treacher Collins Syndrome.  And he gets it from you!” (And pointed right at me.)  I was stunned.  I didn’t know what to say, so I think I asked how he knew that, to which he responded, “You have a small lower jaw and your left eye is droopy.”  I turned to my amazing husband and said, “Does my left eye droop?” (because that was where I was mentally – I then KNEW I was responsible for Drew being born the way he was), and Andy responded, “Baby, I always thought it was cute!”

I try to talk about the dark place I was in as a result of the words from the geneticist, and if I tell someone the story, the emphasis always goes on the fact that Andy was in it with me – that he saw my “flaws” as beautiful.  We had genetic testing done, and the TCS came from my father’s side of the family.  It all made sense – my hearing loss, my dad’s hearing loss – the small “Calhoun Family Chin” – but it didn’t make it easier.  It made it harder because I felt directly responsible for the challenges Drew would face in his life.  I still feel that way to some extent, although those waves of guilt don’t drown me anymore.  They wash over me in moments when I feel helpless and angry, but then I look at who Drew is and I have to thank the universe for giving him the personality he has because he can deal with anything.

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

That most of us, as humans and as parents, don’t know how to effectively and compassionately teach our children how to acknowledge and talk about people with differences.  I think most parents of able bodied kids have the right intention, but so many times, when children are staring and curious about Drew’s lack of ears or hearing aids (bone conduction aids that snap into his head), they stare and don’t know what to say.  Parents seem to rush to turn their children away and say “Don’t stare”, which then only makes the questioning child more curious and more confused.  We so often deal with the staring, the questions, the looks … that it is our reality.  But pretending it doesn’t exist by shepherding your child away from mine makes your child think that there is something “wrong” with mine.  As Drew has gotten older, we have learned how to address it with other kids and how to break someone’s stare.  We have a plethora of answers to questions and know that for young kids especially, it isn’t about cruelty – it’s about curiosity.   “How can he hear if he doesn’t have ears?”  And that is a legitimate question!  But telling them not to look – that just puts my kid into a box he doesn’t belong in.

So, as a rambling answer to the question – it has taught me that sometimes, despite my best intentions as a human to not make people who are different feel different – for many years, I did exactly that.  We have tried so hard to raise our boys to be compassionate and understanding, but a large part of that means acknowledging that differences exist and learning to celebrate the ways that people deal with those differences.  Different doesn’t mean lesser, and that is often hard to remember.

4.  What do you want people to know about TCS?

Wow – this is a tough one.  Appearances are deceiving.  It’s not quite ironic, but it is Alanis Morisette-esque:  Drew doesn’t have ears, but he can hear more about what is in someone’s voice than anyone else I know.  TCS kids are compassionate and beautiful beings who are so in tune with others emotions and experiences – primarily because they are so acutely aware of what it feels to be different.

That the syndrome is a part of my child, and myself, but it isn’t who I am or who Drew is.  Yet many people will define him that way because he looks different.

That TCS affects the way he looks – not the way he thinks or feels or functions.  I think that is one of the biggest misconceptions about craniofacial disorders – that it impacts one’s ability to think or process.  It doesn’t.  The bones in his face didn’t grow the way they should have, but his brain did.  He’s smart as a whip, as many other TCS kids are, and people underestimate his cognitive ability because he looks different.

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

Drew is outwardly fearless.  He loves sports, and he loves acting, and he isn’t afraid to be in front of anyone.  He is compassionate and caring, but relentlessly sassy and smart-mouthed (in a good way).

But that’s enough about him … let me talk about my other son here.  Michael is as affected by TCS as much as Drew is.  No, he doesn’t have it, but so much of our lives is touched by TCS that it is impossible to ignore the impact it has had on all of us.  After we had Drew, we struggled with the decision to have more children because I felt so guilty about the TCS.  So, we became foster parents and were gifted Michael, who came to live with us when he was 3.  We are so lucky to have found him, because he is the perfect compliment to Drew and to us.  Michael is 14, and while he is deep in the throes of being a slightly selfish teenager, he is so acutely aware of how singled out Drew is when we go places.  He gets angry on Drew’s behalf, and doesn’t understand why people are “so annoying” (see the teenager emerging?). He sees the stares and gets angry and defensive and protective.   But more than that, Michael has had to watch hours and hours and hours of Drew being first – for appointments, for conversations, for tears, for so many things.  He goes to school on days Drew has surgery and waits, anxious and scared, until we call the school to tell him that Drew is okay.  He knows more about medicine and surgery than he should, and he asks mature and amazing questions.  Andy and I have to work hard to make sure that he gets the time he deserves because he sacrifices so much to make sure Drew has what he needs.

So I love my boys and I love our life, and I am so proud of how they both see the world through the eyes of compassion and love.

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6.       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’m scared.  I’m so excited because I love the actors and I love the book and I love our life with TCS.  But I can’t watch the trailer without sobbing, because I see Auggie in Drew (or is it that I see Drew in Auggie?)  We have built a world full of love and protection, and now we are opening ourselves to the world.  People might say “That kid looks like Auggie!” or reduce him to just what they have seen on the screen.  But maybe I’m wrong – maybe the people who see it will be more compassionate and loving … I don’t know.   Andy is really excited about it, and Drew is too.  Both Drew and Michael read the book in class in elementary school, and that is another paragraph for another time.  But I think my mama bear instinct is coming out and I am just worrying unnecessarily.

But my biggest concern?  I’m an English teacher, and I beg the universe – please do the book justice!!!  Please honor the characters and the message and make it spectacular!  I trust that Julia Roberts wouldn’t make a crappy movie that didn’t honor the book.

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

Drew is a HUGE Drew Brees fan (from the New Orleans Saints).  I wrote to Drew Brees when he played a preseason game in Baltimore and the date coincided with Drew’s birthday, and asked if he could meet him.  He said yes. (Well, it was a slightly more complicated process than that…)  It was the highlight of Drew’s life, and it raised the bar for birthday presents WAYYYYY to high.   It was one of the first real times that I thought about asking for something special for Drew because of the fact that Drew deals with so much and asks for so little.  So, we got to go to Ravens Stadium for the Ravens/Saints Preseason game, and it was truly remarkable.  Drew Brees was amazing, and the fact that he took a little time out of his life to recognize the strength and challenges our son has – well, that was priceless.  I was glad I asked for something like that for Drew.  I can’t change a lot about his life, but I could ask for something little in return.

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On that note, I must say this.  It is so easy, as a parent of children who are different, to forget to take care of ourselves first.  I’m not good at that, so it is somewhat hypocritical to suggest, but so few people know what the daily challenges are.  Andy and I have struggled in our marriage because of the emotional and financial strain this can put on a family, and I am grateful to have a partner who shares the struggles and triumphs with me.  I am grateful to have a child (Michael) who doesn’t care that Drew is different (except to protect him).  I am grateful for this little life we have, but have to remind people – it isn’t always Facebook fabulous.  We have to make hard decisions about our child’s medical care that will affect them for the rest of their lives, and we do so after spending hours and hours researching and asking questions and trying to learn.  We struggle and cry and yell and scream, and we oftentimes forget to take care of ourselves.  Just because I don’t bring it up doesn’t mean I don’t need to talk about it, and just because you don’t know how it is doesn’t mean you can’t offer thoughts and distractions.  We have been lucky to have a really strong support system and soft arms to cry into, and I hope other TCS families have the same.


Beth- you are so beautiful and I will be forever proud I got to share this with our amazing tribe on this blog.

Sending everyone love, acceptance and kindness-

xoxo,

Eloise

Back to School

As you start your back to school rituals of new haircuts, countless trips to Target and uniform or clothes shopping, I’d like to urge you to sit and have a conversation with your littles before that first bell rings. What I am asking you to discuss is the topic of children with disabilities, children who look different, and the children who might get excluded, or sit by themselves at lunch. Sit with your kids while you still have the summer hours and talk about what kindness looks like in the classroom, the lunch room, and the playground. Talk about what they can do or say if they have any questions about another child’s differences. How should they ask if they want to know what those little boxes are on the sides of a little girl’s head? Or why her ears are small or why she wears that cool pink headband?

Talk about this “hard” stuff with your little ones before school is in full swing and you’re focused on homework and their new teacher, constantly looking through packets and cleaning out their backpack, and the schedule doesn’t allow for nightly conferences on such topics. I’m asking that you open the door to the conversation and see what they fill it with. Ask if they noticed a kid last year who was different, had a disability or simply looked sad often in the lunch room. Ask them if they’ve been in a situation where they were curious about a child and didn’t know what to do. Tell them it is okay to ask you questions, or even ask the child and give them the tools to be kind with their questions. Explain what acceptance and kindness look and sound like.

No age is too young to start this conversation. As children approach Pre-K (and sometimes sooner), these notions of what’s normal and “different” are forming. At 4-5 years old, girls and boys are looking more, pointing sometimes and want an explanation. Much of it is innocent, but some has an added layer of teasing or nonacceptance. All of it can be handled now, as soon as you can, with a conversation.

We sat the other night with my stepdaughter and asked her to reflect on her school year last year. Did she notice anyone with differences or disabilities? We gave her examples to trigger her memory- did she remember meeting or seeing any children with hearing aids like her sister’s, a wheel chair, someone who walked differently? We asked her if she recalls seeing any children sitting or playing alone often. We engaged with her on what she could do to make sure no one felt alone during the school day. What could she say to a child who was somehow different because of a disability (and explained what I meant by that word).  I also told her that I think it’s okay to notice the difference. It’s totally fine to ask how something works. She could also simply sit down and say hello, to be friendly and smile. We openly encouraged her to choose to sit with the kid who sits by themselves.

A lot of adults avoid these conversations because they feel it’s just too hard or maybe you worry you’ll say the wrong thing. Adults often tell their children not to point, don’t notice that difference, stop asking about that little boy and change the subject to avoid anything unpleasant. Inadvertently, adults often close the door to teaching kindness without even knowing it. By not suggesting our children make the kind choice to sit with another child who appears lonely or was made fun of by other kids, we are avoiding it ourselves. WE the parents need to give them these tools, not just the teachers.

Many of you have now read the book Wonder or watched the movie trailer that I’ve posted as often as social media will let me. Many, like yours truly, are struck by the scenes in the cafeteria when two different kids sit down with Auggie and they are friendly, joking with him and laughing together. One of the most poignant moments for me is when a little girl named Summer sits down with him and he says to her “you don’t have to do this,” and she is hurt by that statement, saying “I don’t know what you’re talking about, Auggie.”  I’m curious if any of you thought “would my kid sit down?” I wonder if you simply hoped so or believed they would. Possibly they would, but have you sat down and asked them? Have you talked to them about differences of any kind, not just what’s polite but what actions embody kindness? If not, it’s time.

In spreading kindness, acceptance and love, the conversation isn’t that hard after all. You might fumble through it at first, but that’s all of parenting isn’t it? Sit down, ask them questions and get them talking. It’s more important to try and start somewhere than avoid it because it’s possibly awkward or you worry about what you might say. Children are born to accept and love. Babies and toddlers do not see differences or disabilities. We teach them what to see, how to act, what to say over time and we can change the narrative in the school hallways. We can start with a conversation and spread our message of kindness.

Kindness is contagious, after all.

landon

XOXO

Eloise

 

 

This is Treacher Collins Syndrome: Meet Cassidy!

As I mentioned in a post last month, I’ve decided to branch out beyond telling only our tale and instead feature some of the amazing families I’ve been lucky enough to connect with whose children have Treacher Collins Syndrome (TCS). With the movie Wonder coming to theaters this fall, I feel incredibly passionate about trying to highlight the real stories of Wonder.  While the book and movie are things our community are incredibly supportive of, there’s nothing quite like the real tales these families have to tell.

TCS may be the reason we have all connected, but just as the syndrome does not define our children, nor does it does define what connects us. Our first family is a beautiful example of the kinds of parents I’ve met in the last few years. They are passionate advocates and champions of their daughter, but they  also have passions of their own, and lives that have nothing to do with the syndrome.  These are regular families all lucky enough to have a child that is changing the world in his or her own unique way.

The first family I’ll be introducing you to is Cassidy’s family.

  1. Tell us about your family!

We are a family of four, Dad is Jeremy, a 47-year-old General Manager of a well-established restaurant, Mom is Eva, a 37-year-old photographer who specializes in capturing images of newborns and toddlers.  Cassidy is an adorable, bright almost 5-year-old girl who has TCS and Cameron is a 2 ½-year-old boy who is in to everything and always on the go.  Our family also includes three feline fur babies named Keeker, Cali and Monkey.  We live in Massachusetts.

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

We found out after Cassidy was born that she had TCS.  Our OB/GYN team did not pick up the telltale signs in any of Eva’s ultrasounds.  Eva couldn’t wait for her next scheduled ultrasound to find out the sex of Cassidy so we went to a clinic in Boston to have an ultrasound done.  The clinic did 3-D ultrasounds for an extra fee and gave us a preview of it.  All that we saw during the preview was Cassidy’s back turned toward us.

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

What was at first perceived as a devastating blow to us was really the greatest gift from God to us.  Cassidy’s TCS has definitely made us more cognizant of what truly is important in life.

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

We feel the most common misconception about TCS is that those who have it are mentally challenged as well.

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

That at a young age Cassidy has accepted herself and acknowledges her differences and that God made her that way.

  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?

We are so excited that a movie of this magnitude is coming out and love that schools have the book on their reading requirement lists.  Should there be a film premiere for it here in Boston, we will definitely go to it with Cassidy.

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

We truly believe that Cassidy serves a special purpose in this world and is here to do great things.  We imagine that she will follow in Jono Lancaster’s footsteps and be an advocate for children with TCS.  She is an old soul, so much so that Daddy calls her his “little old lady.”

Thank you for sharing dear Eva!

Here is an amazing video featuring Cassidy, and done by the phenomenal folks behind Special Books by Special Kids:

Video care of Special Books by Special Kids:  http://www.specialbooksbyspecialkids.org/

To learn more about TCS, craniofacial differences and to even make a difference yourself in one of these child’s lives please visit the following sites:

Look At Us: https://lookatus.org/

myFace: https://www.myface.org/

Children’s Craniofacial Association: http://www.ccakids.com/

xoxo,

Eloise

 

Stress, my old friend

Slivers of sunset-streaked clouds are painted across our windows. I sit in peace, no television echoing, no children squealing or calling my name. I’m left in my thoughts, sitting amongst our treasured things- books, paintings, sketches and hand-drawn cards with Mommy scrolled across the top. This is a picture of peace, so why is it that all I feel is tension building. Stress, my old friend has returned.

It forms across my forehead, and when I attempt a deep breath, my toes curl under and I inadvertently flex my stomach fighting against relaxation. I’m oddly comfortable here- in the stress- living and feeling as though no one understands the complexity of my thoughts which at the moment are mostly fears. I know my circumstances are not special, they are not overtly unique. Many other parents have feared what will happen to their child and have faced insanely difficult medical futures with their littles. But this still feels isolating. It feels unique to me, to us, to this story.

During these times, I like to shrink away from socializing when I’m feeling this way. I actually think I prefer to be alone in this worry. To feel it all at once- anger, resentment, guilt, and now in the last couple of years… intense longing for my child. Raising a child seperately means time spent apart- an every other weekend cadence that I detest. While friends clamor up to us sweetly proclaiming they are jealous of our parentless existence, while we lazily sip our drinks poolside, what they don’t feel is the aching pit in my stomach, the tear that haphazardly falls from my eye without effort while I fold her tiny clothes in a childless room. It’s eery, I feel like their sweet little voices are embedded in that room- echoing off the walls as I open the closet door. As I sort their toys and carefully arrange Landon’s books, I’m careful not to disrupt formations of tiny toys left mid-play and untouched in the three days she’s been gone. This distance from her only magnifies this intense emotional state I find myself wading in.

The building pressure has returned. I’ve done a decent job burying it for a couple of years. It built up again before and after her last eye surgery, but with so much tumultuous separating and divorcing mixed into that time period, it was unclear what was being felt and for whom. Now, with a budding new family, beautiful and supportive love, this pressure around my heart, furrowing of my brow, clenching of my toes has all returned and I feel like it’s inevitable. Even with happiness, and a new sense of peace and love, this old friend I met almost five years ago has come back… just in time to face surgery again.

This sounds dramatic, I’m well aware. It feels, however, like we’re sitting at the base of this enormous mountain, one with cliffs, those annoying rocks that turn ankles, and dark trails. This massive unknown, arduous and complicated journey laid out before us. Very few if any we’ll ever know have traversed what’s ahead. But we have to go forward- for the better health and well being of the most important thing I’ve ever created… Landon. I am facing entrusting someone, truly a perfect stranger in the form of a pediatric surgeon, to purposefully hurt (by means of required surgical maneuvers) our child. And because I’m the author here, my baby.

The build up to Thursday where we learn the next surgical step is overwhelming. Just waiting to know how often, how badly, how complicated this next step will be. It feels, although it’s not true, that the other surgeries are looming more closely, almost on the heels of whatever is next.  That once we start with this first major surgery, the others fall right behind. Ear reconstruction- how, where, when, why? Baha implantation- the infections, and again by whom, where, when?

If I spend time focusing on what this will be like, look like, feel like upon healing her, on nursing her head, her jaw, her sweet face, I simply crack. She’s perfect, yet I know well that these surgeries will help. They’ll improve air flow, sleep, brain stimulation, hearing health, but I very well  may break in the process. I also feel violently protective of her lately. With this crazy thing that happened in the last two weeks, that I wrote about just before this piece, I feel more protective than ever before. And as always,  I want to be near her daily, miss her hourly, and feel … well, all of it.

I remember when I was young, being told to calm down… often. My emotional control was underdeveloped and I fell apart when things went sideways. Divorcing parents, losing friends, not so great boyfriends… I went into a tailspin. I had to learn to sort through and manage my high emotional IQ. It was not easy. Too many therapist’s couches and boxes of kleenex later and I am still searching for that meditative state of peace amongst complex emotions. And while now my control seems more in check, my ability to love and learn and still work hard every day is in tact. However, I wonder if that emotional sensitivity was always a part of me because she was coming. This uniquely beautiful and amazing child would require different love. Fierce, protective and advocate-style love.

So I sit, staring at this sunset, missing my girl and looking at the base of this mountain. Eric told me a story about a man who’d climbed Everest more than any one else and he said that it wasn’t the mountain that was the hardest part, it was the journey within one’s mind that was the most challenging (I’m paraphrasing here honey). So it’s not about the complexity of what’s coming, it’s how we (I) manage this next phase. What am I doing to show up every day to be the best for her, for Anna, for Eric, and for the rest of my world?  And not let our normal living and loving overwhelm me. Worrying and breaking apart isn’t going to soothe her as she heals. It’s not going to make dinner happen, shoes tied, to camp on time.

Recognizing that I’m struggling is healthy, working through it instead of around it is next.   For now, sending love and some very cute pictures.

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xoxo,

Eloise

Copyrighting, Disclaiming, and other necessary actions

COPYRIGHT © 2017 · THE ELOISE DIARIES · ALL RIGHTS RESERVED

The above statement now rests atop my blog. Most of you would probably never even notice it, or would possibly never wonder why it has suddenly appeared. But something happened recently which calls for it to be stated, and privacy and disclaimer language to be created.

Recently, images of my daughter and her story have been used inappropriately and publicly, in our hometown and within in a classroom setting no less. The person, feigning a relationship with me, spoke as if she had prior authorization to do so. She used Landon’s photo, her name, her hearing loss information, and violated her privacy as well as her parents’ privacy (not to mention HIPAA). To make matters worse, but is a distinctly separate issue, the same person later in a smaller setting pretended she knew things about me and our blended family. Did I mention she works at Landon’s school? Don’t worry, I’m handling it…

Listen, I write publicly about Landon and I am acutely aware of how much I share. BUT…. it is still my content. It is our daughter and it is our right to approve or deny the use of this content, images and all.

I have used this unpleasant experience to further educate myself on what I need to do to protect myself, Landon and what’s written here.  I now have that statement and will house the following information on the blog as well. To make it more widely known,  I am also posting it in the bottom of this post.

Basically, you don’t have to read the below disclaimer or privacy statements. You can simply choose to respect me and my entire family- which absolutely includes Landon’s father and Anna’s mother.

Blog Disclaimer:

Content:
This is a personal blog. All opinions expressed here are my own and not those of anyone else. I am responsible for the content – not anyone else.

Changing my Mind: 
Over time my thoughts and opinions may change. Posts are intended to give insight into my life at the time the post is written, but not necessarily forever. Current posts may express different opinions than earlier posts.

Accuracy of information:
The information in this blog is provided “as is” with no warranties, and confers no rights. I’ll do my best to make sure all of the information, including links, are accurate at the time of posting but there’s no guarantee that information posted today will still be valid or accurate in the future.

Copyright: 
Since most everything in the blog comes from my brain, and the photos belong to me unless otherwise noted, the content of this blog in its entirety belongs to me. If you would like to re-post something I’ve written, I ask that you link to this blog and give me credit for my content. If you want to use the photos, content or information provided here in any other format, you must get my explicit permission to do so.

Personal Offense:
I promise to try my best not to knowingly injure, defame, or libel anyone.

Comments:
Feel free to express your opinions in the comments section, but understand that I have approval on what comments are posted and what is not posted.

 

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(Photo is by Good Graces Photography.)

Thank you,

Eloise