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

Coming Soon- This is Treacher Collins Syndrome: real stories of Wonder

Beginning this month, I’ll be featuring a story about a family with a child with Treacher Collins Syndrome (TCS) every month leading up to the movie Wonder’s release this November.

I’d like nothing more than for our tribe, and these wonderful families’ tribes to expand leading up to this movie. I want as many members of the audiences of this film to know more about the real Wonder families, who we are, who these children are, and carry those stories and faces with them as they see this movie. I have no doubt the movie is incredibly well done, and I do trust that it will represent an amalgamation of our real stories. This story is fiction, however, the characters are deeply relatable versions of all of us. Therefore, you need to know the real families.  So stay tuned, I can’t wait to introduce y’all!

Now grab some kleenexes and enjoy the Wonder trailer here…

XOXO,

Eloise

One step at a time…

Yesterday, we moved one step closer to some answers we’ve been asking since Landon was born- it was time for her first CT scan. When she was born, we had several doctors tell us she needed to have one done. While I lay there two days post partum, a flurry of doctors who traveled in packs of four would cruise in and out and proclaim a list of tests she needed (or was having) and I vividly remember the CT scan conversation like it was nothing. “Ct scan needs to be soon! Schedule it now!”  After discussing it ad nausea at the Clark School and with other supportive “special” parents… I knew we would wait.  There was no reason to do it then- she was too little, it was too much radiation for a 6 lb baby and her father and I knew she didn’t need it yet. Surgeries wouldn’t occur for years, but doctors can be so pushy sometimes and not always with necessity. Alas, we waited and I’m so glad we did.

And yesterday… Landon killed it. She was amazingly still, put her “brave face” on, and was in and out in 10 minutes at the most.  Truly, it was shockingly easy in the end. To prepare, we actually learned what the word “still” meant, and played “statue’ where she practiced freezing while her step-sister tried to make her laugh. I walked her through what it would be like- a machine that looks like a huge donut would be above her little head and she would get to lie down to play the statue game. I made sure she knew she could bring Lenny the lovey and that I’d be right by her side.

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The night before and the morning of the scan we also talked about who we thought was brave. “Moana! Moana is super brave when she walks toward the fire monster and places her face on her face. Moana saves her island and is brave with the water. Also Hei Hei is really funny. Momma, I’m brave like Moana!” Thank the world that Moana exists and my girl can esteem to be just like her. Seriously, thank you Disney for this one- parents definitely approve- but I digress. As we talked through who we thought is brave, she of course mentioned Anna her sweet sister, and I told Landon I thought that she was the bravest kid I’d ever met. She beamed and moved her eyes from side to side. She stood a little bit taller I like to think after that conversation.

So… why do a CT scan now? Well, in conjunction with a sleep study we’ll do June 3rd, Landon’s ENT wants to be able to give us some clearer direction on what’s next for her so we can strategize and schedule her surgeries appropriately. The CT scan will tell the team what’s going on inside- the structure of her inner ear in particular.

Here is even more detail in case you’re wondering:

The scan will allow the otolaryngologists (ENTs) to “see” into the middle and inner ears to understand the internal anatomy. From the scan, they will grade the her ears’ anatomy on a 10 point scale to determine if canalplasty (opening the ear canals) is an option for improving her hearing loss.  This 10 point scale is called the Jahrsdoerfer or “J” scale and was developed by Dr. Robert Jahrsdoerfer.  The “J” scale is broken down on the following point system:

Stapes bone 2
Oval window open 1
Middle ear space 1
Facial nerve 1
Malleus-incus complex 1
Mastoid pneumatization 1
Incus-stapes connection 1
Round window 1
External ear 1
Total Possible Score 10

If an individual rates a 7 or higher on the scale (70% out of 100% chance of having hearing restored to normal or near normal range), he/she will most-likely be a candidate for canalplasty.  Usually, if the individual rates a 6 or below, canalplasty is unlikely an option.  However, in some cases some individuals may still be candidates even with a 6 rating depending on the actual anatomy of the ear.

Because Landon has Treacher Collins Syndrome and not just microtia atresia, she is most likely not a candidate for a canalplasty because the anatomy of someone with TCS is usually far too small to qualify. The critical importance of following these specialists’ advice on this is that a canalplasty poses a significant risk for damaging the cochlea. So, we’ll know where and what her surgical future may look like with the designation on the scale. We’ve not yet decided if we’re doing microtia repair and building new ears, but if there’s a good chance for a canalplasty that’s a large piece of this microtia puzzle.

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Next up will be the sleep study. That night they will cover her little body in nodes and watch her sleep while analyzing her air flow. Given the (probably abnormal) amount of sleep stalking I’ve done since she was born, I’m fairly certain she has some form of obstructive sleep apnea (OSA). It is also very common for anyone with TCS because of their traditionally small jaws (called micrognathia) and therefore the tongue rests far in the back of her throat and obstructs air flow. We will know after this study the severity of the apnea and then be able to discuss (using actual data!) whether she needs a tonsillectomy, adenoidectomy (or both) or the full monte… a jaw distraction or “mandibular” distraction surgery. That would involve making the lower jaw larger by lengthening the lower jaw bone and relieving airway obstruction. That last surgery there… that to me is the most terrifying surgery in all of the TCS related surgeries. It’s invasive, it’s extensive, it’s painful.

But… knowing more of her surgical future can allow us to prepare for the what, when and begin the conversation of where. We’ll have more questions following these answers, but have studies completed to be able to get those other opinions. The absolute hardest part in this is not moving ten steps ahead and being consumed by the what-ifs. What if she has jaw distraction surgery? Who is good enough to perform that surgery? Do we use someone in Charleston? In NYC? In Philly? Do we take a chance with a canalplasty if she scores a 6 on the J-Scale test? How many opinions do you get before you make a decision?

The weight of the future decisions has settled somewhere deep in my chest. The emotional recall is quick so if we talk about it, there’s a very good chance I’ll end up in tears. Don’t think I don’t want to talk about it, and don’t assume you’ve caused the tears,  but there you go… that’s your fair warning. I currently feel like I’m emotionally stuck together by some duct tape and bailing wire. The only way to live, however, is as if these concerns and future decisions are not looming. I have to show up every day for my family and be source of love and fortitude. I have to show up at work and be on my game for everyone I support with work alongside. I believe that’s how I can show Landon what bravery is like outside of Disneyland. Life is about showing up. Isn’t that the old sports adage thrown around in pre-game huddles and on inspirational posters in offices from the 90’s? And it’s still true today- that and one day at a time.

There you go my friends and tribe members… that’s the latest on Landon’s medical life and why there are a few more pictures lately in doctors rooms or hospitals on my Instagram. Thank you for your love and notes of encouragement. We have certainly managed to have a lot of fun lately as well and some of those pictures are below. I’ll certainly try a little harder to keep this thing updated as this blog always serves as a wonderful space to exercise my thoughts and (hopefully) help those going through similar things with their little ones.

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Sending you love-

xoxo,

Eloise