Tag: tcs

Dear Parents

As I sipped my coffee early this morning, I casually scrolled through my Facebook page. Buried amongst the copious amounts of baby pictures and political posts was an article from a local Idaho paper. The article was regarding a father’s Facebook post detailing the senseless and cruel bullying his son endures because he has Treacher Collins Syndrome. Dan, Jackson’s father, details what his son has lived through- the intensely cruel name calling, the brutal physical abuse, and he painfully describes that this abuse has driven his eight year old son to consider ending his life.
 
My heart is broken. I sat quietly this morning for the better part of an hour, tears rolling down my face. The emotional reaction wasn’t only because I worry this will happen to my child, it’s also because if a child with TCS feels pain – we all feel pain because one of our tribe has been brutally hurt.  I don’t know Jackson’s parents and I’ve only now written to his father.  But, when I study Jackson’s sweet smile, his perfectly shaped face, I see Landon.
 
Syndromes like TCS have incredibly similar facial features so that we may realize that we are one tribe. Each child belongs to us to help support, love and make sure that if they endure pain at the hands of others that they hear from us that they are loved.
 
Last weekend, while visiting family, we went to an art fair. Booths lined the roads with trinkets, clothing, paintings and games. Our girls immediately saw baskets of prizes and rushed to get in line to spin a prize wheel hosted by a local company. As we approached, a boy seated next to the prize table locked onto Landon’s face and  grimaced. His arm stretched out before him and his finger pointed directly at her. “What’s wrong with her eyes? Do you see them?!” he yelled toward his father. His father immediately grabbed his arm and twisted the child toward him, leaning in for the lesson, reprimand, nothing that we could hear. I stood behind our girls and ushered them up to the table. I helped navigate the choice of fidget spinner, glasses or lollipop while Eric went over and introduced himself to the father. While Eric worked to create empathy and share kindness with the seemingly embarrassed dad, the boy was wailing from whatever his dad had said. We left quickly afterward, but I turned around, trying to catch the boys’ eyes to smile- an attempt to show him we were just another family. They had moved and we didn’t see them again. As I read Jackson’s story and recall the finger pointing at Landon, it’s easy to fear the world in which these children live. What I choose instead is to try to teach, to ask more of the parents I know and who read my stories here.
 
Parents, I implore you alongside Jackson’s family to sit this weekend and talk to your children. Many of you have emailed me the beautiful stories of conversations you have had with your children. You have generously shared comments your kids have made about wanting to be Landon’s friend, about how they plan to help change their classroom or school. But here I am asking again, because these conversations are required of us regularly as parents. Not once and done, but as a part of our running dialogue.
 
Tell your children Jackson’s story, show them photos of Landon and talk about how she loves Trolls and Moana and hilariously does the chicken dance when music plays. Tell them how these completely normal children with kind and open hearts are sometimes treated like they don’t belong. They are treated as outsiders simply because their cheeks rest lower than theirs. Their eyes are smaller and they may need help hearing with hearing aids.  But these same children love and want to be loved just like your children do- just like we all do.
 
Ask your children if they know any children in their school that sit by themselves. Ask if there are children that have any differences that they’ve noticed. Hearing aids or different sized ears, and listen to the stories they may tell you. Teach them ways to show kindness. Describe what actions they can take to live a life of inclusiveness. If you and your family haven’t read Wonder, buy it here. Encourage your children to read it and talk to you about how it makes them feel, what have they learned, and let their natural kindness lead the conversations.
 
Children are not born to see differences. No one in Landon’s three years of school has yet to even notice something different about her except that they want a headband just like hers. One dazzling child has exclaimed that she wants bahas too. They learn to notice differences and judge them because we aren’t engaging as parents on how to understand them, nor are we giving them the tools on how to respond with kindness and love. We avoid these conversations because we think it will be too hard to navigate or assume they teach this stuff at school. I am asking you now to change that today.
 
I know there are a million things on our plates as parents. I know that the world is also a very scary place in so many ways right now. But this, this is also important. These are all of our children.  Look at us, hear our stories, imagine yourselves as the parents of sweet Jackson. And ask yourself, how can you help us in our mission to change the world? How will you teach kindness to your family
 
Below is Dan’s Facebook post:
 
“My heart is in pieces right now…my soul feels like it’s ripping from my chest…this beautiful young man my son Jackson has to endure a constant barrage of derogatory comments and ignorance like I’ve never witnessed. He is called ugly and freak and monster on a daily basis by his peers at school. He talks about suicide…he’s not quite 8! He says he has no friends and everyone hates him. Kids throw rocks at him and push him shouting these horrific words…please please take a minute and imagine if this were your child. Take a minute to educate your children about special needs. Talk to them about compassion and love for our fellow man. His condition is called Treacher Collins. Maybe even look it up. He’s endured horrific surgery and has several more in the coming years. Anyway…I could go on…but please educate your children. Please…share this. This shouldn’t be happening…to anyone.”
 
Image may contain: 1 person, smiling, child and closeup
 
And to Dan, as I wrote you earlier this morning- I see you, I hear you and I am sending you more love and continued strength. Jackson- you are one handsome devil. I would love nothing more than to meet you one day and cannot wait to write a letter with my children and send it to you. You are all loved very much.
 
xoxo,
Eloise

 

Eloise Thome1 Comment

A letter to my pregnant self

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I found this photo this weekend while going through my hard drive. I have not seen this since I wrote Landon’s birth story, I don’t think. Looking at this picture is equal parts delightful, nostalgic and also very painful. Painful for what this girl doesn’t yet know, and what will inevitably tear her heart in half. 

What would I tell this girl if I had the chance to speak to her? I see the innocent, genuine happiness on her face. I see her anticipation of what she’s wanted for so long… a baby. A family. I see and can still feel the hope she had for this family… of finally putting the past behind her and having a fresh start.  

If I were to write her a letter now, after what I know, here is what I imagine I’d say.

Eloise…

My dear, you might want to sit down. There are some wildly wonderful yet terribly terrifying things about to occur in your life. In just a short month and then a crazy quick two years, what you envision, how you imagine your life unfolding, and the safety you so badly crave is just not going to be.  

At this moment in time, in this photo, you’re worried about how swollen your ankles are starting to get, how unbelievably large your ass has gotten and you are so stupidly worried you’re not beautiful anymore. How I wish I could change those unhealthy thoughts. It’s not that you won’t still struggle with similar thoughts in the future, but my goodness… this is a time when you should feel your most beautiful. 

You are still struggling with your greatest fear being realized by the one person you thought wouldn’t hurt you. You are still convinced that if it happens again, you’ll just fall down and die. Like many others, the promise of a baby quells those fears. As if the concept of family could truly fix a couple’s problems. On top of that you have also been thinking about what would happen to you if something were to happen to your baby. You’ve been reading the tougher, less talked about chapters of your baby books about “the syndromes.” But.. you have also quickly diminished your fears because your numbers are good, and the baby’s sonogram pictures look so perfect.

I guess it’s time to tell you that both of these fears, your worst kind of fears, well… they are going to come true. Before you start freaking out, let me make sure you understand you’re going to be fine. You’re also going to actually be happier than ever before, but not before your heart breaks wide open. You will hit rock bottom, but you’ll make your way back up again. It’ll take time and there will be days and many nights when happiness or “normalcy” seem far away. 

As for that bundle who is about to be born… you’re going to love this child like no one else ever could. SHE (yes it’s a girl) is going to shock you with how brilliant she is, how capable of learning, of speaking, of laughing she will be. You’ll worry before you even open your eyes most mornings. That worry will pay off though when you will inevitably know more than some specialists as well as therapists. You’ll feel often that you’ll never know enough, never understand all you should to be her mother. But… my dear… you were born with all you need to know to be her mother. The rest is just additional knowledge you’ll gather over time. Patience… 

You are going to have to learn the definition of advocate. That will mean countless hours in waiting rooms, time spent on the internet in the middle of the night, of following up when you will not hear back. You will have to rearrange everything- work, friends, your life, your sanity.  It will mean leaving NYC and the comfort of having access to the world’s best doctors. You’ll leave to try to build the family you have always hoped you’d have. But that too will not end up looking like you had envisioned. 

I am so sorry, but you will also lose a pregnancy. A baby you hadn’t planned for, wasn’t sure you wanted yet, will be gone at the same time you realize you want nothing more than to be a mother again. The intense pain from the loss will be deeper because you will recognize what else will soon be lost – your marriage. The past pain you felt many years ago will return. Your greatest fear will be realized. You’ll feel like an idiot, you will feel like you had also known all along this was coming. And you will know what to do. It is actually going to surprise you how strongly you handle it, but it certainly will hurt. Of course… it will hurt like hell. But your past pain will serve you greatly. It will remind you that you are crazy strong. One of your songs will remain true “but the fighter still remains.” You have fought for Landon, now you’ll fight for yourself. 

You’ll have to get comfortable with those who want to stare. Children and adults will stare at Landon’s hearing aids, her eyes, and sometimes her ears. Adults will stare at you.. now a single parent and wonder what your story might be. They’ll feel pity and you’ll see it in their eyes as they glance at her, at you, and your empty left hand. Smile back because your true friends, your tribe, will love you both unconditionally. 

Those years you were taught mental toughness by coaches in high school and college will pay off. The determined lacrosse player in you will resurface. You will persevere. And you’ll have to remind yourself you are capable… often. Some weeks will be easier than others and the same goes for days or nights. This roller coaster that has defined your last decade will continue. That’s just how it goes, honey, so settle in for the ride. And be patient when the pain returns, it means that you aren’t done learning from it yet.  

You’ll find great solace through moving meditation of yoga and running. Go forth and make sure you do what’s necessary to breathe light and love into the pain. And you will start to leave it behind. 

My dear, you are capable of great things. Of great love, of compassion, of forgiveness. Don’t hesitate when all three enter your heart. 

XOXO

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The thing about Wonder

So I finally did it… I finally read Wonder. I just sat down on Sunday morning while Landon nuzzled next to me on the couch and read it. For years now, when folks hear about Landon’s syndrome, most people offer “have you heard about the book Wonder?!”. This question is sometimes accompanied by an I’m-so-sorry-for-you glance or even a I-know-how-hard-this-must-be stare because of this book.

But until now I just didn’t want to finish it. I started last summer. I cried at page 3 and thought “Nope, not going to purposely make myself cry anymore right now.” Part of me didn’t really want to read it because living it was certainly different than a tale of fiction. The other part of me hesitated because this was written by a random author, NOT by a real parent or family member or person with Treacher Collins. When I heard that the author simply saw a child one day with TCS, and she and her family fled from the store prompting her to reflect and then write the book… I had a hard time even looking at the book on my shelf.

And then I realized, this author, this book, this story that “teaches kind” is exactly what this world needs. It’s THIS book that may change each and every middle school out there. THIS story that might make school life for Landon happier and more full of kindness.

Now, I’ve spent time with the story. I’ve cried with the characters and the painful words the children call Auggie. I really marvel at how much research this author must have done. And I now love that she took her own missed opportunity for a teaching moment with her kids and is in turn teaching the world how to choose kindness.

This book also provides peace of mind for us “special” parents. We face this vast unknown in sending our kiddos off to school. With headlines about bullying and remembering how tough middle school even was for ourselves, THIS book now gives us some solace that KINDNESS is being taught in the classroom in a really cool way. It’s prompting discussion and debate and they are spending time on this during the school year. THIS is huge.

My heart will break 1,000 times before she even reaches middle school. When every child stares and points, when every parent shuffles them by while glaring themselves yet not choosing to teach their kids better. When kids are mean to her face. I will now think of this fictional boy who is teaching the world SO much love. This book is teaching us the basics and what it’s like to choose kindness at such a young age. And I marvel at what this book can also teach adults.

So, my friends, please read this story. Please read it with your kids when it’s time. Talk about how it made them feel. Talk about how it made you feel. And then pay those feelings forward.

xoxo,

Eloise

Eloise Thome1 Comment

Different

Landon and I spent the morning at the Aquarium. She ran from tank to tank squeeling as the fish swam passed. I marveled at what that first sight must be like for her as she pressed her whole face against the glass of the large tank. We slowly meandered through the areas and patiently listened to the visiting symphony play on the main floor. It was one of those rare magical mornings.

As we left, her little hand nestled in mine, we slowly approached a family blocking the stairwell to our car. I noticed a teenage girl standing in front of the stairs and saw her mother carrying a baby carefully down.

The girl was trying to speak to us as we approached. She looked passed us, down at the floor but I could see something in her face, her eyes. Slowly and repeatedly she tried to tell us something. I smiled- reassuring her mother that whatever issue or possible syndrome her daughter had… I was a knowing and friendly mom.

After a few minutes the girl leaned in and said “your baby is so, so, so pretty.” “Her, her eyes, are different. Something very different with her face. She’s different.”

Her mom shifted with very nervous body language. As she tried to pull the girl closer to leave with her, I moved closer to them and beamed. “Thank you,” I said, “she is different and I think that’s what makes her incredibly special, don’t you?”

“Yes, yes” the girl replied.

It was short, it was simple, but it was a beautiful moment.

Happy weekend friends.

Love,

Eloise

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Calling all Parents…

If you are ever going to read anything I write… I implore you to read this one. Sit with it for a while. Digest your emotions and what you will do if this is your child. How will you respond to a teachable moment?

As Landon stumbles into the restaurant, she veers left knowing that’s where the booster seats are parked. Smiling all the way, she throws her little body upwards, climbing into the seat all on her own. Bo casually strolls behind her, beaming at how self sufficient his little girl is. As they settle into their table just outside the playroom, Landon busies herself with reaching for things, looking at the slide in the playroom and asking, as always, for Elmo.

Most children notice Landon. It’s a natural curiosity when they see the hearing aids, the headband, her ears. We’ve grown accustomed to it. Even a while back when I described the silent staring teens, it was just staring. What happened next is the first of its kind in our world. The first time the world was cruel to my baby’s face.

While waiting patiently for their food, a commotion erupted a few tables away.  Bo heard him then.  A boy, 8 or 9 saying something about our girl. As if in slow motion, the boy walks right up to Landon with another girl in tow.

“Ewwwwwww, look! How disgusting is she?!”

The words hung in the air, he said, as rage filled Bo’s body. “WHAT DID YOU JUST SAY?!?” he shouted at the young boy.

Fumbling for words, realizing that my husband’s tone meant trouble, the boy backtracked physically and audibly to explain he used his words wrong. His mother, sensing something must have happened, came over and quickly ushered him out of the place. They left and the altercation was over for all that had overheard. It was over for everyone else except Bo and his parents, who sat quietly and let what happened wash over them.

The encounter, that I didn’t even witness, has found a deep, dark hole in my heart and is resting there. One day this may happen and she’ll understand his words. She’ll know what names are said and that she’s being treated badly by a perfect stranger who knows not even her name.

So far we’ve lived in this bubble of silent stares yet nothing worse. The kids that play with her at her camp adore her. They rush through church and the gym to greet her. They save her favorite book for her and hug her when they see us in town. It’s the happiest bubble that protects our hearts. 

This is a game changer in my endeavor to share our story with the world. This is the moment when we need to change the conversation.

What would you say to your child if he said that?

What would you do if your child asked you what was wrong with that baby?

I heard a story that the author of Wonder is a parent of one of those inquisitive kids. She told this reporter how she was eating ice cream with her child and someone just like Landon and Auggie walked in. Embarrassed by her inability to articulate the differences in another child, the author rushed quickly out of the store and avoided eye contact with the boy or his own mother. She later reflected on how poor of a choice that was for her and wrote the book as a tool and way to celebrate differences. Well since we’re not all authors…

I think it’s important to recognize these awkward times when your child asks something innocent and honest of you. When they ask questions about a child like Landon, I believe the BEST thing is to be honest and kind. Tell them that that child is beautiful and God makes us all different on the inside and outside. What’s most important is seeing the beauty in everyone. Treating everyone as we’d like to be treated. Embracing differences because we ourselves are very unique as well. If you’re so bold, ask if you can introduce your child to the other kid. Meet the mother. Look her in the eyes. Smile. It’s hard to form those words sometimes as you rethink if you’re saying it right. Saying them at all…is all that matters.

Most importantly, find a way to address their comments or questions any way that suits you. Have an open heart. Talk about it instead of shoving it under a blanket statement as in “don’t say that”! and leaving it there. You’ll get so much farther shaping their ability to accept and not bully by going the extra mile to discuss.

And to the little boy and his mother from today…. you should count your lucky stars I wasn’t there. I will pray for you tonight- that you should find manners, grace, kindness and the ability to learn to accept others into your hearts.

Love,

Eloise

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