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Dearest Landon,

I’m so sorry this letter is late sweet girl. I have written your birthday letter to you at the close of each birthday for five years now. This year, mommy got super sick, then we had to deal with lice in our house AND evacuate because of a hurricane all in the last week. As usual, we celebrated BIG so I didn’t think you would mind if mommy was late with this funny letter I give you.

This has been a special year for you. In this last year, you have truly rooted yourself into being a sister. There is no “step” about it either, you are truly a 100% committed, adoring little sister. Your fierce love for her is beautiful, mimicking most of Anna’s unique moves and literally following her footsteps around this world. Yet you’ve started to find your own voice especially if related to toys. Speaking of finding your own voice, you really have found your own confident voice this year. I learn from you all the time sweetheart, and when you stood up for yourself to those mean boys, I was in awe. I’m always proud of you and this day was extra inspirational.

As if transfixed by sparkly rainbow magic, you have fallen deeply in love this year with all things unicorn, horse and pony… My Little Pony to be exact. You are all things rainbow, glitter, unicorn, Equestria Girls and My Little Pony. You are currently toggling between Rainbow Dash and Twilight Sparkle as your fave but your dedication to characters each year continues to impress even me.

Your ability to crack me up never ceases to amaze me as well. You have said things like “whoa that blew my mind” and “I’m thinking on something” recently. I need to start writing them all down as you crack me up daily.  As for other new things you’re trying out… you finally acquiesced and have joined us in liking tomatoes, hummus, ice cream, chocolate, granola and more. You are daring and I love how brave you have become in all aspects of your life.

You’ve taught me how to be brave since day one. In having you six years ago, I was reborn as well. I believe I had this in me all along, but in becoming your mother I’m able to see more clearly what matters, how I want to spend my waking hours, how much of that time I want to rededicate to be with you and experience life through your eyes. You’ve taught me the healing power of love and that in showing your dad love as co-parents, we are all happier and healthier people. Loving you is the easiest thing I’ve ever done and in loving you it shapes our unique blended family. In loving you, I found out what happiness truly is. You are love.

As always, I carry your heart… I carry it in my heart.

XOXO,

Momma

Healthful Chocolate Oat Bars

With our first day of Kindergarten for Landon (!!!) around the corner and Anna’s first day today, I wanted to make something easy that has energy for their little bodies, but was free of all the junk in granola bars in stores. Also, Landon’s school is peanut free. These puppies are flourless, gluten free, peanut free (as long as you don’t add the nut ingredients in the optional section of course) and vegan! Landon ate hers in record time, so kid tested today and thumbs up.

Ingredients:

• 1 1/2 cups quick cooking oats

• ¼ cup blonde coconut sugar

• 1 teaspoon baking powder

• ½ teaspoon kosher salt

• 1 teaspoon ground cinnamon

• 1 teaspoon vanilla extract

• ½ cup unsweetened almond milk

• 1 flax egg- directions below

• 1 Tbsp (7 g) flaxseed meal (ground raw flaxseed)

• 2 1/2 Tbsp (37 ml) water

• 1 tbsp coconut oil

• 1 large mashed banana. Done this with 2 bananas also and they are just as good

• 1/2 cup vegan semi-sweet chocolate chips

• Optional: ¼ cup creamy almond butter; coconut flakes; sprinkles; chopped walnuts

Directions:

Flax Egg:

1. Add flaxseed meal and water to a dish and stir. Let rest for 5 minutes to thicken. Add to recipes in place of 1 egg.

2. It’s not an exact 1:1 substitution in every recipe because it doesn’t bind and stiffen during baking quite like an egg does. But I’ve found it to work incredibly well in pancakes, brownies, muffins and many other recipes.

Healthful Chocolate Oat Bars:

1. Mix together the quick cooking oats, light brown sugar, baking powder, salt, and ground cinnamon. Add in chocolate chips and coconut.

2. Add in the vanilla extract, almond milk and flax egg. Mix the ingredients together.

3. Then add in the mashed banana, and if using almond butter add it here. Combine all the ingredients.

4. Pour the mixture into a lightly greased 8 by 8 inch metal baking pan. Bake at 350 degrees and check at 20 minutes. When I add more ingredients, it can take up to 25 minutes.

5. Let cool for 15 minutes, cut and enjoy!!

Back to School – The Kindergarten Edition

School is beginning. For us, this momentous day is two weeks from yesterday. In thirteen short days, my precious girl will walk into her Kindergarten classroom for the first time. Gone is the safe, well known and loving bubble of preschool, followed by a brand new and darling little school full of new little faces.  Last Sunday, after Landon and I sat and made our “before summer ends” list, I sat and watched her carefully color her favorite characters. I studied her tiny hands, the methodical ordering of her toys who watched the bright colors fill the page, her sheepish grin as I kissed her precious head. I found myself wanting to wrap my arms around her and keep her small. Maybe if I keep her here longer, nestled against my chest, time won’t actually pass and the safety of our home can envelop us both. I want to ferociously protect her heart, and make sure the whole world sees her brains, her beauty and how much more she is than her bahas or a syndrome. I can’t of course… I know this. Even us semi-helicopter parents (or occasional hovercrafts) have to let go and send our children out into the world’s wild adventures.

This school year includes a world of big kids, their big ideas, big questions and possibly big stares or hugely hurtful comments. While starting the school year brings about butterflies for little ones and long school supply lists for parents, the top thing on my list is to encourage discussions or letters teaching kindness for your kiddos.  This advice feels more poignant this year. I sit here not only on the precipice of my child entering the throngs of Kindergarten, but I am also a parent who has had to watch and live through some of our first big kid, tough and hurtful situations this summer.

This summer has been punctuated by sunshine, sunscreen, swimming, snuggles, Skittles, family love and unfortunately some truly unkind comments.  As I shared in an earlier post, our first camp of the summer got off to a plain old terrible no good start. As recounted by Landon and partially by the camp, we came to understand that there was pointing and mean spirited words thrown in Landon’s face like confetti. Although she stood up to the boys and defiantly walked away, she told me days later that the same kids followed her around saying things and laughing. Laughing to her face, a cruel finger pointed in the air. So we settled into a different routine, a different camp and her brightness quickly returned upon finding new friends and free afternoon fun. Her immense pride has beamed since that awful week, as we rightly showered her with love and praise from the confidence she exuded.

We had moved on in conversation in our house, having found our new routine. Yet the subject returned just last week as our family went to the water park for the day, as is tradition to break up the haze of beach week. As our collective of parents milled about counting the cousins and making sure everyone had sunscreen, my step-daughter strayed from the brood and headed over to us. “Those boys, over there, they called Landon ugly. We all heard it.” I looked over at the girls and Landon was already rushing back for another turn on the slide. When she came out, I studied her face carefully asking if she was okay, did she want to talk about it. She looked up and smiled, shrugged and said she wanted to go on the slide again. Completely unaffected… this child just wanted to play… no time for nonsense boys. Her older cousins stunned, one into a fragile state of hurt and defensiveness, and sweet Anna and our older cousin escorted Landon the rest of the day. Meanwhile, I stalked around the pools, staring at the boys, until Eric calmly talked me off my aggressive ledge. Nothing was mentioned later, no questions and comments from her the rest of the week. While etched on my heart, those immature kids’ reactions didn’t impact her whatsoever. If only I had her superpower.

Instead, my attempted superpower is to inspire fellow parents to talk to their children. On the brink of a new school year, what would I tell those boys of summer if I had a chance to calmly talk to them? If I knew them well enough to have a chat, how would I try to coach them to be brave, to show kindness and acceptance? Where would I begin?

Hey kiddo,

With school starting soon, I want to talk to you about two really important words- kindness and bravery. You’ve probably heard that you should be kind to your family for instance or your dog. And when you think of bravery, you might think of superheroes like Superman or Batman, fire fighters and so on. However… did you know that being kind IS being brave? I think that as a kid, showing kindness to others – like other kiddos that might look or sound different than you- that is one of THE bravest things you can do.

One of the kindest things I can imagine is standing up for someone else. Whether at school or around town, you might see another child and he or she might have glasses, they might wear hearing aids, have one arm, maybe he or she is in a wheel chair… I know that might sound pretty different than you. What I bet though is that they are actually just like you. They probably love Minecraft, Transformers, Power Rangers, My Little Pony, Legos, their dog. They probably love tacos and pizza and watching movies. What is also cool is that you can ask them really simple questions just to understand things a little better. Kindness can still sound like a question, you know? For instance… what are those button-shaped things by your ears? Why are your ears smaller? Does your wheelchair get to go fast? Questions are okay, especially if you are just curious and you do it with a kind voice.

Now what if you, yourself had something pretty different about you, how would you want another kid to treat you, say at school? I bet you’d want kids to just talk to you like you’re any other kid. I bet you would want them to invite you to sit with them at lunchtime in the cafeteria, to play at recess, to just be a friend. Some children have things like hearing aids to hear better, that’s all. They can run, laugh, swing, skip, play video games with the best of them. Things like pointing, though, pointing is just not cool. Pointing, laughing, using words like ugly… those actions are just plain ugly. Those actions are not brave. They are nothing like how real superheroes act. The real superheroes in fact are more like the kiddos with differences- who have had surgeries and have awesomely bionic hearing aids that allow them to hear just about anything.

My point is in all this is that kids that might seem different aren’t different at all. If being brave and hanging out with real life superheroes sounds awesome this school year – than choose kindness and make a new friend. There is simply nothing cooler than being kind and being brave. Oh and I hope you join us at the playground some day, we’d be happy to have you.

xoxo,

Landon’s mom

 

 

 

 

Wonder Girl

Tonight, it happened… we had our first big girl conversation about her ears as we drove home from camp.

“Mommy, this boy, he was chasing us around and then stopped. He pointed and laughed at me. He LAUGHED at me- he didn’t like my ears!”

I inhaled a slow breath, as a dull pain rose in my throat. “How did that make you feel?”

“Sad,” as she fumbled with her My Little Pony. “I didn’t like when he laughed.”

“What did you say to him or do?” I asked in my calmest voice.

“I said… ‘Well, I LIKE my ears!!’ And I walked off to tell my counselor. We didn’t play with him anymore.”

As immense pride rushed out with the breath I’d been holding, “Wow! That’s AMAZING and exactly right. You LOVE your ears. We all do. I am so so proud of you.” My face full of light, amazed yet not surprised at all by this precious, confident five year old girl. She’s listening when we tell her that she embodies greatness, that her body, mind and heart are all beautiful. That her ears are cool and bahas amazing inventions. That she is love. She is listening to it. And now, she is living it.

I celebrated her even louder the whole way home and onto the swings in our backyard park. She giggled at Eric and happily ran around with the frisbee, not even knowing that my heart had broken open even wider as I marvel at who she is. She is truly a wonder. #landonglover #sheisawonder

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