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

Seeking Light

I press my face into the soft, donut shaped pillow and take a long, three-count breath. I try to steady myself, push the anxiety, tightness in my stomach and pressure in my temples away. I must lock the grief, frustration, and the acute work stress somewhere to allow this bodywork… to actually work. I inhale as a barely visible needle is placed down my spine, then another and another. I hate needles… I think to myself, I must be crazy. My acupuncturist squeezes my hand and checks my pulse; her calming manner and inspiring words encourage me to give in. To give myself over to this new world of unique self-care. I gently close my eyes and allow the pressure of the glass suction cups on my shoulders to melt into my skin.

Someone asked me just this week what the red circular marks were all over my back. My answer confounded them. “Well… I can’t keep a pregnancy, so I’ve decided to do just about anything someone advises me to try. I’m taking about 7 types of vitamins, two styles of Progesterone, they’re telling me to eat animal protein, exercise with weights to build testosterone, acupuncture, therapy, meditation, cupping which is what leaves the marks. I could easily be made into a Saturday Night Live character.” As I looked up, her mouth was open… “Oh honey”… probably more information than this acquaintance had bargained for. I have no filter for this period in my life. I am slowly realizing that I am wearing this experience all over me, which means I am probably not the best at a party. Alcohol makes me cry. My babies’ faces make me cry. The love permeating out of their beautiful eyes reminds me how much I want this again.

I have not written for a while, contributing to an overall sense of imbalance. The truth is, when I pause long enough to think of what to say, it has not been all together cheery in the last six months. The compliment I receive on my writing is typically that despite the struggle, I find the light and positivity by the end of any post. Given the ride I have ridden since last October, positivity and light are things I have had to work very hard to find and in small increments. I know I have climbed into this car willingly- seeking another chance at motherhood- a chance at this experience with the unique and mesmerizing love I have in my now husband. Yet when the car has hit the edge of the road and careened wildly out of control, I have been oddly unprepared emotionally. One would think that multiple miscarriages would prepare the brain for repeated loss. It does not. One would think that I would be able to protect my heart from the acute sadness in seeing a newborn baby nestled on a mother’s chest. I cannot. So here I finally sit, blog open, heart exposed to tell you how it’s been.

I’ve been pregnant off and on for six months as many of you well know. My body still carries the reminders that this was not some awful dream. My abdomen is still strangely swollen near the scar that bears a reminder of having Landon, my hips still struggling in my smaller clothing. I still grow oddly quiet when I see babies on hips, the mothers curiously looking at me as I gaze at their children with tears in my eyes. I have finally come out of the clouds this past month, following my pattern of grief that eventually I find more peace each day. My car eventually clicks back into the lane as I press forward. Preparing my mind and heart for another try at this.

In choosing to fill myself with all forms of self-love recently, I have also found my meditation practice to be an incredible gift – almost like hitting the reset button on my anxiety. Before this new practice, I walked around in a haze, not wanting to claim my everyday life. The stress from my job, the details of each miscarriage has clearly had an impact on my body and mind, and I have not been exactly living a life of light, balance and passion. As for meditation, I would do it intermittently. I have never had anything resembling a practice… until now. For once in quite awhile, I can more clearly see what passions I want to pursue career wise again. I am lighter and smile more often. I actually am living my mindfulness mantras.  While the clouds have begun parting, one deep attachment has stuck.

When I wake most mornings, I immediately I crave one tiny, indisputably precious face to kiss, her little body to hug. To replace the loneliness for a baby, I have found myself longing each day for my Landon. It is more fierce than usual… she must sense it. Her five-year-old brain is rife with ways to get what she wants, and I am sure she knows she has me where she wants me. When she is not at our house, tears hit my eyes the instant I find one of her ponies or fold her tiny clothing. The intensity of my love for her is palpable. My need to see her is beyond a normal mother’s connection to her child. It is an almost desperate need to make sure she knows her mother loves her, and to see before very my own eyes that I did indeed create this child. It is living, talking proof that I was successful at carrying her and that I could do this. For some of my week, I get my wish, and I get to wake both girls up and take care in picking bows and socks. The other days, the emptiness settles against my chest, my furrowed brow remains creased and I push forward through my day. While this has eased in recent weeks, I certainly know that I hold her longer and probably tighter than my usual hugs and I certainly ask for more of them.

My dearest acupuncturist, wellness coach, and therapist — all three tell me to make space for the grief. Saving space in my heart for loved ones is a natural thing. Creating space my heart for grief is less comfortable. I would rather workout, take a bike ride, read, even go to work than sit with grief. It feels futile and wasteful, but without facing grief, it simply follows you around like a nagging fly buzzing around your head. And it caught up to me two months ago. I sat, tears streaming, in front of Eric and desperately could not catch my breath. He walked me through a breathing exercise, a gentle reminder that when you feel you cannot control the world, what you can control is your breath. You can always return to it. While we’ve done these exercises before, and certainly have done yoga classes infused with breath coaching, I’ve not done a long exercise and it work quite like that one did. I was fascinated.

This journey for me has been twofold. In the first phase, I craved isolation, terrible television shows and my velvet couch. I can wallow with the best of them, but rarely sit and allow myself to think and feel the pain. Instead, I fill my brain with whatever Netflix thinks I might enjoy. Since the binge watching and couch snuggling were getting me nowhere, I finally stopped dancing with the idea of meditating regularly, and actually started doing it. Some of my nearest and dearest have said they cannot make the jump to practice. Hey, my shelves are full of books with good intentions too. However, my wellness coach sat across from me recently, showing me data from my very own cells and made a compelling point. My hormone levels have bottomed out. Almost all due to my stress levels in the last five years. My self-care has truly only involved exercise and it is no longer enough. My cloudy headspace and anxious core are no longer acceptable if I want to create a positive place for new life. I have realized that if I want to find daily happiness, I need to find my breath.

So how does one start meditating when the pace of your life interrupts any quiet you find? For me, who focuses on the logistics, I had to make some shifts. I wake up earlier and my sleep routine sunsets with a body scan. I also needed a coach and found one in my favorite Mediation Studio App. Why try all these things? Why not just trust that biology and regular old science can make this a baby happen for us? Frankly, I have never been one for settling for convention. Who is to say that these ancient forms of medicine, balanced with studying my cells and necessary supplements, are not the path to the good kind of sleepless nights? There is a beautiful Rumi quotation and one I shared with Eric in the infancy of our relationship.

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This wound I have had for almost a year now, this place I have sought to heal with exercise, wine, bad television, this place that still hurts… is important. This wound is how I will grow. This is allowing me to realize how I want to soon make a living and spend my days. This wound has taught me a mindfulness practice that I longed for these past ten years. While it’s new, I’m certain of its impact. From this journey, beautiful things have begun to emerge. Along the way, I have begun returning to myself, begun to once again love this imperfect body, and forgive myself for the fact that my past and current stress has hurt me and made pregnancy harder. I am learning to leave the shame alone, not to grab it and wrestle with it as before. I am learning, and what a beautifully simple gift that is. Here I am now, seeking light, and marveling at the journey along the way.

Namaste friends,

Eloise

Who has time to be depressed anyway?

There’s no convenient time to be depressed. Someone needs you to fasten a doll’s skirt, finish the presentation, find their doll’s shoe, think five steps ahead of your manager to try to anticipate what will be needed next, remember it’s free dress day, hand you their water, do research on business as a platform, find a lovey, remember it’s a half day, make dinner, try to be a good wife, and oh have another miscarriage.  Lately my dance card has been a balancing act of executive meetings, attempting to be a good mom, and secret physical and emotional agony. Cramping and other horrific things that happen when you miscarry, have to be secondary because people need you to keep your shit together. No 8 or 5 year old wants their pancakes with a side of mom sobs.

So just when I thought maybe the anger and emotional roller coaster might skip me this miscarriage, I found myself putting waffles on the table, while Eric has been out of town, and running upstairs to sob to my best friend in my closet. A short while later, I come down and put on my brave face and try to forget for the day. But when the sisters try on their bickering pants, I am crying behind my sunglasses. “Naps for everyone I exclaim!” As I crawled in bed yesterday, I finally admitted to myself that I might be losing the parenting battle.

This is Eric and my second loss. My third miscarriage all together. The cycle for these last two has been a quiet sadness, when I first think something bad might happen, followed by short breaths as if I possibly move less or live a quieter life that I can make it stop. When this does not work, and this hope for another child is gone, it’s accompanied by the inevitable, intense physical pain, and then two to three weeks of emotional fall out. I intend the last part to be dramatic on purpose. I fully fall into depression as my hormones plummet, and I’m parked there as we speak. This is an I-don’t-want-to-get-outta-bed sadness and when someone asks if I’m okay, I can’t even fake it. “No, not yet,” I say or in the case of this morning: “No, my husband is out of town, and I need to workout and I still look pregnant” style of unloading I did on my poor friend at Pure Barre today. Sorry Lauren.

Who has time to be depressed? I feel like it has to fit into my trips to the bathroom to change the incredibly ridiculous pads I have to wear.  I remember when I’ve struggled before, way back pre-Landon in my twenties and even then it still seems like a selfish waste of time. Back then when a completely different type of loss surrounded me. I recall talking my dog to the park and losing my shit on a bench overlooking Sheep’s Meadow. People scurried away from us and Kingsley licked my salty tears for an hour. I could just sit there as I had all the time in the world to feel as sad as I wanted to. Now, in this life I’ve wanted for so long, it feels even more insane to be depressed. I read one of those quotes this morning that while it rings true, it’s also kind of annoying at the same time…

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Okay, yeah I get it, I remember. Thanks Instagram. I have a loving husband who says all the right things, and also actually really cares. I have two beautiful girls who love me and love each other (most of the time). I have a naturally born daughter who has made me the absolute best version of myself. I have a great job, and am recognized daily for what I contribute. I have a family who is considerate and wildly helpful every day- thank you Nunu x 1,000. And friends- mostly far away who love loudly and comfort me even when I’ve woken them up with my phone calls. This loss isn’t dismissive of the beautiful things in my life. It’s simply a loss that cannot be ignored. I learned last November, after a full month of grief, that it absolutely takes time to heal your head, heart and body. What you have doesn’t heal you, it’s patience, love of others and mainly love of self. It’s my therapist, and quiet moments with this blog. It’s walking on the beach and crying into the ocean. It’s telling your tribe that you are not okay and letting them in. It’s all of these things and more, since I learn more about what grief is each time this has happened. So while this weekend’s emotion has surprised me, even when it really shouldn’t, I’m trying to just be gentle on myself. Depression is what it is, and I can’t find my way out by pretending it’s not happening.

I say this each time, but I mean it each time. If you have experienced loss, I see you and love you. I also cherish your lost due dates and feel your pain when you see other happily and easily pregnant women. I understand the roller coasters and am here to say, “me too” to not feeling okay. I’m in it now and I am accepting that depression does not wait for a convenient time in your life. When it arrives, you can try to welcome it and handle it with patience and love.

Onward dear friends. Hoping to see you on the up and up very soon.

XOXO,

Eloise

Welcome to Holland

This piece was shared with our Clarke School therapy group around Thanksgiving a few months after Landon was born. I remember holding my tiny girl and crying over her while Melissa read this aloud.  I looked around the room, all of the mothers with tears in their eyes, and we nodded to one another. Our eyes telling one another… I see you, I understand you, I love you and your child just as he or she are. It was one of the most beautiful days at Clarke, and that is saying something. I was reminded that I posted it five years ago and wanted to revisit it again with you today.  It’s amazing to think back to that time five years ago. I was bewildered, anxious, and wracked with worry. Tears came so easily, protection and strength emerging while I was filled with tremendous love for my girl. I was only on the brink of our journey to Holland, and this author’s words move me today even more than they did then. This story allows me to feel less alone while beaming with immense pride. What a wonderful gift.

Welcome to Holland – c1987 by Emily Perl Kingsley. All rights reserved. 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

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xoxo,

Eloise

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