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…


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.



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.





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.


  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.


  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.




Life after Miscarriage: While I grieve, I hope

As I opened my eyes this morning, I reached down to my abdomen and gently rubbed my hand from side to side.  As has been a customary practice most mornings for the past month and a half, I wake up by saying good morning to what would be coming next June. This morning I suddenly flinched from painful cramping and my tearful eyes opened, remembering suddenly that it’s all gone. Sleep was thankfully welcome last night after taking something at the doctor’s office yesterday for the procedure. So welcome in fact that I’d forgotten what had happened, dreaming instead of a sandy blonde baby on my hip with Eric’s brown eyes and my oval face. The reminder this morning was like a cruel joke the universe plays on mothers who lose pregnancies- physical pain to match the emotional.

Yesterday morning in Pure Barre I instinctively excused myself to the bathroom. Although there were very little warnings signs this time, I had a dreaded instinct. Maybe things like this are why they call it “a woman’s intuition.” There I sat, while the loud music blared and watched the bright red warning sign appear. Scurrying out of the building, I stumbled into the dark, freezing parking lot. It’s happening. It’s happening again. I sat in my car for a minute recounting what it felt like three years ago- guilt, sadness, pain, relief, confusion and intense physical pain. It was such a complicated time back then, so different from my life now. Remembering my mental state years ago  brought on loud sobbing that filled the empty parking lot. I had always thought I’d lost that other pregnancy because it was too complicated of a time and marriage, but this one… born out of immense, life changing love was SO wanted by us both. It was something we’ve wanted since we first met, and something we planned for and loved from the moment we knew.

I quietly began to drive home, and called Eric. I couldn’t speak, my voice caught in my throat and I knew he knew. “There’s blood, I finally sobbed. There’s a lot of blood.” He calmly breathed deeply with me so I could drive carefully. I began actively breathing as if doing one of our meditations… maybe by being calm nothing would happen to the baby I thought. After hanging up, I begged with the universe “Please don’t take it, please. Please stay, we love you, please don’t leave.” I called my mother and hearing her loving voice continued to help increase my hope. She also tried to calm me down and helped me get over the bridge home. Having experienced several miscarriages in her life, she knows just how complicated the pain really is. She reassured me again… there was still hope. We didn’t know yet and just needed to take one step at a time.

Laying back while the ultrasound began, the doctor had the mobile sonogram machine facing her, as she slowly moved the monitor toward me, my face crumbled and tears streamed down my face. The egg sack was empty and the embryo with the flickering heartbeat from two weeks ago had vanished. There was nothing but a vacant home for where our baby should be. Pain ricocheted through my body as a confirmation- it was over.  Once we were alone, our sobs broke wide open. After pouring tears into each others’ shoulders, we looked up with love and reminded one another that we still have so much hope. Hope and so much love to give to the future, to our two girls and what might still be some day. For now, we have to grieve the planning, the names on our lists, the visions and dreams but while we grieve, we hope. Hope doesn’t quiet the pain however, it doesn’t soothe me as I sit here and cry into my sweatshirt. But having it out there, like a beacon for what might still be… is one of the healthiest things I can think to hold onto.

Since a miscarriage’s emotional pain is always coupled with physical pain, I then had this aptly named, pretty horribly sounding procedure. A manual vacuum aspiration is different than a DNC in that you can stay in your doctor’s office. As we waited for the medication to settle in, a sweet older nurse placed her hand on my knee “I’m so sorry honey.” She turned to my kind and darling Eric, “honey can I get you anything?” And in that question she made sure to remind him he’s a part of of this as well. We are enduring this loss and pain together as one team. He thanked her and we settled in for what was to come next.  The details too fresh in my memory and too gory for my own literary taste, I will mention that as horrible as yesterday was, very kind and loving people helped us begin to close our most recent chapter- one where we were a party of five.  At the very end of the visit, the doctor sat with us and reminded me of the statistics, some I’d learned years ago.

One in four pregnant women have a miscarriage. While this data point softens the grief slightly, I recall being shocked back then that I didn’t think I knew a single friend who’d had one. Or did I? I sat down after a week and wrote a piece on my old blog. I had women from all over the spectrum of my life reach out with “me too’s” and encouraging notes. Why had I not known how many people I loved had experienced this complicated loss?  We talked for about a week around the physical and emotional assault our bodies endured, but then all of our discussions were neatly tucked back under the rugs, put back on their shelves in our hearts, not often mentioned again. But, I found myself at a party very recently, while I was secretly 8 weeks pregnant, talking to a new friend about her miscarriages. She spoke with so much hope and determination that each one isn’t a setback but instead a reminder that her body can do do great things and of her desire keep trying. I also very recently nestled in a corner of another get together and talked to my darling friend about her trials of IVF for 6 long years. The incredible tales of these families- husbands and wives alike – and all we go through for love, for our desire to spread our love and desire to nurture into this world.

Friends, loved ones, let’s not hide our losses. Let’s not feel we must grieve these painful losses, setbacks and struggles alone. Let’s not live in this world of secrecy anymore. The more we give voices to what we go through to have children, the more we can possibly normalize miscarriages, loss and struggles to conceive. And maybe by raising our voices up together during these times, the less we will feel alone and the more hope we can resurrect… together.

I commit to discussing it more often, to bringing an end to my own silence. I will need your love and support now and in the future as my fears will certainly surface whenever we do try again. For now I will continue to breathe love and hope into this pain and welcome your love and anything that any of you wish to share as well. So to celebrate the joy we felt in recent months, here are photos full of so much love and enduring hope.


Sending love and hope into the world today.



This is Treacher Collins Syndrome: Meet Jaxon!

I am thrilled to revisit our series  “This is Treacher Collins” today. With the movie Wonder rapidly approaching, I have spent quite a bit of time reflecting lately on what it means to me to be a part of this community. When the team of doctors strolled into my hospital room and told me Landon had “what they thought to be” Treacher Collins Syndrome, I asked them to repeat their words about three times. When they followed the diagnosis with other even more foreign words to better describe it- microtia atresia, craniofacial, distraction osteogenesis- I remember vividly feeling more lost than I’d ever felt before. That loss of control and intense desire for answers led me to eventually seek some sense of community. Amazingly, Facebook provided the answers I thought I could only find from the medical community. Parents from all over the world were there to happily answer questions, while always taking the time to remark how beautiful they thought my baby was. In their stories and advice I not only found answers, but also probable timelines, a way of organizing my worrying and most importantly I found hope. My goal in sharing these amazing families’ stories is to pay that hope forward in any way that I can. To share more “me too” stories as well as shine a light on how every family- syndrome of not- is just like these families. As we continue to spread our message of kindness, spending time with these stories and sharing them with your children will make the story of Wonder even more real and even more important. Please enjoy meeting Jaxon today…

  1. Tell us about your family!

We are family of 4. Jason ‘dad’ works for a gas/oil production company, Nikki ‘mom’ is a Kindergarten teacher, Kaleigh Rae ‘big sis’ is going into 4th grade and Jaxon Vance ‘lil brother’ is going to be in Kindergarten. Jaxon is all boy!!! He hits the ground running in the morning and doesn’t stop until he slides sideways into bed at night. He is our comedian that keeps us rolling. Kaleigh is his ‘other mother’ and the best big sister that we could have ever imagined for Jaxon.


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

Nope. We (the 3 of us) went in for our 20 week ultrasound to see the gender and do the anatomy scan. I remember Jason jumping out of the chair when they announced it was a boy. Then the tech turned to us and said there was something she needed to tell us…but couldn’t until the doctor came in. He looked over the ultrasound and told us that Jaxon would have some facial abnormalities. So for 2 weeks that’s all we knew. Then we started the 3D/4D ultrasounds every 2 weeks. Our doctor could only tell us that Jaxon would have a pretty extensively wide cleft lip and palate. Of course that was news we didn’t plan to hear, but we quickly accepted it and made plans on how to help him once he was here. On the day Jaxon was born Jason handed him to me and said, “Momma, he doesn’t have ears.” At this point I knew there was more to Jaxon’s story than expected. Shortly after we were scheduled to visit our Craniofacial team in Austin and they confirmed the diagnosis of TCS.


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

We are better-  better parents, better people, better Christians, better friends. In whole, we have become a better family! This experience, our life, has taught each of us that even though we may have struggles and hard days from time to time because of TCS, we can get through anything together. Jaxon has taught us patience and acceptance of differences in ourselves and others.


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

We tell everyone we encounter that our story of Jaxon is an open book. We encourage people to ask questions. Our philosophy is ‘Knowledge is power’. We would much rather talk about Jaxon and answer questions than have the awkward stares. Kaleigh has done an awesome job with this. When another child encounters Jaxon and ask about his BAHAs she is quick to tell them that God gave Jaxon little ears and the doctors gave him these ears. We have learned that as soon as people start asking questions they quickly realize that Jaxon is no different from any other 5 year old little boy.


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

Since adding Jaxon to our family, we have been blessed to randomly meet some really good people. Our community has shown us so much love and support. Jaxon has more friends and “fans” than we could have ever imagined. We have had complete strangers come up to Jaxon and visit or stop us to tell us how awesome he is!


6. How do you feel about Wonder– the book and the upcoming movie? And do you have any special plans to see the film in November?  

We are excited about the book/movie. First off, we LOVE Julia Roberts and we know that any awareness of TCS that will come from this will be positive for us and everyone like us. We definitely plan to see the movie! We would love to fill a theatre with all of our family and friends to experience it together!


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

Jaxon is strong, handsome, funny, caring and athletic. He gets attention because of TCS but he makes people fall in love with him quickly. He is resilient and has a personality bigger than Texas. We can’t imagine our life without our little guy.


Life with an open heart


I live pretty much with my heart on my sleeve. It’s not the world’s most comfortable place to keep such a thing. With my emotions exposed, I walk this life with immense vulnerability. When something happens- a purposefully cruel message, challenging conversation with a boss or co-worker, someone isn’t kind to my child, or when the ultimate betrayals occurred with my ex-husband,  I have felt these emotional responses longer than what I have always perceived was normal.

I vividly recall having been told by those closest to me not to feel so much, not cry so hard, to keep it together. I’ve been bullied by people that were supposed to accept and love me to “drop it” or “dead it” or repeatedly asked “why do you care so much.”

With my 37th birthday looming, I’ve done some deep, introspective work lately. I’ve meditated more- sometimes for 5 minutes in my car at lunchtime, sometimes pulling over to catch my breath after a rough day, and have written many unpublished pieces  exploring who I am to those I love. In this work I’ve been trying to identify things that I want to improve about myself. How to be a better mother, wife, stepmother, daughter, friend. While exploring these concepts, I keep circling around this concept that I wish other people didn’t affect me as much. Other people have recently tried to throw some of their misery and fear in my lap, and in turn I’ve cried, felt awful and generally just been sad. If only my heart wasn’t so open. If only I wasn’t this vulnerable to what these people said or thought, I’ve said to myself many times.

This morning, upon reflection, I’ve realized that I’m done apologizing for my vulnerability. I’m proud of how much I love other people and how much I try my best to lead with a pure, open heart. I’m proud that I am passionate and emotional. There are certainly destructive paths I’ve gone down to quiet my resentment and pain. I’ve lashed out at others to hide my shame and enormous disappointment. Frankly, I’m done with these uglier ways of treating myself. I’m done with fighting against my nature of living emotionally and I’m tired of the shame of what’s happened to me in  my life. I’m tired of be ashamed of my lack of relationship with my father, and what happened in my first marriage. I’m proud of how I still have an openness to love and the ability to feel things.

I do need to recognize the beautiful good that exists while I process tougher emotions. This perspective is so critical to anyone’s well-being (thank you for the amazing reminder this morning Haley). But I want us more emotional people, who feel that our hearts are sewn on the outside of our clothing, to stop with the self loathing. We need to stop with trying to cover up or apologize for feeling our way through this one life we all have to live.

There will be others trying to shed their own pain near us all, and it’s up to us how we handle that. Do we handle it with our own defensiveness? Or do we find empathy for what they’re experiencing instead. I’m working on that second part at this very moment, and in the meantime I will continue to accept who I am. Bleeding heart and all.

Sending you truth tellers lots of love and hopefully open-hearted inspiration,