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.

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Sending love and hope into the world today.

xoxo

Eloise

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.

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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.

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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.

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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.

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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!

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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!

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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.

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Life with an open heart

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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,

Eloise

Dear Parents

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

 

Five.

Dear Landon,

Today, you turned five. FIVE! This morning as you climbed in my bed at 6am sharp, and snuggled your little body next to mine, I hoped aloud that you would always want to start your days that way.

This past year has been full of incredible experiences and seminal moments for you and our new family. You have surpassed toddler-hood and entered kid-dom, yet you will still excitedly grab older toys or books and proclaim that they’re from “when you were a baby.” This year you’ve continued to conquer making new friends and now keeping old friends. Your burgeoning confidence has emerged, propelling you forward in your little classroom. You began playing soccer, learned to swim, and are mastering the balance beam at gymnastics. You fell more in love with Star Wars and discovered there might be another Disney character besides Elsa to love. You still carry small toys with you most everywhere you go- from Troll dolls to My Little Ponies, Moana and sometimes C3PO. Yet still, your love and devotion to Lenny the lamb is paramount.

Most of all, you and I celebrated our love of two others this year. You once again became someone’s daughter- an adoring stepdaughter to Eric. And of course, you formally became a sister. I say “formally”because you and Anna have behaved as such since you first met one another. You love so easily, sweet girl, and our growing little family is also made to laugh and delight in your jokes, dance moves and hilarious stories.

As I similarly have reflected in each of your birthday letters thus far, your spirit and love have inspired me to become active in helping raise awareness for rare syndromes and hearing loss. This gift, one inspired by your spirit and beauty, has made me realize my true self. Your determination, courage, intelligence and quick wit prove to me and countless others that people should never underestimate you or anyone else with a syndrome or hearing loss. You proudly maneuver through everything with your bahas and operate them almost all on your own now. I am so proud to be your mother.

May you always continue to be as unique, generous, loving and determined. You are my light. You are my joy.

“I carry your heart. I carry it in my heart.”

I love you, sweet girl. Always. 

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This is Treacher Collins Syndrome: Meet Logan!

Treacher Collins has become this incredible way in which I’ve been able to meet people all over the world. Facebook and Instagram have been these wonderful mechanisms for connecting me with families who have changed me, helped me, lifted me up. I cannot wait for Landon to eventually connect with some of these amazing children and adults. These families’ stories give me the opportunity to say “me too!!” excitedly and our beautiful children are just one way we’re able to connect on so much. What’s amazing about the family I am thrilled to introduce you to is that we connected through a mutual friend and our children were born just a month apart.

The next family within our Treacher Collins tribe that I’d like to introduce you is Logan’s family.

  1. Tell us about your family!

Hi!  My name is Nicole Killeen.  I’ve been married to my husband, Matt for 6 years.  We met in college and got married 4 years  later.  Matt is a police officer by day and a volunteer fireman by night.  He enjoys boating, the beach and spending time relaxing by our pool.  I am a high school Business Education teacher in our area.   I enjoy spending time reading and relaxing at the pool and beach.  Our son Logan was born on August 30, 2012.  He is such an outgoing, loving, FUNNY little boy.  Logan will do ANYTHING for a laugh and loves spending time with Mommy, Daddy, and his 2 dogs (labs) – Bailey and Jameson.  He absolutely LOVES trains.  He enjoys when he gets to go to the train station and watch trains go by.  He also loves firetrucks and police cars and wants to be a “train driver and fireman” when he gets older!

  1. Did you know your child had TreacherCollins Syndrome (TCS) before he/she were born?

We did not know.  They thought they saw a cleft palate at my 20 week ultrasound but they brought me back in and did not see the cleft.  Logan was born WITHOUT a cleft palate but we wonder if they started to see some characteristics at this point.

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

It has taught us to be strong.  It has taught us that God only gives us as much as we can handle.  Most importantly, we have learned that every child is unique and beautiful in their own way.  Logan has a wonderful personality and makes us laugh daily.  He is a character to say the least. He will do ANYTHING to make you laugh.  He always has a smile on his face which keeps a smile on ours even on the hardest days!  Our 4 year old is a true inspiration to my husband and I.

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

That these kids are different and are “sick.”  Logan is a NORMAL 4 year old boy with just smaller facial features and a speech delay.  He enjoys life just like every other 4 year old boy.  He plays, eats and learns like everyone else his age.  He just has to do it with a hearing aide on!  He enjoys playing and learning just like all his friends.  These children are FULL of life and live life to the fullest – they may have features that look a little different than other kids (smaller ears) but they sure are an inspiration to everyone around them.

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

We are proud at how strong and tough he is!  He had his first surgery (Jaw distraction) when he was only 3 months old.  He has been a tough cookie ever since. You would never know when he has a simple fever (yes he runs a normal 103 fever)  and he acts 100% normal.  During Christmas break last year he fell and needed multiple stitches.  The doctor was shocked that Logan didn’t even flinch when he started stitching. He just laid there and didn’t make a peep.  The doctor said he’s the only 4 year old he has dealt with that didn’t even flinch!  He sure if tough and teaches us all about life and how to be strong!

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

We personally can’t wait!  We actually did a lesson on movies and entertainment in my high school Sports and Entertainment Marketing class.  During this lesson we look at different trailers for different movies. I introduce my students to TCS and Logan during the first week of class.  During this particular lesson I reminded them about Logan and the struggles we go through on a daily basis – then showed them the trailer.  This class was my crazy, talkative class – but during this trailer EVERY SINGLE STUDENT was silent.  They listened, watched and then clapped and cheered at the end.  It was an amazing reaction that I will NEVER forget.  This made me even more excited to go watch the movie.  My best friend and I plan to go see the movie the day it releases with our husbands.  We are counting down the days!

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

We’ve had a crazy few years.  During my pregnancy, my husband Matt was involved in a car accident while on duty (as a police officer.)  He broke his pelvis and tail bone.  He left the hospital and had to do rehab before he was able to come home due to learning how to walk again and using a walker and wheel chair.  He also broke his hands so he had a special walker he had to use.  It was a VERY long few months.  I had to leave my job and take care of him 100%.  At this point, I was about half way through my pregnancy so I was pregnant, having to teach my husband how to walk again.  It took him 3 months to learn how to walk again and then finally get the okay to drive.  He got the all clear to drive approximately 3 weeks before I went into labor.  Luckily, he was able to drive me to the hospital when I went into labor.  We smiled and thought – after all we’ve gone through  the past few months its all behind us and we are ready for our baby boy to be in our hands.  Unfortunately, when Logan James was born it didn’t go as smoothly.  When they looked at me and said something was wrong I thought my world was over.  I didn’t think anything could go wrong – we already had my husband almost die when I was pregnant – this was the light at the end of the tunnel – there can’t be anything wrong. …. and then Logan was taken to the Children’s Hospital of Philadelphia with my husband at 10 hours old and I had to stay at our local hospital.  It was tough – but looking now – it was all worth it in the end.  He is a special little boy – and he’s ALL ours!  He has taught us more about life than anyone ever could!

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Thank you Nicole, you and your family are such beautiful examples or love. Sharing your story will no doubt inspire so many others.

Sending you so much love.

Xoxo,

Eloise