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

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

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

 

This is Treacher Collins Syndrome: Meet Beth and Drew (and their family)

When Beth sent me this post the other day, I stopped in my tracks as I read it. I then proceeded to re-read it 6-7 times over the next day. What floored me was how similar Beth’s story of Drew’s birth was to Landon’s birth story. My husband Eric and I marveled at how many similarities there are in here between stories, hopes, fears that we both share.

Beth’s courage and open hearted writing is exactly what I wanted for this series. I deeply want to connect anyone that reads this blog with the beautifully raw, real and awesome stories of families touched by and living with Treacher Collins Syndrome. I want each of you to walk into the theater in November or curl up with the book Wonder and carry these families in your hearts as you see, hear and read Auggie’s story.

Settle in and ready your hearts for Beth’s tale. She and her husband are sharing their story with vulnerability and in doing so they are teaching us so much about love and kindness. I am honored to share their story today and more excited that you get to read it.

1.       Tell us about your family!

(This is Beth): My family – a 3 ring circus!  Andy and I have been married coming up on 15 years, and we have 2 athletic and energetic sons – Michael, who is 14, and Drew who turns 13 in August, and who has Treacher Collins Syndrome.  We also have cats and dogs, and a penchant for getting ourselves involved in too many sports and spending a lot of time on sidelines supporting each other.

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

This is a tough one.  I have TCS, a milder form, but no doctor ever put all of the pieces together.  I wear hearing aids because of the undeveloped middle ear bones, had jaw surgery as a teenager, wore glasses … and Andy and I talked about Drew maybe having to wear hearing aids, because my dad did also.  But no one ever uttered “TCS” to us.

I ended up having a c-section because Drew was super happy where he was and I was 2 weeks late.   The silence in the delivery room when they took him out was something I hope no other parent ever has to experience.  The delivery room nurse said, (and this is an exact quote) “You have a boy.  There is something wrong with him – he doesn’t have ears – and we don’t know what else”.  And then they whisked him away.  That moment in movies where the baby gets placed on your chest and you bond?  It stayed in the movies.  So we waited.  Almost a full day after he was born, we had very few answers and then a geneticist came to see us in our room.  The geneticist, along with several medical students, stood and looked critically at Drew and said, “Oh!  He has Treacher Collins Syndrome.  And he gets it from you!” (And pointed right at me.)  I was stunned.  I didn’t know what to say, so I think I asked how he knew that, to which he responded, “You have a small lower jaw and your left eye is droopy.”  I turned to my amazing husband and said, “Does my left eye droop?” (because that was where I was mentally – I then KNEW I was responsible for Drew being born the way he was), and Andy responded, “Baby, I always thought it was cute!”

I try to talk about the dark place I was in as a result of the words from the geneticist, and if I tell someone the story, the emphasis always goes on the fact that Andy was in it with me – that he saw my “flaws” as beautiful.  We had genetic testing done, and the TCS came from my father’s side of the family.  It all made sense – my hearing loss, my dad’s hearing loss – the small “Calhoun Family Chin” – but it didn’t make it easier.  It made it harder because I felt directly responsible for the challenges Drew would face in his life.  I still feel that way to some extent, although those waves of guilt don’t drown me anymore.  They wash over me in moments when I feel helpless and angry, but then I look at who Drew is and I have to thank the universe for giving him the personality he has because he can deal with anything.

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

That most of us, as humans and as parents, don’t know how to effectively and compassionately teach our children how to acknowledge and talk about people with differences.  I think most parents of able bodied kids have the right intention, but so many times, when children are staring and curious about Drew’s lack of ears or hearing aids (bone conduction aids that snap into his head), they stare and don’t know what to say.  Parents seem to rush to turn their children away and say “Don’t stare”, which then only makes the questioning child more curious and more confused.  We so often deal with the staring, the questions, the looks … that it is our reality.  But pretending it doesn’t exist by shepherding your child away from mine makes your child think that there is something “wrong” with mine.  As Drew has gotten older, we have learned how to address it with other kids and how to break someone’s stare.  We have a plethora of answers to questions and know that for young kids especially, it isn’t about cruelty – it’s about curiosity.   “How can he hear if he doesn’t have ears?”  And that is a legitimate question!  But telling them not to look – that just puts my kid into a box he doesn’t belong in.

So, as a rambling answer to the question – it has taught me that sometimes, despite my best intentions as a human to not make people who are different feel different – for many years, I did exactly that.  We have tried so hard to raise our boys to be compassionate and understanding, but a large part of that means acknowledging that differences exist and learning to celebrate the ways that people deal with those differences.  Different doesn’t mean lesser, and that is often hard to remember.

4.  What do you want people to know about TCS?

Wow – this is a tough one.  Appearances are deceiving.  It’s not quite ironic, but it is Alanis Morisette-esque:  Drew doesn’t have ears, but he can hear more about what is in someone’s voice than anyone else I know.  TCS kids are compassionate and beautiful beings who are so in tune with others emotions and experiences – primarily because they are so acutely aware of what it feels to be different.

That the syndrome is a part of my child, and myself, but it isn’t who I am or who Drew is.  Yet many people will define him that way because he looks different.

That TCS affects the way he looks – not the way he thinks or feels or functions.  I think that is one of the biggest misconceptions about craniofacial disorders – that it impacts one’s ability to think or process.  It doesn’t.  The bones in his face didn’t grow the way they should have, but his brain did.  He’s smart as a whip, as many other TCS kids are, and people underestimate his cognitive ability because he looks different.

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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?

Drew is outwardly fearless.  He loves sports, and he loves acting, and he isn’t afraid to be in front of anyone.  He is compassionate and caring, but relentlessly sassy and smart-mouthed (in a good way).

But that’s enough about him … let me talk about my other son here.  Michael is as affected by TCS as much as Drew is.  No, he doesn’t have it, but so much of our lives is touched by TCS that it is impossible to ignore the impact it has had on all of us.  After we had Drew, we struggled with the decision to have more children because I felt so guilty about the TCS.  So, we became foster parents and were gifted Michael, who came to live with us when he was 3.  We are so lucky to have found him, because he is the perfect compliment to Drew and to us.  Michael is 14, and while he is deep in the throes of being a slightly selfish teenager, he is so acutely aware of how singled out Drew is when we go places.  He gets angry on Drew’s behalf, and doesn’t understand why people are “so annoying” (see the teenager emerging?). He sees the stares and gets angry and defensive and protective.   But more than that, Michael has had to watch hours and hours and hours of Drew being first – for appointments, for conversations, for tears, for so many things.  He goes to school on days Drew has surgery and waits, anxious and scared, until we call the school to tell him that Drew is okay.  He knows more about medicine and surgery than he should, and he asks mature and amazing questions.  Andy and I have to work hard to make sure that he gets the time he deserves because he sacrifices so much to make sure Drew has what he needs.

So I love my boys and I love our life, and I am so proud of how they both see the world through the eyes of compassion and love.

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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?

I’m scared.  I’m so excited because I love the actors and I love the book and I love our life with TCS.  But I can’t watch the trailer without sobbing, because I see Auggie in Drew (or is it that I see Drew in Auggie?)  We have built a world full of love and protection, and now we are opening ourselves to the world.  People might say “That kid looks like Auggie!” or reduce him to just what they have seen on the screen.  But maybe I’m wrong – maybe the people who see it will be more compassionate and loving … I don’t know.   Andy is really excited about it, and Drew is too.  Both Drew and Michael read the book in class in elementary school, and that is another paragraph for another time.  But I think my mama bear instinct is coming out and I am just worrying unnecessarily.

But my biggest concern?  I’m an English teacher, and I beg the universe – please do the book justice!!!  Please honor the characters and the message and make it spectacular!  I trust that Julia Roberts wouldn’t make a crappy movie that didn’t honor the book.

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

Drew is a HUGE Drew Brees fan (from the New Orleans Saints).  I wrote to Drew Brees when he played a preseason game in Baltimore and the date coincided with Drew’s birthday, and asked if he could meet him.  He said yes. (Well, it was a slightly more complicated process than that…)  It was the highlight of Drew’s life, and it raised the bar for birthday presents WAYYYYY to high.   It was one of the first real times that I thought about asking for something special for Drew because of the fact that Drew deals with so much and asks for so little.  So, we got to go to Ravens Stadium for the Ravens/Saints Preseason game, and it was truly remarkable.  Drew Brees was amazing, and the fact that he took a little time out of his life to recognize the strength and challenges our son has – well, that was priceless.  I was glad I asked for something like that for Drew.  I can’t change a lot about his life, but I could ask for something little in return.

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On that note, I must say this.  It is so easy, as a parent of children who are different, to forget to take care of ourselves first.  I’m not good at that, so it is somewhat hypocritical to suggest, but so few people know what the daily challenges are.  Andy and I have struggled in our marriage because of the emotional and financial strain this can put on a family, and I am grateful to have a partner who shares the struggles and triumphs with me.  I am grateful to have a child (Michael) who doesn’t care that Drew is different (except to protect him).  I am grateful for this little life we have, but have to remind people – it isn’t always Facebook fabulous.  We have to make hard decisions about our child’s medical care that will affect them for the rest of their lives, and we do so after spending hours and hours researching and asking questions and trying to learn.  We struggle and cry and yell and scream, and we oftentimes forget to take care of ourselves.  Just because I don’t bring it up doesn’t mean I don’t need to talk about it, and just because you don’t know how it is doesn’t mean you can’t offer thoughts and distractions.  We have been lucky to have a really strong support system and soft arms to cry into, and I hope other TCS families have the same.


Beth- you are so beautiful and I will be forever proud I got to share this with our amazing tribe on this blog.

Sending everyone love, acceptance and kindness-

xoxo,

Eloise