One step at a time…

Yesterday, we moved one step closer to some answers we’ve been asking since Landon was born- it was time for her first CT scan. When she was born, we had several doctors tell us she needed to have one done. While I lay there two days post partum, a flurry of doctors who traveled in packs of four would cruise in and out and proclaim a list of tests she needed (or was having) and I vividly remember the CT scan conversation like it was nothing. “Ct scan needs to be soon! Schedule it now!”  After discussing it ad nausea at the Clark School and with other supportive “special” parents… I knew we would wait.  There was no reason to do it then- she was too little, it was too much radiation for a 6 lb baby and her father and I knew she didn’t need it yet. Surgeries wouldn’t occur for years, but doctors can be so pushy sometimes and not always with necessity. Alas, we waited and I’m so glad we did.

And yesterday… Landon killed it. She was amazingly still, put her “brave face” on, and was in and out in 10 minutes at the most.  Truly, it was shockingly easy in the end. To prepare, we actually learned what the word “still” meant, and played “statue’ where she practiced freezing while her step-sister tried to make her laugh. I walked her through what it would be like- a machine that looks like a huge donut would be above her little head and she would get to lie down to play the statue game. I made sure she knew she could bring Lenny the lovey and that I’d be right by her side.

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The night before and the morning of the scan we also talked about who we thought was brave. “Moana! Moana is super brave when she walks toward the fire monster and places her face on her face. Moana saves her island and is brave with the water. Also Hei Hei is really funny. Momma, I’m brave like Moana!” Thank the world that Moana exists and my girl can esteem to be just like her. Seriously, thank you Disney for this one- parents definitely approve- but I digress. As we talked through who we thought is brave, she of course mentioned Anna her sweet sister, and I told Landon I thought that she was the bravest kid I’d ever met. She beamed and moved her eyes from side to side. She stood a little bit taller I like to think after that conversation.

So… why do a CT scan now? Well, in conjunction with a sleep study we’ll do June 3rd, Landon’s ENT wants to be able to give us some clearer direction on what’s next for her so we can strategize and schedule her surgeries appropriately. The CT scan will tell the team what’s going on inside- the structure of her inner ear in particular.

Here is even more detail in case you’re wondering:

The scan will allow the otolaryngologists (ENTs) to “see” into the middle and inner ears to understand the internal anatomy. From the scan, they will grade the her ears’ anatomy on a 10 point scale to determine if canalplasty (opening the ear canals) is an option for improving her hearing loss.  This 10 point scale is called the Jahrsdoerfer or “J” scale and was developed by Dr. Robert Jahrsdoerfer.  The “J” scale is broken down on the following point system:

Stapes bone 2
Oval window open 1
Middle ear space 1
Facial nerve 1
Malleus-incus complex 1
Mastoid pneumatization 1
Incus-stapes connection 1
Round window 1
External ear 1
Total Possible Score 10

If an individual rates a 7 or higher on the scale (70% out of 100% chance of having hearing restored to normal or near normal range), he/she will most-likely be a candidate for canalplasty.  Usually, if the individual rates a 6 or below, canalplasty is unlikely an option.  However, in some cases some individuals may still be candidates even with a 6 rating depending on the actual anatomy of the ear.

Because Landon has Treacher Collins Syndrome and not just microtia atresia, she is most likely not a candidate for a canalplasty because the anatomy of someone with TCS is usually far too small to qualify. The critical importance of following these specialists’ advice on this is that a canalplasty poses a significant risk for damaging the cochlea. So, we’ll know where and what her surgical future may look like with the designation on the scale. We’ve not yet decided if we’re doing microtia repair and building new ears, but if there’s a good chance for a canalplasty that’s a large piece of this microtia puzzle.

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Next up will be the sleep study. That night they will cover her little body in nodes and watch her sleep while analyzing her air flow. Given the (probably abnormal) amount of sleep stalking I’ve done since she was born, I’m fairly certain she has some form of obstructive sleep apnea (OSA). It is also very common for anyone with TCS because of their traditionally small jaws (called micrognathia) and therefore the tongue rests far in the back of her throat and obstructs air flow. We will know after this study the severity of the apnea and then be able to discuss (using actual data!) whether she needs a tonsillectomy, adenoidectomy (or both) or the full monte… a jaw distraction or “mandibular” distraction surgery. That would involve making the lower jaw larger by lengthening the lower jaw bone and relieving airway obstruction. That last surgery there… that to me is the most terrifying surgery in all of the TCS related surgeries. It’s invasive, it’s extensive, it’s painful.

But… knowing more of her surgical future can allow us to prepare for the what, when and begin the conversation of where. We’ll have more questions following these answers, but have studies completed to be able to get those other opinions. The absolute hardest part in this is not moving ten steps ahead and being consumed by the what-ifs. What if she has jaw distraction surgery? Who is good enough to perform that surgery? Do we use someone in Charleston? In NYC? In Philly? Do we take a chance with a canalplasty if she scores a 6 on the J-Scale test? How many opinions do you get before you make a decision?

The weight of the future decisions has settled somewhere deep in my chest. The emotional recall is quick so if we talk about it, there’s a very good chance I’ll end up in tears. Don’t think I don’t want to talk about it, and don’t assume you’ve caused the tears,  but there you go… that’s your fair warning. I currently feel like I’m emotionally stuck together by some duct tape and bailing wire. The only way to live, however, is as if these concerns and future decisions are not looming. I have to show up every day for my family and be source of love and fortitude. I have to show up at work and be on my game for everyone I support with work alongside. I believe that’s how I can show Landon what bravery is like outside of Disneyland. Life is about showing up. Isn’t that the old sports adage thrown around in pre-game huddles and on inspirational posters in offices from the 90’s? And it’s still true today- that and one day at a time.

There you go my friends and tribe members… that’s the latest on Landon’s medical life and why there are a few more pictures lately in doctors rooms or hospitals on my Instagram. Thank you for your love and notes of encouragement. We have certainly managed to have a lot of fun lately as well and some of those pictures are below. I’ll certainly try a little harder to keep this thing updated as this blog always serves as a wonderful space to exercise my thoughts and (hopefully) help those going through similar things with their little ones.

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Sending you love-

xoxo,

Eloise

Dear Generals

I wanted to write you ever since our car drove away Sunday morning. It was a perfect game day- the sun was bright, the air felt especially crisp and smelled a perfect mix of flowers and that incredible smell of grass that reminds us older folks of our youth spent on fields. While we drove away I was filled with regret that I was missing your game, and didn’t get the chance to speak to you all, to hug and hive five each and every one of you.  I missed a chance to tell you just how much what you’re achieving, working toward, sweating for, sacrificing for, and playing for means to others.

I know none of you know who I am, why should you? I graduated in 2002, and please don’t sit there too long thinking about what you were doing in 2002… I know… it was 15 years ago. But I too played lacrosse for the Generals. I was a defender and two-time captain. I shared that locker room, spent too much time in a much grosser weight room, ran that track, taped my bruised body in that training room, and wore the same blue and white.

I lived and breathed the sport growing up in Alexandria, VA, and probably much like you, I chose W&L as a way to play in college while also having some balance in my life that I feared a D1 school couldn’t provide. My freshman year I  spent a good bit of time in the training room even by fall ball. Ankles tapes, legs wrapped, ice baths. I will never forget during that first month, however, sitting on a training table and a guy plopped down.

“What sport do you play?” he asked.

“Um, lacrosse. Women’s lacrosse” I stammered.

“Oh, club sport, right?”

As if my glare could pierce his face, I looked him in the eyes and said “Nope” and limped off.

I knew in that moment this wasn’t my high school anymore where the women set the records and had the stature. The women had come so far at W&L to establish a great team by 1998, but I knew then we women had more work to do. I remember thinking that what happened in the past didn’t matter, it was up to us now to change how women’s lacrosse was perceived. We gave it everything we had- we won often enough those first two years, we practiced late, we pushed our bodies to their extremes. We limped around campus, trying to achieve the level of success only the men so far had known in the sport. To me, with 15 years of distance from my last game, I truly feel we moved the proverbial ball forward for the sport in Lexington. Following our four years, more recruits came, more teams found success, and there were more awards bestowed on W&L. Each set of classmates wanted to go further, achieve more, and make a bigger name for women’s lacrosse on campus. We have all felt equally proud to wear that uniform, and watching your current success, I’ve never been so proud of what every year of women’s lacrosse accomplished. Each and every woman that played helped this program get where it is today. Even if it was just enough success that it attracted your beloved Coach to consider moving there and take you to where you are right now.

 

I know it’s been hard for you girls. I remember what it takes to be a General. Practices after full days of classes, night games right before you have an 8am test or paper due. We spent an inordinate amount of time on a bus to Florida every year, never made it to a Fancy Dress ball, watched our friends board buses to Foxfield while we boarded our own bus to a game. Spring break was spent in town, winter break was spent at home attempting to tackle the workout program.

I know the countless things you have missed, the parties, dates, even quiet time after classes. I know what it takes to cram for exams on a bus that well… you know… smells like a bus. Spring in Lexington is also wildly wonderful. It’s also incredibly hard to stay focused on something that you feel not everyone understands. Most of my best friends didn’t play a sport and hadn’t even seen lacrosse before they met me.

Staying focused right now is an important test. Maybe one of the hardest yet in your young lives. I see that, I respect that, and don’t ever think that you’re alone in feeling that way.

All of this sacrifice, all of this time dedicated to your team, to this sport, to the Generals… I’m here to tell you it’s worth it. It’s always been worth it for me.  Of all of the things I did while at Washington and Lee, and since then in my adult life, playing lacrosse and giving it all I had is one of the most important things I’ve ever accomplished. And what I wouldn’t give to be able to do it all again…

So, my fellow Generals, enjoy every moment of this post season ride. Enjoy the practices, the time spent together on that field, in the locker room, and be proud of your dedication. Do not forget be grateful for this time you have together as a team. Know that I am with you every step of the way, watching you online and wearing my blue as often as I can. And don’t ever forget to listen to Coach… she’s world class… and also my friend.

Again, I am so proud of each and every one of you.

GO GENERALS!! PROVE IT!!!

With all my love,

Eloise

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Vows of a (Step) Parent

When we eloped this past New Years Eve, we always knew we would still have our wedding with the children. Not only because of their level of excitement…to be a flower girl and a cowboy (great story for another time), but we also recognized the importance of sharing an afternoon together- professing vows of love, dedication and family. I strongly desired an opportunity to stand in front of our children and share my commitment to them. For Landon, it’s a reminder that more people in her life equals more love and that my love for her could never change. For Anna, my stepdaughter, it’s an explanation of what she truly means to me, and what I vow to be to her.

As I drafted my vows to Anna, I kept getting stuck on this title… “step-parent.” That first part, the ‘step’ part of my title kept tripping me up much like the literal kind did as I awkwardly grew into my tall self. What is “step” parenting really, and does it differ from that of regular old parenting? And why are the step mothers all cast so poorly in Disney movies? I wouldn’t desire a step mother after watching Cinderella, thank-you-very-much!

I pondered for weeks my new found role. When you become a step-parent, and have a child of your own, you have a delicate balance to strike. How do you gain your step-child’s respect, trust, and love, all while making sure your (naturally born) child shares in your attention as well? You want to approach step-parenting somewhat lightly, allow it to develop naturally, making sure it’s not forced and they have plenty of space with their other parent.  You want to explain that “nothing’s changed” all the while you know SO much has changed in their lives and it’s ridiculous to ignore the chasm that’s taken place. There is a new parent on the scene and you want nothing more than for them to feel loved and alright. All the while you are balancing their delicate emotions, you are also parenting. So there is discipline, there are rules, there are bedtimes and forced clean ups and the dreaded time outs. Basically I like to often call myself the “no fun police”. Go ahead and insert my step-mother wart here.

As a mother, I’ve known that you cannot be your child’s best friend. That title comes when they’re finally in their 20’s and you share wine, magazines and amazingly awful Bravo shows together.  But now, while they are young, you are here for love, structure, guidance, rules AND fun… but mainly the other stuff. When you’re a step-parent, you are parenting and trying out styles of love, all while they’re still figuring out who you are and what’s going on.

As Anna and I built our relationship, I knew several things right off the bat. One, she’s incredibly smart both emotionally and intellectually. Two, she’s not Landon. Oddly that part was hard to figure out and then remember! She doesn’t process, emote, judge, respond, or even play like Landon. She needs a different kind of water from the watering can, as my friend likes to say. Three, our relationship grows only with time, not force, not sheer will, and I have to employ patience. So as I wrote her my vows of love, I kept these thoughts in mind.

Here is some of what I said that day, and more of what I put in a note for her to have.

Dearest Anna,

Our new titles for one another involve this funny word… “step”… indicating possibly it’s one step away from a real mother or real daughter. This is why I’m writing, to make sure you know how I feel and that I plan to live and love you as if that first part of my title doesn’t exist.

You, my dear, have always been easy to love. Your laughter, silliness, propensity for knock-knock jokes, real and true kindness and your love of Landon made my love grow quickly.  I’ll never forget when we first met, and you were so excited to show me how you could swing and climb and played so naturally with Landon, giggling all the while.

I love how proud you are of yourself when you figure something out on your own. I love how you carefully and thoughtfully teach Landon things that you know as well.  I love your inclusiveness and how you have always just seen family – not two families, not two sets of parents but just one family. Leading with an open heart is such a beautiful way to live.

With your open heart in mind and as inspiration, I want to take a moment and vow to you the following…

I will always love you as if you were mine. I will continue to endeavor to earn your trust and love as well. I will also protect you, discipline you, encourage you, teach you, listen to you and learn from you.

I think you know how I feel about daddy, and I certainly see and feel your love for him daily. I will always support your very close relationship with him. I will also always love, respect and listen to your mother. We are all a team, you see, and that will always be the case.  My love of you will simply be more love for you, and never in competition with anyone else’s love.

As we enter this new phase of family, I also want to thank you for loving Landon as you do. She has called you her sister for quite some time.  You and Landon’s love of one another were our guide as we formed our family. She, like I, are wildly happy to be in yours and daddy’s lives, not as step people, but as your family. Thank you for loving us as you do.

With love,

Eloise

I hope and imagine that she might re-read this when she’s older. By that time these titles or the cast of characters Disney gives us as step-parents will hopefully seem comical. Our love will be its own special unique thing, and for that I’m wildly proud and excited.

To all of you step people out there, I feel ya… and I’m here to discuss as always.

XOXO

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“What’s a… syndrome?”

It was a quiet and unassuming Tuesday night around the dinner table. I happily had both of our girls that night for supper. As we tucked into our pasta, peas and roast chicken, I asked my usual series of questions for the girls when they’re together around a table.

How were you proud of yourselves today?

What new thing did you try today?

Have either of you so far failed this week?

And so on…

These are questions I’ve gathered from books or blogs and the girls excitedly raise their hands to answer them. Anna, almost 7, is a bit more practiced with telling her stories and shares poignant insights into her day or the week thus far. Landon tries to keep up, usually adding something about trying a cucumber, the playground with her buddies and dancing with Ms. Robbins. One or both of them will then make up a joke that’s something about a cow crossing a road, and the moooovies. It’s adorable, light fare for a weekday. It’s also my favorite thing in the world, to have them here, opening themselves up to me.

There we sit, as the glittered trees on the table reflect light in our eyes, laughing at age-appropriate and bizarrely themed knock-knock jokes. When… suddenly… Landon jolts forward, coughing with her whole body, struggling with food in her throat. I lunge toward her, but quickly she is able on her own to clear her throat. Phew.

We take three deep breaths, sip our milk slowly. And I kneel before her.

“Landon, was that bite too big for you?” I say hiding the slight panic in my voice.

She nods “I’m okay momma” she says, going back to bopping her head from side to side.

“Landon, mommy will cut these up smaller, but even when I can’t, you need to take smaller bites sweetheart. Your airway is really small, baby. Right here (as I point toward my throat), it’s little. Promise mommy you’ll practice taking smaller bites, okay?”

“Okaaaaaay,” she smiles.

Anna, inquisitive about the world as ever, asks me “why is her throat really small?”

Without thinking or skipping a beat I say “Landon has a rare syndrome which means she’s built a little bit differently- smaller ears, smaller airway.”

She thinks about this, cocking her head to the side. “What’s a… syndrome?” Anna asks.

Right. Syndrome. A big word for small girls. One I use so often that it comfortably now sits on my most used words list and one I rattle on about with pride.

I freeze for what felt like 10 minutes but in reality was mere seconds. Showtime, mom. I felt instant pressure for a life changing conversation, one where you must use your most perfect words. Words that express a definitive, science-related answer while also conveying love, compassion, acceptance, and yet I should not make a big deal out of it. Super easy and no pressure. Go!

“Great question, honey. You know how we all have things that make us different or unique? Well, a syndrome is when there’s a collection of unique things…or differences that commonly occur together. We know that they occur often together because there’s a group of people who all share these same things. And Landon has one, it’s pretty rare actually, and I am constantly connecting with people from all over the world who have it.  Cool, huh?”

I took a long, audible, deep breath and I study each girl. Anna is nodding, and says “that’s cool.” Landon is not paying attention to me, which is normal when there’s pasta in front of her.  When she looks up at me she says “knock knock” and I know the lesson is over.

A first. Explaining this stuff to the children, to which I belong. These words: differences, syndrome, Treacher Collins, bahas, cochlea, surgery, microtia. I have thought and written often about discussing them with the public, with specialists, with other people’s children, even with bullies.  And yet, I had not given sincere thought as to how to define them or discuss them properly with our own children. Probably because of Landon’s age, and the fact that she has no clue she’s any different than her peers. And well, frankly, I had not been asked anything yet.

I am still thinking about that dinner. About my answer. Still hoping and wondering about what resonated, if anything, with either of them. Still second guessing my chose of words and if I should have expanded. What else can I say that empowers them to answer questions they may get? Was my answer too “Merriam Webster- esque?”

All of us “different” parents will face these kinds of questions, and some will be infinitely harder. We can only answer honestly, with love and acceptance, all the while cutting ourselves some slack. We will get better at all of this, the longer we’re in this game.

A lesson I’ll do my best to remember myself.

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XOXO

Eloise

While I breathe, I hope

“It was the day the world went wrong
I screamed till my voice was gone
And watched through the tears
As everything came crashing down

Slowly panic turns to pain
As we awake to what remains
And sift through the ashes
That are left behind

But buried deep beneath all our broken dreams
We have this…hope.”

Staring at these lyrics this weekend, I wondered if I wrote them two years ago or did someone else hear my story and put music to it. The initial part of the song, and my story, isn’t a new one- more of a cliché in fact. The message of hope, however, is one I feel we need to talk more about.

Hope was something I was luckily able to grasp from the beginning. Although the start of the separation was infinitely painful, there was an air of hope. The most critical element of this hope was that it was in relation to myself. I had hope that I would feel like myself again, love myself again, and be that example of love and strength for my daughter. My life before and my life now do not resemble one another in the slightest. In shedding that pain, self doubt and shirking the stranglehold of expected deceit I felt free. There was immediate hope that tears would be replaced by laughter. I would return to the girl I loved from my teenage to early twenty-something years. That was certainly a time of sadness, like a death of a family member, but in my hope I found my breath. I found the ability to get out of bed in the morning – even in a starkly quiet, solitary apartment with poor lighting. Hope was a unique feeling – one exemplified by a private smile I would share with the music playing on the radio while driving. In meditating on feelings of newness and restorative self-love, I began to return to a life of poetry, books and music, of deeper mediation and healthier forms of exercise. Truly, the word hope meant self.

I stopped hating my body and comparing it to others. What was the point? I’d bared a child for goodness sake- damn that is impressive work. Be gone with the thoughts that if I was younger, prettier, more fit, than the marriage would have worked. I started to read every book Thich Nhat Hanh ever wrote. I watched Brené and Glennon on TED Talk’s website. I decided that I’d pour only goodness into my soul – I was in charge of the contents after all!  It wasn’t all rosy, as you very well know, and I’ll come back to that later. But self was the mission and dammit I had hope for what I might still become.

Messages or conversations of hope are all around me these days. Whether it is a reminder of our SC motto, “while I breathe, I hope,” or several conversations recently with other mothers going through separation and divorce, hope is something we all need even while living our best lives. A common thing has continued to emerge, however, around my own hope or hope I’ve seemingly given others. Comments are made or sentiments shared that because I’ve now found my great love, hope is now alive in me or now a part of my story. The pervasive thought is that hope is only tied to another person coming into your life.

My loves, this cannot be the way. Hope needs to solely be about your own journey. Emerging from the ashes – of pain, failure, separation from your child(ren), hatred from the lips of someone you once loved, and the feeling that you disappointed your little world- is freaking hard. Knock you down, drag you out to the curb hard. Finding hope can feel impossible some days. Yes, this is true. But the hope you seek is in your own heart, in your own mind.

If you are dealing with anything like this, my wish is that you find enough patience within you to enjoy this journey. That you will see a beacon of hope swell as you grow, and change, and turn love inward. I know wholeheartedly that my relationship has blossomed and quickly evolved into a blended family and impending marriage only because of that work within. Without the hope I held for myself, and the efforts I made to heal, I could not love another let alone another’s child.  We all deserve another chance at true happiness, what I want you to understand is that begins with you. Just you. And you can’t rush it, no matter how much you want to.

As we take these steps toward our second marriage, as we continue to develop deeper bonds with our step-children, my future husband and I both will continue to work on ourselves. Having both come out of divorces, we recognize this unique and life-lasting relationship with ourselves. Each person will need to find time to continue the healing, continue the growth and development necessary to teach our girls.

To all of you who have reached out with love, thank you. For those of you in pain, who are struggling or separating or divorcing, keep the hope for yourself alive. Remember that you do matter, your voice and your feelings are important. Breathe life and love into your heart and from there everything will blossom.

May you gain more and more trust in what is challenging, and confidence in the solitude you may bear.

XOXO

Eloise

 

 

Four

Dear Landon,

Today… you are FOUR. F-O-U-R! As I sit here writing this tonight, nestled against Elsa paper bags and tissue paper, I still cannot believe how quickly you have become a little lady. Earlier tonight as you sat eating your dinner across from me, dressed in your blue party dress, you smiled with delight and full of true joy and love. Nothing in the world has made me happier.  Darling, I am so proud to be your mother.

In this last year, you started a new school without an ounce of fear. You have embraced and loved your little friends and your teachers with an open heart. You also ask to go to each of their houses almost every day. Don’t worry I decided not to take it personally.

This year you started saying things like “cool dude”, “that’s just adorable” about clothing, “wah, wuh” when mommy drops something, “be careful mommy” like all the time, and “hi, I’m Elsa Landon would you like to see my Elsa braid?” You currently love all things Frozen and are currently asleep on two Anna dolls and an Elsa.  You also love Cars, Neemo, anything with wheels, your floatie, Star Wars but mainly C3PO and R2D2, and Lenny (the buddy) still has top billing at bedtime.

Your music makes me wildly proud with your playlist consisting of Rogue Wave, The National, Portugal the Man, Nathaniel Rateliff, Cold War Kids, Peter Bjorn & John, St. Lucia, The Decemberists, and The Beatles. Every song is appropriately named after one of your favorite characters like the Sally and Lucy song, the Neemo and Dorie  song, the robot song, and so on… which is just crazy awesome.

Lately you’ve tried the following new things: tomatoes, riding a scooter, ice skating, blueberries, hummus, donuts, (hmm… mainly food) and I’m excited to see what you’ll try tomorrow.

You are funny, you are sweet, you are loving and genuinely kind. You’ve made me the person I am and I’m so thankful.

I love you.

XOXO

Mommy

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