The Eloise Diaries

Landon, my girl, you are officially a teenager! After months of counting down, planning, wishing, and dreaming… you are now finally thirteen.

This transformational time is underscored by your sudden height and deepened maturity. While you are still holding onto some small pieces of your childhood – like songs and movies you will lovingly still sing at the top of your lungs alongside your sisters- there is a notable shift that is probably imperceptible to most everyone besides your parents. You have begun asserting your independence, not in a defiant way but in a loving and reassuring way, letting us know that you are ready for it and prepared for the ties to loosen. You stood tall this past month with your eyes and heart open to the experiences of a new school. Your heart contains multitudes- carrying with you the wonderful girlfriends from childhood and an openness to the new friends that are starting to emerge. Your love for your family is palpable, as you create worlds and act out books for one sister, while simultaneously creating inside jokes and dance videos with another. You love on your cousins and still want to snuggle with your parents (sorry if that’s cringe) :).

Most importantly, you remain your true self and haven’t devolved into something out of a parental warning story. You are loving, hysterically funny, kind, passionate, creative, playful and joyous. You are my heart, as I’ve said, as you taught me how to love beyond what I had ever known before.

I am overjoyed that we all get to collectively celebrate you across the weekend, and I will forever be proud that you are my daughter.

All my love,

Momma

Happy happy birthday my girl! TWELVE years of the joy and magic you uniquely create wherever you go.

Twelve sounds so big and grown up – and mommy is having one of those moments realizing that you really are both of those things now. And honestly, sometimes I still picture you in barely-there pigtails with your sweet toddler smiles.

Now, you have grown so tall and beautiful, wise, SO BRAVE, and ALWAYS kind. I am always proud of you, but this past year around the sun forged a new level of pride as I witnessed how you navigated something more challenging than most kids your age usually ever face. You have entered adolescence with a deeper understanding of who you are, and a curiosity for what makes you, you. This new path of self discovery led you to read this very blog about your life and relish in the journey we’ve had; seek to find your very own music and bands; continue drawing everything you love, designing cool worlds inside games, AND still playing like a kid. You, my girl, are awesome.

Our road trips and time talking about the world and the things and people that bring you joy always inevitably teach me something and fill me with endless happiness.

I couldn’t be more excited to celebrate you – for you are the girl who taught me how to love.

Happiest day, sunshine! Let’s party!!!

Xoxo

Momma

Well, she did it. We did it. After what felt like the longest day ever, Landon finally got her first of two Osia implants. I feel like a lot of people say this- but her team was absolutely incredible and beyond impressive. From her awesome ENT to the phenom anesthesiologist, and her nurses and those observing- it was exactly the experience you’d want your baby to have.

She was her bravest self, not breaking down once, as her team inevitably rolled her out of the room away from us. In that instant, I was so grateful for her dad’s strength as I finally broke with it all finally hitting me. And so…. we began the waiting game.

Finally, finally, finally, we got a report that she’d done amazing. They even got a great view into her airways for a fuller picture of her anatomy (important for TCS kiddos), and we got to sit with her while she napped off the party pack they’d given her. A comical redressing ensued, and my drive home was like toting a newborn baby- I think I went 15? And after a good sleep at home, we all collectively exhaled for the first time since 12:30 the day before.

Resting comfortably, Bluey on repeat, toys from friends and family filling her room, we now focus on perfecting the couch potato. Thank you for the love and prayers- we felt every one 😘💕✨🫶 #cochlear #cochlearkids #cochlearosia #treachercollins #microtia

After what felt like the fight of all fights, our collective family’s diligent and unrelenting hard work paid off — and we are insurance approved as of last Friday. To be honest, I’d just about run out of hope. The only thing left to do had been done, the final faxes sent, old audiology records located at 4:30 that morning, so later when I got the texts, phone calls and emails of approval – it felt surreal. I had steeled myself for the worst- allowing the cortisol and anxiety to lodge themselves in my bones. But after celebrating our oldest’s sweet 8th grade graduation, we got to continue the celebration with more happy tears. As relief started to spread, and I finally took the deepest of deep breaths, we could turn to what comes next – the actual procedures kicking off this Friday.

It is important to marvel for a moment at the incredible win that was won. The appeal collectively took at least 22 people to win, was won only with the insurance company’s medical review board meeting to allow their first exception and approval for this type of hearing aid implant. Her step mom was nothing short of phenomenal for all she did, and I’ll forever be grateful for the people that helped us. So now we are just days away from her first of two Osias.

Amidst the celebration, it’s also important to point out- while amazing, needed, and life changing- our baby is having surgery again. In the seven months since booking these two surgeries, I knew in the back of my mind that I’d eventually have to prepare for them. But with her spirits soaring high with mere mention of the new implants, and art therapy serving her incredibly well, I didn’t let my own fear linger for long these past months. And then as the weeks crept toward June 7, we suddenly had to divert every ounce of our inertia and brain power to this appeal. There simply wasn’t room for a single ounce of fear of the surgery when we were repeating multiple times a day the immeasurable benefits these implants will afford her. The improvements to her life became our mantra. And now as the appeal dust has settled and the paperwork in order, in just a few days we’ll drive to the hospital for the first of the two surgeries that we’ve been thinking about for just shy of eleven years.

Bo asked me how I was doing today and I admitted for the first time that anxiety is nearby… it’s never not there… I just haven’t let myself think about it. I can sense it in my mind, like it’s an actual creature hiding behind a bunch of stuff in an attic. I know it’s there, I can feel it lurking just like in the days leading up to her other surgeries when she was little- but back then she didn’t notice any of that. The impending sense of losing control, of watching her go into the room and then the out of body experience we feel until we see her face again- it’s in a few days. But unlike before, she’s older, more aware of me and my emotions, actions and words. She is astute of my sensibilities, of my face, and my tone. So if I let anxiety in, then it’s like inviting it into her mind as well.

In my incessant preoccupation with preparing for what comes afterwards- all the food and games and books and treats I rambled on about today- Landon got quiet as the day wore on. Too much is just too much, and turns out that tweens actually prefer sometimes to just listen to Noah Kahan instead of listening to their mothers prattle on as I mask my anxiety with action oriented online ordering of random crap.

If I’ve learned anything since her very first surgery at six months old- when I came out of my own skin with absurd worry- it’s that this girl is resilient as hell. That we didn’t arrive at these decisions lightly, or without a fight, and that we can be at peace that she’s in the best of hands. And anxiety will show himself, but he won’t take control. I am in fact older, wiser, and more practiced at this. And fear doesn’t have to be something I hide from, it is a part of raising a beautifully rare child but it’s not everything. And these implants will be just the start of a beautiful new chapter in her life – from which I can’t wait to see what else is to come.

Oh, and TCS friends, I’ll post soon on what the appeal entailed, what we did and what to try in the hopes that we can help others along the way.

Until Friday, friends….

XOXO,

Eloise

It’s no secret I love music. My favorite concerts and songs are peppered all over my social media, our house has some device to play music on in every room. But the National, they are my people. They are the soundtrack or backbone of every emotional roller coaster – the highs and the lows- of my adult life. In my current emotional state – over the battle between insurance and hospital over Landon’s imminent implant surgeries- I found myself sitting with this song’s lyrics – turning them over and over again in my head.

It’s quiet company

And I can’t fall asleep
Without a little help
It takes a while to settle down my shivered bones
Until the panic’s out

It takes an ocean not to break

It takes an ocean not to break us… the initial denial of the pre-authorization was enough to do that. It broke me wide open into a frenzy of phone number gathering, emails, sleepless night worrying. And it’s not as simple as pushing it off and then it’ll be approved. It’s really yelling out into the void… “will it ever get approved?!” And here I sit today, one full week of this mind numbing, collection of records, forms, numbers and texts with her step mom still waiting. The current state thanks for our collective rallying cry has been pushing this to the medical review board of BCBS of SC to analyze whether a code for her surgery will or should be created. Otherwise, we don’t know if they can happen. The complexity and layers of this study are commonly felt by rare parents, that much was made clear this past week. Everyone who has walked a similar path to us has cried into the early hours about codes, medical necessity, and summoned that last bit of strength to advocate another day.

We’ve weathered some incredibly hard things in this life- raising, protecting, advocating for and cherishing our rare girl. That ocean is here however, and we are breaking. I know there are codes, and procedures and processes these large entities need to function. I live in policy and process every day in my work life. But I also live in the human space- keeping the humanity and feeling as a part of decisions is literally my job- and we’re trying to apply that here. I woke up that past two mornings in real panic. Four AM isn’t a kind hour but it’s quiet, it holds meditation over coffee, and the ability to summon the strength needed to handle one more day of this. However, the ocean always comes after the sun rises.

The what-ifs, the lack of control, the lack of trust that these systems will do right by a child, this is my ocean and I have broken. This week, I was frenetic, short tempered, quick to tears, unable to allow any form of meditation to soothe me. The complexity of insurance authorization, approvals, codes, and wading through the minutia to just get your kid what she needs and deserves is enough now to shiver my bones. And while it’s not life or death, it is truly the ultimate wellbeing of our daughter. It’s her access to markedly better hearing and a truly massive improvement in her life. It’s the hope that her mental health can improve. It’s also a carefully orchestrated plan that we have prepared for over six months. To get down to the wire and have six numbers seperate you from these needs is overwhelmingly hard.

By this point in our Treacher Collins journey, I thought we’d experienced it all- from the mental health journey Landon has been on, the constant staring and pointing and awful commenting at the hands of other teens, to the surgeries she had as a baby, the navigation of early childhood intervention in two states, this particular fight didn’t even occur to me that it was coming. So, one foot in front of the other we go.

Keep sending your good vibes, I’m not sure when our fight will be over.

XOXO

Eloise

I can feel their eyes before I even see their faces. Acute, sharp, their gazes fix on her as she settles in next to me. Unwavering, unfazed by the bustling action around us, they continue to glare even as the music begins. The stares come from the left, the right, then directly in front of us. Some young, some old, some in between and it feels unending. And surprisingly it seems they feel it’s okay to stare like this, as if it’s their right to gawk and glare- as it’s more than acceptable, it’s expected. This was my idea, I think to myself, to enjoy some Taylor songs played by an orchestra and have a date with my girl. “It’s okay mom, I’m used to it,” she whispers as she can feel me urgently put my arm around her. I pull her in close using my body as a shield. “You look beautiful, darling,” I said in response, “I love you.”

When she was a baby, people would glance for less time and then meet my eyes almost immediately with a slight smile on their lips. Now that she’s eleven, the glances have grown into ogling, and the glares have turned more judgmental, their faces twisting as they cannot look away until they are forced to. She’s a tween girl – mostly made of long legs, with blue eyes and blonde hair. She wears cool Nike high tops and some combination of Zara or Lululemon like all the rest. She’s trendy most days by all accounts, wearing a Taylor Swift denim jacket or t-shirt, hair in a messy bun. And just like the kids doing the staring – she is a quintessential tween- wanting to fit in with her friends while still being herself, with one foot still in her childhood and the other stepping into adolescence. She’s more aware of herself and others, feels all the feelings and she notices it all. And while curiosity is expected, the stares are no longer followed by smiles. It’s as if the kids her age are incapable of looking kindly.

Recently, she told me that she’s only met two friends in her life who have never stared at her. They just started playing and never looked back. And now, every day she goes into this world, this the intense staring happens. It is almost like a veil was over her eyes until this year and now that it’s lifted, she feels like an entire room is turned in her direction. Someone murmured the other day “what’s wrong with her face, was she in an accident?” As if being in middle school wasn’t hard enough. She told me this and then said she was more concerned with being included in her friend group than the awful comments from a stranger. I hate that these are the things on playback in her mind. At eleven, it should be Taylor’s new album, how to climb that tree in the backyard, the next thing she plans to build in Minecraft, or a joke she just heard. And sometimes it is, but this noise… it’s getting louder.

I would carry it all if I could – this discomfort, these questions, the noise in her head about what people are thinking or saying. The same noise stirs in me as well but from a ferocious love and protector perspective. I feel her struggle acutely in my bones and in my stomach. When we’re apart, I dwell there, laying awake throughout the nights trying to plan it all, solve it all, soothe it all.

Recognizing I can’t solve it, can’t fix it, can’t assuage every situation or make the noise stop, we sought some help. And not just any help, art therapy help. Right up her creatively minded, beautifully imaginative alley. It’s early days yet, but so far on those days, the help is helping. She walks out and proclaims that a weight has been lifted and left on the page she drew or created. The deeply empathetic, young therapist meets her where she is and is helping give her tools for what she can control and creating pathways to release that which she cannot. I used to book therapy for her based on specific situations at hand, but much like her mother (and frankly all people I know) everyone can benefit from therapy on an ongoing basis if I’m honest. It’s a release, a place to put it all, to seek peace, and is also someone working with you who is not only a trained professional but is also not related to you. I’m grateful we have the resources to work with her; I’m grateful for a willing, brave and open child who sees what good is ushered in at every appointment. I’m grateful it’s helping one step at a time. So today, instead of dwelling inside the noise, I’ll sit here in gratitude for the good that comes each week with this extra added dose of help, and take comfort we recruited someone else to the team.