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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Ten Things About Parenting A Child with TCS

When I saw the piece in People Magazine excitedly promoting Wonder (the movie starring Julia Roberts!), I was a mix of nervously excited and terrified. Excited for the education on TCS this film might provide the world, and for the love for and understanding of people with TCS. The nervousness and unease I feel is derived from the fact that this is a sensitive subject, one obviously very close to mine and Landon’s own life, being put on display by Hollywood.

To be honest, when I read the blurb from my mom’s magazine, tears immediately fell and my voice caught in my throat. I was unable to respond to my mother’s sheer delight. Here she was full of amazing and insightful ideas of how we are going to finally have a national (or international!) conversation about differences. On the Today Show! Call Willie Geist! Who do we know? And so on.  As my amazing mother went on about the week long segment she would produce, I sat back and tried to control my reaction.

The tears that fell stemmed from a variety of sources. First- I am overwhelmingly nervous about how this movie will be done. Will it represent any of our authentic stories- the right way?  Second- I’m concerned about the reaction to the film. Will it trigger more understanding or further ostracize people with TCS? How will it or can it shape public perception of these children and adults?  Third – Will it provide what I wish people everywhere knew about the syndrome? And what about what they know about parenting a child with TCS? Will Julia… like… get me (and all the other amazing parents)?

I can’t control or answer the first two concerns or questions. Those chips will fall as they may. I’m not the Producer or Director clearly. But… I can work on number 3. I can publish what it’s like and how it feels to parent a child with TCS.

Julia, listen up sister.

10 Things I Wish You Knew About Parenting a Child with TCS:

1) I spend an inordinate amount of energy trying not to think about TCS. This comes from my friend and all around incredible human, Rob Williams from Look at Us. Rob reiterates to me every time we talk that TCS should not and cannot define us or our child. I work very hard not to obsess about the future- surgeries, bullying, education, hearing, eyesight, and so on. I try to plan or be proactive about her health and do the best I can to stay on top of everything on her behalf. The advocate needs to take a back seat sometimes though. You cannot do it full-time b/c it’s not all she is, and it’s not all that I am. She is smart, hilarious, kind and truly joyful. She is a friend, a daughter, a granddaughter and A KID. And I want her to just focus on being a kid.

2 ) It’s okay if you want to ask about my child, what syndrome she has, did I know while pregnant, curious about her hearing aids, and so on.  In fact…  I would rather tell you than have you stare. It’s cool if your kids ask me or her what those little boxes are on her head. We are very proud of them and love telling the tale of the Bahas. Again, say hi, be friendly like you would with any family. Teach your kids young that curiosity especially coupled with kindness is a beautiful way to build bridges and make new friends. Staring and rushing them out of a situation because they are staring isn’t the best route. Or – it isn’t the brave, vulnerable, loving route in my opinion.

3) The loneliness factor is real. Not because of TCS specifically, but because my child is in fact (wonderfully) different and therefore I am (wonderfully) different. In the beginning, those friends that were like sisters already… the ones that have seen it all with me and still love me… they rose up. My friends have helped me keep perspective when it’s been too hard to smile.  I’ve been able to share things with them that I’d much rather have kept private. On the other hand, there have been friends that have broken my heart. I’ve also started over in a new city doing something for a living that is extremely isolating. I’ve gone through a divorce and sadly lost friends that way as well. To keep perspective in the last two years, I’ve thrown myself into other things- new relationships, fitness, anything healthy for my mind and body. Sometimes crying heals me in its release. Loving myself so I can love her is the most important thing of all.

On another note… my TCS or “different” parents are my favorite community in all the land. If you are a parent of a child with any difference, reach out, find me, find others, build your tribe. They make you feel loved and safe and NOT (AS) ALONE. This amazing syndrome and world of people connected to me that have differences in their lives are the best thing that ever happened to me.

4) I know an awful lot about genes. Not jeans, genes. If you’ve known me a long time, you know that I ran from biology in middle school and hid from chemistry in high school. But over that last four years, I’ve somehow become a gene expert. Genes are awesome! Okay that was nerdy.  With such a rare syndrome, I have become fascinated with what causes the syndrome, what exactly happens at the cellular level during conception and will Landon’s children have this eventually. The causes of TCS are 60% a gene mutation and 40% are inherited. Calling something a “gene mutation” is a scientific term, and is not remotely the same thing as calling her a mutation or mutant. For the love of Pete.

Real quick: Mutations in the TCOF1, POLR1C, or POLR1D gene can cause Treacher Collins syndrome. TCOF1gene mutations are the most common cause of the syndrome, accounting for 81 to 93 percent of all cases. POLR1C and POLR1D gene mutations cause an additional 2 percent of cases.

5) Writing, coming to grips with and owning my birth story was brutal and beautiful (brutiful if you’re a Glennnon fan) and it was the healthiest thing I’ve ever done. You can read it in Start Here up above and anytime you want to swap stories, holler. I think my child is perfect. I loved all that I’ve fought for and the incredible beauty in my life. I cannot deny though how hard entering motherhood was for me. I think the vulnerability derived from telling that story was/is remarkable. The strength I’ve gained from that experience is still paying off even today.

6) I’ve become a (mommy) speech therapist. I’m not close to licensed nor do I pretend to be. I do not have any other “clients” other than Landon. But I have learned enough of the tools, verbal cues, ling sounds, how to correct a dropped or front-loaded sound, and more. Beyond an advocate or mother, I’ve needed to bring therapy and corrective cues into our home like every other parent I’ve met. It’s a natural part of our lives and one I’m always explaining to people why I’m sounding something out that way, why I put my finger to my lip, why I smack my lips, and other odd things. We speak therapy to each other, it’s cool. I will, for the foreseeable future, still fight for her right to therapy. You real deal therapists rock my world.

7) Small moments still affect me even 4 years later. When she rests her sweet head on my chest only to hear shrieking Bahas squeal back at her… my heart drops. When her eye rolls to the side and she cries that it hurts or says her “eye isn’t working”, I get a pit in my stomach. When she’s at the pool with her hearing aids off and a little girl asks her name and wants to play with her, but Landon doesn’t hear her so the girl moves along, I typically rush over and collect her in my arms. She usually pushes me away like I’m a helicopter parent, but my nerves are just not made of steel.

8) I will always over-analyze her education. Is she able to follow along in her little class? Can I ever send her to public school? Is the classroom size a big deal or not with the microphone? Oh, if we use a microphone, will the teacher mute it when dealing with another kid? Will she need an aid if she has a large classroom size? Will the aid make her seem too different than other kids?  Could I remotely afford private school? And so on.

9) I am notoriously suspect of all specialists at this point. I’d like to say I’m optimistic it will improve but I doubt it. So far in Charleston, I’ve had a hard time not pointing out things I wish they’d test, things these folks should know and I compare them constantly to the people we met in NYC. I’m a pain. I know it and I should come with a t-shirt when I walk in that announces how know-it-all I plan to be. Sorry I’m not sorry.

10) I think my daughter is the most beautiful child I’ve ever seen. I think her skin is nothing like any other child’s. Her laugh is infectious to my ears. Her hair is something I’m still trying to copy with my colorist. This girl has been dubbed by our little blending family as the silliest of all silly gooses and sometimes the ultimate nod as “most hilarious.” She is stunning to me in every way.

There you have it, thoughts on parenting in my world.

**In addition to the parenting side, I’d like to clarify this about TCS as well: TCS does not affect the brain’s development nor cognitive ability. In fact, Landon is wicked smart.  She just started adding at age 3, knows which are the words “the” and “train”, and seems to have a semi-photographic memory. Shameless mom-bragging aside, this is FAQ and one that most people get wrong about rare syndromes.

As far as the movie goes, I’ll certainly work alongside my mother in the hope that someone at some morning show somewhere will dedicate a week long segment to Differences and truly celebrate the essence of the book. If you have any tips or intros you’d like to pass along to me in order to champion this cause let me know!

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Sending love –

Eloise

 

About the other day…

My body jolts awake from a deep, seemingly immovable sleep. As if it was a continuation from a dream, my eyes immediately fill with tears. I rub the raw and sensitive skin under my eyes and sit forward. 5:40. Ughhh… my morning to sleep in. I walk quietly to the bathroom to wash the emotions away. As I brush my teeth, my sore jaw screams back at me- a clear sign that I must have been grinding my teeth through the night.

I throw the yoga mat out onto the floor and spread it wide with my feet. The annoyingly cheerful yogi calls instructions out from the TV. As I move through the practice, my mind has trouble focusing. I lay down. Maybe an early shavasana will help. I have a teacher that asks her class to ‘locate what hurts and focus your breath there.’ What hurts is in my mind, my heart. That feels more complicated than just a shoulder. I try to focus my breathing and think of my impending time with Landon. Instead… my chest begins to tighten. The yoga teacher falls away and I realize the impending emotion. Like that sort of friend that brings out a not-so-awesome side of you, anger has arrived by my side. Deep, seething, face reddening and stomach aching anger.

I rush into the next room and find the kindest smile and face I’ve ever seen. “I can’t breathe. I need you,” I stammer. He makes me lie back and walks me through a body scan meditation. From my forehead to my toes I breathe into each part of my body and into the emotions. I focus on his calm and deep voice. We breathe as deeply as our lungs will allow.

As we near my toes I let out a soul gripping, bawling cry. One I’ve had in me for some time and fought not to release. Once I regain control, I wipe my face clean and explain that it was the fight with Landon’s father that stole the breath right out of me. That what he and I exchanged startled me, awoke emotions I haven’t felt in years. What he said, what I responded with… all of it was painful.

Trading pain for more pain.. the saddest way to be with one another.

All it takes is a few days of arguing and it seemed like we were right back in the proverbial ring. Him lashing out at me for leaving, for him missing time with Landon; me throwing every ounce of past pain back in his face, for my missing time with Landon. Round and round we went. You could almost hear a bell ring and I fully expected a referee to call us to our corners.

Divorce.

Sometimes one awful, saddening and painful conversation can make you feel like the friendly work and careful steps forward over a year’s time are erased.  I thought about if he were just someone I’d dated in my twenties and this is when my girlfriends would cheers me with wine and say ‘aren’t you so glad you are done?’  And his friends would buy him a shot and pat him on the back- celebrating the finality. But we aren’t done.

We will invariably be tethered to one another by this beautiful, incredible child. By the girl that taught me love.

I knew that anger-filled, breathless morning what I have always known since she was born… I have to forgive. He has to forgive. We will both always have to find it in our hearts. And we have. The raw emotions we upended- that were strewn about carelessly that day are neatly tucked back in their cases.

As I said on her birthday… there’s no alternative … she is all that matters.

She needs to hear kind words exchanged. She deserves to see us smile in each other’s direction. She should have her parents able to be by her side physically and emotionally. The only time she will be in the middle is if he has one hand and I the other. That commitment can be excruciating, but it’s everything.

Fights will happen, feelings will inevitably be hurt. This process is raw, it makes you uncomfortably vulnerable. Forgiveness is the path forward for the child. And that is everything.

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Food for thought…

xoxo,

Eloise