National Microtia Awareness Day by Landon

Last night Eric reminded us that today is National Microtia Day. Every year, Landon gets so excited there’s a day to celebrate her amazing ears, but this year she wanted to share something with her sweet friends and classmates and teachers about this special day.

Here is what we wrote… “Today is National Microtia Day. Microtia – pronounced “my-crow-shuh” – literally means small ear! There are almost 36,000 people living in our country with Microtia. It affects the outside of the ear and someone can have it on one ear or both! People with Microtia have it when they are born and most of us wear hearing aids like mine. They are called Bahas and I think they are awesome. I have Microtia because I also have something called Treacher Collins. But other kids might just have Microtia. Kids with Microtia are the same as me- with super cool ears. I love my tiny ears and my bahas. Thanks for letting me tell you about Microtia!”

Thank you @earcommunity for creating this day where we can celebrate together and teach our community about our differences and celebrate these amazing ears. And thank you @thecooperschool for providing a community where she can be herself wants to share her story. 🥲❤️ #nationalmicrotiaawarenessday

Five.

Dear Landon,

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

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

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

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

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

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

I love you, sweet girl. Always. 

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The Undercurrent

For a month or so now, I’ve felt a sort of emotional undercurrent. I’ve had the sense that at any given moment, regardless of what is happening in front of me, I could burst into tears. It wouldn’t take much- a Hallmark commercial, flowers, even a sweet “thinking of you” text from a friend… tears are always possible. When I sit quietly after Landon goes to bed, attempt meditating or during that last ten minutes of yoga when you lie still … I immediately lose the battle with tears.

Don’t get me wrong, there are wildly joyous things in my life. Most recently in finding great love, I have also fallen in love with his daughter. My heart has instantly and dramatically expanded to include them both. While rising in love, he and I have waded through the chapters containing our complicated stories. Opening those rooms in our minds and hearts that were firmly shut years ago- spilling memories that are bittersweet and certainly rife with emotion.  There are tears of happiness and tears of past pain that is yet to be forgotten. It’s a new life full of love, laughter and no shortage of emotions between us.

With all that’s happened in just one year’s time, a few members of my tribe have quietly and sweetly asked if maybe a therapist is in order. Maybe, but it feels like the 10 + years I spent in therapy already have prepared me for this particularly complicated year. I know how to sort through the emotions, I have navigated these halls before and know the best way to evaluate and analyze what’s in front of me. And most importantly… I know that I feel this way because I have been living vulnerably

Vulnerability is not something I’ve ever been comfortable with before. When I was hurt in the past, walls immediately went up. As I’d slowly bring them down, it was my experience that I would be hurt again… and again. My heart was a bit battered. I couldn’t or wouldn’t trust, so being vulnerable wasn’t even an option. Now, in this kind of new awakening in my life, I’ve found the purest, kindest and most patient kind of love. Love without pain and love without strings. And without even thinking, my heart and mind are vulnerable. They are open with no walls in sight.

Being vulnerable is required for true happiness- in finding love in another as well are pure love of oneself.

The tough part about being vulnerable is as my role as Landon’s mother. We visited a playground the other weekend and a tween decided to glare at her. Not stare, curious and innocent, but GLARE. You know what I mean- glaring with her face turned up. Glaring without realizing that there was a mama bear ten feet away that was ready to pounce. It was as if I was living in slow motion. A burning desire to protect or even seriously overreact emerged. I felt my face flush and I was instantly glaring back intensely with the meanest of mean looks. My reaction was the OPPOSITE of everything I stand for. This is the reality of my current vulnerability. I feel this more. I feel like I have to protect every child with any difference. It’s absurd, but that’s the honest truth. Vulnerability is tricky business.

Right now, I’m letting this newly found vulnerability settle in. I’m growing more comfortable being uncomfortable. I’m trying to embody what Brené Brown more eloquently says in Rising Strong:

“Yes, I am imperfect and vulnerable and sometimes afraid, but that doesn’t change the truth that I am brave and worthy of love and belonging.

“We are the authors of our own lives. We write our own daring endings. We craft love from heartbreak,  compassion from shame, grace from disappointment, courage from failure.”

I have come to accept that fear is a natural reaction to my past 35 years. From a complicated relationship with my father to the numbing pain I felt off and on over the last 10 years with Bo, until now I had accepted that painful love was the only kind.  So how do I not allow the fear to win? How do I now love wholeheartedly? How do I teach Landon to love and see the world without fear in her heart? I’m learning that it all starts with being brave- especially when it’s hard. And recognizing my immense gratitude for the love I now have which allows me to be vulnerable and honest.

As for teaching Landon, I’ll remind her to love herself. To be continue to be brave and open to everything life offers. To make sure she recognizes the light and pure joy she brings to those around her. Today she told me that I was beautiful. When I asked her who else was beautiful she simply said “Landon.” Who wouldn’t cry at that?

Cheers to you for living openly, accepting your entire story and loving vulnerably.

XOXO,

Eloise

Update on little bug

Here is an update on the bug since so many have kindly asked. We have two big appointments this coming week- one with ophthalmology on Wednesday and then our big cranio-facial team clinic on Thursday.  The ophthalmologist we have to see again b/c her hearing loss is mixed with “sensory neural” and they ask that you make sure the nerves in her eyes are not also affected. We need to find a new ENT….long story I’ll write about later (grr). We are also hopefully getting her baha hearing aid this week. Big week. The clinic on Thursday already has me fighting my own anxiety. It’s supposed to be chaotic and challenging, but will hopefully or possibly give us a road map to what she’ll face in her young life. A plan. So my heart is full of expectations and trepidation as we anticipate this plan. As a self proclaimed planner….you can imagine why.

Then there is the genetic testing. I don’t think I mentioned this earlier, but we had her genetically tested to find out if her Treacher Collins was passed by one of our genes or if it was a genetic mutation.  When I mentioned the phrase “genetic mutation” to one of our friends he said “well I don’t think it’s fair to say that."  It’s not a derogatory thing to say- actually it’s just a technical term for TCS- the gene is either from a parent or mutated on it’s own. Finding this out will tell us our story for future children… for her future children too.  We are waiting on those tests from the one of two hospitals that does this test so who knows when we’ll get it. I mean…they read genes for goodness sakes. Sounds hard. It’s also hard to wait. When Bo and I discuss if it’ll matter to us if it came from our genes, we say no, but I’m not sure that’s true. I know that if it’s from his side I will not care. But if it’s from mine……I will. Just being honest….. I will totally care. I cannot explain exactly why but it’s there.

Little bug has happily (hurray) been gaining weight. Double hurray. Not completely enough as what the doctor wanted but enough means enough for momma. Her newborn clothes are finally snug. She’s gaining strength in her neck and certainly her lungs :).  I cannot wait for her hearing aid so she can hear our voices clearly. How magical to know that she’ll be hearing my voice when I tell her that I love her.  Hurray.

Back to celebrating small moments with the bug. She’s as hungry as ever and sucking on her pacifier as if milk will come out of it. Time for a meal!

xo

Eloise

Beauty

So often children with facial abnormalities or who look different aren’t celebrated. Well, obviously I celebrate my baby girl. In her life she’ll maybe face teasing, questions, and God forbid any bullying. This perfect child with her perfect tiny ears is just that… perfect to her momma.  I pray daily that she’ll stand up to anyone who tries to tell her otherwise with courage and true grit. I hope she always feels beautiful.

xoxo,

eloise