A lesson for the heart… on Valentine’s Day

Since my first post on this blog, it’s really just been my voice you’ve heard. My perspective.  When I shared her birth story – it was also one-sided. It’s been 17 months and I’ve never shared Bo’s story. Truth be told…and this will sound shocking to most… I didn’t know his story. It is almost absurd to admit- I had never asked what happened to him that day. And I didn’t know what made him so strong all the days after. 

Bo has supported me in so many ways since her birth. Allowing me to be the emotional one, while he remained the stoic, grounded one.  Sometimes, I would mistake his grounded and centered reactions for some inability to share his emotions. How could a parent not cry when their child went under anesthesia? I just didn’t understand it. It would be an undercurrent to our previous tension. Yet, I never paused long enough during my emotional freak-outs to ask him.  

My sweet husband surprised me with a wonderful night out for Valentine’s Day. We got dressed up and drove over to one of our favorite places in this little beach town. We laughed and drank and told old stories and spent time talking about our new house, Charleston, our parents, and New York memories. We then pivoted to our family. We had talked earlier in the day about the possibility of a second child. It was a hard conversation- one I’m struggling with daily. And as we revisited the topic, I finally asked Bo how he was able to be Landon’s dad and never, ever break down. To not find things as challenging as I do. And for the first time I asked and really listened… finally… to my husband as he told me his birth story. His version of Landon being born and what his day was like September 6th.  

I sat there stunned with tears in my eyes and so much (SO MUCH) love in my heart. He told me what it was like when I went in for emergency surgery. When I was wheeled away from him. What it was like to wait in full scrubs behind a curtain for what felt like an eternity. Nurses coming and going – doing their work with other c-section babies. He described, with a quiet voice, what it felt like for 10 doctors to enter the room and how it felt when the head NICU nurse told him… “She has Treacher Collins. You’ll notice her ears. She has some deformities. She will be moved to the NICU as there’s a lot we don’t know yet.” The word deformities stung. Is that really the word she used for our new baby girl? He said that everything became blurry.  Treacher? Teacher? Something… Collins. He called my sister and realized he didn’t have the language to describe what our little baby had, what she’d face in her young life. He described how he walked into the operating room and I was unconscious. I looked like I could be dead, he thought. Then in the corner of the room, he saw her in the tiny incubator. He saw her with her hat on, pink and kind of squished. Then he saw her ears. He saw her eyes. And his heart broke wide open. 

He told me how he walked to get food with his dad early in the morning after I’d called and demanded he come back. They walked a few blocks and there on an Upper East side street, he sat down and wept. For all to see and hear. He openly wept on his dad’s shoulder. He cried for himself, for me, and most importantly for Landon. He told me that he specifically cried for her and what she would face. He then said something that I am still processing. He told me since that breakdown on 70th Street, he decided he would never think of her differently again. Never feel sorry for her. Never shed a tear over what gifts she’s been given. He would worry, but not because she has Treacher Collins. Not because she has hearing loss. He decided this would be his way to make sure she never felt sorry for herself

I learned that night why we are such amazing partners in this journey. His perspective since her birthday will bring my feet back down to the ground.  His lightness during the heavy times will lift us up.  I learned the most valuable lesson of our marriage on Valentine’s Day. That asking and listening to my partner is just as important as listening to myself. My view during this wild ride of parenting isn’t the only one that matters. 

Since leaving the intense New York world in which we lived, we’ve had a rebirth in our marriage. Everyone has roller coasters and I’ve shared some of ours on here. And now our love for each other is just as present as our love for Landon. We focus on each other more than us as individuals. This love and connection has always existed… from our very first date… but our journey has been a hard one at times. But Valentine’s night sparked something so important… a conversation that should have been had over a year ago. This lesson has been one of the most important ones I’ve learned on this journey. To listen. To ask how he feels. And to remember his strength when I feel weak.  What a great night.

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Xoxo,

Eloise

Some days

Some days when kids ask “what is wrong with her” and parents step back and act awkwardly and don’t look me in the eye…..  Some days when parents give me pity looks…  Some days when kids point…

I want to scream. Shake the kids. Slap the moms.

I should want to use my knowledge to educate. I feel that I have some higher education from the vantage point this year has granted me. I have so much to offer others that might actually stick with one of these mothers. I could impact these families and give them a gift. Teach kind by being kind. I should pay it forward by telling them those are hearing aids, like your mom wears glasses……………. that same old line.

But yesterday I didn’t want to. I wanted to yell “what are you looking at, kid?! She’s cuter than YOU are."  Yup…

So anyway, I didn’t. I moved on and stored it up.  But as I was leaving this encounter, bug and I walked hand in hand down a hallway. I heard a cleaning woman call out "look at that sassy girl go. I want to hang out with her!”

That woman was a gift from the world to remind me… there might be many others that point and stare. That move away from us.  But it’ll be their loss. 

Their loss indeed.

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xoxo,

eloise

A Good Year

A good year. The title of one of our all-time favorite movies. And a sentiment that’s not close to befitting the kind of year we’ve had.  

More like overwhelmingly emotional. Excruciating. Beautiful. Soul searching. Full of extreme highs… and lows. 

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When the year started, the term “basket case” doesn’t even do me justice. I was a shell of a person, yet I had to leave my seemingly fragile first born child and return to work. We had just started therapy and added feeding therapy. How could I leave her and focus on anything else other than her needs. How could I sit at a desk and not sob daily? Only with the intense love of my colleagues did I find my way back again. Find out how to use my brain for other things other than research. I learned how to exist in two worlds- work Eloise and new special needs mom Eloise. I felt bipolar. Emotional wreck and stable, productive worker bee. 

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I had already started blogging about her on here. I had put our story out into the ethos and the bubble of love had begun to form around my heart. Protecting me from those awful appointments in cold doctors’ offices. 

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The frozen tundra of Central Park began to unfreeze just as I started to come out of my shell. As winter subsided and welcomed a New York City spring- our new life started to feel more comfortable. This is who we are. This is our life. Those words felt less terrifying.

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Until… we started planning her first surgery. Not the most major she would ever have. Not the scariest. But… signing some of those documents, watching her being taken for anesthesia. Cuddling her post-op with marker on her face and almost purple complexion. I came so close to the brink emotionally. With my family and friends’ love… I didn’t go over that edge. It was the second biggest hurdle I’ve faced in my life. The first being  her birth. Watching her thrive afterwards though was the first time I truly understood how much I was going to learn from my daughter the rest of my life. She would teach me strength. She would show me how not to dwell on the terrifying… just find the resolve to move on. Start a new day with a huge smile like nothing happened the day before. 

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By summer we truly had a routine. A life that felt natural… telling our story was second nature. I could tell anyone anything they wanted to know with full confidence. No shaking voice. No hesitation. I was certainly forever changed, but I’d returned to myself. I could focus on other things in my life. And.. upon a trip south with the family… we made a plan. We had the conversation seriously this time about leaving our city. Venturing to imagine a different life than we’d known for a decade. We chose Charleston and started madly making plans. 

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Amidst the rolling hills and winding roads, we celebrated bug’s BIG birthday in September. We gathered at my alma mater to celebrate so much. Our survival for one. Lacrosse another. And family. How our tapestries as individual families have begun to really weave together. New traditions and old going hand in hand. And I got to share a significant piece of my heart with my daughter. I dreamed of what it would be like for her to go to W&L. For her to follow in her momma’s footsteps. That weekend was the most special I had this year. It’s made me dream of Lexington ever since and reaffirmed that a smaller town was the best choice for us. It was clearly our destiny. 

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With the promise of a new life for our new family, we focused on Charleston. We told our friends. We told our jobs. We picked a date and it rapidly approached. All too soon, boxes littered our small Columbus Circle apartment and a future house was closer to a reality. Then came the goodbyes. Within both of my worlds- the mother and the worker… I had found such nurturing homes. At Clarke and at work- I had friends who helped piece me back together. I hadn’t a clue how to extract myself from such nurturing places. How to leave these people… for essentially one or two friends in my new life. I was leaving a city I loved and a decade of memories to stay for a year in a town of retirees and off season beach goers.  I didn’t want the city life anymore but was I crazy? My closest set of friends were over an hour away. But… this was a choice for Landon. For my family. For future dreams.  I didn’t come first anymore. And off we went.

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Our life here has been transformative, frustrating, love-filled, memory making, challenging and full of growth. Our marriage has been stitched back together. Our family has learned how to coexist in this sleepy town, during winter of all seasons. I feel more hopeful for our future than I ever have. Our dreams are closer to a reality. Our hearts brimming with pride over how much Landon has grown here. With freedom to roam… literally.. she’s taken off. 

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As this year comes to a close… I am in awe at where we started and all that’s happened. As we all should, I have reflected on my own personal growth. I learned how to be a warrior. I learned how to run towards the challenges. Embrace the would-be pain and turn it into love. I’ve learned to believe in myself. Trust my instincts as a mother and a wife. 

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2014 feels daunting- building our first house, building a business and a nonprofit. Building a new life in a new city. If this past year has taught me anything though it’s that we’re capable of hard things. We can succeed at anything if it’s done together. 

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So.. dear readers… our little family wishes y’all a very happy new year. I hope your time of reflection gives you peace and resolve for this next chapter in your own lives. Thank you for the love. Thank you for the support. We can’t wait to start this new journey with you.

xoxo,

Eloise

No rest for the weary

Five ambien-induced hours of sleep again. Hours awake at night spent researching the likes of “what happens to a child with a major gap in speech therapy” to “likelihood of a second gene mutation in another child.”

I run. I walk in the beach. I’m exhausted when I go to bed but still… my mind saves these topics for when I lie down. All the details are front and center only at night. My subconscious works through things in such mysterious and annoying ways.

I’m so frustrated she doesn’t have therapy that I cannot see straight. After New York where it took one week… I’m flabbergasted. She hasn’t said a new word or sound in three months. To those of you whose children don’t have hearing loss- we count every new sound as a major triumph. Every new word is a party. When younger children say “bye” or “shoe”…. I feel like part of me is crumbling. She’s walking… She’s smiling. There’s a lot to be thankful for.

But when you are your child’s advocate, and your advocating gets you no where fast… what do you do? Write your congressman? Senators? I have no clue. I’m really asking though so send me any ideas.

I’m fighting for her on email and voicemails. It doesn’t feel like enough. What if I didn’t annoy these people so much- how much longer would it take then?

Bug is stirring. Off to start another day…

Xoxo
Eloise

The second time around

I’ve been wrestling with something. If I’m up at night, thinking or worrying about Landon… something new has creeped into my mind. When we meet people at church, the gym or I talk to my best friends on email… it comes up.

Baby number TWO.  I’m torn in so many directions it’s hard to know where to begin.  

The struggle usually looks like this: I’ve always wanted two children. Now that I have a handle on bug, it’s probably time to have the second since I’m not getting any younger. What if.. though. What if our second child has TCS. What if it’s much more severe. What if we start dealing with two children in speech therapy, two children facing surgeries. What if. What if I have to go through another hospital experience like I’ve already had. Will I lose all sense of myself and my relationship? I just got some independence back… will I lose it completely? I still feel like bug needs me to focus on her. Will she still thrive if I’m splitting time between her and an infant?  Can I do 3 am feedings again? Oh man… sleep…. 

Bo doesn’t understand why I torture myself with questions of the unknown. What I cannot explain clearly enough is that it’s not a choice. I don’t want restless nights struggling with this issue. It just is what it is.  It’s how my brain and heart work.  I wrestle with something until I find answers or find peace. Or both. 

My friends that all have one child are already planning their second. Or they just had their second. Or they are onto their third. They don’t have these battles. They don’t know what it’s like to have this internal turmoil- to be worried and then feel guilty for the worry.  So I feel isolated in this struggle as a mother… adding to pains of loneliness in this new life we’re living in SC. 

On one hand, if baby number 2 is as funny, charming, happy and sweet as Landon… I want he or she tomorrow. I want to fill our new house with our two children giggling. Of them sharing secrets and hugs and curling up under a blanket to watch movies together. Why wouldn’t I want more of this motherhood given how amazing bug is.  I’ve always wanted and planned for two. I wanted a sibling close to my age all my life. I have also wanted Landon to be a big sister as I’ve watched her grow up. She would make such an amazing big sister. I feel so strongly that she needs a sibling also. One to help protect her heart. One to turn to if there is bullying. One to be there for her when she doesn’t want to tell her parents something and vice versa.

Then….I remember my first week in the hospital. The heartache. The gut wrenching crying. Cursing God. I remember existing in pieces. Terrified. The unknown laid out before us. I know I can do hard things. Overcome huge obstacles. I do not believe in all sincerity I could do this kind of unknown again. That.. right there… makes me feel so incredibly terrible about myself.  It’s going so well with bug… with her therapy and planning her future. Why couldn’t I then?  

Some close to me turn this into a conversation on faith. “If it’s God’s plan…” and so on.  What I’ve learned though is that’s not exactly helpful in settling my mind and heart.  I have faith, sure. I do believe that I’m bug’s mom truly for a reason.  But my faith doesn’t settle my heart always. I’m quiet and private in my faith and still unsure what I totally believe. But that’s for another blog post. 

I’m not entirely clear what I want out of this post. What the message is.  I think it’s simply to let y’all know what’s going on with me lately. What’s on my mind and what’s been hard for me to say out loud. Writing is always easier.  

For now though… it’s coming on Christmas and bug is busy carrying ornaments back and forth, from room to room. She’s climbing stairs at any given moment, rearranging the dog leashes, terrorizing our new rescue dog by chasing her with her harness, taking everything in a cabinet out and then putting it all back in on different shelves. She’s busy growing up.  I’ll try to give myself a break from this struggle at least until the new year. Enjoy the season. Enjoy my girl. 

And for y’all… enjoy a picture of bug from last year and then one after our Xmas card shoot (can’t spoil that photo reveal…). My how time does fly…

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Happy Monday…

xoxo

eloise

Revisiting

Days strung together with so many questions. Around town, the interesting (that’s a word for it) evaluation, a specialist.

What are those things on her head? What syndrome does she have? What is Treacher Collins? Why emergency c section? Did you know when you were pregnant? Is she talking? How many words? No words? How many sounds? Is she walking? No? Are you worried? What muscles on the eye did they move? Did anyone tell you to patch the eye? Did anyone tell you she may need glasses? Can you wait another hour? Are you free for another evaluation in 2 weeks?
She’s actually doing so well, are you okay with only a few therapy sessions a month?

Ummmm… No… I am NOT.

If you couldn’t tell… tonight I snapped. And cried in bed to Bo, wearing old leggings, two different socks and with dirty hair. I might have unraveled a bit this week and it’s only Tuesday.

I moved, I know. I signed up to start the process over. BUT… It still hurts… the revisiting. It stings. I can’t articulate clearly to husband why. It just all sucks some days. Why her?!?! I mean… That question still pops in my head. Is that normal? I am guessing yes, actually.

Some nights I need to wallow. I think that’s okay. We have these rotten feelings some nights so in the morning when our littles hug our necks and give us slobbery kisses- we can start over. Fresh day, more love. Leaving the emotional freak out behind… new strength to soldier on.

Night y’all,

Xoxo
Eloise