A Complete Collection

It’s strange and sad to think that all the pictures and videos we have of Olivia are all we’ll ever have. Surely our memories with her will last a lifetime, but the actual collection of pictures is complete. I’m thankful we have (literally) thousands of pictures of her, but it’s a hard pill to swallow that there won’t ever be another. It makes me cherish every single one more than I thought possible. Even the outtakes. The ones I wouldn’t post online because I worried about how she looked hooked up to so many machines and with tape across her face. The ones I didn’t share on the blog because the lighting was bad, or the picture was too grainy, or her outfit didn’t match her blankets that day.

Every single photo now means the world to me. They bring me back to a very concrete moment in time when she was here and we were there with her. I still scroll through the “favorites” album on my phone a few times a day, and I usually watch at least a couple videos so I can see her little fingers waving in the air or catch her raising her eyebrows at us. I’ll re-watch a video where she starts crying because I’ll never see her cry again, or I’ll watch the clips of her on our walks outside because it reminds me that we gave her as much as we possibly could.

Anyways, this thought all started because I’ve been creating a few physical artifacts to help us remember Olivia. Videos like the one above, framed art, photo books etc.

While working on each project there’s been this overwhelming sense of finality. Finality might be the wrong word, but the thought crossed my mind that I probably won’t ever make another video of Olivia… because we won’t have any new material to work with. And the photo book I’m putting together isn’t going to be just the first of many. This will be the only one. The word that keeps making its way into my mind is “complete”. I’ve now organized all of our pictures: from my phone and Luke’s, from my big camera, from Jocelyn and from Now I Lay Me Down to Sleep. I’ve organized the pictures and the videos separately, grouped certain events in aptly labeled folders, and as I did so I realized that all of these files represent Olivia’s entire life captured on camera. It’s like this amazing collection that I will never, ever let out of my sight. I cherish it and love looking through it, and yet the whole time there’s this constant reminder that this collection of photos and videos is complete. It will always be exactly as it is right now.

This video above is one of the things I recently started… something I’ll add to the collection of things that capture Olivia’s life as a whole, from start to finish. Something we can watch over and over again whenever we want to see our little girl. Something to remind us that she was fiercely courageous and just so darn sweet, and that that’s how we should be too: relentless, strong, full of life.

I hope you enjoy watching it as much as Luke and I do.

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How To Vacation After Loss


Take daily walks.
Touch the ocean at least once a day.
Drink water.
Cook meals consisting of only whole foods.
Read more than one book,
but watch TV if you want to.
Go to bed early.
Don’t set an alarm.
Be okay (not bored) with the simplicity of it all.
Enjoy the silence; don’t break it.
Stare at the sky for as long as you’d like.

See her, everywhere.
See her in the beams of sun, the blue sky, in the stars at night. In the birds and the dragonflies. See her in the seashells, and the shapes in the clouds, and the rainstorms. See her, everywhere, and say hi.

Hear her in the whistle of the wind, in the waves as they wash ashore. Hear her as the water rushes out to sea, running over the seashells, sounding like a thousand ringing bells. Hear her giggle and whisper “I love you, too.”

Listen closely. Listen to her tell you stories about heaven. About the friends she’s made, and the people she’s met, and all of the things she can do now. Listen to her tell you how strong she feels now. How free she feels, and how her arms and her legs wiggle with delight as she twirls and spins and dances in circles.

See her, everywhere. Hear her, and listen to her, and hold on to those sights and sounds. Keep them close and don’t let go.

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Leaving Town


Two days after Olivia’s funeral, Luke and I boarded a plane and left town. In the days immediately after Olivia passed away, we Googled locations, scoured sites for accommodations, and discussed why we wanted to leave town. We didn’t know where we were going yet, but we both knew that we wanted to go. Go somewhere, anywhere. Just go. But what did we want this trip to look like? What did we want to get out of it? It was important that we understood one another’s expectations for this trip, before making any final arrangements.

We both wanted to be somewhere quiet. Somewhere somewhat isolated. We wanted to do nothing, or anything… whatever pleased us most at any given moment. I had visions of riding a bike into a small town each morning to get coffee. Luke dreamed up a list of online classes that were of interest to him.

What seemed important to us both was to be away, to be quiet, and to be gentle on ourselves. To not make too many rules, and go easy on expectations. Be flexible. Do what felt right in the moment.

We’ve since made plans to ‘be away’ for two weeks. We’re in Florida, where it’s hotter than hot, but the sun’s been shining, and the storms give us quite the show each afternoon. We can hear the ocean from our bedroom, and take naps when we want to, and there are endless amounts of beautiful, serene things all around us.

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Funeral Services and a Celebration

We’ve already started to share some of this information, but in order to ensure details reach those who are interested: a funeral service for Olivia will be held at 2:00PM this Friday, July 15, at the Church of the Transfiguration in Pittsford, NY. The address of our church is 50 W Bloomfield Rd., Pittsford, NY 14534.

After the service, we are inviting everyone to join us at Oak Hill Country Club (145 Kilbourn Rd., Rochester, NY 14618) between 3:30-5:30PM for a reception of sorts. There will be drinks, light food, and hopefully nice weather for us all to enjoy as we celebrate and appreciate the beauty of life in Olivia’s honor. We’ve reserved space that includes an indoor area as well as a connecting covered patio (the Oak Room Lounge and the Hill of Fame Patio). Everyone is welcome, and you should feel free to stop by for 5 minutes, or stay for the full two hours. Please note that Oak Hill has a no-jeans dress code.

Although Luke and I kept much of Olivia’s journey private to close family and friends, the funeral service and celebration of life/reception are open to anyone who is interested in attending. By no means should anyone feel obligated to attend, but please know that we’d be honored to have you join us, and feel free to pass along this information to our friends, extended family, and/or acquaintances where it feels appropriate.

In a similar light, we’ve removed the password from all prior posts. Now that Olivia has passed on, we feel it’s more appropriate to open up her whole story to anyone who stumbles upon it.

Information on Olivia’s services will make its way to print tomorrow (Wednesday) in the Rochester D&C, the Poughkeepsie Journal, and the Portland Press Herald.

Memorial donations may be made to the Golisano Children’s Hospital’s Neonatal Intensive Care Unit (NICU).

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Monday Morning

Yesterday afternoon, Luke and I drove home from the hospital with a trunk full of Olivia’s belongings. We came home and took a nap. We sat on the back deck, and made a toast to Olivia. We picked up the house, cooked dinner, and watched a movie. I can’t say those are the things we thought we would do after losing our daughter, but those are the things we did. We drove with the windows down, wanting to feel the outside air, and appreciate life. We watched two dragonflies buzz around our back deck, reminding us of the line from my favorite Olivia book about ladybugs who didn’t fly away.

We cried some, and talked a lot, as we thought about Olivia. I laughed out loud while we ate dinner, thinking how silly she looked when she smiled. And then I cried, reading sweet comments on yesterday’s post, or pouring in via text and email.

It’s been almost one full day since she passed. Almost.

And the feelings we’ve felt so far are pretty indescribable. The whole situation seems surreal. There is no textbook on how to grieve, no roadmap for loss. And that’s become pretty apparent to us. Before she passed, we spent weeks imagining what we would feel like afterwards. What would life be like without her? What would we be like? Would we ever be okay, or would we be forever bitter? Would we go back to “life before Olivia”, or would we change directions, for good?

Luke and I are okay.

Our grief will last a lifetime, I’m sure, but we’re okay. And we want you – our family, our friends – to know that.

We probably won’t write here for too long, but there are certainly a few more stories we want to share. In the next coming days, or coming weeks, we’ll share more information on Olivia’s condition, what we learned about her this past week. We’ll share pictures from her visits with family, and stories from her favorite nurses, and I have to assume we’ll share our thoughts on grief too.


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Olivia Goes Outside

Earlier this week we shared that Olivia went on a few big adventures last weekend, making her way outside for the very first time! We visited the gardens, picked some flowers, and went for a few long strolls. We walked and talked and sat on the benches as a family, and obviously took countless pictures and videos to capture our trips.

Overall, we’re telling ourselves that Olivia loved it, seeing the trees and the sun and the blue sky. Feeling the warmth of the sun and the wind on her face. She kind of hated the wind, and cried every time we went over big bumps, but all in all she enjoy it.

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Olivia Meets a Flower

In recent weeks, Luke and I have been having more and more conversations about Olivia’s fate. What will her life look like? How long will she be with us? Will she come home?

The possibility that she may pass away before ever leaving the NICU – no matter how unbearably sad that is for us to imagine – is real. And no matter how many times I’ve been encouraged not to get ahead of myself… not to think about outcomes yet… to stay in the here and now… I can’t. I don’t.

Ultimately, I go there. Usually multiple times a day.

I think about things like how she may never feel the fresh air, or feel the sun. I think about how she might never enter our home, never spend a night at home with Mom and Dad. She may never wear a Halloween costume, or see Santa. I think about all the friends and family members she may never meet. The places she won’t be able to visit with us.

Some things I think about are silly, like Halloween costumes and Santa. Some are sad, like meeting family members, and visiting places that are special to us.

Others are just downright innocent: the warmth of the sun, the feeling of sand beneath your toes at the beach, the way the air starts to smell differently in the fall.

And while not every innocent thing can be bottled up and brought to Olivia, some certainly can. So I’ve decided to do just that. Even if it means sneaking things in and breaking NICU rules. Dr. V – if you’re reading this, no fair telling on us!






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Pink Zebras


There’s a saying in medicine, that goes something like “When you hear hoofbeats, think of horses not zebras.” If you’re unfamiliar with the aphorism, as both Luke and I were before Olivia was born, Google it later. For now, just stick with me.

See, in the world of medicine and diagnoses, there are horses. And then there are zebras. There are the more common, obvious diagnoses. (Those are the horses.) And then there are the zebras: the unexpected, the uncommon, the rare. The saying itself is actually directed towards medical professionals, and it has to do with the process (and risks) of reaching a diagnosis, but that’s not the point right now.

The point is that there are some conditions that are common, and some that are rare.

In Olivia’s case, it’s like we’re searching for a zebra on the streets of Western New York. For two months, she stumped the hospital’s top geneticist and top pediatric neuromuscular specialist. Time and time again they would visit her room, assess her, pick up on physical anomalies and point out new “clues”, but left telling us that she didn’t seem to fit the mold of any one particular disorder. And these people are no slouches! These are the specialists whose colleagues describe as “the encyclopedia of genetics”. Another team member described one by saying, “he’s the kind of guru who can diagnosis a child with a very rare disorder while still standing in the doorway, before he even walks into their room. Literally.”

To stump the best of the best is quiet impressive, little girl.

The gene sequencing seems to have confirmed it. Olivia’s symptoms are all relatively common when compared to some families of neuromuscular disorders. Muscle weakness, respiratory complications, the facial features… But the specific gene mutation identified in the test has never before been described. Never.

Olivia Grace, meeting you is more special, more unique, more truly one-of-a-kind than encountering a zebra on the streets of Rochester. 

All of this is particularly intriguing to me. Intriguing, and ironic, and magical all at the same time. Because of this piece of art above. I began looking for inspiration for Olivia’s nursery in December. I originally wanted something classic with a splash of sass. I didn’t want the room to be filled with anything overtly girly, or baby like. I wanted the room to fit in with the rest of our house, and for those of you who have never seen our house: there is not one ounce of pink. Well, the direction of her nursery took a drastic turn. It is absolutely overtly girly, and filled with things that scream “nursery”. It is so clearly a baby’s room, and there is far too much pink, and most items will be outgrown, but oh well. I went there and I kind of love it so it is what it is. Baby girls will do that to you, I guess.

Back to the intriguing, the ironic, the magical part.

The photograph above was the start of my vision for Olivia’s nursery. It’s called Hot Pink Zebras by Gray Malin and it was the first item that I pinned on my secret Pinterest board for inspiration. I had planned on buying it and hanging it nicely centered over Olivia’s crib, and it was meant to be the starting point of her nursery… the focal point of her entire room.

Pink zebras strutting across a field. 

I fell in love with this photograph, because I didn’t want to fill my daughter’s room with princesses and pink hearts and butterflies. I didn’t want to cast any stereotypes or expectations on her. Instead, I wanted to tell her she could go anywhere, do anything, be anything she wants to be in this world. That she should feel no boundaries, no limits in the world. That her life, her world could be as big and interesting and unique as she could dream up. I wanted to tell her that anything was possible, even being a pink zebra.

Well, I didn’t buy the photograph. Turns out that poster sized photographs by Gray Malin are expensive. But I didn’t let go of the idea of pink zebras. A pink zebra is still a focal point in her nursery.


And now here we are, searching for answers – that in the world of horses and zebras, are most definitely of the zebra type. When days are hard and my head is filled with sadness and my heart is overcome with grief, I like to think about the idea of pink zebras. I love thinking about Olivia as a one-of-a-kind gal. And I tell myself it’s almost as if I knew just how special Olivia was going to be, even before she was born.

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I Love It All – Olivia’s Father’s Day Letter

Hi Daddy,

It’s me: Olly olly oxen free! Just kidding. Olly olly OLIVIA. Ooooh-LIIIV-iiiia! Isn’t saying my name so fun? I love my name. I love music, and milk, and my mobile, too! And guess what else? I love you! Duh, Daddy. I love you more than most things. Except maybe my milk. My milk is my most favorite thing. I think. Actually, maybe I love you and Mom more. I’ll think about that one and get back to you soon, okay? I’m still figuring out lots of things so I just need a little more time to think.

Happy Father’s Day, Daddy.


I think you already know this, but you’re pretty rad, Dad. See what I did there? I made a funny! I made a rhyme! I learned about rhymes from you, Dad. From when you read me books, like Dr. Seuss. And books about little trains and little blue trucks. They all rhyme and you read them really well in this special voice that makes all the words flow one after another, in a voice that sounds almost like a song, where all the words somehow rhyme! You didn’t always read them that well, but you do now. And they always rhyme. I don’t know how you do that, but you do, and it’s pretty cool. So you taught me about rhymes, Dad! How cool is that?

I know it’s only been two months, but I’ve learned a lot from you, Daddy. I’ve learned about rhymes, and literature, and fancy music like Mozart and Yanni. Yanni is my favorite. But you already know that. I’ve learned about light switches and stinky shoes and golfing and even how to cook a potato.

You taught me about hugs and kisses, too. And you taught me when they all come at me at once, lots of hugs and lots of kisses one right after another, really fast, that’s called a smother. And it’s your favorite thing to do. You taught me it’s not Mom’s favorite, kind of like the mornings, but smothers are your favorite and I think they’re becoming my favorite, too. Mostly because they come from you. Daddy smothers! Keep them coming, Dad. That can be our special thing. Smothers. But no squeezing, okay Dad? Sometimes you talk about wanting to just squeeze me so hard, but Dad! I’m so little! You can’t squeeze me, or my head might pop off! So stick to the smothers. I love your smothers.

Your hugs and your kisses and your stories and your music.

I love it all. I love everything about you and everything you do with me and all of the seconds we spend together. All of it. I love it all.


I love you, Daddy.


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Room 15

Luke and I have spent the large majority of every day since Olivia’s birth, in the hospital, right by her side. Not a day has passed without us both being here. 52 days worth of driving to and from the hospital. 52 days of trying to catch the doctors’ rounds, caring for Olivia with her day nurse, greeting her night nurse at shift change, eating meals in (or around) the hospital. 52 days of heartbreaking goodnights as we leave to head home.

If Olivia has had to spend 52 days here, so will we. It’s been 52 days of stress and worry, but also 52 days of love, laughing at the funny things she does, soaking in the sweetness of our little Olivia, and making her surroundings our home away from home.

And neither of us would have it anyway, honestly. For any of you who are parents, that’s probably pretty obvious. Whether Olivia is here another month, or another 6 months, I cannot imagine letting a single day go by without one (or both) of us being by her side here in room 15.

So, room 15. Since the NICU comes with plenty of rules regarding visitors, and so many of you live far away, we thought it would be fun to share pictures of Olivia’s room with you. This way you can envision her day to day a bit better, and have a real vision in your head as your read about her journey.


View from the doorway
View from the doorway. Olivia’s crib and medical equipment are to the left, Mom and Dad’s space is to the right.
Our space. A couch and table that turns into a bed, a rolling desk so Dad can work remotely, a recliner chair, and closet.
From the other side
Nurses station, computer, Olivia’s crib, and machines
Peek at sleeping beauty
Books and books
Words of encouragement
Blankets, books, and baskets from home
The shelf beneath Olivia’s crib, where we store some of her clothes from home, sheets, diapers, wipes etc.
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