Tessa’s Story

Site created on August 31, 2022

Welcome! If you are visiting this site, we consider you one of "Sawyer's Warriors." We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

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Journal entry by Tessa Miller

Thank you to everyone for joining us last night to honor our sweet Sawyer. For those that couldn’t make it, I wanted to post his eulogy and tribute video here.

VIDEO: https://www.dropbox.com/s/jonzasakiqxboz9/Sawyer%20Tribute.mov?dl=0 

Sawyer didn’t get to meet most of you, so I’d like to take the next few minutes to tell you a little bit about him.

So many people tell us how brave we are for so openly sharing Sawyer’s story. But we’re not the brave ones at all. It’s the bravery of Sawyer that inspired us to be the best parents every day. Loving him was so easy, and advocating for him was our greatest honor. 

Sawyer lived for 84 days. He spent a total of 20 nights at home, 7 nights in a hotel or at the Ronald McDonald House, and 57 nights in the hospital. 

He was wise beyond his 12 weeks of life- and seemed to grow up so much faster than other babies- something many nurses acknowledged and contributed to living in a hospital. 

Sawyer had more x-rays, echocardiograms, pokes, and medications than most anyone in this room will ever have. But, for the most part, he didn’t seem to let it bother him. 

One afternoon, the nurses rolled him out of his hospital room in his crib to take him down for another X-ray. He kept looking from side to side as he rolled through the halls, past all the nurses and rooms… I’m pretty sure he just thought he was on a sight-seeing tour of the hospital. In that moment, he was having the time of his life. 

At least twice, he fell asleep during an echo. For those that don’t know what an echo is- it’s an ultrasound of your heart. He’d become so accustomed to the weekly task that he just decided it was easier to fall asleep with the warm gel on his chest. Other times, he’d just bat his big, beautiful blue eyes and long lashes at the technicians, making everyone in the room smile. 

Some might not think a baby so small could have already developed such a big personality- but he did. 

He loved his daddy’s voice, and his cuddles with mom. 

He loved it when we’d pull him into bed with us early in the morning.

He loved his heart warrior binky- and loved it even more when he figured out he could make it squeak.

He loved fresh air, and anytime he got to go on stroller walks with mom and dad. He’d be so happy when we’d get back, that he’d smile and coo for an hour on his playmat or staring at his mobile. 

He loved his Snoo bear and his Ollie swaddle at bedtime. 

He loved his visits with his grandparents and uncles. 

It was so easy to make Sawyer happy. 

One morning, the sun was shining through the hospital windows and I put on a “good vibes” music playlist and just danced and sang with him. I’d do anything to have that joyful moment with him again. 

On one of our last nights out of the hospital, Sawyer woke up at 4am like he always did. He was so snuggly and smiley in those early morning hours. We stayed up a little longer than usual playing shadow puppets on the ceiling. He was mesmerized. 

Sawyer LOVED kisses from his mom. I’m not sure who loved them more- him or me. When Sawyer was born, we were so scared to make him sick. If he got sick, he wouldn’t have been able to have his first surgery on time. So, we didn’t kiss him for his first four days of life. It felt so wrong to not kiss our newborn baby. I waited until New Year’s Eve at midnight- and gave him the biggest kiss on his forehead. Over the following weeks, I tried so hard to make up for those first few days. He knew when I’d be coming in for a kiss- and would smile so big and try to kiss me back. 

Living in a hospital, you develop an appreciation for all the simple things.

Like just hearing Sawyer cry after his surgeries made us so happy. To any parents in the room- cherish those sleepless nights.

We met dozens of doctors and nurses- I think we tried to count one night- somewhere around 100. 

A few of them went above and beyond to care for Sawyer- and us. 

Emily. Jenn. Matt. Lee. Kate. Titus. Micaela. Amanda. Rachael. Sherri. 

Some of you are here tonight- and we hope you know how grateful we are for the love you’ve shown our family.

We’ve also met a few families who’ve reached out to us and offered us support- all while they’ve faced their own uphill battles- 

To Chelsea, Chris and Lyle,

Mariah, Bryan, and Rhodes

Julie and Lucas 

Kartik, Soujanya, and Druhva 

Maddi, Corbin, and Palmer

Jesse, Roger, and Luke

Max, Talia, and Sienna.

Emmett. Lisette. Bode. Braven. Hudson. Elliot. Henry. And Marcelo.

And so many more. 

You’ve provided us with community. 

We will say your names and tell your stories and cheer you on forever. Sawyer’s fight will continue on in you and for you.  

As Sawyer recovered from his second surgery- we woke up anxious multiple times in the middle of the nights to check on him- to make sure he was OK. And finally, after 5 really hard days, Sawyer had a really good day. We woke up to change his diaper in the middle of the night and saw him smile and heard him coo. We cried happy tears- our boy was back. He gave us one last wonderful day with him. 

One nurse told us that not all babies who live in a hospital smile like Sawyer did. It was a testament to the fact that he was so loved. 

It’s ironic- after two open heart surgeries, a cardiac arrest, and being on life support- Sawyer’s heart beat until the very end.  

So many of you have asked what you can do for us: please keep saying Sawyer’s name and telling his story. The little boy with the biggest fight and the most special heart. Sawyer the Warrior. 

We were looking forward to hearing his first laugh, dressing him up for Easter and taking him to his first Mariners game this summer. While we can’t do that now, we know he’s always with us- in the moon, the stars, and the sunset. He was baptized before he passed- and we look forward to seeing him again someday. 

To my baby boy, my sweet Sawyer-

Heaven blew every trumpet, and played every horn, on the wonderful, marvelous, night you were born.

I love you forever, I’ll like you for always, As long as I’m living, My baby you’ll be. 

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