walt…our warrior

My hands wouldn’t stop shaking.  Honestly, it was annoying, because somehow my shaky hands seemed to stop my breathing, which opened the dam of tears waiting in my eyes.  But it was time.  It was time to go and meet precious Walt – the sweet baby that I had prayed for since the moment I knew he was growing in his mother’s womb.
I walked down the long corridor through hallways filled with jungle murals and rainforest sounds.  Damn camouflage.  I was glad it was there to maybe reassure tender hearts, but I ached as I imagined the pain of the parents here with their children.
I found the pink elevator.  It was not-so-conveniently located in the way, way back.  At first, I was angry.  I think I was just angry that I knew my precious friends were going to have to say goodbye to their child, but it was easier to talk it out on the hospital.  It was easier to feel like an injustice was done to these precious mommies and daddies living out of the CVICU.  How could it be okay that they had to walk to the very back of the hospital to be with their precious babies EVERY freaking day?  Were we hiding these heroes in the back because they made us uncomfortable?  With each agonizing step, they had to steel their gaze and make their way to the back of the hospital to reach the pink elevator, all so they could accept the brutal gift of walking their precious little one through fighting for their very lives.
I tried to breathe.
I couldn’t find his door.  I remember crying over this.  WHERE IS HIS DOOR?  Where is this precious boy?  I yearned to hug his mom and dad and every family member.  There should be neon lights.  This precious baby boy is one of the greatest fighters and lovers the world has ever known.  WHERE ARE HIS NEON LIGHTS?
I finally found the check-in desk.  I asked for directions and choked back tears as the nurse directed me.
His grandparents greeted me.  It took a moment – the last time we’d seen each other was five years ago, me – belly full of baby, Liz dressed in white with cotton adorning her beautiful bouquet and Trey beaming in his tux as he found himself unable to take his eyes off of the love of his life.  We both started crying.
“Would you like to meet our precious grandson?” Trey’s mom asked.
“I’ve been waiting 9 months to do so.  Of course.”
And there he was.

Precious little 9 month old Walt.  Liz and Trey combined into a perfect little boy who was made extra perfect by one extra chromosome.
He was covered in a sea of tubes and wires, but I hadn’t driven 8 hours to stand back and miss out on his joy.   I snuggled into him and was given specific instructions to hold his sweet hand because he was a master at pulling out one of the cords.
Of course he is, I thought.  This little man has spunk – just like his mom and dad.

We talked.  We talked about Nemo and his mom and dad’s wedding day and how he was one of the greatest joys of their life.  We talked about his amazing family and how they ADORED him.  I marveled over his sweet hands and I found myself lost in space and time as I was captivated by his precious toes and fingers.  We talked about his fiesty great-grandma Nina and how though all of us hated that we wouldn’t still have him HERE, she would be right by Jesus’s side to meet him.
Here amidst the cords and wires and monitors, I never felt more at home as he and I talked.  I used words; he used his precious eyes.  He was such a great communicator we didn’t need words..
Eventually, Liz and Trey entered the room.  They had been meeting with the doctors to plan their son’s goodbye from this world.  This is worth repeating, this precious mom and dad had to sit down and plan the details for the very moment that leaves all parents unable to breathe.  My mind could not comprehend it.  My body couldn’t handle it.  But Liz entered the room and Walt’s eyes went to her and we held each other and cried while I held sweet Walt’s hand like it was MY JOB.  Like somehow – holding his hand could make this better.
I ached.  How could two of the kindest, most gracious people in the UNIVERSE say goodbye to their boy?
Some questions have no answers.  Much of life exclaims this.  But when it doesn’t have answers – it may have beauty.  In this case it absolutely did: I got to watch Liz and Trey with Walt.
For 6 months, these three had invaded the hospital with hope, laughter, joy and tenacity.  Walt faced multiple heart surgeries…like a BOSS.  He faced more challenges than we could begin to understand and all before 10 months of age.  And Liz and Trey made home in the most unlikely of places because love pulls up a chair and makes a home there.  Walt charmed the entire nursing and doctor staff and melted hearts while his struggled to work.
Liz and Trey?  They gave him every last thing they could.  Every smile.  Every tear.  Every bathtime song.  Every loving diaper change amidst cords that reminded them that they couldn’t hold their sweet man like they should, nor could they spend their nights rocking in the exquisite room Liz had so beautifully decorated.  They gave up what should be to see the beauty of what was – a precious son who was teaching the world to love through his broken heart.
The next day, I traveled the same path through the rainforest jungle to the pink elevator.  I wanted to throw up.  How can we walk through this?  It simply cannot be done.
I arrived to Walt’s room and greeted my precious buddy and his amazing parents.
I pulled out my camera to document their last moments on this earth as a family.

Liz and Trey gathered around their sweet Walt and began his last bath.  They sang their precious bath song and tears escaped my eyes so fast I soon had streaks down my shirt.  I saw the same stains on every nurse and every doctor who come by to say “I’ll see you soon.”
For the next hour, I watched as Liz and Trey whispered love into his ears and little Walt followed them with his eyes.  At every moment, you could see Walt’s eyes sharing precious messages.  I know his mom and dad know his words best, but here’s what I think I saw him saying:  “Mom, Dad…I’m going to be okay.  No one could have loved me better.  NO ONE.  You have championed me.  You have welcomed me into this world that sometimes wouldn’t want to because I have an extra chromosome.  I know I surprised you the day I was born.  You hadn’t known I was extra special.  I know it was hard to learn that I had heart problems and would face surgeries.  But what did you do?  You loved me more fiercely and selflessly than could be imagined.  I treasure every moment with you.  Your songs.  Your nicknames.  Your kisses and your hugs.  The way you’ve fought for me.  The way you’ve shown up day after day and read me all of my favorite stories.  No one reads like you two.  I know the end is near, but know this – I know love in a deeper way than most people experience in a lifetime.  Because of you.”

While he delivered these messages through his eyes, Liz and Trey leaned in close to remember his scent.  To remember his soft cheeks.  His tiny toes.  And they whispered their own words… “Walty, we love you.  We love you BIG.  And you have taught us to LOVE BIG.  You’re going home today.  We will miss you more than we can ever explain, but you’ll be home.  You’re going to be able to play and run and you’re going to meet Jesus.  Oh Walt, He loves you.  He made you perfectly.  And Nina will be there.  And Lolly…and Grandma & Grandpa Bernie.  And one day – we’ll be there with you.  You just wait for us.  We cannot wait to be with you FOREVER.”

It came time for Walt to make the journey from the hospital to his home.  Trey rode in the ambulance with his baby boy and Liz and I walked out to her car to get home so she could greet her boy.

With family and loving doctors gathered around, Walt’s sweet face was released from all those tubes and we admired his precious face as he took his last breath.
It was the most brutal and beautiful moment I’ve ever experienced.



We miss you, sweet Walty.  The ache is ever near.  Your mommy and daddy are my heroes, but I know their hearts hurt as they miss you.  They miss your toes.  They miss your talks.  They miss YOU. We all do.


Sweet Walty, we won’t forget you.  We’ll keep sharing your name and the message you taught us – to LOVE BIG.  To treasure today.  And to pull up a chair and make a home wherever we find ourselves – because that’s what love does.




  1. Heather Humrich says:

    Oh Amy, your sweet heart shows through in your love and compassion. This is the most beautifuly heartbreaking thing I have ever read.

  2. Taylor Johnson says:

    Walt… You will never be forgotten… And your life has spoken volumes to myself and my husband… You are a special angel of God and I lift your parents up during this heartbreaking time… Let us all Love Big! We miss you already!

  3. Carrie Middlebrooks says:

    To borrow your perfect words Amy…”beautiful and brutal”… Thank you Liz and Trey for sharing your precious Walt with us. He will not be forgotten.

  4. […] One month ago, I drove through tears to document their last moments with their precious 9 month old son, Walt.   […]

  5. Lynne says:

    I came here via your sister, I think…Glennon Doyle Melton. Because I’ve been basically obsessed with the USWNT.

    I can’t play soccer because I’m super uncoordinated, but also because I have a rare congenital heart defect.

    Anyways, I just want you to know that as an adult survivor of Truncus Arteriosus, I carry all the children like Walt with me every day, in my broken but mended and now stronger heart. They remind me how lucky I am to be alive, and it is because of them that I’ve started sharing my story and have started fighting for the push for universal healthcare.

    Thank you for sharing this story.

    I don’t know how I ended up reading this today, on Memorial Day, of all days, but it was needed.

    Sending all my love and prayers.

    Thank you.

    • amypaulson says:

      Oh sweet Lynne! Thank you for being here! Somehow – amidst moving I missed your comment and am so late in responding – but THANK YOU. Thank you for carrying these precious ones in your heart. What a gift. So grateful for you.

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