One year today since the Fontan. A year full of pink lips, Jiu Jitsu classes, lemonade stands, and lots and lots of ordinary days, which sparkle the brightest. We prepared for this surgery since well before Sunley was born, and that lead up didn't wear off immediately. We chose the surgical path for our unborn baby a month before she was born, knowing that we could get 3 or 4 years in and then have a failed Fontan. It’s a huge leap of faith that we made with the guidance of the most experienced doctors in the country. And it was either that (surgeries) or let her go. And I have to say, even if her Fontan had failed and she had passed away, I would still have been glad we made this choice. That’s a very deep and extensive topic that I won’t hash out right now. The whole experience changed my life in so many amazing ways. The enemy tried to shake me up and even break me, but what he didn’t know is that I’m a freaking glow stick.

Sharing again this poem I wrote last year:

I wish I was an artist

So my feelings I could paint

When I watch my children suffer

And all I can do is wait

I wish I was a doctor

So I could understand the words

They use to justify the wounds, the pain, and all the hurts

I wish I was a funny clown

I'd always make you smile

Even in the hardest journeys

With never-ending miles

I wish I was a dragon

With a cunning mouth of fire

I'd fly you far away from here

To wherever your heart desired

I wish I was a scientist

Who fixed all the broken things

You never would have worn the scars

Or had a single scary dream

I wish I was the tallest tree

Up which you'd come to hide

We'd spend the day with yellow birds

And never go inside

I wish I was an angel

I'd whisper sillies in your ear

I'd guide the hands of surgeons

And show your eyes that God is near

But here I sit, just your mother

Wishing there was more that I could do

I'll say it more than you can stand

A thousand I love you's

Just your artist mother

Hang some decorations

Just your doctor mother

Gather information

Just your funny mother

Sing some silly songs

Just your dragon mother

Tell the doctors when they're wrong

Just your science mother

Fundraise to find a cure

Just your tree branch mother

Make you feel secure

Just your angel mother

That's the easiest to be

Cause when all is lost and stripped away

God is just so clear to me

I did not want to take my beautiful 3 year old into the hospital for another palliative surgery, knowing the Fontan is only a bandaid on a bigger problem, but I knew it was the right choice. She went in having had almost 4 years of oxygen saturations between 72-80 and came out 12 days later with saturations that sit around 97. She also now has chronic ankle pain and spots of cyanosis, but overall this year has been FULL of living life, and those high oxygen saturations still take my breath away. Sunley has very few limits, and for that we are so thankful. No one knows how long their Fontan will last, but all of Sunley's doctors agree that her physiology stands a really good chance of doing well with this circulation.

Her story could have been so different. We've watched 9 other single ventricle buddies pass away in the year since Sunley has lived with a Fontan -- all under the age of six. There's lots of feelings of guilt and anger that come with that, but I feel like I would be dishonoring those families if I let those feelings outweigh the gratefulness and joy that accompanies all of these heart journeys.

This time last year, her big sister rose at 5 am to say goodbye again -- something she's had to get used to. I don't know what it's like to be a heart warrior sister, but Hadelyn wears that badge of honor well. She knew how serious heart surgeries are, and I wonder what her 9 year old soul was carrying. Hadelyn has had to do these goodbyes over and over — some planned, and some very sudden and emergent — and she always seems years older in those moments. Ruger processes it differently; quietly and internally. He is the one who will ask me days or even weeks later random questions that always hit hard. Even when he seems distracted, he is paying attention. And Davis —last year on this day, she was around the same age that Ruger was when Sunley was born. The whole day was full of flashbacks and reminders like that. Ruger was so little when he had to leave his mom for such huge chunks of time, and I hate the feeling I get when I think about that. I doubt that Davis will remember any of this, and it’s crazy to think that she may never see Sunley have surgery, if things go how we hope they will. She will have a different experience than the other siblings, though certainly no less impactful.

Sunley's grandpas walked her to the car and gave their hugs, and then Derek and I took her in, waited a bit, and handed her off. Again. The picture of her being wheeled away is blurry because my hands were shaking. The full story of how April 18, 2022 went is HERE