Sage’s Journey with CHD

02/26/2026

Life is a beautiful, chaotic, exhausting whirlwind lately. 💙

Raising four boys is already a full contact sport, but navigating life with two medically complex warriors alongside two "typical" older brothers is a journey I never expected, but one I’m so proud to be on.

It’s a world of:

High Stakes: Balancing therapy appointments and specialist visits with soccer games and homework.

Deep Strength: Watching my younger two fight battles most adults never face, while my older two step up with more empathy and patience than I ever thought possible.

Total Chaos: The house is never quiet, the coffee is always cold, and my heart is constantly oscillating between "I can't do this" and "Look at what we just overcame."

Some days the weight of the medical gear and the "what-ifs" feels heavy. But then I see all four of them laughing together, and I’m reminded that we aren't just surviving—we’re building a bond that is unbreakable.

To my fellow parents in the trenches of both the "normal" and the "complex" I see you. It’s hard, it’s amazing, and it’s the greatest honor of my life.

02/23/2026

Autism is not a tragedy.
Silence is.

Autism is not something to fix.
It’s something to understand.

For too long, the world has asked autistic individuals to shrink themselves to fit into spaces never designed for them. To mask. To mimic. To endure. To apologize for the way their brain naturally works.

What if instead, we built spaces that fit them?

Autism is not a lack.
It’s a different language.

Eye contact doesn’t equal respect.
Silence doesn’t equal ignorance.
Stimming isn’t “misbehavior.”
It’s regulation.

Inclusion is not inviting someone into a room and expecting them to act like everyone else. Inclusion is changing the room.

Advocacy isn’t loud for attention.
It’s loud because someone has to be.

Autistic voices deserve to lead conversations about autism. Not be spoken over. Not be softened. Not be edited into something more “comfortable.”

Different doesn’t mean broken.
Support doesn’t mean shame.
Accommodation isn’t special treatment.
It’s equity.

And here’s the truth that makes people uncomfortable:

The real deficit isn’t in autistic people.
It’s in a society that refuses to adapt.

Believe behaviors are communication.
Believe that sensory overload is real.
Believe that joy can look different.
Believe that brilliance doesn’t always look typical.

Stop asking them to “act normal.”
Start asking how to make the world safer.

Autism is not a burden.
The lack of understanding is.

We don’t need more awareness.
We need acceptance.
We need accessibility.
We need respect.

Nothing about them without them.

And if advocacy makes you uncomfortable?
Good.

Growth usually does.

Sage’s journey with CHD

02/21/2026

Still not much to update health wise with sage but wanted to share some cute photos of three out of four of the boys. 🥰 I hope everyone has an amazing weekend.

02/18/2026

02/17/2026

They say parents are supposed to be the teachers, but lately, I’ve been the student.

At just three years old, my child has a "to-do" list that would exhaust most adults. Between the appointments, the therapies, the monitors, and the hurdles most people never see, their days are heavy. But their spirit? That stays light.

Here is what my medically complex warrior has taught me lately:

Joy is a choice, not a circumstance. Even on the days involving poked skin or long waits in sterile rooms, they find the one sticker, the one song, or the one shaft of sunlight that makes them giggle.

Progress isn't a race. We’ve learned that "inchstones" are just as holy as milestones. Watching them fight for a new skill reminds me that the effort is just as beautiful as the result.

Strength doesn't always look like "toughness." Sometimes, strength looks like bravery in a hospital gown or the quiet determination to keep trying when things are physically hard.

Being a parent in the medical complexity world is a journey I never expected, but I wouldn't trade the perspective it’s given me for anything. My kid doesn't just "cope"—they thrive, they love, and they remind me every single morning that we are capable of so much more than we think.

To my tiny hero: Thank you for choosing me to walk this path with you. I’m forever in awe

02/16/2026

It would be truly remarkable if sages' amazing followers could collaborate to provide this amazing family with a few meals to give a smoother transition home with their newborn as she recovers from a cesarean and a scary after birth.

This meal train is made for my best friend Megan hope after she just welcomed her rainbow baby into this world after losing her son 2 years ago to Congenital heart defects and is recovering from her cesarean please help this amazing family

02/12/2026

We need prayers for one of my best friends new baby after losing her son 2 years ago this is the absolute last thing she needs to be going through. I’m not giving details but she could really use the prayers and good vibes anything you believe. Megan Hope I love you so much girl I’m with you 100%

02/12/2026

Today’s warrior is Taytum’s Heart Journey another viral myocarditis warrior, this is her story.

Taytum’s Story
- Born healthy on October 4th 2022
- 9 days old spiked a fever ended up being admitted to hospital
- 3 days later everything had come back negative and thought we’d be going home
- Later that night we got admitted to the NICU because her heart rate was extremely high
- Ended up getting admitted to the CICU about 12 hours after being in the NICU because her heart couldn’t handle what was going on
- Ran more intensive blood cultures
- 16 days old finally found out she had the rhino/entervirus and it ended up in her blood stream and attacked her heart
- Was on Ecmo from October 23-31
- Got an LVAD at the end of November
- Waited status 1A from end of November 2022 to July 14th 2023
- After getting transplant remained in hospital until September 12th 2023 because of colds, throwing up, and needing a gtube
- Since coming home Taytum has gotten her gtube removed, become very independent and spunky. A lot of our friends say if we didn’t know her personally we’d never know she was probably the sickest kid they knew
- We are about almost 3 years post transplant and still putting up a good fight!

I have truly enjoyed sharing all the kids stories so far if anyone would like their child shared please reach out to me any kind of warrior is welcome

02/11/2026

Lilly’s Heart Journey is the viral myocarditis warrior today, we just recently connected but sage has followed her page for some time now. This is her story.

We thought we had a healthy baby girl named Lillian “Lilly.”

We brought her home, and everything seemed perfect—until she spiked a fever at just 6 days old while at the pediatrician for a routine weight check. We were told it was probably nothing, but to take her to the ER just to be safe.

It was not nothing.

That visit marked the beginning of an almost 7-month hospital stay.

We were flown to Children’s Hospital and admitted straight to the NICU. After a little over 24 hours, Lilly began needing oxygen and her heart rate climbed into the 300s. We were transferred to the CICU, where we met some of the most incredible people, and not long after, Lilly was placed on ECMO (life support).

At that point, we still had no answers. Then she tested positive for enterovirus.

Lilly wasn’t improving and could not tolerate coming off ECMO. Our only option was to place an LVAD and list her for a heart transplant. The surgeon who placed the LVAD told us her heart would never recover—nearly the entire left side was white with scar tissue.

Not long after, Lilly stopped tolerating the LVAD and required a second open-heart surgery to repair leaky valves. We didn’t know if she would survive. The surgeon told us they had never performed this type of surgery on a baby her age or size.

She made it through—but needed her LVAD connected to an ECMO setup while waiting for transplant.

Then, Lilly suffered a massive stroke, affecting the right side of her body. Shortly after, she needed a VP shunt placed for hydrocephalus—an especially terrifying surgery because she was on blood thinners.

That surgery became a turning point.

Lilly started to improve, and not long after, she received her gift of life. She was just 4 months old when she received her heart transplant. She did incredibly well, and when Lilly was 7 months old, we finally went home.

Because of her extremely complicated hospital stay, Lilly didn’t get the chance to play or reach milestones the way the LVAD was meant to allow.

Now, Lilly is almost 3 years old and will be 3 years post-transplant in September. Overall, she is doing absolutely amazing. The stroke has complicated things and still affects her, but she is starting to use the right side of her body more and more. She has come so far, and we are beyond proud of her.

Lilly has beaten so many odds. She is truly a miracle.

We still see many specialists and make frequent trips to Children’s Hospital. We recently had another admission due to a seizure, and Lilly may need another brain surgery to help control them. Doctors believe the seizures are related to her stroke.

This journey is far from over—but Lilly continues to fight, just like she always has. 🤍

02/10/2026

Claytons story is different then the others i have shared so far he didnt end up with a heart transplant his heart healed something that doesn’t usually happen.

Sometime after birth and going home, Clayton contracted rhino enterovirus we only found out that he was sick by going to his well child visit and he did a completely 180! He was sepsis, lethargic, would no longer latch, but was fine the morning of said well child visit. That’s when our journey began with his heart condition, we got transferred from Parkview Hospital here in Fort Wayne to Cincinnati children’s hospital where they put him on a bunch of different medicines and listed him for heart transplant. A month after being listed we got the call for a heart, but a few hours later I got another call that they learned more information about the donor and decided to not take the heart at all, because it would give Clayton more issues later on down the road and he was doing well enough that they believed we could wait a little longer! Gradually they took him down on medications and then eventually off those medications, by the middle of December he was doing so well they wanted to take him off of his heart medication and see how he would do. He was taken completely off the heart medication within two days and then discharged from the hospital! Since December 31st we have been home and following up with his cardiologist in Cincinnati and Clayton has been doing amazing! He was taken off the transplant list in June 2025 and has since been taken off of two of his medications and soon will be taken off of another medication and will only be on two medications after that which include his BP medication and beta blocker!
Cortney Batchelor

02/09/2026

Brooks, a courageous young boy fighting viral myocarditis, is today's featured warrior, and I am grateful to have recently connected with his mother, Vanessa Blue. Brooks is a precious child, and I am honored to help share his inspiring story. Although born with a healthy heart, Brooks developed myocarditis due to enterovirus, commonly known as the common cold, before leaving the hospital as a newborn. He suffered a 75-minute cardiac arrest, spent three weeks on ECMO, experienced a stroke and pulmonary hemorrhage, and required seven months on a Berlin heart, followed by a heart transplant and rejection. After nine months in the hospital, Brooks returned home for the first time and is now thriving at two years old, thanks to our donor. Vanessa Blue

02/08/2026

Today’s viral myocarditis warrior is Frankie I also have the honor of calling her mom my friend Caitlin Mary it’s so amazing the relationships you build in this community. This is her story:

For our family, viral myocarditis went from an unfamiliar term to a life-changing reality on October 26, 2023, when our daughter Francesca “Frankie” Charlene suddenly became critically ill at just six days old.

Frankie was born on October 20, 2023 — a strong, healthy 9 lb 3 oz baby girl. She came home eating well, thriving, and soaking in love from all of us, especially her big sister, Vinnie. But in less than a week after birth, everything changed on day 6th of life. She became unusually sleepy, stopped nursing, and vomited. By morning of day 7, her tiny body was mottled, her temperature dangerously low, and her heart rate unstable. Our pediatrician took one look and immediately sent her by ambulance to the children’s hospital.

In the ER, a swarm of doctors and nurses fought to stabilize her. Her blood had turned acidic from lack of oxygen — a sign her organs were beginning to shut down. After hours of intervention, cardiology determined her crisis was heart-related and rushed her to the Cardiac ICU. That night, Frankie’s heart stopped twice. She miraculously revived on her own both times, but her heart was failing fast.

The next morning, surgeons placed pacing wires in hopes of supporting her weak heart. Complications followed, including a blood clot in her leg that threatened the loss of her foot. Soon after, she was officially diagnosed with viral myocarditis caused by Rhino/Enterovirus, leading to secondary dilated cardiomyopathy because her heart was so enlarged.

For weeks, we hung onto every tiny sign of improvement. At one point, her heart began beating in sync on its own — a small but powerful moment of hope. But when the team attempted to remove her breathing tube, her heart simply couldn’t keep up. She needed more help.

On November 22, 2023, the day before Thanksgiving, Frankie underwent her second open-heart surgery in a month to receive a Berlin Heart, a mechanical pump that would keep her alive while she waited for a transplant.

Frankie spent the next six months in the hospital, growing and fighting every single day. Despite the tubes and machines, she learned to roll over, babble, smile, and even eat again. Each milestone felt like its own miracle.

Then, on May 20, 2024, the call we had prayed for finally came, a donor heart was available. In the midst of unimaginable loss, another family said “yes” to organ donation, giving Frankie her second chance at life. That day, she received her precious Hero Heart.

Her journey since has included biopsies, catheterizations, and setbacks, but also strength, joy, and resilience that amaze us daily. Frankie is here. She is thriving. Transplant saved Frankie’s life, but it isn’t a cure. We’ve traded one illness for another, stepping into a lifetime of medications, procedures, and fighting to protect her new heart. She is a living reminder of the power of modern medicine, early recognition, and the selfless gift of organ donation.

This Heart Month, we honor:
❤️ The families fighting viral myocarditis
❤️ The children waiting for donor hearts
❤️ The donor families who make miracles possible
❤️ Every clinician who fought for our girl

And we share our story for one reason:
Awareness saves lives.
The more people who know the signs, the more hearts we protect.