Petals of Hope: Laramie Rose

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Raising awareness for Congenital Heart Disease
while walking through this crazy thing called life, with our RoseyGirl🌷

Congenitally Corrected Transposition Great Arteries, Double Outlet Right Ventricle, Ventricle Septal Disorder, Pulmonary Atresia🫀🎗️

09/26/2026

Impending doom & holidays are always weird when you have a Heart Warrior.

One minute you’re enjoying the park with the sunshine and soaking up all the giggles.

And the next you’re sent back to December 19th, 2025, 11:02am and remembering the overwhelming feeling of hearing a surgeon tell you there was nothing else they could do.
And that I could hold her dead body as long as I needed- like that was supposed to make up for the death of my child.

She was intubated 2 days before surgery.
It was 3 whole days since I last held her. Alive.
But we left 2 days later. Some oxygen but nothin major.

The weather is starting to get chilly again.
And there’s only 86 days till I’m forced to relive the day that still haunts me.

How will Christmas look this year?
What if something happens?
How can I bring myself to celebrate the worst season of my life?
When will the image of her limp body be burned out of my brain?

All the questions that circle through my mind ever since it’s dropped to 65°.

This date, these memories, this trauma.
It’s no different than Easter Sunday, April 9th of 2007. One of three stupid crosses that hold my father’s picture.

The same holiday families gather for, while I’m forced to grieve the two people I needed most in my life.
Except I do have one.
But I also have a death date for her.

And I’ll always be beyond grateful to have my girl here. Who isn’t? She’s the life of the party even in the CICU.
But I’ll never stop wondering “Why her?”
There will never be a reason that justifies what my daughter has gone through. Ever.
Not even “God’s plan.” I don’t give a damn about any plan that involves the suffering & death of my daughter.

So as the temperature drops lower & lower.
We start watching the pulse ox again.
We have emergency oxygen tanks close by.
We re-certify in infant CPR.

And we start advocating more & more for CHD awareness.
Because impending doom should never be the first feeling CHD families feel around holidays.

We are planning a Christmas Toy Drive for Cincinnati Children’s & the local Ronald McDonld House. In hopes to make our CICU friend’s Christmas have better memories than ours.🎗️

Inundated.Haunted.Tormented. There are plenty of words to describe the experience, but never the feeling itself. The fee...
09/10/2026

Inundated.
Haunted.
Tormented.

There are plenty of words to describe the experience, but never the feeling itself.

The feeling of cleaning out closets to find the bloody newborn blanket seal away in a ziploc bag. Unable to bring yourself to wash because it holds the memories of my 5 day old, walking her to surgery, still bleeding in a diaper from giving birth.

The feeling of “one year ago today” memories flooding your phone. The picture taken when I told my 7 month old “I won’t be mad if you want to go with Jesus.” While tears stream down both of our cheeks.

The feeling of flipping through a notebook ready to throw it away & coming across a cry for help.
Reading the words:
“I can’t believe I did this to her.”
“What monster makes their daughter suffer through these things?”
“I hope she can forgive me when she grows up, because I can’t forgiving myself for being so selfish.”

The feeling of finding the print out the cemetery & funeral homes gave you, taunting numbers like $10,000 for a family burial plot. $4,000 for the custom pink.. infant casket.
The director startled by the casual tone in my voice through it all, not knowing this wasn’t the first time my child died nor the last.
“I cannot fathom the strength you have.”

It was never strength that fueled me.
My daughter has no choice but to live this life.
In return? I have no choice but to make this lifetime the best life she’ll ever live.

You’re never truly ‘out of the woods’ with grief.
& the worst part?
Grief doesn’t care.
CHD doesn’t care.
Mental health doesn’t care.

Rocking my now toddler to sleep, singing songs, and reading bedtime stories & I still struggle to not see the tiny, bloody newborn on the OR table.

Hearing her laugh (more like cackle) at something and a tear falls down my cheek, remembering the times she tried so hard to scream & cry but the ventilator wouldn’t let her.

Buying a twin size bed so we could snuggle with her freely, after a year of sitting beside a hospital crib & having to ask nurses to hold your own child while it takes 8 of them to move her into your arms.

The CHD battle does not stop when we leave the hospital.
It lingers, like glitter.

Everywhere, everything .. tainted with the smell, image, and sound of Laramie’s fight.

And oddly enough, I can’t help but to be thankful for it all. If it means I have my girl. 🎗️🩷

08/30/2026

National Grief Awareness Day.

The grief of the life she was supposed to have.
Without needles, intubations, echos, surgeries, cath labs, and so much more.

Yet, the gratitude of her being alive.
Sleeping in a big girl bed, learning to potty train, signing & saying all kinds of words.

The grief of the newborn trenches.
Forced to ask to hold your own child & often times being rejected because it’s too dangerous.
Crying at 3am because there’s only an alarm & pump to wake you up, not your newborn.

Yet, the gratitude to even have a baby.
Knowing she made it this far when she was never supposed to live past birth.
And still managing to hit milestones.

The grief of watching other mothers enjoy their infant & toddler years.
Trips to the park turned into physical therapy.
Play dates turned into quarantines.
Baby led weaning turned into GJ tube feeds only.

Yet, the gratitude of knowing these extra precautions & needs keep my girl alive.

No matter how many times Laramie is labeled a “sad story” .. she’ll never live up to that.
Because she is so much more.

More than an open heart scar.
More than an invasive GJ tube.
More than a statistic & number to a surgeon.
More than a never ending prayer request.
More than a testimony that leaves the room in tears.

She’s always been more.

So much more than the grief that’s followed us in this life.
She’s a ball of gratitude.
Sassy, fighter, love bug, tough, full of giggles & snorts, big bow wearing ball of gratitude.

She’s our girl.
That grief will never take away. 🩷

Faith. It’s hard. To get, to have, and to keep when you walk your child back to the OR for another open heart surgery, G...
08/09/2026

Faith.

It’s hard.
To get, to have, and to keep when you walk your child back to the OR for another open heart surgery, GJ replacement, CathLab, etc.

A mix between “how dare you God?”
and “I know this is for your glory.”

Always hearing,
“I wish I had faith like you”
“I wish I could intercede & pray like you”
“I wish I could lean on Him like you”

You want to be nothing like me, rest assured.
In the most humble yet cocky manner possible.

The waters I’ve treaded through have no mercy.

I don’t have the faith you want, I don’t pray the way you think you should, and I definitely don’t lean on him wholeheartedly- more so with resentment.

May 1st, 2025 Laramie’s diagnosis was confirmed by my MFM.
May 1st, 2025.. my entire spiritual journey shifted.

I never cared about my past.
Not my childhood, not the things that happened to me, or how neglected & abused I was in a household or relationship.
But my child?!
The baby YOU allowed in my womb, seriously God?

There aren’t enough words to describe how furious I was & still am with God.

Watching a wound vac be sealed across my 7 month old daughter’s open chest.
A cut from trachea to belly button.

But also admiring the scar post discharge.
The scar itself being a bigger testimony than words at 7 months old.

It’s not believing God is real that’s hard.
It’s believing someone who is supposed to be so “loving, graceful, and merciful” could allow my child to die on an operating table, code, and fight all the hell she has.

But somewhere in the midst you learn to force yourself to lean on Him.
That you don’t always need to praise and be joyful before Him.

But to put your face in the alter for hours, after everyone’s does praying with you, after the last hand leaves your back, when the interceding stops. Just stay there.

Tell Him how angry and bitter you are.
How unfair it is that my child has to suffer while other mothers complain about midnight feeds.
How jealous you are having friends with “normal” babies.
How my daughter never deserved the big, ugly, yet so beautiful scar down her torso.
Tell Him if you take my baby, make room, because living without her seems so impossible I don’t even want to attempt to.

I can’t explain my faith.
I can’t give you advice or spiritual guidance.
I can’t tell you how to intercede and shout.

But I can tell you to take it to Him.
All of it. Even the horrific thoughts & feelings.

Your tubie babies are always welcomed here. Always. NGNJNDGGJJCentral LineA syringe with formula and stomach acid never ...
08/05/2026

Your tubie babies are always welcomed here.
Always.

NG
NJ
ND
G
GJ
J
Central Line

A syringe with formula and stomach acid never bothered us. We’ve been there.. still there actually.

•Need a Farrell bag? We still have some.
•NG for premie or regular? I always carry both in our diaper bag.
•Ran out of Adapters & extra dressings? Use ours.
•Can’t place the tube just right? Hold that baby, I’m known for placing them perfectly, first try.
•Baby tangled in their tubes? You hold, I’ll untangle
•Forgot sanitizer & alcohol wipes? I even brought a mask.

Is it common to be asked for these things in the small town of Tipp or Troy Ohio? Absolutely Not.
But I’ll be there & ready with supplies when I am.

So
Yes, I will catch the vomit.
Yes, I will mix up babe’s supplements.
Yes, I will argue with these scammers called insurance companies about your supplies.
Yes, I will tell off the strangers and their judgmental looks.
Yes, I will go to appointments with you.
Yes, I will advocate until my voice is gone.
Yes, I will make you homemade purĂŠes to start.

This whole medical mom life is already lonely enough, you can always count of Petals of Hope to lean on.

Caregiver guilt.. or burnout? Do any of us know?The guilt of not bringing home a check. (Although her daddy (Rylan) has ...
08/04/2026

Caregiver guilt.. or burnout?
Do any of us know?

The guilt of not bringing home a check.
(Although her daddy (Rylan) has always provided to make sure I could stay home with our girl)

Waitlist miles long for paid caregiver programs.

Ordering supplies while fighting with insurance to get them covered.

Crying in the car over lab work.

Constantly checking saturations & pacemakers.

Racing to their room if the monitor didn’t pick up movement during their nap.

It’s a lot. And it does catch up to me the extra nap, the extra 4 cups of coffee. The breakdown in the inlaws living room. The early morning run because there’s so much anxiety I could do a marathon.

I don’t regret the choices I made though.
Not one bit.

But I do hold this guilt.
That I’ve done it all wrong.
She’ll resent me for the scars & machines she’s always had & will need.
Maybe I should’ve denied a surgery or transfusion.
Maybe I should’ve advocated for more.

Will she wish I’d let her go instead?
Will she look at her scar with disgust instead of the faithfulness of God, the courage, strength, and LOVE it took for her to get that scar?
Will she think I’m selfish for putting her through everything just to keep her here?

All the questions I ask myself, I won’t have to answer for a few years, thankfully.
Because I’ll need all few years to find the words I need to describe how much love I had (& have) for her that’d I’d put her through that.

So if you find yourself in a place of guilt or shame as a medical mother.
You’re not alone, and quite frankly I think it’s universal.
We’ll find the answers to our babies questions when they come. All we can do is pray they’ll understand the love it took to make those decisions.
🤎

07/29/2026

Cincinnati Children Parents:
Your local WIC office does NOT overrule your hospital, providers, or their prescriptions.

I have had one too many parents, including myself, fight with their WIC office over “their normal protocols”
Your child is NOT normal in the nicest way possible.

Laramie eats 14-16 hours CONSECUTIVELY.
A single 14oz of formula lasts us a singular day.
As a toddler she is still on INFANT formula, why? Because her providers said so.

WIC does not have the right tell you how or what your child is ‘supposed’ to eat, drink, etc.
Your hospital & providers do.
And I’m sorry on behalf of Laramie & myself, that many of us parents have to fight tooth and nail for our child’s right to eat. Even if it is by a tub.

And WIC offices?
Maybe take up an ethics or disability learning program so you don’t belittle our children who have fought like hell to live, to their mother & their faces.

Thanks.
Sincerely every medical mother & child you’ve denied.

07/10/2026

Please pray for Laramie & her blood work to come back cleared. Please Jesus we need this !!!❤️‍🩹

“Every kid has a first birthday” “It’s just a part of life”“You’ll have plenty of other birthdays”But you weren’t there....
07/05/2026

“Every kid has a first birthday”
“It’s just a part of life”
“You’ll have plenty of other birthdays”

But you weren’t there.

You weren’t there when she was taken from me, straight from the womb to being injected & poked with needles.

You weren’t there when my legs went limp, head spinning, chest becoming tighter as I walked my 7 month old to her first open heart surgery.

You weren’t there for the sleepless nights just to watch her chest rise & fall with every breath hoping her last never came.

You weren’t there when her & I laid at the alter and tried reasoning with God to let me keep my baby.

You weren’t there when I had to call about family burial plots & make sure our life insurance would cover our tombstone material.

You weren’t there racing 112+ mph while hearing machines go off & doctors scream “on the bed, cardiac arrest” not knowing if I’d ever see my daughter alive again.

A simple first birthday party IS a huge deal when you’ve been forced to prepare for your child’s death since they were in the womb.

Laramie was never supposed to live this long,
but she did it.

She’s lived passed deadlines, laughed in death’s face, and proved she’s here to stay over & over again.

THAT’S why her first birthday holds a way bigger meaning. ❤️‍🩹

06/29/2026

The anxiety before the first birthday.

Replaying doctors-
“She will be very lucky to see one year old.”
“Her case is very complex, possibly only months.”
Or
“You may want to take this in as much as you can.”

I’ve been forced to live like my child has a deadline.
For memories, outings, celebrations, milestones.
Many cardiac parents live like this too.

December was the first time I planned Laramie’s funeral.
I was alone, sobbing into a consult room floor, surgery failed & I planned my own funeral that day too.

I wrapped one present, I finished it just an hour before being told I’d bury my favorite soul during the holiday.
I didn’t wrap anymore because I thought if I did, something bad would happen again.

Still, 7 months later, I can’t bring myself to wrap her 1st birthday gift.
The sun down scaries have came back, awake until the sun comes up just to make sure death doesn’t make its way in the night.

Paranoid that life has been “too easy” during this inpatient stay, surely something bad has to happen.

Anxiety isn’t always biting nails, pacing, and panicked thoughts. Sometimes it’s snuggling your sleeping baby, choking back tears & begging God to spare her because she’s came too far to be taken.

“Please just let her see her first birthday party, with all her family.. just one time.”

It’s exhausting.

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