Holidays with Heart Online Auction 2025

by Jess | Nov 20, 2025 | General

Our first Holidays with Heart auction is live and ready for you to explore. This is the event we built from love, grit and the brightest sparkle of our sweet baby girl Jewels. Every item has a story and every bid helps us support families with children in the pediatric cardiac ICU.

You will see local favorites, Oklahoma makers and some incredible experiences that would brighten any holiday. Many of these bundles were created with caregivers in mind. Every dollar raised goes straight back into survival kits, milestone celebrating Jewels’s Joyboxes and family support through the Sparkle Strong Foundation.

Browse. Bid. Share. Help us make this first year a beauty.

When Her Sparkle Became Starlight: Child Loss in the CICU

by Jess | Sep 17, 2025 | General

This isn’t a post I ever wanted to write. But we’re going to be real, we have to hold both the joy and the heartbreak. And the truth is, sometimes the worst happens.

As I researched and embraced my new role of heart mama (because I fully and ferociously chose our Jewels knowing fully what her diagnoses held), I avoided every mention of loss, stats regarding mortality rates, resources for bereaved parents. I didn’t want a flicker of those thoughts in our space. No chance that we would think it into existence. Still, despite the endless layers of love, hope, prayers, science, confidence, medical knowledge, grit, support, willingness and wishes, sometimes a CHD journey ends in the unthinkable.

And for our precious, happy, beautiful, wonderful Jewels, it did.

Our Fight

She was all joy and fight wrapped up in one precious, tiny body. I absolutely knew that she would pull through and beat the odds. As we spent the beginning of 2025 back in the CICU (after three beautiful months at home), as I fought with every fiber of my being to get her transfered to a new hospital, as I pushed all the decision-makers hard to see the whole picture when deciding if she would be a transplant candidate, as we beat every obstacle the hospitals, the foster system, the universe and her body put in our way, I was absolutely confident that I would walk down Main Street USA with my baby girl, new heart beating strong in her chest and huge smiles on all of our faces. We’d finally be able to exhale.

Looking back, I know now that some of that confidence was false security. It was survival. The only way to get through the days and nights at her bedside. But I wouldn’t trade those moments of believing, of picturing her future, for anything. Except maybe another chance, but we know that’s not possible.

Remembering Our Girl

When I think of our precious Jewels now, the image that comes to mind is my favorite photo, the first one you saw on this port. Wrapped in her giraffe towel, smiling big, eyes bright and full of life and love. That’s the girl who lives in my heart. That’s the girl who will always be part of our story.

Jewels had a way of filling the room, even when she was tiny. Once she found her voice, she never stopped using it, always talking, always making herself known. After so many intubations, with one of them damaging a vocal cord, we never got to hear her voice in quite the same way again. But I still remember those early days when she’d sing back to me as I sang my 90s and early 2000s Broadway favorites. She was my littlest audience for Rent and Wicked, which was fitting since her first and only trip to the movie theater was to see Wicked.

Her smile was everything. It wasn’t just the curve of her lips, it was the way her whole face lit up, her eyes shining with the warmest joy. The feeling of Jewels smiling at you was one of the most beautiful things I’ve ever known, and it’s a memory I carry everywhere but can never recreate.

She loved her little world, too. We kept her away from screens until one day in her second CICU stay, someone turned on the TV, and she discovered Bluey. From then on, the theme song was her jam. She’d whip her head toward the TV the moment those first notes played. Church Doll, a ladybug lovey named by one of her respiratory therapists, was always tucked in with her. She lit up at the sound of her Princess Tiana doll, loved squeezing and smacking her crinkly books and never got tired of her ocean drum and jingle bells.

One of my favorite hospital memories came in Dallas, when our nurse Allison aka Nurse Fart (lovingly coined by the middle kiddos, Jada and Tavi) and I bundled Jewelsy Pie into the stroller and we went on a tour of the hospital. We wandered into other units, met other kiddos, and Jewels even got to go outside, something she hadn’t done in months. When we came back, we sat outside her room with nurses and other moms, just talking while the babies listened in. It felt almost normal. Just women talking, kids nearby and life happening. One of the moments I’m most thankful for during our CICU days.

Her spirit was sassy, happy and pure. And I miss it more than I can ever say.

Jewels’s sparkle is woven into every single thing we do here at Sparkle Strong. And while her heart has stopped, her light hasn’t. It shines on in the kits we give, the Joyboxes we pack and the families we walk beside. It lives in her siblings and how they continue on with a sparkling glint in their eyes that is equal parts love, fondness and grief. And I hope it continues to live in her legacy, in the way we continue to bring joy to those navigating the spaces we’ve now left behind, in the moments of magic that fight their way through the shattering pain of her absence on Earth.

Continuing On

At this time, it’s been two months and five days since we last breathed the same air. Since she said goodbye. Since she joined the stars. It has been the absolute hardest time of my life. My soul is broken, and it’s so hard to function every single day. But I try. Her siblings are here. Her legacy is here. Her spirit continues on, and I am trying to continue with it. I’m completely imperfect in this grief. I don’t know what I’m doing, I don’t know how to live and I still have so much sadness, anger and hurt.

To the parents reading this who know this pain firsthand: It’s not fair. It’s okay to hate every bit of it. Your child didn’t deserve this ending. You didn’t, either. There are no silver linings or platitudes or prayers big enough to cover that truth.

This post is personal, raw and ours. It’s not a resource list, not a guide. Those will come as I find them because too many families in our community face this reality. But for now, this is simply me saying: I see you. I grieve with you. I understand in ways I wish I didn’t.

If you’re still here reading, thank you for holding space with us. I will keep moving forward one messy day at a time, carrying my Jewelsy Girl with me in everything I do. Every Joybox, every survival kit, every phone call to a family who needs to know they’re not alone. Her life changed mine and it will continue to change how Sparkle Strong shows up for other families.

With love for my baby girl, always.

Love,
Jess

Survival Glam: When Glitter Becomes a Grind

by Jess | Jun 20, 2025 | General

Survival Glam: When Glitter Becomes a Grind

There’s a myth I need to break open — maybe for you, but definitely for me.

It’s the myth that all this sparkle equals strength. I know, from the founder of Sparkle Strong, this seems like it’s getting a little at odds, but hear me out. It’s the myth that a cute ICU tote bag or curled lashes in the face of chaos mean “she’s got this.” That a color-coded med tracker and a perfectly packed hospital go-bag say more than the panic behind my eyes ever could.

This is where Survival Glam lives.

I coined the phrase mid-scroll, mid-crack, mid-collapse, and it landed like a truth bomb coated in lip gloss. Survival Glam is the name I gave to the phenomenon where trauma, caregiving and chaos are masked into looking like you’ve got your shit together. It’s not just a look. It’s a whole performance of resilience.

And it’s exhausting.

…a color-coded med tracker and a perfectly packed hospital go-bag say more than the panic behind my eyes ever could.

Why We Cling to the Glam

Survival Glam is seductive. It gives the illusion of:

Control: At least I look like I’m OK.
Praise: “You’re amazing! I don’t know how you do it!”
Protection: Don’t look at the fear, look at the shimmer.

It’s also reinforced by what psychology knows and what many of us live without naming:

Superwoman Schema, coined by Cheryl Woods-Giscombé, PhD, a nurse scholar and researcher in Black women’s health, says we’re supposed to be strong, suppress emotion, and never show weakness — especially as women of color. Survival Glam checks every one of those boxes…in highlights and heels.

Toxic Positivity explored by psychologists like Whitney Goodman, LMFT – is the pressure to maintain a cheerful, can-do attitude even in the face of serious hardship. It tells you there’s no room for fear, grief, or rage. Think “good vibes only.” But when you’re parenting in a hospital room or juggling trauma and checklists, toxic positivity becomes emotional suffocation wrapped in a Pinterest quote.

Cognitive Dissonance, introduced by social psychologist Leon Festinger in the 1950s, describes the tension that arises when your internal truth doesn’t match your external performance. You know you’re barely holding it together, but the world sees you as “inspirational.” It’s the tension between what you feel and what you’re performing. You know you’re falling apart, but your Instagram says you’re thriving. That gap? That ache? That’s the dissonance. And it’s draining.

And if that’s ringing any psychological bells? You’re not wrong. There’s actual academic backbone behind what we’ve been feeling.

The Cost of the Sparkle

Sure, it gets you through. But it also:

Mutes your pain
Masks your burnout
Turns connection into performance
Makes rest feel like failure

It’s wild how convincing the glam can be. It buys you a little space. A little applause. A sense that if you’re still shiny, maybe things aren’t that bad. But underneath the shimmer, things can start to unravel. You’re praised for being strong when you’re actually holding on by a thread, and the praise encourages you to stay in the cycle. You’re seen as “inspiring” while you quietly wonder if you’re disappearing. You start to perform connection instead of living in it. You confuse numbness for peace. And rest? Rest starts to feel like laziness, like if you pause, you’ll lose the plot entirely. That’s the real cost of Survival Glam. It doesn’t just hide your grief. It teaches you to decorate it. Until one day, you stop and ask the question that cracks the whole illusion:

“Am I actually OK… or just covered in glitter?”

Let’s Just Be Honest for a Second

You’re going through hard shit. We’re going through hard shit.

Not just “busy” or “overwhelmed.” I’m talking ICU monitors, impossible choices, grief in the checkout line, your kid asking questions you don’t have answers for. The kind of hard that doesn’t fit in an Instagram caption. The kind you don’t even always have language for.

And I know — you’ve trained yourself to smile through it. To say, “We’re good! Just staying strong.” Me, too.

Guess what? You don’t have to do that here.

You’re allowed to look like what you’ve lived through.
You can be messy and still matter.
You can say “I’m not okay” and still be strong.

But Here’s Where It Gets Messy and Kind of Beautiful

Because sometimes the sparkle isn’t just a cover. Sometimes it’s a coping mechanism that works. You start the fundraiser, you launch the nonprofit, you drop off care kits, you write the reflection post. Not because you’re pretending to be okay, but because creating something meaningful helps you feel okay. And maybe it is coping. But maybe it’s also contribution. Maybe you’re transmuting your trauma into something useful. Something generous. Something real.

So, no, I don’t think serving, inspiring, tasking well is the problem. I think the danger comes when it’s the only place you’re allowed to exist. When it becomes the only identity people recognize. When being “the strong one” becomes a performance instead of a choice.

Here’s the question I’m learning to ask myself: Am I offering this from overflow or obligation?

Because doing good can heal. But it shouldn’t hollow you out. And that’s the thing no one talks about — how easily doing good can tip into doing harm. Not to others. To yourself.

The Tipping Point of Survival Glam

I started Sparkle Strong from a place of heartbreak and grit. I bought the bags. I stocked the snacks. I designed the logos and filed the paperwork. I did it all while living on savings and Disney commissions with a garage full of classroom supplies I walked away from when I left my teaching job to keep my medically fragile foster daughter alive.

Survival_Glam_Which_is_Real_DancingScriptBlue

I’ll be okay, although we still absolutely adore your donations. I have privileges: resourcefulness, a support system, experience. But someone else? Someone without those things, trying to perform resilience while quietly bleeding behind the scenes?

She could go broke. She could burn out. She could break.

Because when Survival Glam becomes your only safe identity, you don’t just hide the pain, you build an empire on top of it. And if no one sees the cracks? That empire can collapse in silence.

That’s why I’m writing this. Not to indict the sparkle. But to interrogate it. To ask: What are we holding up, and what is it costing us to keep it standing?

Naming the Trap Is Power

This isn’t about rejecting beauty or banning your coping skills. It’s about being honest.

What are you holding together?
Who are you performing for?
And what would it mean to be rested and still radiant?

I’m not here to tell you to stop showing up with gloss and grit. I’m just asking you to look beneath it. To notice the places where the shimmer feels like scaffolding instead of self-expression. Where strength is a costume, not a choice. You don’t have to burn down the whole glam routine. Just get curious about what’s driving it. Maybe some of it’s armor. Maybe some of it’s art. But you deserve to be whole and not just held together. You don’t have to sparkle to be seen.

Love,
Jess

Feeling seen? Share this with another medical mama or caregiver who’s been showing up with sparkle and strength. Let’s unmask together.

Special Delivery: Our First Wish List Package

by Jess | May 25, 2025 | General

We got our very first Sparkle Strong wishlist delivery, and it was exactly what my tired mama heart needed. Inside the box was a stress relief coloring book, a teen journal and a pack of glitter pens. Who doesn’t love a good glitter pen?! They’re going into aSparkle Strong Survival Kit for an older child in the CICU.

This package was was a wish fulfilled by one of our amazing Instagram followers. She doesn’t know the teen who’ll receive this, but she knew it mattered. That’s what this whole thing is about. Teens often get overlooked in hospital life. But they still need comfort, connection and moments that feel like their own. This kit will give one child that kind of moment.

Starting a nonprofit while living full-time in the CICU isn’t exactly the traditional route. But this? This is where it starts. One delivery. One moment of care. One spark.

If you want to help fill the next kit, our wish list is always open.

Thanks for standing with us. We’re just getting started.

A Burst of Brightness for CHD Families

by Jess | May 1, 2025 | General

When you’re navigating life in the CICU, it can feel like so much is out of your hands. I know that feeling deeply. In the early days with Baby Jewels, I found myself clinging to the few things I could control—and pouring my energy into making them count.

That’s what this space is for.

On the Sparkle Strong blog, you’ll find practical, actionable (and dare I say, fun?!) tips to make CICU life a little brighter. From decorating your hospital room, hyping up your nurses and creating small celebrations that bring big joy—we’re here for the things you can do. Things that give you back a little power, a little peace and a little sparkle.

This isn’t a place that denies the hard stuff—we hold space for the sorrow and frustration, too. But in a world that can be overwhelmingly serious, sometimes choosing joy is its own kind of protest. And healing.

Sparkle Strong is about giving a burst of brightness and validation in the uncertainty of CICU life. Whether you’re in the thick of it or standing beside someone who is, we’re so glad you’re here.

There’s so much good stuff ahead, and I hope it helps you feel just a little more capable—and a little less alone.

Love,
Jess