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Prayers for Payton

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Ravenna, MI
Prayers for Payton

Our little girl was diagnosed with the terminal childhood brain disease, CLN2 - Battens Disease.

follow this page to learn about updates, pictures and the daily heartfelt journey from her mother's viewpoint.

07/25/2025

🩵

06/21/2025

Not all disabilities are visible.
You might see a smiling child and assume everything is fine.
But what you do not see are the daily challenges, the quiet strength, and the invisible battles happening inside her body.

My daughter has Batten Disease.
She cannot sit up on her own in a swing.
She needs full support to stay safe in a world that is not designed for her.
And yet, because her disability is not always obvious, people often assume she is just like every other child.

That is the hardest part.
When people cannot see the struggle, they forget to show compassion.
They forget to ask before they judge.
They forget that not every challenge is written on someone’s face.

Batten Disease is rare. It is devastating. And it is invisible to a lot of the world. But it is very real to us. It shapes every part of our lives.

So today, I ask one thing, just one thing!
Before you speak, pause.
Before you assume, remember that not every disability can be seen.

And for families like ours, that pause means everything.

06/15/2025

Happy Fathers Day to the one we call Dad!! ❤️

A protector. A teacher. He is the one who shows up even when it is hard. He leads with love, sacrifices without question, and carries the weight no one sees.

A father is the steady in the chaos, the warmth in the worry, the hand you can always hold.

Today we celebrate every man who has been a father by blood, by heart, or by choice.

And especially my handsome husband Keith, who is every kind of father his children have ever needed. The one who stole my heart as a single father giving his two children the best of him. It has been and always will be an honor to watch you in this role of our life together.

Happy Father’s Day to the men who love boldly, lead quietly, and show up always.

05/26/2025

Payton’s infusion schedule change this week, which meant rescheduling the camping trip her Daddy had planned so thoughtfully for us. With her brain port accessed, swimming wasn’t an option for a few days, so instead, we slowed things down and found comfort in home sweet home.

Front porch hangs, deep cleaning, and more naps than we could count filled our weekend. 🖤

A big thank you to Alice Pigors for the delicious dinner and one of my favorite desserts. As always your delicious desserts are my treat at the end of the long daysys!

I’m running on empty lately, feeling tired and stretched thin… but I’m reminded that it’s in these worn out, in between moments that I have to HOLD ON the tightest. These are the days I’ll never get back, and the ones I know I’ll look back on with the deepest love.

Here’s to remembering her Uncle Tony today. My dear brother. 🖤 There’s a moment for a post honoring her uncle on Memorial Day yet to come but for right now I just wanted to share the beauty that comes withth the breaking of my heart.

Payton O’Neil. Peanut Butter. Piña Colada. Payters. Payts. PayPay. P. Peanut Butter Pie. Princess P. Jerky Stick. 🖤 All the nicknames of the world our family has given you, but your full name as always sounded like the sweetest melody to my ears, coming from your father’s lips. Payton O’Neil Patterson. We love you so much princess.

05/22/2025

This photo was taken just days ago. Payton and her big sister, who she absolutely adores. It was Junior Prom, and Payton lit up just being by her side, holding flowers and soaking in the moment like only she can.

Today looks a little different. It is a rainy morning and we are back at the hospital for another blessed brain infusion. We are praying for peace over her body, for a smooth and gentle process, and for strength to carry her through. We ask for your prayers too. For healing, for comfort, and for our sweet warrior girl to come back home by the end of the day, wrapped in love and full of light again.

Thank you for standing with us. Your love and prayers mean more than you will ever know!

05/13/2025

My pink princess Payton 💖 waiting for more pool time!

05/01/2025

Motherhood was dreamed to be softball games, shopping trips and daddy daughter dances. I could see Payton climbing into Cami’s car to head to the barn and ride horses with sissy. Bubba telling her she’s gorgeous on her wedding day, as he has called her since the day she was born. Gorgeous.

Motherhood was Payton playing soccer, hearing her siblings yell out to her what to do next, after telling me for the 736252 what “off sides” meant. I can just see the eye rolls and hear our laughter. Motherhood was to see Payton sing in the annual pajama Christmas musical at Beechnau Elementary, and of course cry on her first day of high school. The big kids gave me this incredibly beautiful motherhood that inspired Payton. I had always assumed, like I think every parent does before their child has a medical diagnosis, that their life will be normal.

Until a diagnosis. A terminal diagnosis.

Now, I’m learning and living motherhood in a way I never expected. Motherhood still is my dream, it’s my whole life but it just looks different now. It feels different.

It’s slower, heavier, more sacred.
And somehow, even in the heartbreak, it’s still so beautiful.

There’s not a single day I don’t wish this was for a different story for Payton. A childhood that included gonyons gymnastics and field trips, not multiple pokes through the reservoir in her brain and seizure medicine twice a day. A childhood of growing up as Ravenna bulldog, being apart of 4H and seeing her walk in the Halloween costume parade. A life where her laughter echoed from playgrounds, and friend play dates, not the hospital hallways Keith has wheeled us down hundreds of times.

I ache for the moments she’s missing out on, for the ones we’ll never get back and the ones I know are slipping away too soon. But even in this hopeful heaviness, I see her strength. I watch her fight every single day to get up on her feet and stay mobile. I see her love for us every single day and I pray she knows how much she is truly loved.

I could never stop being grateful for the honor of being Payton’s mom. I am still learning how to sit in the sacred, heavy silence between hope and heartbreak. Between being grateful for all the moments, and silently wishing for so much more.

So I carry both. The grief and the gratitude.

in the quiet spaces where my motherhood dreams have been broken, and out back together, I remind myself: this is still a love story. One that’s teaching me how to cherish what we have, who my child is, even while I ache for what could have been.

04/26/2025

While you’re sittin’ ‘round thinkin’ ‘bout what you can’t change
& worrying about all the wrong things
Time’s flyin’ by, movin’ so fast!
You better make it count ‘cause you can’t get it back.

Carrie Underwood song that has gotten me through some heartbreaking days in the past two years. Two years since Payton’s diagnosis.

For Payton, every heartbeat is a gift. So I hold tighter, love others without second guessing, and live in the now; because someday isn’t promised, but today is still ours.

Today is still ours Payton O’Neil Patterson.
We continue to make every moment count.
No regrets.
🖤

04/21/2025

It is a rainy drive to Ann Arbor this morning for Payton’s brain infusion. And today, I am choosing to romance the day. To slow down. To give each moment a little more love and a little more thought in my actions and reactions today.

From my hospital coffee to the french fries we will eat on the way home. From the nap I will take next to her on that narrow hospital bed, to the simple joy of holding my baby’s hand. I feel like as long as I am Paytons mother, I need to do a better job at loving this life we’ve beenn given.

Thank you to every single person who prayed for Payton this week. To those who messaged us, or stopped us just to say her name. You reminded us that we are not alone. Your prayers have carried us.

Payton grew stronger this week. She remained seizure free and had the strength to be part of Patterson family memories with the best grandparents in the world.

I know life could be worse. I know it will get harder. But because I know that, I also know how deeply we must choose to rejoice. We are still here. She is still here. And we are still a family.

That is worth celebrating every single day.

This is the day that the Lord has made. Let us rejoice and be glad in it. 🖤 Psalm 118:24

Sharing the happy warrior you thought of and prayed for! Her joy, her happiness in this life is my strength for this mama heart.

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Ravenna, MI
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