Team Reed-Fighting VWM

08/17/2026

VWM causes progressive loss of motor and intellectual abilities and can lead to early death. There is currently no approved treatment that can stop or slow the progression of the disease, according to Amsterdam UMC.

08/05/2026

I think the people that wrote this song must be living in my head please go listen to it. (Yes I know this is an AI-generated song)

Do you wake with the light? Or is it always day?
Do the angels know your name when you walk their way?
Is there music in the air? Do you finally feel free?
Do you ever look down and still think about me?
Do you have your old smile? Do you laugh like before?
Is there somebody waiting when you step through the door?
I imagine you peaceful, no fear in your chest
No more pain in your body, just finally rest

Tell me, how is Heaven?
Is it everything they say?
Are the streets really golden?
Does the hurt all fade away?
I hope you found the peace
That this world couldn′t give
I'm still learning how to lose you
You′re learning how to live

Maybe you're by a river where the water stays still
Maybe you're on a hillside with a house on the hill
Maybe time doesn′t matter, maybe years feel like one
Maybe you don′t miss the night 'cause you live near the sun
Do you sing with the choir? Do you stand near the throne?
Do you feel all the love that we should have shown?
Do you know every word that I never could say?
Do my prayers reach Heaven when I whisper your name?

Tell me, how is Heaven?
Is it everything they say?
Are the streets really golden?
Does the hurt all fade away?
I hope you found the peace
That this world couldn′t give
I'm still learning how to lose you
You′re learning how to live

I picture God beside you, saying, "You can let go"
Showing you the answers we were never meant to know
Maybe you can see me when I'm breaking at night
Maybe you′re the reason I still look for the light
And I know I can't call you, I can't hear your reply
So I talk to the ceiling and imagine the sky
I′ll keep carrying your love ′til my own journey ends
Then you can tell me all about Heaven, my friend

How is heaven?
Do you feel no pain?
How is-, how is Heaven?
Will I see you again?
Save me a place
Somewhere close to the sun
I'll keep talking to you
′Til my hallelujah comes

May the Lord Studio · Tell me, how is Heaven · Song · 2026

07/29/2026

❤️🩷🧡💛
Hi my boy I'm missing you

This week I've been trying to hold on to a video my sister sent me about holding on to the many small joys to battle the large grief collectively.

I struggle with this because joy is often heavily wrapped in guilt. Remember a smile on a face could be hiding sadness, longing, and love but also the guilt that comes with that smile.

The grief feels enormous. But the little joys can slowly add up, helping carry it one day at a time.

07/03/2026

July is the month for bereaved parents. I want to know all about your babies in heaven.

Share with me their names, a picture, and anything you want to share about them in the comments. Let's remember and say their names together.

Here are some of my favorite things about Reed:
His smile and how he lit up a room, his laugh sounding like a dinosaur, he was awful at hide and seek because he couldn’t contain his excitement, how he loved me, his eyes, his gappy teeth, and his thick hair. How he tried so hard at everything he did and tried his best, how he had FOMO, and just wanted to be a good friend. In the morning when he would ask us “how you sleep”

*one of my favorite snapshots of us

06/25/2026

Want to see something that made me smile today our Team Reed bike gear came today and they are perfect. Reed would love them, thank you Bike Rags you were awesome to work with! 💚🦒

06/24/2026

Calico Life Sciences announced that fosigotifator (ABBV-CLS-7262) has been granted Breakthrough Therapy Designation (BTD) by the U.S. FDA for Vanishing White Matter disease.

The FDA grants BTD designation to a drug intended to treat a serious or life-threatening disease or condition. This designation is based on preliminary clinical evidence indicating the drug may demonstrate substantial improvement over existing therapies on one or more clinically significant endpoints, such as substantial treatment effects observed in early clinical development.

https://www.calicolabs.com/press/calico-life-sciences-announces-fosigotifator-granted-breakthrough-therapy-designation-by-the-u-s-fda-for-the-treatment-of-vanishing-white-matter-disease/?fbclid=IwdGRjcASotSZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEetzaKgva3qA4Yr-qndo9x3mAihi7BjeTT2eoSznZ7ot3sYpFW0pcoBuNrD9o_aem_AlyfCHBKphI6QEZX6yL3GA

South San Francisco, Calif., June 23, 2026 – Calico Life Sciences LLC (Calico), a clinical-stage biotechnology organization focused on aging and age-related diseases ...

06/19/2026

My brain is lost today. My body feels off; it feels weak and tired. It's been 1.5 years since I last had you in my lap, since we got to kiss your face and stroke your hair.

We are doing all the things we promised you we would do. We are surviving; we told you we would be okay, and we are doing our best. But also the words that linger on my brain the most the last time we saw you are that we will see you soon and it will feel way longer for us than it will for you. I crave for that day so much. I want to hold you so badly my arms hurt without you in them.

Every month on the 19th at 2:15 my watch reminds me that was the time of our last goodbye. The day haunts me every month.

But to turn pain into survival we stay busy, we play golf, and go to sports events and coach, we ride our bikes, and take your cousins places, we paint banners, and volunteer, we travel some and explore, and are outside as much as possible. And you show up now in the sky, or in the numbers we see, or by seeing your favorite things when we need them most.

06/10/2026

Can I share a little advice about grieving parents? Something that's been eating at me

For years, before Reed passed, people would tell me, "You're so strong," or "I don't know how you do it." The truth is, I just did. Because I had to.

I'm not special. I didn't choose this life. I wanted what most parents want—normalcy. The chaos of raising a child. Ball games, music lessons, homework, watching my kid run out the door to play with friends. I wanted to watch Reed grow up.

Now, as a grieving parent, I hear those same comments in a different context.

"You're so strong."

"I couldn't survive if I lost my child."

"I don't know how you do it."

I know those words come from a place of love. I truly do. But if I'm honest, they can be incredibly painful to hear.

Because sometimes it feels like people are saying that because I've found a way to keep breathing, to keep putting one foot in front of the other, to keep showing up each day, somehow my loss hurts less. Or that my love wasn't deep enough because I didn't completely fall apart and disappear.

Nothing could be further from the truth.

Reed was my best friend. He was my air, my heart, my purpose, my joy, and my strength. Losing him shattered me in ways I can't fully put into words.

The reason I keep going isn't because I'm stronger than anyone else. It's because I know Reed would want me to keep living.

He would want me to laugh again. He would want me to experience the things he no longer can. He would want me to carry his memory forward and make the most of the life I still have.

If you were in my shoes, you would find a way too—not because the pain would be smaller, not because the love would be less, you'd carry it with you every single day.

So the next time you see a grieving parent finding a way to move forward, please remember this:

Surviving does not mean we loved less.

Continuing to live does not mean our hearts aren't broken.

Finding a way forward does not mean we left our child behind.

It simply means we are carrying an unimaginable love and an unimaginable loss at the same time.

05/16/2026

Some rides are about the miles. This one is about love, memories, and carrying Reed with us every step — and pedal — of the way. This year, our RAGBRAI ride means even more. We’re riding for Reed.
For his joy.
For his laughter.
For the way he brought people together everywhere he went.

We have teamed up with Takeover Sales Custom Apparel to make a fun shirt similar to our bike jerseys for RAGBRAI, Whether you’re riding, cheering from home, or just love a fun Reed shirt 😉💚 every shirt represents love, support, and the incredible village that continues to surround us.🚴‍♂️💚

Orders can be shipped directly to you or picked up at our house in Jesup.

PLEASE NOTE: Jesup pickup and shipping are the only available fulfillment options for the store.

The Team Reed RAGBRAI store will close on July 1st, so be sure to get your orders in before then! 💚

*** All pickup orders will be completed approximately 1.5–2 weeks after the store closes.

https://takeoversales.myshopify.com/collections/team-reed

(I know I normally make our shirts but we wanted to make a full color option and I just don't have the setup for that)

05/08/2026

Most of you know that 7 years ago, Reed and I started dreaming about bringing a splash pad to our community. Thanks to the support, generosity, and kindness of so many people in Jesup that dream became of reality, three summers ago.

The splash pad was always one of Reed’s fun places. It was a fun, inclusive space where him to be like the other kids. I can still hear the belly laughs from him.

After Reed’s passing last fall, the City of Jesup honored him by renaming the park “Reed’s Park.” It means to us to know his name and spirit will continue to live on in a place filled with joy and laughter.

Over the past several months, Papa Scott and I have been working on one more addition to the park — a little library. Today, we were able to install it and fill it with books and DVDs for families to enjoy.

We hope that Reed’s Park continues to be a place of happiness, inclusion, community, and love for years to come. We hope you and your families will enjoy the splash pad, the little library, and all the beautiful moments made there. 💚

City of Jesup
Jesup IA Splash Pad