Team Reed-Fighting VWM

09/24/2026

You know how weird grief can be at times, like being sad about a toilet. We had to replace Reed’s bathroom toilet recently and I never realized how many memories a toilet could have for me. From Reed’s smaller seat being on there, to potty breaks and knocking on the wall to get Daddy’s attention, and Dad doing a crazy dance to the toilet bowl cleaners (look them up on YouTube) to distract Reed while we “waited”, honestly so many hours spent there but that toilet meant something to me, it meant some normalcy, and most importantly it meant empowerment for Reed because he could use it. And weirdly replacing it has made me sad.

09/19/2026

Reed,
21 months of missing you. I hate the way time keeps moving us further away from when you were here, from the last time we got to hold you. But I also find some joy in the passing of time knowing that it is one day closer to being back with you. I know on our last day we told you over and over again that the time would feel so short for you and so long for us. And that is how I want it to be. I want you to blink and we are together again, snuggling on my lap.

I had an extra hard day this week. I found myself watching videos of you and gosh, they hurt. Not just the joyful videos, seeing your smile and hearing your voice again, but also the hard videos from that last year when everything declined so fast. Seeing now the things we missed then is so hard. We were so much in survival mode that I was blind to so much of your decline.

I kept thinking over and over again how much I would do anything to have you back. And I would. But I would never want you back in that last year. And that is a hard lump to swallow for me. I say I would take the hard days back again, and I would, but I wouldn’t want those days for you. So much pain and so many struggles that you fought so hard to get through.

I hope you and GG are living it up together. I’m sure he finally got to buy you the bike he always talked about getting you since the day you were born. I can’t wait to see you riding it. I’m sure it is a green bike. I know you have had your other great-grandparents there with you, but you knew GG the best, and I am glad he is with you now. That brings me some peace.

Daddy and I keep living and moving forward. That’s all we can do. We keep ourselves as busy as we can. It helps us not get lost in our thoughts and sadness.

Volleyball has started, and I love coaching your classmates. You would be so proud of them. They are so good, and I know you would love watching them play. I can’t wait to see them continue to grow over the next few years.

Daddy turned 40 this month, and while he wasn’t all that excited about it, we celebrated with a long bike ride in Des Moines. That was exactly what he wanted to do for his birthday.

I guess that is all for this month. I’ll update you with everything after month 22, but I’ll always talk to you in my thoughts. Thank you for continuing to send me signs of you, I see you lots in everyday life now, 1111.

Love you too. See you soon.
Mommy

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.