Day 12 in our “hotel hospital” has arrived.

It’s been rough—no sense in pretending otherwise. But even in the hardest moments, there have been beautiful memories, tiny glimmers of grace that remind us that blessings can rise out of pain and suffering. That has always been my goal for as long as I can remember: to find the beauty and the purpose, even in the darkest valleys. And truthfully, Reiff and I have witnessed this time and time again with our little family.

This weekend, after 7 days of working tirelessly to help Malachi through his pain, fear, post-surgery recovery, and the fight against a massive infection (brain/meningitis, chest, bloodstream)—I finally broke. Friday hit differently. My heart simply reached its limit.

I usually hold everything tight, keep it neat and contained, focus on the present moment, and let hope and faith steer me forward. But right after writing my last update post, the hospital Chaplain unexpectedly walked into our room (something that has never happened before). He came to help Malachi navigate his feelings and spiritual needs. As he spoke, I listened quietly… but when the conversation shifted to Malachi's concern for his baby sister, it pierced a very deep place in me.

I couldn’t hold myself together anymore.

I grabbed my things and headed to the car. I needed to breathe. I needed to release. I hit record—something I never do—and nothing came out. I was overwhelmed, undone. Tears filled every part of me. And I let it upload as worship music played over the moment.

Many of you saw that Instagram post. Many of you sent messages filled with such love and compassion. Thank you. That kind of Vulnerability is not something I often share publicly, but the truth is… our son was fighting for his life. Everything in our world shifted instantly. AGAIN. Life is taking another turn for our kids as they continue their fight against Batten’s… against being immune-compromised… against their own bodies. And once again, Reiff and I must pivot, regroup, and create a new “normal.”

Our fight for our children started long before either of them was diagnosed. After diagnosis, you get so much love and support—but as time passes, people move on. They fall away, they get busy, they don’t reach out. But for us… for families with two Batten-fighting siblings… life does not get easier. Our need for support actually grows stronger.

💔 Batten’s is cruel.
It slowly takes away nearly everything—walking, seeing, speaking, thinking. Our two young adults now face:

Feeding tubes

Blindness

Dementia, MS, and Parkinson’s symptoms combined

Tremors

Wheelchairs and canes

Endless medical supplies

Life-saving treatments

Total dependency

And all of it… is times two.

But today—we have PRAISE.
Malachi is officially INFECTION FREE.
His cultures remain clear. He is finally out of the woods he once fought so fiercely in.
NO PICC line surgery needed. 🙌

We still have long-term concerns. The toll this took on his body is significant, and another surgery is scheduled.

Today, Malachi heads back in for brain-to-chest port surgery—our first major goal.
Recovery will be tricky. We’re still managing the aftermath of meningitis and the infection, the loss of his Brineura drug, the steroids, and all the medication adjustments pre- and post-surgery. A new long-term pain management plan is also needed.

I’ve never seen him vomit like this… he’s lost so much weight. Getting him stable again and restarting brain infusions is our top priority heading into winter.

So this holiday season—2025—will look very different.
No big cooking for Thanksgiving.
No big family gatherings.
No huge holiday events.

Maybe it’s a one-hour community visit.
Maybe it’s a wheelchair stroll through the mall, or a car ride to look at lights.
Maybe it’s cartoons in bed with our ESA animals snuggling up beside him.
Maybe it’s holiday movies on repeat.

Whatever it is… this is our new normal. This is how we protect our babies.

Reiff and I want to say from  our hearts—THANK YOU.
First my family always ready to show up they know this life, they taught me what it means to SHOWUP, LOVE, SUPPORT, CHERISH, and value life period. People who truly know me know I would do the same!
To our friends, and even strangers—your kindness has been overwhelming.
Whether it was financial support, emotional support, spiritual support, XL sweatshirt cause me and Maleea are so COLD Support, Blankets support meal card support,  laughter is medicine support, to driving over the pass to cut hair support,  serious conversations support, caring for our homestead and furry babies support,  raking leaves, unpacking our new home suppor  , (because life always piles on when you move), or text trying to help, or suppor  to simply sending voice messages from across the world and in the US—especially from other Batten fighting sibling families fighting their own battles with this diease, to those who aren't fighting cln2, but cln7, cln8, no matter what CLN it is...its all TERRIBLE.  It makes any simple cold, flu, infection 1000% worse having this F%$#* diease.

To even a childhood friend & her family reaching out in support, To those who wrote letters to Reiff during his men’s retreat (amazing).
To everyone who has held us up—you know who you are. 🧡

We feel you. We appreciate you. We are grateful.

Next update will be post-surgery.
He’s been delayed 3 hours, so we’re hoping he heads to the OR around 2-ish now.

Please continue praying.
Your love is carrying us.