Our annual visit with Soraya’s neuromuscular doctor came and went… the mood was somber and noticeably different from years past.

We left our first try at the test feeling really defeated, and I couldn’t quite put my finger on why.

We were READY for Soraya’s metabolic cart test... but there were more than a few challenges.

It seems like as Soraya’s health declines, the amount of heavy conversations we have to have only grows.

Soraya’s main question for the doctor? Whether her declining physical strength is a reflection that her “due date” (death) is near.

So while I am in my recovery era, it seems we are in another phase of change for Soraya.

I anticipated being humbled by the recovery process after my surgery... but I had no clue it would stir up so many feelings about Soraya.

Many people like to take this time to reflect on the year. For us, looking back is sometimes too painful knowing Soraya’s health is worse…

There were a LOT of things I wasn’t expecting or just hadn’t thought about prior to surgery.

For us it brings up memories of years before, traditions lost, and more seasons of change.

There are quite a few of Soraya’s adaptive items that have been SO helpful as I recover from surgery.

It’s the night before my surgery and I’m terrified. I feel like I have a HUGE exam tomorrow and need to cram!

While we’ve started having discussions about end-of-life care and Soraya’s wishes, I hadn’t really thought about what that would look like for the rest of my family until recently.

It’s time to get real. We had a wonderful Hawaii trip AND there were some hard, sad moments.

I am learning that anticipation doesn’t make the pain of the loss go away, and things that I didn’t even realize could make me feel so sad absolutely CAN.

SURPRISE!!! Soraya and our family won the 2024 National Lori Schultz-Betancourt Indomitable Spirit Award from Make-A-Wish America!

Soraya’s nights have been filled with deep thoughts, isolation, and loneliness recently…

After such an emotional week, it’s been good to think about what keeps us going as a family. One of the most helpful ways we have learned to put one foot in front of the other is therapy.

This disc with the chemical powder that magically dries the g-tube site and allows Soraya to heal is INCREDIBLE. Soraya is in less pain and we are now able to use a Farrell Bag—meaning we can sleep in more than 2-hour chunks!!!!

Friday marks November 1st, and my bilateral mastectomy and reconstruction is on December 11th. Reality has set in and I’m deep in planning mode while also trying to process some unexpected (and frankly scary) news I got about my health last week…