One Month In

We’re officially one month into this nightmare. Is it considered an accomplishment? Maybe. I know it's a challenge nobody wants to enter.

This week, we made the drive to Rochester, Minnesota, for a consultation at Mayo Clinic. The memories flooded back on that familiar road. I couldn’t help but think of all the feats Kara has already overcome in her life.

People often ask about Kara’s disability diagnosis, and the truth is, there isn’t one. We know there’s a deletion on one of her chromosomes, but that’s where the answers end. Over the years, she’s gone through countless tests, and we’ve always lived with so many unknowns.

We were told she might never walk because of low muscle mass. Kara skipped crawling altogether and scooted around on her butt so efficiently that it became her signature mode of travel. The day she took her first steps was the first time I cried tears of joy and started to believe in more possibilities for her future.

We were told she has partial blindness, that may be true - but to this day, I haven’t met anyone who can spot a restaurant off the interstate faster than she can. As for her life expectancy? Doctors weren’t sure. And honestly, I found comfort in that. Not knowing your life expectancy is, after all, a universal condition.

When she was 15, we returned to Mayo for more genetic and neurological testing. Over the years, we’ve seen countless doctors, leaving many appointments with more questions than answers. Despite it all, I’ve always recognized how lucky we were that her health issues were relatively minor compared to others with disabilities. I’ll forever be grateful for those good years, especially now.

I thought all that experience navigating the medical system would prepare me for this. But maybe it’s the emotions of grappling with this new reality. Maybe it’s the urgency of her disease clashing with the overwhelming demands on medical teams. Or maybe it really is just a broken system. Whatever the reason, I know this: we are exhausted.

I’ve been thinking a lot about hope and where it comes from. There’s this visual that keeps replaying in my mind as we’ve been hit with one piece of bad news after another.

It’s like I’m carrying a bouquet of balloons, each one filled with hopes and dreams for Kara and me. When we got the call about her breast cancer diagnosis, it was like I let go of one of those balloons. I wanted a life without cancer for her, but that balloon was gone.

Then came the news of the spread to the lymph nodes. It felt like someone snipped the string of another balloon. Fine. I still had more to carry.

When the PET scan results came in, showing the cancer had spread, it felt like several balloons were popped at once and the rest are deflated. Those balloons carried my dreams of her future—the kind of home and life I had envisioned and been building for us.

I’m interrupting my metaphor here to tell you I burst into tears writing this part. Kara asked why I was crying, and I told her I was just so emotional. That made her laugh hysterically.

I can’t explain the relief I felt, seeing how my tears made her laugh instead of making her more nervous. We laughed together through my tears. Then she asked if I wanted a Dr. Pepper. When I said yes, she decided it would make me feel better and ran to grab one from the fridge.

Okay, back to the damn balloons...

By the time we got to Mayo, my balloons were totally deflated. There were fewer of them to carry, but keeping them from dragging on the ground felt impossible. Mayo offered new balloons, with no promises of how long I’d get to hold onto them or how full they could be.

Now, I’m desperate to find air for her joy and happiness balloons, trying to return the favor for the 30 years of her filling mine. I just wish I could take all the air escaping from my stupid, leaking balloons and transfer it to hers.

A Small Burst of Hope

If you’re still with me, here’s the state of affairs as of today: Mayo gave us treatment options and really grim statistics on outcomes I can't get myself to write about here. No path will be easy, and the choice ahead is one we can only pray on and listen to our hearts.

Yet, late in the day, I got a couple of bursts of air for my balloons. We learned that Kara is eligible for immunotherapy with chemotherapy. There was a chance her PD-L1 score wouldn’t be high enough, but at 40, it’s solid.

In the same surprising way her cancer case has shocked every provider she’s seen, we are praying and clinging onto hope that her body will respond to the drugs and beat the odds—just like she has her entire life.