Bring on the Research! Happy for ALS

I am so happy all this attention for ALS has come from an accidental, viral social media game. It means (for the most part) people are open to learning new things and that we can find the good in people. It’s also an impressive example that good can come out of my beloved digital world.Continue reading “Bring on the Research! Happy for ALS”

Another night at the Castle

So the update that goes with these happy photos is this: we thought we might go home today because she has been doing so well we don’t even have an IV anymore. (She managed to kill or pull out all 3 in 4 days). But we will stay another night to be safe. It wasContinue reading “Another night at the Castle”

Mommy rant: Hospital Livin’

My view. Let’s just say ICU rooms aren’t designed for the parents. Somewhere over there beyond the cords and electrical stalactites is my daughter. And I get it.. It’s about her not me. It’s about the nurses and doctors who need to give her what she needs. But it’s still annoying that I can’t seeContinue reading “Mommy rant: Hospital Livin’”

Something new to worry about

Our planned surgery is next Tuesday. Thought it would never get here. As I can’t say it enough, again, thank you to everyone who has helped us big and small. It’s been a wonderful month overall.  We’ve been able to spend so much quality time together as a family and even when Reese has hadContinue reading “Something new to worry about”

Getting Spoiled

Someone is really spoiled. Since we got home from brain surgery, she’s been sleeping in our bed parts of every night for obvious reasons. Now she seems to have decided she should start out here and save us all the time of getting up. And the guilt kicks in. I’ve held her down and letContinue reading “Getting Spoiled”

Peace at the end of a long day

We waited 7.5 hours today to find out how our baby handled brain surgery. They called to give us an update every hour or so, but that’s still an insane amount of time to wait.  Good news is she is such a fighter, they say it was a “beautiful” surgery and we have survived partContinue reading “Peace at the end of a long day”

Ready

It’s all in the lines. Skips, jumps, hills and mountains. Nothing. Everything. Waves, even and steady. Your breathing, not your brain. And my heart it falls. My lungs lose air. Frozen. Terrified. Ready. Ready??? There is no such thing. I fail you. I’m not strong enough. Crashing, reeling. My emotions, not the waves, not you.Continue reading “Ready”

Doing Epilepsy Month in style

We think about epilepsy every day. And yet, it’s good to still have a month to think about it, as a message, rather than as a disease, life-threatening illness, never-ending challenge, burden….. I could keep going.  Here we are 16 months into our journey, and I am trying to be committed to doing more forContinue reading “Doing Epilepsy Month in style”