It has been just over 5 weeks since we got the ALS diagnosis, and I have to admit, other than Sam’s death, this has been the hardest 5 weeks of my life. We still are exhausted, scared and frustrated. We also are completely and totally surrounded by love and support, which we so appreciate.

We have made a point to “stop and smell the flowers” as much as we can during this time, trying to focus on the positives, the love, the time together, the laughter. We’ve taken more walks, spent time with people we love, and pushed ourselves out of comfort zones.

What have we learned? We have learned to advocate for ourselves when systems don’t work for us. We have learned it is okay to say when we are not okay. We have learned how to admit that some topics are terrifying to broach. We have learned anew that love is all that matters.