I’m not one to be at a loss for words, but for nearly a year now, I’ve been struggling to speak. Struggling to find the right combination of words to begin to express all that is swirling.
My mother is incredible. Maybe that’s why it’s been so hard to put this all into words. How do you capture the soul of someone who is so vast? Someone who, for all my life, has been limitless.
In the stories she tells, she always paints herself the gentle, humble worker. But to me, she’s the hero.
Heros shouldn’t die. Maybe that’s why I’ve been silent. How do you claim a diagnosis that you don’t understand? Words like rare, and, early onset, and clinical trial are not easy to say. And it’s a whole other thing to watch as these words trickle into your reality. And try as we might, git our teeth, dig in our heels, here we are. This is our reality. Who knew two acronyms could change your life?
Why? is such an incredibly hard question to answer. Right after Mama’s diagnosis, I desperately sought a reason and felt deflated because there was none to be found. Am I a horrible person for questioning? Do I lack faith because I’m afraid? Is it weak to wonder why?
For a year, I’ve been praying for things that feel too unreal to pray for. But I am praying, and fighting, and clinging to all the goodness left as I continue to ask why.
I will never get an answer, not a full one at least. But I’ve seen glorious glimmers of hope. Closing doors, ending relationships, pieces of the puzzle coming together. People pouring love, students reaching out, kind, simple words. Maybe Why doesn’t matter so much as how and God has shown me that He will work things out.
I won’t get my answer. Why my best friend, my biggest supporter, my fearless champion, is battling dementia. But my God is good and He’s been teaching me that why is better left alone. That faith can be found in the wandering. That plans are overrated. And that love shows up when you need it the most.
Maybe that’s why.