Living with Chiari is challenging, but I think living with a just-turned-13 boy-man is harder. Neither is impossible, but both call out the best and the worst in me.
Sometimes Chiari steals a day, or a run of days, from me. Crippling pain in my head and body make it difficult to get out of bed, let alone tackle the day. But sometimes Chiari is just annoying to me, to us. It’s a dull ache that makes me a little irritable but it doesn’t stop me from living. I try to keep my mood in check, but God knows I don’t always succeed.
Sometimes I wonder if I’m crazy for thinking we can build this life of raising our own food, having a small farm, living in the country. Sometimes I feel held back. But then I am reminded that sometimes my limitations give way to absolute focus. I cannot continue to say yes to everything. I have to say no to many things, so I can say yes to the best things. And I think the more we learn how to pack nutrients into meals, with locally grown, pesticide/herbicide free foods, the better I hope to feel.
And then we add a dose of humor – something to help us get through, over, past the hardest of days, and something to help us smile through the inconvenient days.
When I first found out I had Chiari, I couldn’t help but explain that my brain is falling out of the back of my head. But as I heard myself saying that aloud one day, I realized how crude it sounded. I shivered. I wasn’t trying to be crass, or act like it’s the end of the world. I was just struggling with a new diagnosis and what it meant for us.
It became a joke in our house to use a “K” sound word and say it was out of whack (kaleidoscope), parked funny (Cadillac), or some other funny “not in the right place” joke. Not because Chiari is really a joke, but because laughing it off and moving forward, looking toward the best days, making wise use of them, and finding out how I can use the harder days are what keep me moving.
I write that like it’s all me. Hardly. It’s all Jesus – the hope I have in Christ and this temporary condition, are what really keep me moving. I know God is using this time, my story, my life, and even Chiari, for HIS perfect will. I submit. Some days I grumble, some days I long to do more than I can, some days are harder than others. But regardless, I submit.
I don’t know what hard thing you’re walking through, but what I do know is that Jesus can carry you through. And a little humor can make hard days a little easier to endure.