I lost this past weekend, consuming the hours in bed under the covers while my family went on without me.
The past few days, I’ve been in a flare of my nasty, autoinflammatory friend, Behcet’s Disease. She is a constant companion, ever surprising, and generally unresponsive to the most aggressive of treatments. While I’m loathe to use the “h” word, I can tell you I do, in fact, hate her.
Following a seemingly benign trip to the dentist, my mouth exploded into a crop of ulcers and bleeding gums that literally started to shed their skin. I couldn’t eat or drink. I was bedbound with a fever. What corked me most was that I lost two days with my family: I lost an opportunity to watch Noah’s football game, attend a fall carnival, go to church – anything a mother might look forward to at the end of a long week because the five of us could temporarily replace the “have to do’s” with the “want to do’s.” I was laid low.
While all my children were gentle and deferential during this time, Noah’s extra kindnesses truly surprised me. They probably always will, considering the deficit from which he originally started.
Early on in the diagnostic process, Noah failed the “theory of mind” test that is often a clue into an underlying autism spectrum disorder. This test indicates an autistic’s inability to consider viewpoints other than their own, a type of “mind blindness” that sparks investigation into the social impairments that are a hallmark of children on the autism spectrum.
While we haven’t totally overcome Noah’s deficits in this area, his tenderness toward me this weekend was almost worth the pain I had to endure to witness it. Almost.
Noah brought me a bagel with peanut butter on it, a glass of juice, and this note, written on a napkin in blue marker:
“I hope you fell [sic] well. I love you. Noah.”
I cringed when I saw the food, knowing that a bagel and a glass of juice may as well have been a bowl of razor blades and a vial of boric acid for as good as they were going to feel going down. But I pulled him to my side and hugged his pajama-clad body, telling him how much I appreciated his kindness, and for thinking of how I felt during this time.
Ecclesiates 4:9-10: “Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up.”
Noah recognized I was laid low, and he reached out a hand to pull me up.
Small but mighty victory.
- Sarah


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