From Delight to Crap

Recently, we took the whole crew to the human trough, also known as Golden Corral. Our oldest was busy, but we also had our married daughter, her husband, and baby, so eleven of us.

This visit, I decided to let Bo (9yo with Ds/ASD) come with me to fix his plate so he could make his own choices. He was ecstatic and delighted in carefully making selections of all the foods he loves. I noticed, like our neurotypical kids, his plate of food was all in the same color family…from beige to bright orange which made me smile. He wasn’t a fan of the fried shrimp he chose, but he loved the sweet potato casserole for which we got seconds.

Like all kids, dessert is where his true passion lies and he was in heaven with all the choices. After looking the selection over carefully, he finally landed on a chocolate cupcake with pink frosting which he quickly devoured and was rewarded with another one. After he finished that one, he noticed his brother, Eon, had just returned to the table with an exact duplicate. He very excitedly pointed and showed everyone around that Eon had a cupcake. At first, I thought he wanted Eon’s, but it soon became clear that he was just excited someone else was going to enjoy the thing he loved. He mimicked each bite his brother took with excited clapping in between. If he could speak, it was so obvious he would’ve been saying, “Isn’t it amazing? That frosting is so good! Don’t you love it?”

As empathy is a skill he has not yet mastered, we were delighted with his delight for his brother. We were all smiling and laughing. I winked at my husband and when I looked back over to Bo, his whole hand was suddenly covered in poop. It took a second before we comprehended what we were seeing. Then, the whole table erupted with cries of, “EW, ICK!” from the younger kids. I dove for my purse that had the wipes in it and hastily wiped it all off, while my dear husband prepared to scoop him off to the van for a change of pull-up.

Immediately, I was horrified and embarrassed, although I tend to roll with these things pretty well and it didn’t take me too long to laugh it off.

I share this story because it is so typical of our life with disability. We have very high highs, followed a split second later by very low lows. Usually, as in this case, we have a great sense of humor and are able to bounce back pretty quickly. But sometimes, it’s a lot and more than a little overwhelming. I know that we are not alone in this experience (okay, maybe we are in this particular experience, but I’m speaking more generally.) I know of many great families who are currently dealing with the “lot” part of parenting kids with disabilities.

I don’t have answers on how to live in daily bliss with these types of challenges. I’m not great at keeping my cool when a child is knocking over chairs and threatening to upend the dining room table. I could use some work on how to calmly endure backseat spitting when a sibling is losing their shit over it. I definitely need some tips on how to keep my sanity when the one thing that calms Bo is his favorite youtube videos of children shrieking and behaving badly.

The only thing I do know is that this life has given me a new lens. I see the world differently. I see people as more valuable. I am more convinced of Imgago Dei in everyone, regardless of ability, class, education, choices, behavior, or status.

I recognize that everyone has a story to which I’m not privy. I can and should withhold judgment, always. Acceptance, inclusion, and unconditional love are key. I have a much deeper understanding of grace and now recognize that everyone needs it including, maybe especially, myself.

Delight and crap seem to be the two speeds of my life right now and, as always, there is grace for that.

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