Mother of Little Boy with SBS Battles Ignorance With Education

It sounds like a cliché to say that “becoming a parent changes everything.” Probably because it is a cliché. But as a parent, I know it also happens to be 100% true. The prism through which you view your entire life bursts with a wild new spectrum of colors the moment you make eye contact with the little eyeballs you helped create—damn, I made eyeballs! (More accurately, my wife made eyeballs, along with a brain, heart, lungs, etc.; I only helped. A very little bit.)

With a new life comes new priorities—at no time before or after in your life will you take such joy in a pants-load full of poo.

Something else that changes is the way you perceive things, particularly when it comes to how children are treated… or mistreated. Call it parental empathy or mama/papa bear instinct, but when you’re a parent, you understand there are certain circumstances where nothing would give you more pleasure then planting your foot up the ass of every prick who makes a careless, callous remark to a child.

Recently, this parental instinct was stirred from its slumber when I read about the experiences of Crystal Noe, a contributor to The Mighty who writes about her son’s experiences with Short Bowel Syndrome (or SBS).

As a quick reminder: SBS occurs when there has been some trauma resulting in the loss of large sections of the bowel and the remaining bowel has difficulty absorbing enough nutrients from food. This is hard enough for adults who can comprehend and vocalize when something isn’t right with their body.

Now imagine how difficult it must be for your infant.

Crystal’s son was born with his stomach and intestines outside of his body, and spent seven months in the hospital. He didn’t learn to eat by mouth until much later, and even then it was challenging because he gagged easily. At the same time, Crystal noticed he wasn’t growing or putting on weight, but it took another five years to get an SBS diagnosis.

Today, with a diagnosis and a treatment plan in place, Crystal can focus on helping her son get the nutrition he needs. Mystery solved, happy ending, right?

Well, not quite. From the time Crystal brought her child home, he’s been marked out as and made to feel different. It started with the hate mail she received—yes, you read that right, hate mail—from ignorant chuckleheads telling her she must have done something wrong when she was pregnant, and ergo she should die.

Later, the attention shifted to her son and what he was doing “wrong”: He was a picky eater, a brat for spitting his food into his napkin (rather than choking on it like a good little boy?). Crystal was asked why she didn’t “make him” sit down and clean his plate. And perhaps worst of all, the people asking “what’s wrong with him?”

Explaining the complexities of a condition like SBS is probably wasted breath on people who think it’s perfectly acceptable to stroll up and tell mothers everything they’re doing wrong.

But, unlike your dear author, Crystal has put her anger and disappointment to more productive use. Rather than raging at the people around her, she’s writing about her experiences to educate others about what she and her son live with every day. Her writing is a great way to reset your perspective on what is and isn’t important, and a reminder to be thankful for what you have. It’s well worth a moment of your time to read—just leave the anger and raging to lesser people like me!

Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

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