When Others Use the Word ‘Defect’ to Describe My Son’s Diagnoses


“Defect.”

I hate that word more than any other in the dictionary. I hate it even more than the word “moist.” And that’s a lot of hate.

I’m never prepared to hear this word. After almost a year and a half, it always — no matter where I am or who I’m talking to — hits me like a ton of frickin’ bricks. I cringe inside while keeping an engaged, attentive facial expression when well-meaning friends or family members try to describe the conditions my son, Maxwell, was born with to outsiders or situational newcomers.

Christina Lewis’s son, Maxwell.
Christina’s son, Maxwell.

Google the word “defect,” and you’ll find it defined as “a shortcoming, imperfection, or lack.” Some other synonyms include, but are not limited to: fault, flaw, imperfection, deficiency, weakness, weak spot, inadequacy, shortcoming, limitation, failing.

I shudder. Not because I don’t like these words, but because none of them apply to him, and it’s scary to think that people generally associate “defect” with all of these other negative terms. None of it defines him. None. If you get down to it, no one is perfect, but generally, people don’t let those imperfections define them. My son’s “defects” don’t cause limitations or failings. If anything, he exceedingly surpasses all expectations given the circumstances.

My baby boy, my Maxwell, is the opposite of everything a “defect” is. Strength, in its personified form. Advantageous in nature. Perfection.

Maxwell is the epitome of determination. He was born with amniotic band syndrome (ABS) and an encephalocele, the latter of which was a lump of tissue and fluid attached to the lining of his brain, which protruded about three-fourths of an inch out of his skull.

ABS left him with six fused fingers and a thumb and a half. Only two of his fingers are considered “normal.” He underwent two major surgeries in his first year of life: brain surgery to remove the encephalocele and double hand surgery to separate his fingers.

He’s the strongest person I know. I adore him more than any words could describe. The odds of him being born with these two unrelated issues (so we’ve been told they’re unrelated) is one in 150,000,000. Yes, the number of zeroes is correct. One in 150 million. My kid isn’t one in a million. He’s one in 150 of those. He is extraordinary.

Maxwell is not “defective” — he’s different. Or as my good friend Google defines it in three separate definitions, “not the same as another or each other,” or “distinct; separate,” or my personal favorite, “novel and unusual.”

My son is novel. He’s not the same as you, and he’s not even the same as me, his mother. Isn’t that what most parents tell their children and try to instill in them all their lives?

“You are unique.”

“You are one of a kind. Separate yourself from the crowd.”

“It’s OK to be different.”

There is power in differences. Differences help us to persevere when things don’t go the way we want them to. Differences help us find solutions to various challenges. Differences can help us be better human beings. The word “defect” might imply “weakness,” and sometimes even shame because it’s assumed that perfection hasn’t been achieved.

But in my Maxwell — in my sweet, kind, adorable, rough-and-tumble, strong and persevering little boy — it has been achieved beyond measure. He is perfect. He is different. He is my son.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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