Sorry, Not Sorry

IMG_20141204_141939A few months after Bella was diagnosed with autism, I was on the phone with my health insurance company.  Calling your insurance company is the hazing all new special needs parents experience when they’re just beginning to pledge this crazy fraternity/sorority.  It’s our secret handshake, our “thank you sir, may I have another [representative to talk to because you’re a jackass and I suspect you don’t actually know what you’re talking about]?”  I should have followed my gut instinct that told me to hang up and call back when I heard the guy’s voice, but I gave him the benefit of the doubt.  He pulled up my information and then asked why I was calling.

“I have a question about our coverage.  My daughter was recently diagnosed with autism.”

“Oh, I’m sorry.”

I paused for a beat, completely taken aback by his apology.  I was used to hearing people respond with, “okay,” or “uh huh.”  He said, “I’m sorry,” as if she had been diagnosed with a horrible terminal disease.  I shook my head and said, “Um, thanks, but she’s fine,” before I continued with my question, which he answered incorrectly in the most condescending tone I’ve ever heard from an insurance customer service rep (and trust me, I’ve talked to a large enough sample size to make this statement statistically sound).  But it wasn’t his rudeness that bothered me the rest of the day; it was his response when I told him about Bella’s diagnosis.

I understand that this guy (apart from being a douche) wasn’t trying to offend.  He probably meant well with his apology, or maybe it was just a reflex from talking to people all day long about devastating illnesses.  But the idea that someone should apologize to me for Bella’s diagnosis, that they should feel bad for me or feel like they needed to extend their condolences was a totally foreign idea to me.

IMG_20141224_205326Listen to me very carefully: I am not sorry.  Sure, I have moments where I think about what Bella’s life might be like if she weren’t autistic.  The idea that certain things in life will always be hard for her, like making new friends, makes me sad sometimes.  I mean, no parent is happy about the idea that their child will have to struggle with things that come easily to most kids.  I wish she could have a simple conversation with her sisters about anything at all that was longer than one or two sentences. Sometimes I can see an entire conversation bubbling in her mind, but she can’t get it all out because of the invisible shell that surrounds her, trapping some thoughts and letting others escape through cracks and holes here and there.

But here’s the rub: to wish away Bella’s autism is to wish away the Bella that we know and love.  It would mean wishing away the most sincere, genuine person I have ever known.  It would mean wishing away Bella’s unique view of the world, her way of thinking that is so maddeningly different from everyone else and yet, once you understand it, is so damn brilliant I can’t help but marvel at my little genius.  It would mean wishing away her innocent frankness, the way she does whatever she wants without giving a shit about what people think of her, her irresistible charm that makes everyone immediately love her.

To love Bella is to love her autism.

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So thanks, but I’m not sorry about Bella’s autism.

Parenting an autistic child isn't easy, but it's also pretty amazing! These special kids are full of surprises. Read more about the daily struggles and lessons special needs parents experience when parenting a child with autism.

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13 Responses to Sorry, Not Sorry

  1. I am not sorry you are the best momma bear. <3 Ellen

  2. I love the way you describe your sweet girl. Nothing to be sorry about. She’s a doll. xoxo

  3. When our son was diagnosed last year I got messages from family members telling me the same thing, “I’m sorry.” One even said, “I don’t understand we just saw him.” I had to explain he had autism when they saw him, he didn’t just catch it and that he wasn’t dying so there was no need to say sorry. At least you could hang up on the idiot, I have to look at mine over the Thanksgiving table and try not to throw my food at them.

    • Hahahaha “we just saw him,” like he caught a cold or something. People do mean well, but you’re absolutely right — they’re not dying, we just have a name for what was going on all along and a path to help figure out what to do to help everyone get to their happiest version of themselves.

  4. Meredith says:

    I think this is so beautiful, Janel. Bella is gorgeous exactly as she is and so are you. xo.

  5. Anne says:

    That’s an uneducated person for you. They don’t know enough about it so they treat it like a major illness. I love this post.

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